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Help for Patients & Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
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CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
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Help for Patients and Caregivers : Alzheimers

Safety: Steps to Enhancing Your Home
Safety: Steps to Ensuring Safety
How to Be a Long-Distance Caregiver


Safety: Steps to Enhancing Your Home

Modifying the Environment
When caring for an individual with Alzheimer's disease at home, safety and accessibility can be important concerns. The person may experience changes in:

  • Judgment (forgets how to use familiar household appliances and equipment properly)
  • Orientation to time and place (gets lost on her own street or is unable to recognize or find areas in the home)
  • Behavior (becomes easily confused, suspicious or fearful)
  • Physical Ability (Has trouble with balance, or depends on a walker or wheelchair for mobility)
  • Senses (experiences changes in vision, hearing sensitivity to temperatures and depth perception)

With some creativity, flexibility and problem-solving, the home can be adapted to support these changes. This article provides simple steps to make the home safe and supportive for the individual with Alzheimer's.

Before modifying your home, consider the following:
Assess the environment. Identify possible hazards by looking at your home through the eyes of an individual with Alzheimer's. What objects could cause the person injury? Can the person easily get outdoors or access dangerous areas such as the kitchen, garage or basement?

Focus on adapting rather than teaching. Avoid reteaching the person with Alzheimer's about safety issues. Instead, identify potential risks and take the appropriate precautions.

Simplify the activities. Most accidents, especially in the area of personal care, occur when the person with Alzheimer's is rushed. Break activities into simple, step-by-step tasks allowing her plenty of time to complete them. Giving extra assistance, such as laying out clothes in the order that they are put on, will also help her with simple tasks that have become hard to do.

Support the person's needs. Try not to create an environment that is too restrictive. The home should encourage independence, social interaction and activities that are meaningful.

Be realistic about what you can do. You will never be able to prevent every problem. Rely on your common sense while paying close attention to objects or activities that could be dangerous.


CREATING A SAFE ENVIRONMENT

Once you have identified potential safety problems, take the following steps to modify your home.

MAKE POTENTIALLY DANGEROUS PLACES LESS ACCESSIBLE
The person with Alzheimer's may be at risk if she has access to certain areas of the home or the outdoors. The following action steps will help to make potentially dangerous areas more difficult to access:

Lock or disguise hazardous areas. Cover doors and locks with a painted mural or cloth. Use "Dutch" doors, swinging doors or folding doors to hide entrances to the kitchen, stairwell, workroom and storage areas.

Install locks out of sight. Place deadbolts either high or low on exterior doors to make it difficult for the person with Alzheimer's to wander out of the house. Keep an extra set of keys hidden near the door for easy accessibility. Remove locks in bathrooms or bedrooms so she is not able to lock herself inside.

Use special safety devices.
Child-proof locks and door knobs can help limit access to places where knives, appliances, equipment, cleaning fluids and other poisonous products are stored. Use automatic shut-off devices for appliances such as an iron, toaster oven and coffee maker.

Accommodate Visual Changes. As the disease progresses, changes in vision may make it difficult for the person to distinguish colors and understand what is being seen. Consider the following:
Diffuse bright light. Reduce glare by removing or covering mirrors, and glass-top or highly polished furniture. Cover windows with blinds, shades or sheer draperies to block bright sunlight. Avoid using bare light bulbs or clear "decorator" bulbs without shades. Taking these action steps may help to reduce agitation in the person with Alzheimer's.

Create an even level of lighting. Add extra lighting in entries, outside landings, areas between rooms, stairways and bathrooms because changes in levels of light can be disorienting to the individual with Alzheimer's.

Use different colors. Place contrasting colored rugs in front of doors or steps to help the individual anticipate staircases and room entrances. However, avoid using very dark colored rugs since it may be perceived as a hole. Apply colored decals to glass doors and large windows because she may think they are open doors.

Install special lighting. Use night lights in hallways, bedrooms and bathrooms to prevent accidents and reduce disorientation, especially if the person wanders. Illuminated light switches and timers for lights in these areas can also assist her at night.

BEWARE OF HAZARDOUS OBJECTS AND SUBSTANCES

Even the most basic appliance or household object can become dangerous to the person with Alzheimer's. To reduce risk of injury:
Limit the use of certain appliances and equipment. Remove electrical appliances such as an electric razor or a hairdryer, from the bathroom to reduce the risk of electrical shock.
Put away kitchen appliances and equipment including knives, mixers, grills, guns, lawn mowers or power tools, since the person may not remember how to use them safely. Also, consider removing the knobs on the stove or installing a hidden gas valve or circuit breaker so she can not turn on the stove.

Supervise smoking and alcohol consumption. Keep an eye on the person who uses cigarettes, cigars or pipes because she may not realize the dangers related to smoking. Monitor consumption of alcohol because it can have many negative effects, especially when mixed with medication.
Be prepared for the unexpected. Persons with Alzheimer's have been known to eat items such as small rocks, dirt, plants, flowers and bulbs. Take precaution by removing toxic plants and any decorative fruits (wax, plastic, etc.) that the person may think are real. Also, remove vitamins, prescription drugs, sugar substitutes and seasonings from the kitchen table and counters.
Keep the refrigerator safe. The person with Alzheimer's may not be able to distinguish the difference between fresh and rotten food. Clean out the refrigerator regularly and discard inedible food. Keep foods that are safe to eat in the front of the refrigerator and at eye level where she can easily see them.

Keep walking areas clear. Remove objects, such as magazine racks, coffee tables and floor lamps, to create safe wandering areas and reduce the possibility of injury.

AVOID INJURY DURING DAILY ACTIVITIES

Since a majority of accidents in the home occur during daily activities such as bathing, toileting, and eating, it is important to take special precautions.

Monitor temperatures. As the disease progresses, the person may have a decreased sensitivity to temperature. Consider setting hot water heaters at 120 degrees and installing automatic-mixing or anti-scalding devices to the faucets. Meanwhile, help her mix hot and cold water, and always turn off hot water first when finished. Also, it is important to check the temperatures of foods before serving to make sure that they are not too hot or too cold to consume.

Prevent falls. Install walk-in showers and grab bars in the shower or tub and at the edge of the vanity to enable the person to move around safely and independently. Shower seats and commode chairs are also helpful if she has limited mobility. Add textured decals to slippery surfaces and apply adhesives to keep throw rugs and carpeting in place, or remove them completely. Place padding on the edge of counters and bathroom fixtures if they are sharp.

Supervise taking prescription and over-the-counter medications. The person may experience many difficulties related to medication use, either forgetting to take them, or taking too much. Consider using locked pill dispensers operated on a self-timer to assist her. Make medicine or kitchen cabinets less accessible by installing locks.

CREATING A SUPPORTIVE ENVIRONMENT

While it is important to make the environment safe, it is equally important to create an atmosphere that supports the changing needs of the individual with Alzheimer's.

Encourage independent movement. Eliminate hazardous objects, limit access to danger-points such as stairwells, kitchens and outside doors so the person can move safely and independently. If necessary, make room to accommodate walkers and wheelchairs.

Involve the person in activities. Let her participate in preparing meals, rinsing the dishes, folding clothes, raking leaves and other activities with your supervision. These activities enhance self-esteem and make her feel more valued around the home.

USE SURROUNDINGS TO INITIATE ACTIVITIES
Leave out scrapbooks, photo albums or old magazines that help the person to reminisce and encourage conversation. Try using music the person once enjoyed in the past to prompt activities such as dancing, clapping or other types of exercises. It is important, however, to keep the noise level to a minimum since loud distracting sounds may cause agitation.

Create access to the outdoors.

Encourage the person to enjoy supervised outdoor activities such as gardening or walking. A backyard with a fence allows her to safely go outside on her own. If she is unable to go outdoors, consider doing indoor activities in a room with many windows or on an enclosed porch.

Be prepared for emergencies.

Keep a list of emergency phone numbers and addresses for the local police and fire departments, hospitals and poison control helplines. Check fire extinguishers and smoke alarms, and conduct fire drills on a regular basis.

If the person has a tendency to wander, enroll her in the Alzheimer's Association's Safe Return program. The program is a nationwide system designed to identify, locate and return to safety persons who are memory impaired

TIPS FOR CREATING A SAFE AND SUPPORTIVE ENVIRONMENT

Kitchen

  • Lock up cleaning supplies
  • Turn off electricity to the garbage disposal
  • Hide knives and other utensils
  • Put away the toaster, blender, and any small appliances
  • Unplug larger appliances such as the microwave
  • Remove knobs from stove or hook up stove to a hidden gas valve or electric switch
  • Keep fire extinguisher nearby
  • Clean out refrigerator regularly

Bathroom

  • Set water temperature at 120 degrees
  • Install grab bars
  • Apply textured decals on slippery surfaces
  • Supervise the use of hairdryers, electric and hand razors
  • Remove locks from the bathroom door
  • Discard dangerous items from the medicine chest

Bedroom

  • Avoid using electric blankets
  • Monitor use of heating pads
  • Install night lights between the bedroom and bathroom

Garage

  • Put away hand and power tools such as drills, axes, saws and picks
  • Limit access to large equipment such as a lawnmower, weedwacker and snowblower
  • Lock up poisonous products such paints and fertilizers

Throughout the home

  • Disguise outdoor locks or install deadbolts
  • Remove or tape down throw rugs and carpeting
  • Apply colored decals to large windows and sliding glass doors
  • Remove poisonous plants
  • Create an even level of lighting near doorways, stairways and between rooms
  • Remove object that block walking paths

Outdoors

  • Disconnect gas grills
  • Lock gates to fences
  • Supervise the person in areas that are not enclosed
  • Put away car keys


ALZHEIMER'S ASSOCIATION: SOMEONE TO STAND BY YOU
The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers. For more information call: (800) 660-1993

http://www.alzoc.org

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Safety: Steps to Ensuring Safety

Preventing Wandering and Getting Lost
When someone with Alzheimer's disease wanders and becomes lost, it is a frightening experience that puts that person at risk for serious or fatal injury. This article offers ways to prevent unsafe wandering and to prepare for an emergency situation.
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Wandering can be aimless or purposeful roaming that can cause a person to become lost, leave a safe environment, or intrude in inappropriate places.

Wandering is one of the most frequent and challenging problems that caregivers face.
Seven of every ten people with dementia will wander and become lost during the course of the disease, and most will do so repeatedly.

Someone with Alzheimer's disease may not only wander by foot but also by car or other mode of transportation.

Understanding Wandering

Wandering may be triggered when a person with Alzheimer's:

  • no longer recognizes familiar people, places, and objects
  • feels lost in a new or changed environment
  • tries to fulfill former obligations, such as going to work or taking care of a child
  • takes medications that have side effects such as restlessness and confusion
  • tries to relieve stress caused by noise, crowds, or isolation .
  • is restless due to lack of physical activity
  • is fearful of unfamiliar sights, sounds, or hallucinations
  • searches for something specific such as food, drink, the bathroom, or companionship
  • looks for a way out of the home
  • experiences confusion at certain times of the day or night

Preventing Wandering
It is hard to predict when a person will wander and become lost. However, caregivers can take steps to prevent wandering incidents.

Structure the Day
Establishing a daily routine that includes meaningful activities and sufficient physical exercise can help lessen wandering behavior. Ask the person to help with simple household activities such as sweeping the floor or folding clothes. Also try playing familiar music and dancing or taking walks together outdoors.

Making Your Home Safe
To prevent unsafe exits from the house or backyard, place door and window locks out of sight and reach, either very high or very low. Use a double-bolt door lock, and keep the key handy in case there is an emergency. You may also want to:

  • install high-tech devices such as electronic buzzers or bells to signal when a door is opened or place a pressure-sensitive mat at the door or person's bedside that sounds an alarm to alert you to movement.
  • put hedges or a fence around your patio or yard and be sure to place locks on any gates.
    Inform Your Community

Talk to Your Neighbors
Alert your neighbors about the person's condition, and keep a list of their names and telephone numbers. Ask that they call you if they see the person outdoors without supervision. Also inform others such as the doorman in your apartment building or staff in the senior residence or retirement community where your loved one resides.

Involve Your Local Police
Tell your local police about your loved one's potential for wandering. Advise them that the Alzheimer's Association has a national Safe Return program to help police locate or return someone who is lost from wandering.

Survey the Neighborhood
Identify dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops, high balconies, and heavy traffic roads. Check these places first if someone becomes lost.

Be Prepared For A Wandering Incident
Take steps in advance to prepare yourself in the event that your loved one becomes lost.
Gather Important Information

Having reliable and accurate information will help those involved in a search:

  • Post the Alzheimer's Association checklist of what to do when the person in your care becomes lost.
  • Keep a list of the person's age, height, weight, hair color, blood type, eye color, identifying marks, medical condition, medication, dental work, jewelry, allergies, and complexion.
  • Make multiple copies of a recent close-up photograph.
  • Make a list of places the person may go, such as familiar walking routes, former neighborhoods, places of worship, workplaces, or favorite places.
  • Keep scented clothing on hand to give to police. Wearing plastic gloves, store a piece of the person's unwashed clothing in a bag where it will not be disturbed. Replace it monthly to retain the scent.
  • Make a list of possible dangerous areas you have identified in the neighborhood.

Register in the Safe Return Program
One of the most serious worries for a caregiver is whether the wandering person will return home safely. The Alzheimer's Association Safe Return program is the only nationwide system that helps identify, locate, and return individuals with Alzheimer's and related disorders who wander and become lost.

Safe Return provides:

  • Identification products for the memory-impaired, including a bracelet or necklace, clothing labels, and wallet ID card. These products alert others that the individual is memory-impaired and may need assistance and also list the Safe Return 24-hour crisis number.
  • Registration in a national database including important information that can be accessed quickly when someone wanders and gets lost. This information can be critical in helping law enforcement agencies and others in their search.
  • Connection to more than 200 community-based Alzheimer's Association Chapters across the country that offer assistance and support. Some chapters have scholarship programs to help pay for the registration fee.

To register:
Complete a Safe Return registration form. To obtain a copy, contact your local Alzheimer's Association: call (800) 660-1993 or download the form from the Association's Web site.

Tips to Prevent Wandering

  • Check to see if the person is hungry, needs to go to the bathroom, or feels uncomfortable.
  • Encourage movement and exercise to reduce anxiety and restlessness.
  • Involve the person in daily activities such as folding laundry or preparing a meal.
  • Remind the person that you know how to find him and that he's in the right place.
  • Reduce noise levels and confusion.
  • Reassure the person who may feel lost, abandoned, or disoriented.
  • Alert police ahead of time that you care for a person with dementia.
  • Make a plan of what to do if the person becomes lost.

Additional Resources

The following materials are available from your local chapter or the national office of the Alzheimer's Association:

  • Just the Facts and More-Wandering
  • Steps to Planning Activities: Structuring the Day at Home
  • Steps to Enhancing our Home: Modifying the Environment
  • Steps to Enhancing Communication: Interacting with Persons with
  • Alzheimer's disease
  • Services You May Need Fact Sheet
  • Safe Return Brochure
  • Alzheimer's Disease: A Guide for Law Enforcement Officials

The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers.

Founded in 1980 by family caregivers, the Alzheimer's Association has more than 200 chapters nationwide providing programs and services, including support groups, to assist Alzheimer families in their communities. The Association is the leading funding source for Alzheimer's research after the federal government.

Information on Alzheimer's disease, current research, caregiving techniques, and assistance for caregivers is available from the Alzheimer's Association. For more information call: (800) 660-1993.

http://www.alzoc.org/support

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How to Be a Long-Distance Caregiver

I am miles away.
If you are caring for someone who lives far away, you are not alone. Currently, more than six million Americans are long-distance caregivers.

Long-distance caregiving for someone with Alzheimer's disease can be especially difficult. Concerns about your loved one's safety, nutrition, health and care may seem overwhelming. You may also feel guilty and anxious because you cannot be there every day to see how the person is doing. However, with the right mix of services, ongoing coordination and support, long-distance caregiving can work.

How can I help?

How do I know what services are needed?
Visit the person with Alzheimer's disease to determine what kind of assistance he or she may need. Make the following observation:
  • Is there appropriate and adequate food available?
  • Is the person eating regular meals?
  • What is the condition of the living environment? Has it changed?
  • Are the bills paid?
  • Do friends and relatives visit regularly?
  • Is the person maintaining personal care routines such as bathing and grooming?
  • Is the person still able to drive safely?

    If you are unable to answer these questions, the person's doctor, neighbors, family members and friends can be good sources of information.

    How do I make the most of my visits?

    Few long-distance caregivers are able to spend as much time with their loved one as they would like. The key is to make periodic visits and use your time effectively:
  • Make appointments with your loved one's physician, lawyer, and financial adviser during your visit so you can facilitate the making of important decisions.
  • Meet with neighbors, friends, and other relatives so they can share their observations about how the person is doing. Ask if there have been any behavioral changes, health problems, or safety issues.
  • Take time to reconnect with your loved one by talking, listening to music , going for a walk, or doing other activities you enjoy together.

    What support systems are available?

    There are many individuals and organizations that can help you locate and arrange appropriate services for your loved one.
  • Alzheimer's Association chapters provide information on caregiving, referrals to local services, a Helpline , and support groups. To locate the chapter nearest you, call (800) 660-1993.
  • Geriatric care managers can help assess the individual's needs, identify local services, and work with physicians, attorneys, and other professionals to oversee and coordinate care. For more information, call the National Association of Professional Geriatric Care Managers at (520) 881-8008.
  • Eldercare Locator is a free service provided by the U.S. Administration on Aging to help find local resources such as adult day programs, respite care elder abuse/ protective agencies, Medicaid/MediCal information, and transportation. To learn more, call (800) 677-1116 or call your local Chapter.
  • Home health care workers can be hired to help the person with bathing, toileting, preparing meals, and taking medication. Call your local chapter of the Alzheimer's Association for more information.
  • The local Area Agency on Aging (AAA) has services to help with long-distance caregiving, such as home observation programs. Check with your AAA to see what programs are available in your area.

    Who else can I turn to for support?
    Establishing an informal support system can help ensure the person's safety and give you peace of mind.
  • Family members and friends can provide companionship. Ask them to visit once a week or so, depending on how far away they live.
  • Neighbors can regularly check on your loved one. Ask if they will remain alert to anything unusual such as the smell of smoke or the sound of an alarm coming from your relative's home.
  • Community organizations such as churches, synagogues, neighborhood groups, and volunteer organizations often provide companion services.

    What if I need to take time off from my job?
    Sometimes you may need to take time off from work to resolve a crisis, accompany your loved one to a doctor's appointment, or address a pressing legal or financial matter.
    With more than three million working Americans caring for elderly parents, both government agencies and private businesses are trying hard to meet the needs of caregivers.
    The Family and Medical Leave Act (FMLA) entitles eligible employees to take up to
    twelve weeks unpaid leave. Check with your employee benefits department to see if you are covered by FMLA. Also be sure to ask them about the benefits provided by your state.

    Should I move the person with Alzheimer's disease to my home?
    The decision to move the person to your home is influenced by many factors. Here are some things to think about before moving the person into your home:
  • Does he or she want to move? What about his or her spouse?
  • Is your home equipped for this person?
  • Will someone be at home to care for the person?
  • How does the rest of the family feel about the move?
  • How will this move affect your job, family and finances?
  • What respite services are available in your community to assist you?
    Moving a person with Alzheimer's disease from familiar surroundings may cause increased agitation and confusion. In making the decision, you may want to talk with your loved one's physician or a social worker or call your local Alzheimer's Association chapter for assistance. In some situations, an assisted living or a residential care setting may be a better option for the individual.

    What if I care for a person who lives in a care facility?

    Whether your loved one lives in an assisted living or residential care facility, it is important to maintain ongoing communication with the care staff and friends who visit regularly. Here are some suggestions:
  • Work with the managing nurse and physician. Agree on a time when you can call to get updates on the person's condition.
  • Call family, friends, or other visitors and ask for their observations.
  • When you visit, meet with the staff members who care for the person most.

    What if I am not the primary caregiver?
    The primary caregiver may be a spouse, sibling, or another relative that lives with or close to the person with Alzheimer's. As a long-distance family member, supporting the primary caregiver is one of the most important things you can do. Here are some ways to help:
  • Stay in close touch with both the caregiver and the person with Alzheimer's through telephone calls, cards, e-mail, etc.
  • Recognize that the primary caregiver must make final decisions. He or she provides the daily care and is usually the best person to decide what needs to be done.
  • Take on caregiving tasks. You can help by handling bills, completing insurance forms, making phone calls, and finding out what support services are available in the caregiver's community.
  • Plan periodic visits to give the caregiver a break. You can spend time with the individual or run errands for the caregiver.

    How do I deal with family conflicts?
    It is possible that the primary caregiver may feel resentment toward you for living far away or believe you are not helping enough. And you may disagree with the caregiver's decisions or feel shut out. To minimize conflicts, try to acknowledge these feelings and work through them. Here are some suggestions:
  • Have a family meeting. Talking about caregiving roles and responsibilities, problems and feelings can help ease tensions. You may want help from a professional counselor or clergy.
  • Recognize differences. Some family members may be hands-on caregivers, responding immediately to issues and organizing resources. Others may be more comfortable with being told to complete specific tasks.
  • Share caregiving responsibilities. Make a list of tasks and include how much time, money, and effort may be involved to complete them. Divide tasks according to the family member's preferences and abilities.
  • Continue to communicate. Periodic family meetings or conference calls keep the family up-to-date and involved. Discuss how things are working, reassess the needs of both the person with Alzheimer's and the caregiver, and decide if any changes in responsibilities are needed.

    What additional resources are available?
    The following resources are available from your local chapter or the national office of the Alzheimer's Association:
  • Respite Care guide: How to Find What's Right for You
  • Steps to Understanding Legal Issues: Planning for the Future
  • Steps to Understanding Financial Issues: Resources for Caregivers
  • Steps to Enhancing Communication: Interacting with Persons with Alzheimer's disease
  • Residential Care: A Guide for Choosing a New Home

    The Alzheimer's Association is the only national voluntary organization dedicated to conquering Alzheimer's disease through research and to providing information and support to people with Alzheimer's disease, their families, and caregivers.
    Founded in 1980 by family caregivers, the Alzheimer's Association has more than 200 chapters nationwide providing programs and services, including support groups, to assist Alzheimer families in their communities. The Association is the leading funding source for Alzheimer's research after the federal government.
    Information on Alzheimer's disease, current research, caregiving techniques, and assistance for caregivers is available from the Alzheimer's Association. For more information or to locate the chapter nearest you call: (800) 660-1993.

http://www.alzoc.org/support

 

 

Help for Patients and Caregivers : Seizures and Epilepsy

Few experiences match the drama of a convulsive seizure. A person having a severe seizure may cry out, fall to the floor unconscious, twitch or move uncontrollably, drool, or even lose bladder control. Within minutes, the attack is over, and the person regains consciousness but is exhausted and dazed. This is the image most people have when they hear the word epilepsy. However, this type of seizure -- a generalized tonic-clonic seizure -- is only one kind of epilepsy. There are many other kinds, each with a different set of symptoms.

Epilepsy was one of the first brain disorders to be described. It was mentioned in ancient Babylon more than 3,000 years ago. The strange behavior caused by some seizures has contributed through the ages to many superstitions and prejudices. The word epilepsy is derived from the Greek word for "attack." People once thought that those with epilepsy were being visited by demons or gods. However, in 400 B.C., the early physician Hippocrates suggested that epilepsy was a disorder of the brain -- and we now know that he was right.

What is Epilepsy?
What Causes Epilepsy?
What Are the Different Kinds of Seizures?
What Are the Different Kinds of Epilepsy?
When Are Seizures Not Epilepsy?
How is Epilepsy Diagnosed?
Can Epilepsy be Prevented?
How can Epilepsy be Treated?
What To Do If You See Someone Having a Seizure

Where can I get more information?


What is Epilepsy?

Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. Neurons normally generate electrochemical impulses that act on other neurons, glands, and muscles to produce human thoughts, feelings, and actions. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior, or sometimes convulsions, muscle spasms, and loss of consciousness. During a seizure, neurons may fire as many as 500 times a second, much faster than the normal rate of about 80 times a second. In some people, this happens only occasionally; for others, it may happen up to hundreds of times a day.

More than 2 million people in the United States -- about 1 in 100 -- have experienced an unprovoked seizure or been diagnosed with epilepsy. For about 80 percent of those diagnosed with epilepsy, seizures can be controlled with modern medicines and surgical techniques. However, about 20 percent of people with epilepsy will continue to experience seizures even with the best available treatment. Doctors call this situation intractable epilepsy. Having a seizure does not necessarily mean that a person has epilepsy. Only when a person has had two or more seizures is he or she considered to have epilepsy.

Epilepsy is not contagious and is not caused by mental illness or mental retardation. Some people with mental retardation may experience seizures, but seizures do not necessarily mean the person has or will develop mental impairment. Many people with epilepsy have normal or above-average intelligence. Famous people who are known or rumored to have had epilepsy include the Russian writer Dostoyevsky, the philosopher Socrates, the military general Napoleon, and the inventor of dynamite, Alfred Nobel, who established the Nobel Prize. Several Olympic medalists and other athletes also have had epilepsy. Seizures sometimes do cause brain damage, particularly if they are severe. However, most seizures do not seem to have a detrimental effect on the brain. Any changes that do occur are usually subtle, and it is often unclear whether these changes are caused by the seizures themselves or by the underlying problem that caused the seizures.

While epilepsy cannot currently be cured, for some people it does eventually go away. One study found that children with idiopathic epilepsy, or epilepsy with an unknown cause, had a 68 to 92 percent chance of becoming seizure-free by 20 years after their diagnosis. The odds of becoming seizure-free are not as good for adults or for children with severe epilepsy syndromes, but it is nonetheless possible that seizures may decrease or even stop over time. This is more likely if the epilepsy has been well-controlled by medication or if the person has had epilepsy surgery.

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What Causes Epilepsy?

Epilepsy is a disorder with many possible causes. Anything that disturbs the normal pattern of neuron activity -- from illness to brain damage to abnormal brain development -- can lead to seizures.

Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, or some combination of these factors. Researchers believe that some people with epilepsy have an abnormally high level of excitatory neurotransmitters that increase neuronal activity, while others have an abnormally low level of inhibitory neurotransmitters that decrease neuronal activity in the brain. Either situation can result in too much neuronal activity and cause epilepsy. One of the most-studied neurotransmitters that plays a role in epilepsy is GABA, or gamma-aminobutyric acid, which is an inhibitory neurotransmitter. Research on GABA has led to drugs that alter the amount of this neurotransmitter in the brain or change how the brain responds to it. Researchers also are studying excitatory neurotransmitters such as glutamate.

In some cases, the brain's attempts to repair itself after a head injury, stroke, or other problem may inadvertently generate abnormal nerve connections that lead to epilepsy. Abnormalities in brain wiring that occur during brain development also may disturb neuronal activity and lead to epilepsy.

Research has shown that the cell membrane that surrounds each neuron plays an important role in epilepsy. Cell membranes are crucial for a neuron to generate electrical impulses. For this reason, researchers are studying details of the membrane structure, how molecules move in and out of membranes, and how the cell nourishes and repairs the membrane. A disruption in any of these processes may lead to epilepsy. Studies in animals have shown that, because the brain continually adapts to changes in stimuli, a small change in neuronal activity, if repeated, may eventually lead to full-blown epilepsy. Researchers are investigating whether this phenomenon, called kindling, may also occur in humans.

In some cases, epilepsy may result from changes in non-neuronal brain cells called glia. These cells regulate concentrations of chemicals in the brain that can affect neuronal signaling.

About half of all seizures have no known cause. However, in other cases, the seizures are clearly linked to infection, trauma, or other identifiable problems.

Genetic Factors

Research suggests that genetic abnormalities may be some of the most important factors contributing to epilepsy. Some types of epilepsy have been traced to an abnormality in a specific gene. Many other types of epilepsy tend to run in families, which suggests that genes influence epilepsy. Some researchers estimate that more than 500 genes could play a role in this disorder. However, it is increasingly clear that, for many forms of epilepsy, genetic abnormalities play only a partial role, perhaps by increasing a person's susceptibility to seizures that are triggered by an environmental factor.

Several types of epilepsy have now been linked to defective genes for ion channels, the "gates" that control the flow of ions in and out of cells and regulate neuron signaling. Another gene, which is missing in people with progressive myoclonus epilepsy, codes for a protein called cystatin B. This protein regulates enzymes that break down other proteins. Another gene, which is altered in a severe form of epilepsy called LaFora's disease, has been linked to a gene that helps to break down carbohydrates.

While abnormal genes sometimes cause epilepsy, they also may influence the disorder in subtler ways. For example, one study showed that many people with epilepsy have an abnormally active version of a gene that increases resistance to drugs. This may help explain why anticonvulsant drugs do not work for some people. Genes also may control other aspects of the body's response to medications and each person's susceptibility to seizures, or seizure threshold. Abnormalities in the genes that control neuronal migration -- a critical step in brain development -- can lead to areas of misplaced or abnormally formed neurons, or dysplasia, in the brain that can cause epilepsy. In some cases, genes may contribute to development of epilepsy even in people with no family history of the disorder. These people may have a newly developed abnormality, or mutation, in an epilepsy-related gene.

Other Disorders

In many cases, epilepsy develops as a result of brain damage from other disorders. For example, brain tumors, alcoholism, and Alzheimer's disease frequently lead to epilepsy because they alter the normal workings of the brain. Strokes, heart attacks, and other conditions that deprive the brain of oxygen also can cause epilepsy in some cases. About 32 percent of all cases of newly developed epilepsy in elderly people appears to be due to cerebrovascular disease, which reduces the supply of oxygen to brain cells. Meningitis, AIDS, viral encephalitis, and other infectious diseases can lead to epilepsy, as can hydrocephalus -- a condition in which excess fluid builds up in the brain. Epilepsy also can result from intolerance to wheat gluten (also known as celiac disease), or from a parasitic infection of the brain called neurocysticercosis. Seizures may stop once these disorders are treated successfully. However, the odds of becoming seizure-free after the primary disorder is treated are uncertain and vary depending on the type of disorder, the brain region that is affected, and how much brain damage occurred prior to treatment.

Epilepsy is associated with a variety of developmental and metabolic disorders, including cerebral palsy, neurofibromatosis, pyruvate dependency, tuberous sclerosis, Landau-Kleffner syndrome, and autism. Epilepsy is just one of a set of symptoms commonly found in people with these disorders.

Head Injury

In some cases, head injury can lead to seizures or epilepsy. Safety measures such as wearing seat belts in cars and using helmets when riding a motorcycle or playing competitive sports can protect people from epilepsy and other problems that result from head injury.

Prenatal Injury and Developmental Problems

The developing brain is susceptible to many kinds of injury. Maternal infections, poor nutrition, and oxygen deficiencies are just some of the conditions that may take a toll on the brain of a developing baby. These conditions may lead to cerebral palsy, which often is associated with epilepsy, or they may cause epilepsy that is unrelated to any other disorders. About 20 percent of seizures in children are due to cerebral palsy or other neurological abnormalities. Abnormalities in genes that control development also may contribute to epilepsy. Advanced brain imaging has revealed that some cases of epilepsy that occur with no obvious cause may be associated with areas of dysplasia in the brain that probably develop before birth.

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What Are the Different Kinds of Seizures?

Doctors have described more than 30 different types of seizures. Seizures are divided into two major categories -- focal seizures and generalized seizures. However, there are many different types of seizures in each of these categories.

Focal Seizures

Focal seizures, also called partial seizures, occur in just one part of the brain. About 60 percent of people with epilepsy have focal seizures. These seizures are frequently described by the area of the brain in which they originate. For example, someone might be diagnosed with focal frontal lobe seizures.

In a simple focal seizure, the person will remain conscious but experience unusual feelings or sensations that can take many forms. The person may experience sudden and unexplainable feelings of joy, anger, sadness, or nausea. He or she also may hear, smell, taste, see, or feel things that are not real.

In a complex focal seizure, the person has a change in or loss of consciousness. His or her consciousness may be altered, producing a dreamlike experience. People having a complex focal seizure may display strange, repetitious behaviors such as blinks, twitches, mouth movements, or even walking in a circle. These repetitious movements are called automatisms. More complicated actions, which may seem purposeful, can also occur involuntarily. Patients may also continue activities they started before the seizure began, such as washing dishes in a repetitive, unproductive fashion. These seizures usually last just a few seconds.

Some people with focal seizures, especially complex focal seizures, may experience auras -- unusual sensations that warn of an impending seizure. These auras are actually simple focal seizures in which the person maintains consciousness. The symptoms an individual person has, and the progression of those symptoms, tend to be stereotyped, or similar every time.

The symptoms of focal seizures can easily be confused with other disorders. For instance, the dreamlike perceptions associated with a complex focal seizure may be misdiagnosed as migraine headaches, which also may cause a dreamlike state. The strange behavior and sensations caused by focal seizures also can be istaken for symptoms of narcolepsy, fainting, or even mental illness. It may take many tests and careful monitoring by an experienced physician to tell the difference between epilepsy and other disorders.

Generalized Seizures

Generalized seizures are a result of abnormal neuronal activity on both sides of the brain. These seizures may cause loss of consciousness, falls, or massive muscle spasms.

There are many kinds of generalized seizures. In absence seizures, the person may appear to be staring into space and/or have jerking or twitching muscles. These seizures are sometimes referred to as petit mal seizures, which is an older term. Tonic seizures cause stiffening of muscles of the body, generally those in the back, legs, and arms. Clonic seizures cause repeated jerking movements of muscles on both sides of the body. Myoclonic seizures cause jerks or twitches of the upper body, arms, or legs. Atonic seizures cause a loss of normal muscle tone. The affected person will fall down or may drop his or her head involuntarily. Tonic-clonic seizures cause a mixture of symptoms, including stiffening of the body and repeated jerks of the arms and/or legs as well as loss of consciousness. Tonic-clonic seizures are sometimes referred to by an older term: grand mal seizures.

Not all seizures can be easily defined as either focal or generalized. Some people have seizures that begin as focal seizures but then spread to the entire brain. Other people may have both types of seizures but with no clear pattern.

Society's lack of understanding about the many different types of seizures is one of the biggest problems for people with epilepsy. People who witness a non-convulsive seizure often find it difficult to understand that behavior which looks deliberate is not under the person's control. In some cases, this has led to the affected person being arrested oradmitted to a psychiatric hospital. To combat these problems, people everywhere need to understand the many different types of seizures and how they may appear.

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What Are the Different Kinds of Epilepsy?

Just as there are many different kinds of seizures, there are many different kinds of epilepsy. Doctors have identified hundreds of different epilepsy syndromes -- disorders characterized by a specific set of symptoms that include epilepsy. Some of these syndromes appear to be hereditary. For other syndromes, the cause is unknown. Epilepsy syndromes are frequently described by their symptoms or by where in the brain they originate. People should discuss the implications of their type of epilepsy with their doctors to understand the full range of symptoms, the possible treatments, and the prognosis.

People with absence epilepsy have repeated absence seizures that cause momentary lapses of consciousness. These seizures almost always begin in childhood or adolescence, and they tend to run in families, suggesting that they may be at least partially due to a defective gene or genes. Some people with absence seizures have purposeless movements during their seizures, such as a jerking arm or rapidly blinking eyes. Others have no noticeable symptoms except for brief times when they are "out of it." Immediately after a seizure, the person can resume whatever he or she was doing. However, these seizures may occur so frequently that the person cannot concentrate in school or other situations. Childhood absence epilepsy usually stops when the child reaches puberty. Absence seizures usually have no lasting effect on intelligence or other brain functions.

Temporal lobe epilepsy, or TLE, is the most common epilepsy syndrome with focal seizures. These seizures are often associated with auras. TLE often begins in childhood. Research has shown that repeated temporal lobe seizures can cause a brain structure called the hippocampus to shrink over time. The hippocampus is important for memory and learning. While it may take years of temporal lobe seizures for measurable hippocampal damage to occur, this finding underlines the need to treat TLE early and as effectively as possible.

Neocortical epilepsy is characterized by seizures that originate from the brain's cortex, or outer layer. The seizures can be either focal or generalized. They may include strange sensations, visual hallucinations, emotional changes, muscle spasms, convulsions, and a variety of other symptoms, depending on where in the brain the seizures originate.

There are many other types of epilepsy, each with its own characteristic set of symptoms. Many of these, including Lennox-Gastaut syndrome and Rasmussen's encephalitis, begin in childhood. Children with Lennox-Gastaut syndrome have severe epilepsy with several different types of seizures, including atonic seizures, which cause sudden falls and are also called drop attacks. This severe form of epilepsy can be very difficult to treat effectively. Rasmussen's encephalitis is a progressive type of epilepsy in which half of the brain shows continual inflammation. It sometimes is treated with a radical surgical procedure called hemispherectomy (see the section on Surgery). Some childhood epilepsy syndromes, such as childhood absence epilepsy, tend to go into remission or stop entirely during adolescence, whereas other syndromes such as juvenile myoclonic epilepsy and Lennox-Gastaut syndrome are usually present for life once they develop. Seizure syndromes do not always appear in childhood, however.

Epilepsy syndromes that are easily treated, do not seem to impair cognitive functions or development, and usually stop spontaneously are often described as benign. Benign epilepsy syndromes include benign infantile encephalopathy and benign neonatal convulsions. Other syndromes, such as early myoclonic encephalopathy, include neurological and developmental problems. However, these problems may be caused by underlying neurodegenerative processes rather than by the seizures. Epilepsy syndromes in which the seizures and/or the person's cognitive abilities get worse over time are called progressive epilepsy.

Several types of epilepsy begin in infancy. The most common type of infantile epilepsy is infantile spasms, clusters of seizures that usually begin before the age of 6 months. During these seizures the infant may bend and cry out. Anticonvulsant drugs often do not work for infantile spasms, but the seizures can be treated with ACTH (adrenocorticotropic hormone) or prednisone.

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When Are Seizures Not Epilepsy?

While any seizure is cause for concern, having a seizure does not by itself mean a person has epilepsy. First seizures, febrile seizures, nonepileptic events, and eclampsia are examples of seizures that may not be associated with epilepsy.

First Seizures

Many people have a single seizure at some point in their lives. Often these seizures occur in reaction to anesthesia or a strong drug, but they also may be unprovoked, meaning that they occur without any obvious triggering factor. Unless the person has suffered brain damage or there is a family history of epilepsy or other neurological abnormalities, these single seizures usually are not followed by additional seizures. One recent study that followed patients for an average of 8 years found that only 33 percent of people have a second seizure within 4 years after an initial seizure. People who did not have a second seizure within that time remained seizure-free for the rest of the study. For people who did have a second seizure, the risk of a third seizure was about 73 percent on average by the end of 4 years.

When someone has experienced a first seizure, the doctor will usually order an electroencephalogram, or EEG, to determine what type of seizure the person may have had and if there are any detectable abnormalities in the person's brain waves. Thedoctor also may order brain scans to identify abnormalities that may be visible in the brain. These tests may help the doctor decide whether or not to treat the person with antiepileptic drugs. In some cases, drug treatment after the first seizure may help prevent future seizures and epilepsy. However, the drugs also can cause detrimental side effects, so doctors prescribe them only when they feel the benefits outweigh the risks. Evidence suggests that it may be beneficial to begin anticonvulsant medication once a person has had a second seizure, as the chance of future seizures increases significantly after this occurs.

Febrile Seizures

Sometimes a child will have a seizure during the course of an illness with a high fever. These seizures are called febrile seizures (febrile is derived from the Latin word for "fever") and can be very alarming to the parents and other caregivers. In the past, doctors usually prescribed a course of anticonvulsant drugs following a febrile seizure in the hope of preventing epilepsy. However, most children who have a febrile seizure do not develop epilepsy, and long-term use of anticonvulsant drugs in children may damage the developing brain or cause other detrimental side effects. Experts at a 1980 consensus conference coordinated by the National Institutes of Health concluded that preventive treatment after a febrile seizure is generally not warranted unless certain other conditions are present: a family history of epilepsy, signs of nervous system impairment prior to the seizure, or a relatively prolonged or complicated seizure. The risk of subsequent non-febrile seizures is only 2 to 3 percent unless one of these factors is present.

Researchers have now identified several different genes that influence the risk of febrile seizures in certain families. Studying these genes may lead to new understanding of how febrile seizures occur and perhaps point to ways of preventing them.

Nonepileptic Events

Sometimes people appear to have seizures, even though their brains show no seizure activity. This type of phenomenon has various names, including nonepileptic events and pseudoseizures. Both of these terms essentially mean something that looks like a seizure but isn't one. Nonepileptic events that are psychological in origin may be referred to as psychogenic seizures. Psychogenic seizures may indicate dependence, a need for attention, avoidance of stressful situations, or specific psychiatric conditions. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. Other people who have psychogenic seizures do not have epilepsy at all. Psychogenic seizures cannot be treated in the same way as epileptic seizures. Instead, they are often treated by mental health specialists.

Other nonepileptic events may be caused by narcolepsy, Tourette syndrome, cardiac arrythmia, and other medical conditions with symptoms that resemble seizures. Because symptoms of these disorders can look very much like epileptic seizures, they are often mistaken for epilepsy. Distinguishing between true epileptic seizures and nonepileptic events can be very difficult and requires a thorough medical assessment, careful monitoring, and knowledgeable health professionals. Improvements in brain scanning and monitoring technology may improve diagnosis of nonepileptic events in the future.

Eclampsia

Eclampsia is a life-threatening condition that can develop in pregnant women. Its symptoms include sudden elevations of blood pressure and seizures. Pregnant women who develop unexpected seizures should be rushed to a hospital immediately. Eclampsia can be treated in a hospital setting and usually does not result in additional seizures or epilepsy once the pregnancy is over.

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How is Epilepsy Diagnosed?

Doctors have developed a number of different tests to determine whether a person has epilepsy and, if so, what kind of seizures the person has. In some cases, people may have symptoms that look very much like a seizure but in fact are nonepileptic events caused by other disorders. Even doctors may not be able to tell the difference between these disorders and epilepsy without close observation and intensive testing.

EEG Monitoring

An EEG records brain waves detected by electrodes placed on the scalp. This is the most common diagnostic test for epilepsy and can detect abnormalities in the brain's electrical activity. People with epilepsy frequently have changes in their normal pattern of brain waves, even when they are not experiencing a seizure. While this type of test can be very useful in diagnosing epilepsy, it is not foolproof. Some people continue to show normal brain wave patterns even after they have experienced a seizure. In other cases, the unusual brain waves are generated deep in the brain where the EEG is unable to detect them. Many people who do not have epilepsy also show some unusual brain activity on an EEG. Whenever possible, an EEG should be performed within 24 hours of a patient's first seizure. Ideally, EEGs should be performed while the patient is sleeping as well as when he or she is awake, because brain activity during sleep is often quite different than at other times.

Video monitoring is often used in conjunction with EEG to determine the nature of a person's seizures. It also can be used in some cases to rule out other disorders such as cardiac arrythmia or narcolepsy that may look like epilepsy.

Brain Scans

One of the most important ways of diagnosing epilepsy is through the use of brain scans. The most commonly used brain scans include CT (computed tomography), PET (positron emission tomography) and MRI (magnetic resonance imaging). CT and MRI scans reveal the structure of the brain, which can be useful for identifying brain tumors, cysts, and other structural abnormalities. PET and an adapted kind of MRI called functional MRI (fMRI) can be used to monitor the brain's activity and detect abnormalities in how it works. SPECT (single photon emission computed tomography) is a relatively new kind of brain scan that is sometimes used to locate seizure foci in the brain.

In some cases, doctors may use an experimental type of brain scan called a magnetoencephalogram, or MEG. MEG detects the magnetic signals generated by neurons to allow doctors to monitor brain activity at different points in the brain over time, revealing different brain functions. While MEG is similar in concept to EEG, it does not require electrodes and it can detect signals from deeper in the brain than an EEG. Doctors also are experimenting with brain scans called magnetic resonance spectroscopy (MRS) that can detect abnormalities in the brain's biochemical processes, and with near-infrared spectroscopy, a technique that can detect oxygen levels in brain tissue.

Medical History

Taking a detailed medical history, including symptoms and duration of the seizures, is still one of the best methods available to determine if a person has epilepsy and what kind of seizures he or she has. The doctor will ask questions about the seizures and any past illnesses or other symptoms a person may have had. Since people who have suffered a seizure often do not remember what happened, caregivers' accounts of the seizure are vital to this evaluation.

Blood Tests

Doctors often take blood samples for testing, particularly when they are examining a child. These blood samples are often screened for metabolic or genetic disorders that may be associated with the seizures. They also may be used to check for underlying problems such as infections, lead poisoning, anemia, and diabetes that may be causing or triggering the seizures.

Developmental, Neurological, and Behavioral Tests

Doctors often use tests devised to measure motor abilities, behavior, and intellectual capacity as a way to determine how the epilepsy is affecting that person. These tests also can provide clues about what kind of epilepsy the person has.

Can Epilepsy be Prevented?

Many cases of epilepsy can be prevented by wearing seatbelts and bicycle helmets, putting children in car seats, and other measures that prevent head injury and other trauma. Prescribing medication after first or second seizures or febrile seizures also may help prevent epilepsy in some cases. Good prenatal care, including treatment of high blood pressure and infections during pregnancy, can prevent brain damage in the developing baby that may lead to epilepsy and other neurological problems later. Treating cardiovascular disease, high blood pressure, infections, and other disorders that can affect the brain during adulthood and aging also may prevent many cases of epilepsy. Finally, identifying the genes for many neurological disorders can provide opportunities for genetic screening and prenatal diagnosis that may ultimately prevent many cases of epilepsy.

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How can Epilepsy be Treated?

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Medications

Accurate diagnosis of the type of epilepsy a person has is crucial for finding an effective treatment. There are many different ways to treat epilepsy. Currently available treatments can control seizures at least some of the time in about 80 percent of people with epilepsy. However, another 20 percent -- about 600,000 people with epilepsy in the United States -- have intractable seizures, and another 400,000 feel they get inadequate relief from available treatments. These statistics make it clear that improved treatments are desperately needed.

Doctors who treat epilepsy come from many different fields of medicine. They include neurologists, pediatricians, pediatric neurologists, internists, and family physicians, as well as neurosurgeons and doctors called epileptologists who specialize in treating epilepsy. People who need specialized or intensive care for epilepsy may be treated at large medical centers and neurology clinics at hospitals or by neurologists in private practice. Many epilepsy treatment centers are associated with university hospitals that perform research in addition to providing medical care.

Once epilepsy is diagnosed, it isimportant to begin treatment as soon as possible. Research suggests thatmedication and other treatments may be less successful in treating epilepsy once seizures and their consequences become established.

Tailoring the dosage of antiepileptic drugs

When a person starts a new epilepsy drug, it is important to tailor the dosage to achieve the best results. People's bodies react to medications in very different and sometimes unpredictable ways, so it may take some time to find the right drug at the right dose to provide optimal control of seizures while minimizing side effects. A drug that has no effect or very bad side effects at one dose may work very well at another dose. Doctors will usually prescribe a low dose of the new drug initially and monitor blood levels of the drug to determine when the best possible dose has been reached.

Generic versions are available for many antiepileptic drugs. The chemicals in generic drugs are exactly the same as in the brand-name drugs, but they may be absorbed or processed differently in the body because of the way they are prepared. Therefore, patients should always check with their doctors before switching to a generic version of their medication.

Discontinuing medication

Some doctors will advise people with epilepsy to discontinue their antiepileptic drugs after 2 years have passed without a seizure. Others feel it is better to wait for 4 to 5 years. Discontinuing medication should always be done with a doctor's advice and supervision. It is very important to continue taking epilepsy medication for as long as the doctor prescribes it. People also should ask the doctor or pharmacist ahead of time what they should do if they miss a dose. Discontinuing medication without a doctor's advice is one of the major reasons people who have been seizure-free begin having new seizures. Seizures that result from suddenly stopping medication can be very serious and can lead to status epilepticus. Furthermore, there is some evidence that uncontrolled seizures trigger changes in neurons that can make it more difficult to treat the seizures in the future.

The chance that a person will eventually be able to discontinue medication varies depending on the person's age and his or her type of epilepsy. More than half of children who go into remission with medication can eventually stop their medication without having new seizures. One study showed that 68 percent of adults who had been seizure-free for 2 years before stopping medication were able to do so without having more seizures and 75 percent could successfully discontinue medication if they had been seizure-free for 3 years. However, the odds of successfully stopping medication are not as good for people with a family history of epilepsy, those who need multiple medications, those with focal seizures, and those who continue to have abnormal EEG results while on medication.

Surgery

When seizures cannot be adequately controlled by medications, doctors may recommend that the person be evaluated for surgery. Surgery for epilepsy is performed by teams of doctors at medical centers. To decide if a person may benefit from surgery, doctors consider the type or types of seizures he or she has. They also take into account the brain region involved and how important that region is for everyday behavior. Surgeons usually avoid operating in areas of the brain that are necessary for speech, language, hearing, or other important abilities. Doctors may perform tests such as a Wada test (administration of the drug amobarbitol into the carotid artery) to find areas of the brain that control speech and memory. They often monitor the patient intensively prior to surgery in order to pinpoint the exact location in the brain where seizures begin. They also may use implanted electrodes to record brain activity from the surface of the brain. This yields better information than an external EEG.

A 1990 National Institutes of Health consensus conference on surgery for epilepsy concluded that there are three broad categories of epilepsy that can be treated successfully with surgery. These include focal seizures, seizures that begin as focal seizures before spreading to the rest of the brain, and unilateral multifocal epilepsy with infantile hemiplegia (such as Rasmussen's encephalitis). Doctors generally recommend surgery only after patients have tried two or three different medications without success, or if there is an identifiable brain lesion--a damaged or dysfunctional area--believed to cause the seizures.

A study published in 2000 compared surgery to an additional year of treatment with antiepileptic drugs in people with longstanding temporal lobe epilepsy. The results showed that 64 percent of patients receiving surgery became seizure-free, compared to 8 percent of those who continued with medication only. Because of this study and other evidence, the American Academy of Neurology (AAN) now recommends surgery for TLE when antiepileptic drugs are not effective. However, the study and the AAN guidelines do not provide guidance on how long seizures should occur, how severe they should be, or how many drugs should be tried before surgery is considered. A nationwide study is now underway to determine how soon surgery for TLE should be performed.

If a person is considered a good candidate for surgery and has seizures that cannot be controlled with available medication, experts generally agree that surgery should be performed as early as possible. It can be difficult for a person who has had years of seizures to fully re-adapt to a seizure-free life if the surgery is successful. The person may never have had an opportunity to develop independence, and he or she may have had difficulties with school and work that could have been avoided with earlier treatment. Surgery should always be performed with support from rehabilitation specialists and counselors who can help the person deal with the many psychological, social, and employment issues he or she may face.

While surgery can significantly reduce or even halt seizures for some people, it is important to remember that any kind of surgery carries some amount of risk (usually small). Surgery for epilepsy does not always successfully reduce seizures and it can result in cognitive or personality changes, even in people who are excellent candidates for surgery. Patients should ask their surgeon about his or her experience, success rates, and complication rates with the procedure they are considering.

Even when surgery completely ends a person's seizures, it is important to continue taking seizure medication for some time to give the brain time to re-adapt. Doctors generally recommend medication for 2 years after a successful operation to avoid new seizures.

Surgery to treat underlying conditions

In cases where seizures are caused by a brain tumor, hydrocephalus, or other conditions that can be treated with surgery, doctors may operate to treat these underlying conditions. In many cases, once the underlying condition is successfully treated, a person's seizures will disappear as well.

Surgery to remove a seizure focus

The most common type of surgery for epilepsy is removal of a seizure focus, or small area of the brain where seizures originate. This type of surgery, which doctors may refer to as a lobectomy or lesionectomy, is appropriate only for focal seizures that originate in just one area of the brain. In general, people have a better chance of becoming seizure-free after surgery if they have a small, well-defined seizure focus. Lobectomies have a 55-70 percent success rate when the type of epilepsy and the seizure focus is well-defined. The most common type of lobectomy is a temporal lobe resection, which is performed for people with temporal lobe epilepsy. Temporal lobe resection leads to a significant reduction or complete cessation of seizures about 70 - 90 percent of the time.

Multiple subpial transection

When seizures originate in part of the brain that cannot be removed, surgeons may perform a procedure called a multiple subpial transection. In this type of operation, which has been commonly performed since 1989, surgeons make a series of cuts that are designed to prevent seizures from spreading into other parts of the brain while leaving the person's normal abilities intact. About 70 percent of patients who undergo a multiple subpial transection have satisfactory improvement in seizure control.

Corpus callosotomy

Corpus callosotomy, or severing the network of neural connections between the right and left halves, or hemispheres, of the brain, is done primarily in children with severe seizures that start in one half of the brain and spread to the other side. Corpus callosotomy can end drop attacks and other generalized seizures. However, the procedure does not stop seizures in the side of the brain where they originate, and these focal seizures may even increase after surgery.

Hemispherectomy and hemispherotomy

These procedures remove half of the brain's cortex, or outer layer. They are used predominantly in children who have seizures that do not respond to medication because of damage that involves only half the brain, as occurs with conditions such as Rasmussen's encephalitis, Sturge-Weber syndrome, and hemimegencephaly. While this type of surgery is very radical and is performed only as a last resort, children often recover very well from the procedure, and their seizures usually cease altogether. With intense rehabilitation, they often recover nearly normal abilities. Since the chance of a full recovery is best in young children, hemispherectomy should be performed as early in a child's life as possible. It is rarely performed in children older than 13.

Devices

The vagus nerve stimulator was approved by the U.S. Food and Drug Administration (FDA) in 1997 for use in people with seizures that are not well-controlled by medication. The vagus nerve stimulator is a battery-powered device that is surgically implanted under the skin of the chest, much like a pacemaker, and is attached to the vagus nerve in the lower neck. This device delivers short bursts of electrical energy to the brain via the vagus nerve. On average, this stimulation reduces seizures by about 20 - 40 percent. Patients usually cannot stop taking epilepsy medication because of the stimulator, but they often experience fewer seizures and they may be able to reduce the dose of their medication. Side effects of the vagus nerve stimulator are generally mild but may include hoarseness, ear pain, a sore throat, or nausea. Adjusting the amount of stimulation can usually eliminate most side effects, although the hoarseness typically persists. The batteries in the vagus nerve stimulator need to be replaced about once every 5 years; this requires a minor operation that can usually be performed as an outpatient procedure.

Several new devices may become available for epilepsy in the future. Researchers are studying whether transcranial magnetic stimulation (TMS), a procedure which uses a strong magnet held outside the head to influence brain activity, may reduce seizures. They also hope to develop implantable devices that can deliver drugs to specific parts of the brain.

Diet

Studies have shown that, in some cases, children may experience fewer seizures if they maintain a strict diet rich in fats and low in carbohydrates. This unusual diet, called the ketogenic diet, causes the body to break down fats instead of carbohydrates to survive. This condition is called ketosis. One study of 150 children whose seizures were poorly controlled by medication found that about one-fourth of the children had a 90 percent or better decrease in seizures with the ketogenic diet, and another half of the group had a 50 percent or better decrease in their seizures. Moreover, some children can discontinue the ketogenic diet after several years and remain seizure-free. The ketogenic diet is not easy to maintain, as it requires strict adherence to an unusual and limited range of foods. Possible side effects include retarded growth due to nutritional deficiency and a buildup of uric acid in the blood, which can lead to kidney stones. People who try the ketogenic diet should seek the guidance of a dietician to ensure that it does not lead to serious nutritional deficiency.

Researchers are not sure how ketosis inhibits seizures. One study showed that a byproduct of ketosis called beta-hydroxybutyrate (BHB) inhibits seizures in animals. If BHB also works in humans, researchers may eventually be able to develop drugs that mimic the seizure-inhibiting effects of the ketogenic diet.

Other Treatment Strategies

Researchers are studying whether biofeedback -- a strategy in which individuals learn to control their own brain waves -- may be useful in controlling seizures. However, this type of therapy is controversial and most studies have shown discouraging results. Taking large doses of vitamins generally does not help a person's seizures and may even be harmful in some cases. But a good diet and some vitamin supplements, particularly folic acid, may help reduce some birth defects and medication-related nutritional deficiencies. Use of non-vitamin supplements such as melatonin is controversial and can be risky. One study showed that melatonin may reduce seizures in some children, while another found that the risk of seizures increased measurably with melatonin. Most non-vitamin supplements such as those found in health food stores are not regulated by the FDA, so their true effects and their interactions with other drugs are largely unknown.

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What To Do If You See Someone Having a Seizure

If you see someone having a seizure with convulsions and/or loss of consciousness, here's how you can help:

  1. Roll the person on his or her side to prevent choking on any fluids or vomit.
  2. Cushion the person's head.
  3. Loosen any tight clothing around the neck.
  4. Keep the person's airway open. If necessary, grip the person's jaw gently and tilt his or her head back.
  5. Do NOT restrict the person from moving unless he or she is in danger.
  6. Do NOT put anything into the person's mouth, not even medicine or liquid. These can cause choking or damage to the person's jaw, tongue, or teeth. Contrary to widespread belief, people cannot swallow their tongues during a seizure or any other time.
  7. Remove any sharp or solid objects that the person might hit during the seizure.
  8. Note how long the seizure lasts and what symptoms occurred so you can tell a doctor or emergency personnel if necessary.
  9. Stay with the person until the seizure ends.
  10. This is a first seizure or you think it might be. If in doubt, check to see if the person has a medical identification card or jewelry stating that they have epilepsy or a seizure disorder.
  11. After the seizure ends, the person will probably be groggy and tired. He or she also may have a headache and be confused or embarrassed. Be patient with the person and try to help him or her find a place to rest if he or she is tired or doesn't feel well. If necessary, offer to call a taxi, a friend, or a relative to help the person get home safely.
  12. If you see someone having a non-convulsive seizure, remember that the person's behavior is not intentional. The person may wander aimlessly or make alarming or unusual gestures. You can help by following these guidelines:
  • Remove any dangerous objects from the area around the person or in his or her path.
  • Don't try to stop the person from wandering unless he or she is in danger.
  • Don't shake the person or shout.
  • Stay with the person until he or she is completely alert.

Call 911 if:

  • The person is pregnant or has diabetes.
  • The seizure happened in water.
  • The seizure lasts longer than 5 minutes.
  • The person does not begin breathing again or does not return to consciousness after the seizure stops.
  • Another seizure starts before the person regains consciousness.
  • The person injures himself or herself during the seizure.

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Where can I get more information?

For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov

Information also is available from the following organizations:

Citizens United for Research in Epilepsy (CURE)
730 N. Franklin
Suite 404
Chicago, IL   60610
info@CUREepilepsy.org
http://www.CUREepilepsy.org
Tel: 312-255-1801
Fax: 312-255-1809
Non-profit grassroots organization formed by parents and families to raise funds for epilepsy research.

Epilepsy Foundation
4351 Garden City Drive
Suite 500
Landover, MD   20785-7223
postmaster@efa.org
http://www.epilepsyfoundation.org
Tel: 301-459-3700 800-EFA-1000 (332-1000)
Fax: 301-577-2684
National charitable organization dedicated to the welfare of people with epilepsy. Works for children and adults affected by seizures through education, advocacy, services, and research towards a cure. Offers a Legal Defense Program through a fund.

Epilepsy Institute
257 Park Avenue South
New York, NY   10010
website@epilepsyinstitute.org
http://www.epilepsyinstitute.org
Tel: 212-677-8550
Fax: 212-677-5825
Non-profit organization that provides comprehensive social services and resources for people with epilepsy and their families.

Parents Against Childhood Epilepsy (PACE)
7 East 85th Street
Suite A3
New York, NY   10028
pacenyemail@aol.com
http://www.paceusa.org
Tel: 212-665-PACE (7223)
Fax: 212-327-3075
Non-profit research resource that provides information and support to families of children with epilepsy.

Family Caregiver Alliance/ National Center on Caregiving
180 Montgomery Street
Suite 1100
San Francisco, CA   94104
info@caregiver.org
http://www.caregiver.org
Tel: 415-434-3388 800-445-8106
Fax: 415-434-3508
Supports and assists families and caregivers of adults with debilitating health conditions. Offers programs and consultation on caregiving issues at local, state, and national levels. Offers free publications and support online, including a national directory of publicly funded caregiver support programs.

National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
ncpie@ncpie.info
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.

National Family Caregivers Association
10400 Connecticut Avenue
Suite 500
Kensington, MD   20895-3944
info@thefamilycaregiver.org
http://www.thefamilycaregiver.org
Tel: 301-942-6430 800-896-3650
Fax: 301-942-2302
Grassroots organization dedicated to supporting and improving the lives of America's family caregivers. Created to educate, support, empower, and advocate for the millions of Americans who care for their ill, aged, or disabled loved ones.

National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT   06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

International RadioSurgery Association (IRSA)
P.O. Box 5186
Harrisburg, PA   17110
getinfo@irsa.org
http://www.irsa.org
Tel: 717-260-9808
Fax: 717-260-9809
Proactive patient organization providing information and referrals on Gamma Knife, Linac, and particle beam radiosurgery for brain tumors, arteriovenous malformations (AVMs), and neurological pain and movement disorders.

Charlie Foundation to Help Cure Pediatric Epilepsy
1223 Wilshire Blvd.
Suite #815
Santa Monica, CA   90403
ketoman@aol.com
http://www.charliefoundation.org
Tel: 800-FOR-KETO (367-5386) 310-395-6751
Fax: 310-393-1978
Non-profit organization that raises money for scientific research focusing on the ketogenic diet. Offers education programs and materials for families and dieticians.

Epilepsy Therapy Development Project
11921 Freedom Drive
Suite 730
Reston, VA   20190
http://www.epilepsytdp.org
Tel: 703-437-4250
Fax: 703-437-4288
Nonprofit corporation that works to advance new treatments for people living with epilepsy. Supports innovative research in academia and industry. Provides information through the www.epilepsy.com website.

Antiepileptic Drug Pregnancy Registry
MGH East, CNY-149, 10th Floor
149 13th Street
Charlestown, MA   02129-2000
ebaldwin@partners.org
http://www.aedpregnancyregistry.org
Tel: 888-AED-AED4 (233-2334)
Fax: 617-724-8307
Registry designed to determine what therapies are associated with increased risk of harmful fetal effects. Participation is confidential.

National Council on Patient Information and Education
4915 St. Elmo Avenue
Suite 505
Bethesda, MD   20814-6082
ncpie@ncpie.info
http://www.talkaboutrx.org
Tel: 301-656-8565
Fax: 301-656-4464
Coalition of nearly 150 organizations committed to safer, more effective medicine use through better communication. Additional website is www.bemedwise.org.

 

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Help for Patients and Caregivers : COPD

What is COPD?
Common Symptoms
What Causes COPD?
Treatments/Medications
Living With COPD
Additional Information


What is Chronic Obstructive Pulmonary Disease?

Chronic obstructive pulmonary disease, or COPD, is an umbrella term for two respiratory illnesses -- chronic bronchitis and/or emphysema. There are 16 million Americans who have been diagnosed with COPD, of whom 14 million have chronic bronchitis and 2 million have emphysema.

Enlarged view of air sacs (alveoli) - Emphysema: weakened and collapsed air sacs with excess mucus vs. normal healthy air sacsCOPD results primarily from smoking tobacco. Years of smoking cause damage to the airways in the lungs. This lung damage continues to progress with the use of tobacco. Average current and former smokers will likely not notice or acknowledge symptoms for several years. Typically, they will begin noticing the first symptoms of shortness of breath when they reach their 40s. However, earlier signs of COPD are often present. These include chronic cough and increased mucus production. Recognizing these early signs is important because lifestyle modifications, such as smoking cessation and avoiding respiratory irritants, can be made to prevent additional damage to the airways.

In technical terms, COPD is a slowly progressive disease that is characterized by a decrease in the ability of the lungs to maintain the body's oxygen supply and remove carbon dioxide.[8] As a result of this decrease in lung function, COPD patients alter their lifestyles because they become short of breath after minimal exertion. For example, instead of climbing a flight of stairs COPD patients take the elevator. Physical activities also take longer to complete. Lawn mowing that a COPD patient might have finished in 40 minutes only a year ago may now take an hour to do.

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Common Symptoms?

  • breathlessness even after mild exertion
  • chronic coughing, which may or may not produce mucus
  • frequent clearing of the throat
  • chest tightness
  • wheezing

Because COPD is a progressive disease, patients may attribute early symptoms to aging or being out of shape. They may also believe they only have a benign smoker's cough.

Although symptoms of COPD may be present earlier, people are typically diagnosed with COPD when they are older than 45 and have at least a 20 pack-year smoking history.[3] Pack-years are calculated by dividing the number of cigarettes smoked per day by 20 (the number of cigarettes in a pack) and multiplying this figure by the number of years a person has smoked. For example, a person who smokes 40 cigarettes a day and has smoked for 10 years would have a 20 pack-year smoking history:
(40 cigarettes per day ÷ 20 cigarettes per pack = 2) ( 2 x 10 years of smoking = 20 pack-year history).

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What Causes COPD?

  • Cigarette, Pipe, cigar and other types of tobacco smoking
  • Passive exposure to cigarette smoking
  • Occupational dusts and chemicals
  • Air pollution
  • Genetic factors (less than 5 percent of cases).

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Treatments for COPD

Treatment for COPD includes inhalers that dilate the airways (bronchodilators) and sometimes theophylline. The COPD patient must stop smoking. In some cases inhaled steroids are used to suppress lung inflammation, and, in severe cases or flare-ups, intravenous or oral steroids are given.

Antibiotics are used during flare-ups of symptoms as infections can worsen COPD. Chronic, low-flow oxygen, non-invasive ventilation, or intubation may be needed in some cases. Lung volume reduction surgery for COPD is a surgical therapy currently being evaluated in a large, national trial. Lung transplant is sometimes performed for severe cases.

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Living With COPD

Avoid Potential Irritants -

Both airborne irritants (for example, from cigarette smoke) and infections (for example, the flu) can increase mucus in the airways. For someone with chronic obstructive pulmonary disease (COPD), this makes it harder to breathe and can lead to a hospital visit.

Exercise And Eat Well -

Exercise and good nutrition are important parts of maintaining optimal health for everyone, but especially if you have COPD. Keeping your muscles and lungs strong will make it easier to breathe. Maintaining a proper diet helps maintain your energy and wards off potential infections. As with exercise, establishing good eating habits — for example, consuming plenty of fruits and vegetables — will only help your health.

Control Your Coughing And Breathing

Controlled breathing methods and controlled coughing can help you breathe easier.

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Additional Information

http://www.aarc.org/

American Lung Association
1740 Broadway
New York, NY 10019
Phone: (212) 315-8700
Toll-Free: (800) 586-4872
http://www.lungusa.org/

National Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
http://www.nhlbi.nih.gov/

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Help for Patients and Caregivers : Multiple Sclerosis

Overview of MS
How is Multiple Sclerosis Diagnosed?

What Causes MS?
Types of MS
Symptoms of MS
Treatments


Overview
In multiple sclerosis the myelin sheath, which is a single cell whose membrane wraps around the axon, is destroyed with inflammation and scarringMultiple sclerosis (MS) is a chronic, potentially debilitating disease that affects your brain and spinal cord (central nervous system). The illness is probably an autoimmune disease, which means your immune system responds as if part of your body is a foreign substance.In MS, your body directs antibodies and white blood cells against proteins in the myelin sheath surrounding nerves in your brain and spinal cord. This causes inflammation and injury to the sheath and ultimately to your nerves. The result may be multiple areas of scarring (sclerosis). The damage slows or blocks muscle coordination, visual sensation and other nerve signals.The disease varies in severity, ranging from a mild illness to one that results in permanent disability. Treatments can modify the course of the disease and relieve symptoms.An estimated 400,000 Americans have MS. It generally first occurs in people between the ages of 20 and 50. The disease is twice as common in women as in men.

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How is Multiple Sclerosis Diagnosed?
MS is not easy to diagnose. There is no single conclusive test for MS. Other conditions may need to be ruled out. A GP should always refer a patient to a neurologist to make or confirm the diagnosis. The neurologist will not usually diagnose MS until there have been at least two occurrences of symptoms involving different areas of the central nervous system, at least a month apart and each lasting for at least 24 hours. This means that there is always a delay between the appearance of the first symptom and a diagnosis of MS. A clinical diagnosis, made by a doctor after seeing you for various MS-type symptoms over a period of time, needs to be backed up by tests. It may be necessary to have several different tests to identify MS. The following are the most commonly The following are the most commonly used tests for MS.

Neurological examination
This tests for abnormalities in nerve pathways involved in movement or sensation. The neurologist looks for changes in eye movements, co-ordination of legs or hands, balance, sensation, speech or reflexes, as well as any signs of weakness.

Evoked potentials
Evoked potentials test the time it takes for the brain to receive and interpret messages. This is a non-invasive and painless test. Small electrodes are placed on the head to monitor brain waves responding to what you see or hear. In a healthy person, responses are virtually instantaneous. If myelin damage has occurred, messages may take longer to get through.

MRI scan
The MRI (Magnetic Resonance Imaging) scanner is used in most areas of the country to diagnose MS. Linked to a computer, it takes detailed pictures of the brain and spinal cord. It is very accurate and can pinpoint the exact location and size of plaques. Over 90 per cent of people with MS have plaques that show up on MRI scans, but some people's scans show no myelin damage.

Lumbar puncture
This test has been used to diagnose MS for many years. A needle is inserted into the lower back, under local anaesthetic, and a small sample of cerebrospinal fluid (which flows around the brain and spinal cord) is taken from the spinal cord. This fluid is tested for abnormalities in protein patterns.

Other tests
Conditions that mimic MS can be ruled out by using MRI or other tests. These include CAT (Computer Axial Tomography) scans, which give a crosssectional image of the brain; tests to reveal certain antibodies in the blood; and inner ear tests to check balance.

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What Causes MS?
Many factors are involved in MS, but no single cause has been identified.

Environment
An environmental agent such as a virus or bacterial infection may be involved. Some scientists argue that a virus disturbs the immune system or indirectly sets off a process whereby the immune system attacks itself. No single virus has been identified as being responsible for MS, but some researchers think that a common childhood virus may act as a trigger. Environmental factors seem to be influential in the first 15 years of life. Many people with MS have had viral illnesses such as measles, chickenpox, flu, herpes or glandular fever as children or teenagers.

Genetic factors
Some people with MS seem to have particular genes which give them a 'genetic predisposition' to MS; in other words, they make it more likely that they will develop the condition. These genes are also common in the general population, however. There is no single gene linked to MS.

Family links
MS is not hereditary (ie passed directly from parent to child), but it can occur in more than one member of a family. However, in the UK the chance of a child having MS when a parent is affected is very small; it is estimated to be three in 100, which is much lower than that for developing cancer or heart problems. The risk of being affected by MS for the UK population in general is one in 800.

Climate and geography
Countries with temperate climates have a higher incidence of MS cases, and the condition is more common in areas in northern latitudes such as Scotland. No one knows why this is the case. Some studies suggest that people who migrate to areas with temperate climates after the age of about 15 retain the likelihood of taking on MS corresponding to their country of origin, rather than taking on the increased likelihood associated with temperate climates.

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Are there different types of MS?
There are four main types of MS, and a great deal of variation within each.
MS shows up differently in each person. Some people are only mildly affected throughout their lives. A few people deteriorate rapidly from the beginning and may die early. Most people with MS experience something in between these two extremes.

Benign MS
This type starts with a small number of mild attacks followed by complete recovery. It does not worsen over time and there is no permanent disability. The first symptoms usually affect sensation or sight. People are only classified as having benign MS when they have little sign of disability 10 to 15 years after the first onset of symptoms. However, disability may occasionally develop after many years in which the disease has been inactive. Around 20 per cent of people with MS have the benign form.

Relapsing-remitting MS
For most people MS starts as the relapsing-remitting type. This means they have relapses (a flare-up of symptoms), followed by remissions (periods of recovery). Relapses (also known as attacks or exacerbations) tend to be unpredictable and their causes are unclear. They can last for hours, days, weeks or months, and vary from mild to severe. During a relapse new symptoms may occur, previous symptoms may return. At their worst, acute relapses may need hospital treatment. Remissions can last any length of time - even years. No one knows exactly what makes MS go into remission. Even during remission there may still be plaques visible on MRI scans. In the early stages of relapsingremitting MS, symptoms usually disappear during remissions. However, after several attacks there may be some residual damage to myelin, resulting in the person being slightly more affected than before the relapse. Around 25 per cent of people with MS have the relapsing-remitting form.

Secondary progressive MS
Many people who start out with relapsing-remitting MS later develop a form known as secondary progressive. This means that disability does not go away after a relapse and progressively worsens between attacks, or that the cycle of attack followed by remission is replaced by a steady progression of disability. Around 40 per cent of people with MS develop the secondary progressive form, usually about 15 to 20 years after the initial onset of MS.

Primary progressive MS
Some people with MS never have distinct relapses and remissions. From the start they experience steadily worsening symptoms and progressive disability. This may level off at any time or may continue to get worse. Around 15 per cent of people with MS have the primary progressive form of the disease, which is also known as chronic progressive.

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Symptoms of MS?
MS varies from person to person. No one experiences every symptom.

MS can cause a wide variety of symptoms. Many people only experience a few symptoms and no one has all of them. People can have different symptoms at different times, and although some are very common, there is no typical set that applies to everyone. Symptoms vary in severity and duration. They can range from mild and short-lived to severe and longer-lasting. Some symptoms are obvious to other people. Others (such as pain or fatigue) are hidden or "silent", and may be harder for people unfamiliar with MS to understand.

Certain triggers can seem to make symptoms worse. The most common triggers tend to be overdoing things, exercise which raises core body temperature, fever, heat and humidity. Symptoms may start with double or blurred vision, pain at the back of the eye or nerve pain in the face. Some people experience ringing in the ears or hearing problems, tingling ("pins and needles") or numbness in the legs, feet, arms or hands. Others experience giddiness and loss of balance, especially in the dark. Some people may find it hard to concentrate, become forgetful, or experience anxiety, depression or mood swings.

Other symptoms may include fatigue (especially in hot weather), pain, weakness or difficulty in walking. Some people experience problems with speech or bladder or bowel control. Sexual function or sensation can be affected, and a person with MS may need more stimulation to become or stay aroused. These problems can come and go, like any other MS symptom. Symptoms are not necessarily unique to MS, and can be associated with other conditions. Effective treatments are available for most MS symptoms, and in some cases can reduce relapses. They should be discussed with your doctors or an MS nurse.

Help and support
You may feel upset at being told that you have MS. It may be hard to believe that the good health you had before has been taken away from you. You may feel a sense of loss or bereavement, which may take some time to understand. You may experience shock or bewilderment and feel angry and want to deny the diagnosis, carrying on as though nothing has happened. All these reactions are normal, but some people will experience them more acutely than others. See our booklet Making the most of life with MS for more information on coping with these reactions. Talking through your emotions and questions with someone else can be helpful. The freephone MS Helpline, telephone counselling lines and local contacts are there to support you. Details are included on the back page.

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Treatment
If your attacks are mild or infrequent, your doctor may advise a wait-and-see approach, with counseling and observation. However, if your diagnosis is a relapsing form of the disease, the form that affects the great majority of people with MS, your doctor may recommend treatment with disease-modifying medications as soon as possible.These medications include: Beta interferons. Interferon beta-1b (Betaseron) and interferon beta-1a (Avonex, Rebif) are genetically engineered copies of proteins that occur naturally in your body. They help fight viral infection and regulate your immune system. If you use Betaseron, you inject yourself under your skin (subcutaneously) every other day. If you use Rebif, you inject yourself subcutaneously three times a week. Avonex is self-injected into your muscle (intramuscularly) once a week. These medications reduce flares of MS. It's uncertain which of their many actions lead to a reduction in disease activity and what their long-term benefits are. Beta interferons should never be used in combination with one another. Only one of these medications should be used at a time. The Food and Drug Administration (FDA) has approved beta interferons only for people with relapsing forms of MS who can still walk. Beta interferons don't reverse damage and haven't been proved to prevent permanent disability.

Some people develop antibodies to beta interferons, which may make them less effective. Other people can't tolerate the side effects, which may include symptoms similar to those of the flu (influenza).Mayo Clinic neurologists generally recommend beta interferons for people who have more than one attack of MS a year and for those who don't recover well from flare-ups. The treatment may also be used for people who have a significant buildup of new lesions as seen on an MRI scan, even when there may not be major new symptoms of disease activity.

Glatiramer (Copaxone). This medication is an alternative to beta interferons if you have relapsing remitting MS. Glatiramer shouldn't be used at the same time as beta interferons. Glatiramer is as effective as beta interferons in curbing MS attacks. Doctors believe that glatiramer works by blocking your immune system's attack on myelin. You must inject glatiramer subcutaneously once daily. Side effects may include flushing and shortness of breath after injection.

Medications to relieve symptoms in progressive MS may include:

Corticosteroids. Doctors most often prescribe oral or intravenous corticosteroids to reduce inflammation in nerve tissue and shorten the duration of flare-ups. Prolonged use of these medications, however, may cause side effects such as osteoporosis and high blood pressure (hypertension).

Muscle relaxants. Tizanidine (Zanaflex) and baclofen (Lioresal) are oral treatments for muscle spasticity. If you have MS, you may experience muscle stiffening or spasms, particularly in your legs, which can be painful and uncontrollable. Lioresal often increases weakness in the legs. Zanaflex appears to control muscle spasms without leaving your legs feeling weak but can be associated with drowsiness or a dry mouth.

Medications to reduce fatigue. These may include the antidepressant medication fluoxetine (Prozac), the antiviral drug amantadine (Symmetrel) or a medication for narcolepsy called modafinil (Provigil). All appear to work because of their stimulant properties.

Many medications are used for the muscle stiffness, depression, pain and bladder control problems often associated with MS. Drugs for arthritis and medications that suppress the immune system may slow MS in some cases.

In addition to medications, these treatments may relieve symptoms of MS:

Physical and occupational therapy. The goal is to preserve independence by having you do strengthening exercises and use devices to ease daily tasks.

Counseling. Individual or group therapy may help you and your family cope with MS and relieve emotional stress.

Plasma exchange. Researchers are evaluating plasma exchange as an experimental approach to treating MS. This procedure involves removing some of your blood and mechanically separating the blood cells from the fluid (plasma). Your blood cells then are mixed with a replacement solution, typically albumin, or a synthetic fluid with properties like plasma. The solution with your blood is then returned to your body. It's uncertain why plasma exchange works. Replacing your plasma may dilute the activity of the destructive factors in your immune system and help you to recover. This treatment is only for people with sudden, severe attacks of MS-related disability who don't respond to high doses of steroid treatment. The treatment is most helpful for people with a mild pre-existing disability before the attack. Plasma exchange has no proven benefit beyond three months from the onset of the neurologic symptoms.

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Help for Patients and Caregivers : Parkinson's Disease

What is Parkinson's Disease?
Common Symptoms
What Causes Parkinson's Disease?
Medications
Surgical Treatments
Role of the Patient
Caregiver Information
Additional Information


What is Parkinson's Disease?
Parkinson's disease belongs to a group of conditions called movement disorders. It is both chronic, meaning it persists over a long period of time, and progressive, meaning its symptoms grow worse over time.

Parkinson's disease occurs when a group of cells, in an area of the brain called the substantia nigra, that produce a chemical called dopamine begin to malfunction and eventually die. Dopamine is a neurotransmitter, or chemical messenger, that transports signals to the parts of the brain that control movement initiation and coordination. When Parkinson's disease occurs, for unexplained reasons, these cells begin to die at a faster rate and the amount of dopamine produced in the brain decreases. The four primary symptoms are:

  • tremor of the hands, arms, legs, jaw, and face;
  • rigidity or stiffness of the limbs and trunk;
  • bradykinesia or slowness of movement, and
  • postural instability or impaired balance and coordination.

If you have a question about Parkinson's disease, why not submit it to our medical experts and receive an email reply within 10 working days. To reach 'Ask the Expert', just click here. At this site you can also review our archive of hundreds of answers to questions about Parkinson's listed by category in our "Expert Resource Center".

Visit our "Publications & Videos" section to review a list of print and audio patient materials from the Parkinson's Disease Foundation that are available free of charge, or sign up to receive regular news and updates by mail and email. Click here to sign up.

As many as one million Americans suffer from Parkinson's disease. While approximately 15% of Parkinson's patients are diagnosed before the age of 40, incidence increases with age. The cause is unknown, and although there is presently no cure, there are many treatment options such as medication and surgery to manage the symptoms.
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Common Symptoms?
The symptoms vary from patient to patient and not every one is affected by all of them. In some people, the disease progresses quickly; in others it does not. The following are the most common primary symptoms of Parkinson's disease.

Tremor: In the early stages of the disease, about 70% of people experience a slight tremor in the hand or foot on one side of the body, or less commonly in the jaw or face. It appears as a 'beating' or oscillating movement and is regular (4-6 beats per second). Because tremor usually appears when the muscles are relaxed, it is called "resting tremor." This means that the affected body part trembles when it is at rest and not doing work and often subsides with action. The tremor often spreads to the other side of the body as the disease progresses, but remains most apparent on the original side of occurrence.

Rigidity: Rigidity or increased muscle tone means stiffness or inflexibility of the muscles. Normally muscles contract when they move, and then relax when they are at rest. In rigidity, the muscle tone of an affected limb is stiff. Rigidity can result in a decreased range of motion. For example a patient may not swing his or her arms when walking. Rigidity can also cause pain and cramps at the muscle site.

Bradykinesia: Bradykinesia is a slowing of voluntary movement. In addition to slow movements, a person with bradykinesia will likely also have incompleteness of movement, difficulty in initiating movements, and arrests of ongoing movement. Patients may begin to walk with short, shuffling steps (festination), which, combined with other symptoms such as loss of balance, increases the incidence of falls. They may also experience difficulty making turns or abrupt movements. They may go through periods of "freezing," which is when the patient is stuck and finds it difficult to stop or start walking. Bradykinesia and rigidity can occur in the facial muscles, causing a "mask-like" expression with little or no movement of the face. The slowness and incompleteness of movement can also affect speaking and swallowing.

There are many secondary symptoms of Parkinson's disease. These include stooped posture, a tendency to lean forward or backward, and speech problems, such as softness of voice or slurred speech caused by lack of muscle control. Non-motor symptoms also impact the life of a person with Parkinson's. A survey published in October 2003, "The Impact of Parkinson's Disease on Quality of Life" revealed that two of the top three most disabling symptoms for people with Parkinson's are non-motor symptoms, including loss of energy and pain. To review the results of this survey go to: http://www.amarinpharma.com/.

The following is a list of secondary symptoms of Parkinson's disease:

  • Speech changes
  • Loss of facial expression
  • Micrographia (small, cramped handwriting)
  • Difficulty swallowing
  • Drooling
  • Pain
  • Dementia or confusion
  • Sleep disturbances
  • Constipation
  • Skin problems
  • Depression
  • Fear or anxiety
  • Memory difficulties and slowed thinking
  • Sexual dysfunction
  • Urinary problems
  • Fatigue and aching
  • Loss of energy
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What Causes Parkinson's Disease?
Why an individual develops Parkinson's disease remains undetermined. The causes likely include both genetic and environmental factors. A variety of mechanisms that are believed to cause accelerated cell death have also been suggested, including oxidative stress, excitotoxicity and mitochondrial dysfunction. These are described below.

  • Genetics    About 15-25% of Parkinson's patients report having a relative with Parkinson's. Researchers have found a defective gene in some rare families, with a high incidence of Parkinson's disease. These rare cases have an inherited form of Parkinson's disease. Scientists have discovered several "Parkinson's genes" and there is conclusive evidence that genetics play a role in at least some patients. There appears to be a 2-3 fold increased risk of PD in first degree relatives compared to matched control populations. However, the majority of cases of PD still appear to be sporadic.
  • Environmental Factors    Some scientists have suggested that Parkinson's disease may occur when a toxin selectively destroys dopaminergic neurons. Scientists have known for a number of years of several toxins that can cause Parkinson's-like symptoms, such as MPTP. Several studies have suggested a link between rural living, herbicide use and exposure to pesticides as possible factors that may contribute to a person's developing Parkinson's. Some PWP's recall a time when they were exposed to chemicals, and believe this exposure may be a possible cause. Scientists are continuing to pursue these clues to establish more concrete linkages.

While the debate concerning environmental factors and genetics as causative factors in PD continues, there has been extensive investigation of the mechanisms involved in the cell death process. A number of cell death concepts have been put forward including, oxidative stress, mitochondrial dysfunction and excitotoxicity.

  • Oxidative damage    This theory suggests that free radicals - unstable molecules whose toxic effects are believed to be caused by oxidation - may contribute to cell death, thereby leading to Parkinson's disease. Oxidation is thought to cause damage to tissues, including neurons. In addition, antioxidant defenses appear to be markedly reduced in PD brains. In particular, reduced levels of glutathione (an acid which plays a role in the detoxification of harmful compounds) have been discovered. The cause of the deficiency and the potential role that antioxidants like glutathione play in the development of PD remain unresolved.
  • Mitochondrial dysfunction    The mitochondria are small bodies within cells that produce energy. They can be described as the 'power-house' of the cell. Scientific findings indicate a reduction in the function of mitochondria and this may play a role in PD.
  • Excitotoxicity    occurs when selected neurotransmitters in the brain get out of balance leading to cell death. This mechanism has been documented in Parkinson's and scientists believe that glutamate excitotoxicity is the main culprit within this mechanism. Finding a way to correct this imbalance may prevent be neuroprotective.
Most experts in the field share the opinion that Parkinson's is caused by a combination of genetic and environmental factors, and other contributing mechanisms of cell death. For regular updates on scientific discoveries about Parkinson's disease, see the PDF "Science Bulletin" in our News section of the PDF website by clicking here. Or subscribe to the "PDF News" our quarterly newsletter. To subscribe, click here.
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Medications for Parkinson's Disease
There are several symptomatic treatments for people with Parkinson's including medication, surgery, and physical therapy. The degree of success of each treatment varies among individuals, as does the length of time the treatment option remains effective.

Levodopa is a dopamine precursor, a substance that is converted into dopamine by an enzyme in the brain. The use of levodopa was a breakthrough in the treatment of PD. Unfortunately, patients experienced debilitating side effects, including severe nausea and vomiting. With increased dosing and prolonged use of levodopa, patients experienced other side effects including dyskinesias (spontaneous, involuntary movements) and "on-off" periods when the medication will suddenly start or stop working.

Check with a doctor before taking any of the following to avoid possible interactions: antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food.

Combining Levodopa with Carbidopa (Sinemet) represented a significant improvement in the treatment of Parkinson's disease. The addition of carbidopa prevents levodopa from being metabolized in the gut, liver and other tissues, and allows more of it to get to the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms. In addition, the severe nausea and vomiting often associated with levodopa treatment was greatly reduced.

Consult a doctor before taking any medications to avoid possible interactions. In particular, antacids, anti-seizure drugs, anti-hypertensives, anti-depressants and high protein food may adversely affect the function of Levodopa/carbidopa.

Stalevo (carbidopa, levodopa and entacapone) is a new (September 2003) combination tablet for patients who experience signs and symptoms of end-of-dose "wearing-off." The tablet combines carbidopa/levodopa (the most widely used agent for PD), with entacapone. While carbidopa reduces the side effects of levodopa, entacapone extends the time levodopa is active in the brain (up to 10 percent longer). The same drugs that interact with carbidopa/levodopa and entacapone interact with Stalevo.

Symmetrel (amantadine hydrochloride) is thought to work in PD because it has several actions. It activates both the release of dopamine from storage sites and possibly blocks the re-uptake of dopamine into nerve terminals. It also has a glutamate receptor blocking activity. Its dopaminergic actions result in its usefulness in reducing dyskinesia induced by levodopa. It is thus called an indirect-acting dopamine agonist, and is widely used as an early monotherapy (treatment of a condition by means of a single drug), with the more powerful Sinemet added when needed. Unfortunately, its benefit in more advanced PD is often short-lived, with patients reporting a fall-off effect.d

Symmetrel may interact with Cogentin (benztropine), Disipal (orphenadrine), Sinemet (levodopa), Artane (trihexyphenidyl), amphetamines and alcohol.

Anticholinergics (trihexyphenidyl, benztropine mesylate, procyclidine, etc.) do not act directly on the dopaminergic system. Instead they act to decrease the activity of another neurotransmitter, acetylcholine. There is a complex interaction between levels of acetylcholine in the brain and levels of dopamine. Many clinicians find that if an agonist or levodopa does not relieve tremor, then the addition of an anticholinergic drug is often effective. Adverse effects include blurred vision, dry mouth and urinary retention. These drugs may be contraindicated in older patients since they can cause confusion and hallucination.d

Check with a doctor before using anticholinergics with anti-histamines, Haldol, Thorazine, Symmetrel, Clozaril and alcohol.

Selegiline or deprenyl (Eldepryl) has been shown to delay the need for Sinemet when prescribed in the earliest stage of PD, and has also been approved for use in later stages to boost the effects of Sinemet. Eldepryl may interact with anti-depressants, narcotic pain killers and decongestants. Check with a doctor before taking any new medications.

Dopamine agonists are drugs that activate dopamine receptors directly, and can be taken alone or in combination with Sinemet. Agonists available in the United States include bromocriptine (Parlodel), pergolide (Permax), pramipexole (Mirapex) and ropinirole (Requip).

Consult a doctor before taking any of the following to avoid possible interactions: alcohol, anti-psychotics, medications that lower blood pressure, Navane (thiothixene), Taractan (chlorprothixene), Haldol (haloperidol), Reglan (metoclopramide), phenothiazines, thiozanthenes, cimetidine, phenothiazines, butyrophenones, Cipro and benzodiazepines.

COMT inhibitors such as tolcapone (Tasmar) and entacapone (Comtan) represent a different class of Parkinson's medications. These drugs must be taken with levodopa. They prolong the duration of symptom relief by blocking the action of an enzyme which breaks down levodopa.

*** Side Effects from Medications - Like the symptoms of PD themselves, the side effects caused by Parkinson's medications vary from patient to patient. They may include dry mouth, nausea, dizziness, confusion, hallucinations, drowsiness, insomnia, and other unwelcome symptoms. Some patients experience no side effects from a drug, while others may have to discontinue its use because of them.

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Surgical Treatments
Surgery is an option for patients to explore after they have had experience with medications and are no longer satisfied with the results. A patient should discuss surgery thoroughly with his or her neurologist before making any decision.

Two older, and somewhat outdated, lesioning procedures that provide relief from Parkinson's symptoms are pallidotomy and thalamotomy. Pallidotomy can alleviate rigidity and bradykinesia symptoms, and thalamotomy helps to control tremors. Doctors rarely perform either procedure because both permanently destroy parts of the brain and have serious side effects. The damage could make it impossible to perform surgeries that may become available in the future, such as brain tissue transplants.

Deep brain stimulation (DBS) , a safer and more effective surgery, has replaced these methods. It is a preferred surgical option because it has the same, if not better results than pallidotomy and thalamotomy. DBS also leaves open the possibility of other therapies, should they become available in the future. As with any surgical procedure, there are risks and side effects. The main benefit of DBS surgery is to reduce motor fluctuations i.e. the ups and downs caused by a decreasing effectiveness of Sinemet.

The electrode is usually placed on one side of the brain. The DBS electrode implanted in the left side of the brain will control the symptoms on the right side of the body and vice versa. In some cases, patients will need to have stimulators on both sides of the brain.

During surgery, a device is implanted to provide an electrical impulse to a part of the brain involved in motor function. This is often the subthalamic nucleus, in a deep part of the brain called the thalamus. During the procedure, electrodes are inserted into the targeted brain region using MRI and neurophysiological mapping to ensure that they are implanted in the right place. The electrodes are connected to wires that lead to an impulse generator or IPG (similar to a pacemaker) that is placed under the collarbone and beneath the skin. Patients have a controller, which allows them to verify whether the DBS is 'on' or 'off'. They can use this device to check the battery and to turn the device 'on' or 'off'. An IPG battery lasts for about 3 to 5 years and is relatively easy to replace under local anesthesia.

Patients considering one or another surgical procedure should discuss the options first with their movement disorder specialists and then with their families and/or caregivers.

For more information on DBS, order from PDF our comprehensive booklet "Surgery for Parkinson's Disease", written by our medical advisor Dr. Blair Ford. To order your free copy, send a request by email to info@pdf.org. Or you can get information on the web by visiting these sites:

www.medtronic.com/UK/patients/neuro/brain_stimulation.html
www.clevelandclinic.org/neuroscience/treat/movement/dbs.htm
www.rewiredforlife.org
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Role of the Patient
Treating Parkinson's disease is not exclusively the doctor's job; there is much the individual can do to stay as well as possible for as long as possible. Regular exercise, being part of a support group, maintaining a healthy diet or taking part in a clinical trial are just some of the things you might consider.

Exercise: For people with Parkinson's, regular exercise and/or physical therapy are essential for maintaining and improving mobility, flexibility, balance, and a range of motion, and for warding off many of the secondary symptoms mentioned above. Exercise is as important as medication for the management of PD.

Support groups: For many people, these groups play an important role in the emotional well-being of patients and families. They provide a caring environment for asking questions about Parkinson's, for laughing and crying and sharing stories and getting advice from other sufferers, and for forging friendships with people who understand each other's problems.

Diet: There is no specific diet to prevent or slow Parkinson's but there are several suggestions to help manage the disease. A vegetable-rich diet may aid digestion and prevent constipation. Parkinson's patients should also take a balanced approach to protein intake because protein inhibits the absorption of levodopa in the gut. Avoiding high protein meals when taking levodopa helps prevent this potential problem. However, a patient should not make dietary changes without discussing this first with their doctor. Parkinson's disease nutrition author, Kathrynne Holden, offers several books, including "Eat Well, Stay Well" and "Cook Well, Stay Well" that provide beneficial eating and cooking tips. Copies can be ordered from Five Star Living, on (877) 565-2665 or at www.nutritionucanlivewith.com.

A Healthy Patient/Doctor Relationship: A neurologist can most effectively help a patient manage his or her Parkinson's if the neurologist and the patient have a good working relationship. Doctors need the patient to be honest, forthright, and inquisitive in order to give the best medical attention possible. Patients should also require that a doctor treat them in the same honest, open manner, engaging them in dialogue about the patient's experiences. Doctors can provide a wealth of information and suggestions for improving quality of life.

Physical, Speech and/or Occupational Therapy: These therapies can help Parkinson's patients control their symptoms and make daily life easier. Physical therapy may increase muscle strength and flexibility and decrease the incidence of falls. Speech therapy is available to increase voice volume and assist with word pronunciation. The Lee Silverman technique is a special speech therapy that can be very beneficial to people with Parkinson's - for further information see www.lsvt.org.

Occupational therapy affords patients alternative methods of doing tasks that they can no longer perform with ease. These options may give patients a stronger sense of control when living with Parkinson's disease, which seems to take control from them. The patient should ask a physician for recommendations if he or she does not provide them. These therapies may or may not be covered by insurance.

Clinical Trials: Getting involved in a clinical trial may be a way for a patient to feel empowered and help researchers understand more about Parkinson's disease in order to improve treatment options for this disorder. Increased clinical trial participation will result in a better understanding of the disease and will also help treatments that are in the research and developmental phases reach patients more quickly. A patient should understand what the trial entails and be educated about the patient's responsibilities and obligations. To find more information on the patient's role in clinical trials, visit www.ninds.nih.gov/parkinsonsweb/clinical_trials_info.htm.

For information on Parkinson's disease clinical trials, visit:
www.clinicaltrials.gov
www.centerwatch.com

To participate in an important survey about clinical trials, please click here.

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PD Caregiver Well-Being

What can friends and family of a person with Parkinson's do?

  • Stay educated about the person's condition and abilities and adapt accordingly.
  • Support environment and lifestyle changes that often need to be made by a person with Parkinson's disease.
  • Encourage medical consultation with a physician.
  • Request a referral for occupational therapy from a family physician to promote maximal capabilities in self-care, household tasks, and valued life activities.

Physical Health
Caregiving can be physically and emotionally draining, especially when caregiving duties are demanding and constant. PD caregivers provided an average of 96 hours of care per week to their care recipients. The vast majority (73%) reported significant health problems. The most prevalent health problems reported involved arthritis (27%), self-reported depression (26%), high blood pressure (23%), and heart trouble (15%). One-third of PD caregivers reported their overall health as fair (28%) or poor (5%), while nearly half of caregivers (46%) stated their health troubles were standing in the way of assuming an expanded caregiving role. Forty-eight percent stated their current health status was worse at the time of assessment than it had been five years earlier. One in five caregivers (20%) had at least three medical exams in the last six months.

Mental Health
PD caregivers experienced high levels of depression as illustrated by an average score of 19.88 on the CES-D3. In fact, 60% of this group scored 16 or higher on the CES-D questionnaire (26% of PD caregivers self-reported depression was a current health problem). Among PD caregivers, women scored significantly higher than men (t = -2.72, p< .01). Interestingly, depression scores did not differ significantly by ethnicity, but did differ by type of relationship between the caregiver and care recipient, albeit not significantly. Mothers and daughters of care recipients scored the highest of all relationship groups on the CES-D (34.5 and 22.0, respectively). PD caregivers were significantly more likely to demonstrate higher depression scores if their care recipients needed supervision with performing personal care tasks compared with PD.

3 Score of 16 or higher on the CES-D demonstrates evidence of clinically significant depressive symptoms. caregivers reporting other functional needs. Additionally, PD caregivers who reported their loved ones were either forgetting what day it was or were being argumentative or irritable, were significantly more likely to score high on the CES-D respectively than PD caregivers whose care recipient did not report these behaviors.

PD Caregiver Strain
More than one-third (38%) of PD caregivers reported the informal help and social support they were receiving was far less than they needed. When asked how burdened they felt in caring for their relatives, 28% of PD caregivers reported feeling “quite a bit” burdened while 16% reported feeling “extremely” burdened. Another 31% of PD caregivers reported feeling “moderately” burdened.

Perception of role
Generally, PD caregivers reported feeling confident in their caregiving role, as demonstrated by an average competency score of 21.4 out of a possible 27. A relatively small percent of caregivers responded “not at all” when asked if they know where and how to request help from others (12%). A majority of caregivers felt that they “somewhat” or “very much” received the emotional support they needed (81%) and were able to develop ways to manage the stresses of caregiving (83%).

Identified PD Caregiver Problems at Assessment
CRC Family Consultants reported the most common problems for PD caregivers at assessment were the need for respite (85%), emotional support (83%), and behavior management (32%). Figure 5 presents the current problems of PD caregivers upon completion of an assessment.

Services Planned for PD Caregivers

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American Parkinson Disease Association
1250 Hylan Blvd.
Suite 4B
Staten Island, NY 10305-1946
apda@apdaparkinson.org
http://www.apdaparkinson.org
Tel: 718-981-8001
800-223-2732
Calif: 800-908-2732
Fax: 718-981-4399

National Parkinson Foundation
1501 N.W. 9th Avenue
Bob Hope Research Center
Miami, FL  33136-1494
mailbox@parkinson.org
http://www.parkinson.org
Tel: 305-243-6666
800-327-4545
Fla: 800-433-7022
Fax: 305-243-5595

Parkinson Alliance
P.O. Box 308
Kingston, NJ 08528-0308
admin@parkinsonalliance.net
http://www.parkinsonalliance.net
Tel: 609-688-0870
800-579-8440
Fax: 609-688-0875

Michael J. Fox Foundation for Parkinson's Research
Grand Central Station
P.O. Box 4777
New York, NY 10163
http://www.michaeljfox.org
Tel: 212-509-0995

Parkinson's Action Network (PAN)
1000 Vermont Ave. N.W.
Suite 900
Washington, DC  20005
info@parkinsonsaction.org
http://www.parkinsonsaction.org
Tel: 800-850-4726 202-842-4101
Calif: 707-544-1994
Fax: 202-842-4105

Parkinson's Disease Foundation (PDF)
710 West 168th Street
New York, NY 10032-9982
info@pdf.org
http://www.pdf.org
Tel: 212-923-4700
800-457-6676
Fax: 212-923-4778

Parkinson's Institute
1170 Morse Avenue
Sunnyvale, CA 94089-1605
outreach@parkinsonsinstitute.org
http://www.parkinsonsinstitute.org
Tel: 408-734-2800
800-786-2958
Fax: 408-734-8522

Parkinson's Resource Organization
74-090 El Paseo
Suite 102
Palm Desert, CA 92260-4135
info@parkinsonsresource.org
http://www.parkinsonsresource.org
Tel: 760-773-5628
310-476-7030
877-775-4111
Fax: 760-773-9803

Worldwide Education & Awareness for Movement Disorders (WE MOVE)
204 West 84th Street
New York, NY 10024
wemove@wemove.org
http://www.wemove.org
Tel: 800-437-MOV2 (6682)
212-875-8312
Fax: 212-875-8389

Bachmann-Strauss Dystonia & Parkinson Foundation
Mt. Sinai Medical Center One Gustave L. Levy Place
P.O. Box 1490
New York, NY 10029
Bachmann.Strauss@mssm.edu
http://www.dystonia-parkinsons.org
Tel: 212-241-5614
Fax: 212-987-0662

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Help for Patients and Caregivers : Asthma

Asthma Is a Serious Lung Disease
What Causes Asthma?
Your Asthma Can Be Controlled With Proper Care
How To Take Care of Your Asthma
How To Work With Your Doctor
Is Your Ashma Under Control?
Taking the Right Medicines at the Right Times
Asthma Medicines: Brand and Generic Names
How to Use Your Metered-Dose Inhaler the Right Way
Asthma Action Plan - Printable form
How to Use Your Peak Flow Meter
How to Control Things That Make Your Asthma Worse
For More Information


If you have asthma, you are not alone. More than 14 million people in the United States have this lung disease. Of these, almost 5 million are children. Asthma is a problem among all races. But the asthma death rate and hospitalization rate for blacks are three times the rate of whites. Proper asthma care could prevent these problems for all. Normal Airway vs Asthma AirwayThis website can help you learn how to control your asthma or help a friend or family member with asthma. Asthma

Asthma Is a Serious Lung Disease
Asthma makes the sides of the airways in your lungs inflamed or swollen all the time. See the drawing below. Your airways react to things like smoke, dust, pollen, or other things. Your airways narrow or become smaller and you get common symptoms like those listed in the box. Asthma that is not well controlled can cause many problems. People miss work or school, go to the hospital, or even die because of their asthma. But you do not have to put up with the problems asthma can cause.

Common Symtoms of Asthma include Coughing, Wheezing, Chest Tightness, and Shortness of Breath

What Causes Asthma?

The cause of asthma is still unknown. From studying asthma patients, researchers have concluded that the following factors can lead to asthma:

Genetic Factors: Asthma has the tendency to run in families. It has not yet been determined what genetic factors actually play a part in determining if a person will be diagnosed with asthma. Individuals who have allergies are more likely to have asthma as well.

Air Quality: General environmental factors such as house dust mites in bedding, carpet ad furnishings, exposure to tobacco smoke during pregnancy or as a small child, and children who are exposed to animals, pollens, molds and dust are more likely to have asthma. The occupational environment also has a large influence on our likelihood of having asthma. Pollens, molds, dust, gases and chemicals can cause our airways to become weak. The following are some examples of hazardous occupations likely to cause asthma: manufacturing, woodworking, farming and working with chemicals.

Dietary Changes: An increase in processed food, increase in salt intake, decrease in antioxidant intake and the lack of fresh oily fish may all increase the chances of cause asthma.

Lack of exercise: In the 21st century there has been an increase in the amount of television that is watched and a decrease in the amount of physical activity. This decrease in physical activity can cause a decrease in the strength of the airway passage causing the airway muscles to abnormally contract when irritated by environmental changes.

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Your Asthma Can Be Controlled With Proper Care
With your doctor's help, you can control your asthma and become free of symptoms most of the time. But your asthma does NOT go away when your symptoms go away. You need to keep taking care of your asthma.

Your asthma cannot be cured - having asthma is a part of your life. So you need to make taking care of your asthma a part of your life. This is true even if your asthma is mild.

 

 

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How To Take Care of Your Asthma

  1. Work with your doctor and see him or her at least every 6 months.
    See: “How To Work With Your Doctor”
  2. Take your asthma medicines exactly as your doctor tells you.
    See: “Taking the Right Medicines at the Right Times”
    “How To Use Your Metered-Dose Inhaler the Right Way”
    “Asthma Action Plan”
  3. Watch for signs that your asthma is getting worse and act quickly.
    See: “Asthma Action Plan” (The action plan gives you some signs that your asthma is getting worse and says when to take medicines.)
    “How To Use Your Peak Flow Meter”
  4. Stay away from or control things that make your asthma worse.
    See: “How To Control Things That Make Your Asthma Worse”

How To Work With Your Doctor

  • Agree on clear treatment goals with your doctor. Your goal is to be able to say “no” to all the questions in the box on section titled, “Is Your Asthma Under Control?
  • Agree on what things you need to do. Then do them.
    - Ask questions until you feel you know what your doctor wants you to do, when you should do it, and why. Tell your doctor if you think you will have trouble doing what is asked. You can work together to find a treatment plan that is right for you.
    - Write down the things you are supposed to do before you leave the doctor's office, or soon after.
    - Put up reminders to yourself to take your medicine on time. Put these notes in places where you will see them.
  • See your doctor at least every 6 months to check your asthma and review your treatment. Call for an appointment if you need one.

Prepare a day or two before each doctor's visit:

  • Answer the questions in "Is Your Asthma Under Control?". Talk to your doctor about your answers. Also, talk about any changes in your home or work that may have made your asthma worse.
  • Write down questions and concerns to discuss with your doctor. Include ALL of your concerns, even those you think are not a big deal.
  • Bring your medicines and written action plan to each visit. If you use a peak flow meter, bring it to each visit.

"The doctor would ask me at each visit how little Jimmy's asthma was. I always forgot to mention some symptoms or other problems. Now it's different. Before we visit the doctor, I write down when Jimmy had symptoms in the past 2 weeks. I also write down all the questions I have. Now when I leave the doctor's office, I feel happy that I got all my issues addressed."

- Deborah, mother of a child with asthma


Is Your Ashma Under Control?
Answer these questions by checking "yes" or "no." Do this just before each doctor's visit.

In the past 2 weeks

1. Have you coughed, wheezed, felt short of breath, or had chest tightness:
      - During the day? _______ Yes _______ No
      - At night, causing you to wake up? _______ Yes _______ No
      - During or soon after exercise? _______ Yes _______ No
2. Have you needed more "quick-relief" medicine than usual? _______ Yes _______ No
3. Has your asthma kept you from doing anything you wanted to do? _______ Yes _______ No
      If yes, what was it?    
      ____________________________________________________________
      ____________________________________________________________
4. Have you asthma medicines caused you any problems, like shakiness, sore throat, or upset stomach? _______ Yes _______ No
In the past few months:    
5. Have you missed school or work because of you asthma? _______ Yes _______ No
6. Have you gone to the emergency room or hospital because of your asthma? _______ Yes _______ No

What Your Answers mean    
- All "no" asnwers? - Your asthma is under control.
- One or more "yes" answers? - Something needs to be done. Read the guide on how to get your asthma under control and talk to your doctor.
   

Taking the Right Medicines at the Right Times
There are two main kinds of medicines for asthma:
(1) those that help with the long-term control of asthma and
(2) those that give short-term quick relief from asthma symptoms. See the list of brand and generic names for asthma medicines.

Long-Term-Control Medicines Are Taken Every Day To Control Asthma
Long-term-control medicines will prevent symptoms and control asthma. But it often takes a few weeks before you feel the full effects of this medicine.

Ask your doctor about taking daily long-term-control medicine if you:

  • Have asthma symptoms three or more times a week, or
  • Have asthma symptoms at night three or more times a month.

If you need a long-term-control medicine, you will need to keep taking your medicine each day, even when you feel well. This is the only way you can keep your asthma under control. Make taking your long-termcontrol medicine a part of your daily routine—just like eating, sleeping, and brushing your teeth.

The Long-Term-Control Medicines
The most effective long-term-control medicines are those that reduce swelling in your airways (inflammation). These medicines include inhaled steroids, cromolyn, and nedocromil.

  • Inhaled steroids and steroid tablets or liquids are the strongest long-term-control medicines. The steroids used for asthma are NOT the same as the unsafe steroids some athletes take to build muscles.
    • Inhaled steroids are used to prevent symptoms and control mild, moderate, and severe asthma. Inhaled steroids are safe when taken at recommended doses. This is because the medicine goes right to your lungs where you need it. This reduces the amount of medicine you need and the chance of any side effects.
    • Steroid tablets or liquids are used safely for short times to quickly bring asthma under control. They are also used longer term to control the most severe asthma.
  • Cromolyn and nedocromil are often the choice of medicine for children with mild asthma.
  • Inhaled long-acting beta2- agonists are used to help control moderate-to-severe asthma and to prevent nighttime symptoms. Long-acting beta2-agonists do not reduce inflammation. Therefore, patients taking this medicine also need to take inhaled steroids. Inhaled longacting beta2-agonists should not be used for quick relief of asthma attacks.
  • Sustained-release theophylline or sustained-release beta2- agonist tablets can help prevent nighttime symptoms. These medicines are used with inhaled steroids, nedocromil, or cromolyn. Theophylline is sometimes used by itself to treat mild asthma. The dose for theophylline must be checked over time to prevent side effects.
  • Zileuton and zafirlukast are a more recent type of long-termcontrol medicine. Studies so far show that it is used mainly for mild asthma in patients 12 years of age and older.

Quick-Relief Medicines Are Taken Only When Needed
Inhaled quick-relief medicine quickly relaxes and opens your airways and relieves asthma symptoms. But it only helps for about 4 hours. Quick-relief medicine cannot keep symptoms from coming back - only long-termcontrol medicines can do that.

Take quick-relief medicine when you first begin to feel symptoms - like coughing, wheezing, chest tightness, or shortness of breath. Your doctor may tell you to use a peak flow meter to help you know when to take your inhaled quickrelief medicines. Do not delay taking your quickrelief medicine when you have symptoms. This can keep you from having a really bad asthma attack. Tell your doctor if you notice you are using more of this medicine than usual. This is often a sign that your long-term-control medicine needs to be changed or increased.

Make an Action Plan With Your Doctor
Ask your doctor to help you fill out the "Asthma Action Plan". Be sure you know when to take your medicine and what to do when your asthma gets worse.

"I always thought if you had asthma you should expect to have asthma symptoms. My new doctor disagreed. She told me to take an "inhaled steroid" every day for my asthma. Well, I did not feel anything at first. But after about 3 weeks, my symptoms came less often. Now, after a few months on this medicine, I can see my doctor was right. Asthma can really be controlled."

Glen, a long-time asthma patient

Asthma Medicines: Brand and Generic Names, 1997*
Asthma Long-Term Control Medications
Generic Name Brand Name

Steroids: Inhaled
belomethasone Beclovent®
Vanceril®, Vanceril®—Double
Strength
budesonide Pulmicort Turbuhalor®
flunisolide AeroBid®, AeroBid-M®
fluticasone Flovent®
triamcinolone Azmacort®

Cromolyn and Nedocromil: Inhaled
cromolyn sodium Intal®
nedocromil sodium Tilade®

Leukotriene Modifiers: Tablets
zafirlukast Accolate®
zileuton Zyflo®

Long-Acting Beta2-Agonists
salmeterol (inhaled) Serevent®
albuterol Volmax®
(extended release tablets) Proventil Repetabs ®

Theophylline: Tablets or liquid
Aerolate® III
Aerolate® JR
Aerolate® SR
Choledyl® SA
Elixophyllin®
Quibron®-T
Quibron®-T/SR
Slo-bid®
Slo-Phyllin®
Theo-24®
Theochron®
Theo-Dur®
Theolair®
Theolair®-SR
T-Phyl®
Uni-Dur®
Uniphyl®
Asthma Quick-Relief Medications
Generic Name Brand Name

Short-Acting Beta2-Agonists: Inhaled
albuterol Airet®
Proventil®
Proventil HFA®
Ventolin®
Ventolin® Rotacaps
bitolterol Tornalate®
pirbuterol Maxair®
terbutaline Brethaire®
Brethine® (tablet only)
Bricanyl® (tablet only)

Anticholinergics: Inhaled
ipratropium bromide Atrovent®

Steroids: Tablets or liquids
methylprednisolone Medrol®
prednisone Prednisone
Deltasone®
Orasone®
Liquid Pred®
Prednisone Intensol®
prednisolone Prelone®
Pediapred®
 
* This glossary is a complete list of brand names associated with the appropriate generic names of asthma medications, as listed in the United States Pharmacopeial Convention, Inc., Approved Drug Products and Legal Requirements, Volume III, 17th edition, 1997, and the USP DI Drug Information for Health Care Professionals, Volume I, 17th edition, 1997. This list does not constitute an endorsement of these products by the National Heart, Lung, and Blood Institute.

How to Use Your Metered-Dose Inhaler the Right Way
     Using an inhaler seems simple, but most patients do not use it the right way. When you use your inhaler the wrong way, less medicine gets to your lungs. (Your doctor may give you other types of inhalers.)
     For the next 2 weeks, read these steps aloud as you do them or ask someone to read them to you. Ask your doctor or nurse to check how well you are using your inhaler.
     Use your inhaler in one of the three ways pictured below (A or B are best, but C can be used if you have trouble with A and B).
Steps for Using Your Inhaler  
Getting Ready  
1. Take off the cap and shake the inhaler.
2. Breathe out all the way.
3. Hold your inhaler the way your doctor said (A, B, or C below).
Breathe in slowly    
4. As you start breathing in slowly through your mouth, press down on the inhaler one time. (If you use a holding chamber, first press down on the inhaler. Within 5 seconds, begin to breathe in slowly.)
5. Keep breathing in slowly, as deeply as you can.
Hold your breath     6. Hold your breath as you count to 10 slowly, if you can.
7. For inhaled quick-relief medicine (beta2-agonists), wait about 1 minute between puffs. There is no need to wait between puffs for other medicines.
A. Hold inhaler 1 to 2 inches in front of your mouth (about the width of two fingers). B. Use a spacer/holding chamber. These come in
many shapes and can be useful to any patient.
C. Put the inhaler in your mouth. Do not use for steroids.
A. Hold inhaler 1 to 2inches in front of your mouth (about the width of two fingers).
B. Use a spacer/holding chamber. These come in many shapes and can be useful to any patient.
C. Put the inhaler in your mouth. Do not use for steroids
Clean Your Inhaler as Needed
Look at the hole where the medicine sprays out from your inhaler. If you see "powder" in or around the hole, clean the inhaler. Remove the metal canister from the L-shaped plastic mouthpiece. Rinse only the mouthpiece and cap in warm water. Let them dry overnight. In the morning, put the canister back inside. Put the cap on.
Know When To Replace Your Inhaler
For medicines you take each day (an example): Say your new canister has 200 puffs (number of puffs is listed on canister) and you are told to take 8 puffs per day.


So this canister will last 25 days. If you started using this inhaler on May 1, replace it on or before May 25.

You can write the date on your canister. For quick-relief medicine take as needed and count each puff.

Do not put your canister in water to see if it is empty. This does not work.



How to Use Your Peak Flow Meter
A peak flow meter helps you check how well your asthma is controlled. Peak flow meters
are most helpful for people with moderate or severe asthma.
This guide will tell you (1) how to find your personal best peak flow number, (2) how to use your personal best number to set your peak flow zones, (3) how to take your peak flow, and (4) when to take your peak flow to check your asthma each day.
Starting Out: Find Your Personal Best Peak Flow Number

To find your personal best peak flow number, take your peak flow each day for 2 to 3 weeks. Your asthma should be under good control during this time. Take your peak flow as close to the times listed below as you can. These times for taking your peak flow are only for finding your personal best peak flow.

  • Between noon and 2:00 p.m. each day
  • Each time you take your quickrelief medicine to relieve symptoms (measure your peak flow after you take your medicine)
  • Any other time your doctor suggests

Write down the number you get for each peak flow reading. The highest peak flow number you had during the 2 to 3 weeks is your personal best.

Your personal best can change over time. Ask your doctor when to check for a new personal best.

To check your asthma each day, you will take your peak flow in the morning. This is discussed in the coming text.

Your Peak Flow Zones Your peak flow zones are based on your personal best peak flow number. The zones will help you check your asthma and take the right actions to keep it controlled. The colors used with each zone come from the traffic light.
Green Zone (80 to 100 percent of your personal best) signals good control. Take your usual daily long-term-control medicines, if you take any. Keep taking these medicines even when you are in the yellow or red zones.
Green Zone (80 to 100 percent of your personal best) signals good control. Take your usual daily long-term-control medicines, if you take any. Keep taking these medicines even when you are in the yellow or red zones.
Yellow Zone (50 to 79 percent of your personal best) signals caution: your asthma is getting worse. Add quick-relief medicines. You might need to increase other asthma medicines as directed by your doctor.
Yellow Zone (50 to 79 percent of your personal best) signals caution: your asthma is getting worse. Add quick-relief medicines. You might need to increase other asthma medicines as directed by your doctor.
Red Zone (below 50 percent of your personal best) signals medical alert! Add or increase quick-relief medicines and call your doctor now.
Red Zone (below 50 percent of your personal best) signals medical alert! Add or increase quick-relief medicines and call your doctor now.

Ask your doctor to write an action plan for you that tells you:

  • The peak flow numbers for your green, yellow, and red zones. Mark the zones on your peak flow meter with colored tape or a marker.
  • The medicines you should take while in each peak flow zone.

How To Take Your Peak Flow

  1. Move the marker to the bottom of the numbered scale.
  2. Stand up or sit up straight.
  3. Take a deep breath. Fill your lungs all the way.
  4. Hold your breath while you place the mouthpiece in your mouth, between your teeth. Close your lips around it. Do not put your tongue inside the hole.
  5. Blow out as hard and fast as you can. Your peak flow meter will measure how fast you can blow out air.
  6. Write down the number you get. But if you cough or make a mistake, do not write down the number. Do it over again.
  7. Repeat steps 1 through 6 two more times. Write down the highest of the three numbers. This is your peak flow number.
  8. Check to see which peak flow zone your peak flow number is in. Do the actions your doctor told you to do while in that zone.

Your doctor may ask you to write down your peak flow numbers each day. You can do this on a calendar or other paper. This will help you and your doctor see how your asthma is doing over time.

Checking Your Asthma: When To Use Your Peak Flow Meter

  • Every morning when you wake up, before you take medicine. Make this part of your daily routine.
  • When you are having asthma symptoms or an attack. And after taking medicine for the attack. This can tell you how bad your asthma attack is and whether your medicine is working.
  • Any other time your doctor suggests. If you use more than one peak flow meter (such as at home and at school), be sure that both meters are the same brand.

Bring to Each of Your Doctor's Visits:

  • Your peak flow meter.
  • Your peak flow numbers if you have written them down each day.

Also, ask your doctor or nurse to check how you use your peak flow meter - just to be sure you are doing it right.


How to Control Things That Make Your Asthma Worse
You can help prevent asthma attacks by staying away from things that make your asthma worse. This guide suggests many ways to help you do this.

You need to find out what makes your asthma worse. Some things that make asthma worse for some people are not a problem for others. You do not need to do all of the things listed in this guide.

Look at the things listed in dark print below. Put a check next to the ones that you know make your asthma worse. Ask your doctor to help you find out what else makes your asthma worse. Then, decide with your doctor what steps you will take. Start with the things in your bedroom that bother your asthma. Try something simple first.

Tobacco Smoke

  • If you smoke, ask your doctor for ways to help you quit. Ask family members to quit smoking, too.
  • Do not allow smoking in your home or around you.
  • Be sure no one smokes at a child's day care center.

Smoke, Strong Odors, and Sprays

  • If possible, do not use a wood-burning stove, kerosene heater, or fireplace.
  • Try to stay away from strong odors and sprays, such as perfume, talcum powder, hair spray, and paints.

Indoor Mold

  • Fix leaky faucets, pipes, or other sources of water.
  • Clean moldy surfaces with a cleaner that has bleach in it.

Dust Mites
Many people with asthma are allergic to dust mites. Dust mites are like tiny "bugs" you cannot see that live in cloth or carpet.

Things that will help the most:

  • Encase your mattress in a special dust-proof cover.*
  • Encase your pillow in a special dust-proof cover* or wash the pillow each week in hot water. Water must be hotter than 1300F to kill the mites.
  • Wash the sheets and blankets on your bed each week in hot water.

Other things that can help:

  • Reduce indoor humidity to less than 50 percent. Dehumidifiers or central air conditioners can do this.
  • Try not to sleep or lie on cloth-covered cushions or furniture.
  • Remove carpets from your bedroom and those laid on concrete, if you can.
  • Keep stuffed toys out of the bed or wash the toys weekly in hot water.

Animal Dander
Some people are allergic to the flakes of skin or dried saliva from animals with fur or feathers.

The best thing to do:

  • Keep furred or feathered pets out of your home.

If you can't keep the pet outdoors, then:

  • Keep the pet out of your bedroom and keep the bedroom door closed.
  • Cover the air vents in your bedroom with heavy material to filter the air.*
  • Remove carpets and furniture covered with cloth from your home. If that is not possible, keep the pet out of the rooms where these are.

Cockroach
Many people with asthma are allergic to the dried droppings and remains of cockroaches.

  • Keep all food out of your bedroom.
  • Keep food and garbage in closed containers (never leave food out).
  • Use poison baits, powders, gels, or paste (for example, boric acid). You can also use traps.
  • If a spray is used to kill roaches, stay out of the room until the odor goes away.

Vacuum Cleaning

  • Try to get someone else to vacuum for you once or twice a week, if you can. Stay out of rooms while they are being vacuumed and for a short while afterward.
  • If you vacuum, use a dust mask (from a hardware store), a double-layered or microfilter vacuum cleaner bag,* or a vacuum cleaner with a HEPA filter.*

Pollen and Outdoor Mold
What to do during your allergy season (when pollen or mold spore counts are high):

  • Try to keep your windows closed.
  • Stay indoors with windows closed during the midday and afternoon, if you can. Pollen and some mold spore counts are highest at that time.
  • Ask your doctor whether you need to take or increase anti-inflammatory medicine before your allergy season starts.

Exercise, Sports, Work, or Play

  • You should be able to be active without symptoms. See your doctor if you have asthma symptoms when you are active - like when you exercise, do sports, play, or work hard.
  • Ask your doctor about taking medicine before you exercise to prevent symptoms.
  • Warm up for about 6 to 10 minutes before you exercise.
  • Try not to work or play hard outside when the air pollution or pollen levels (if you are allergic to the pollen) are high.

Other Things That Can Make Asthma Worse

  • Flu: Get a flu shot.
  • Sulfites in foods: Do not drink beer or wine or eat shrimp, dried fruit, or processed potatoes if they cause asthma symptoms.
  • Cold air: Cover your nose and mouth with a scarf on cold or windy days.
  • Other medicines: Tell your doctor about all the medicines you may take. Include cold medicines, aspirin, and even eye drops.

Contact These Groups to Learn More About Asthma:

National Asthma Education and Prevention Program
NHLBI Information Center,
P.O. Box 30105, Bethesda, MD 20824-0105
Phone: 301-251-1222
Internet: http://www.nhlbi.nih.gov/index.htm
Allergy and Asthma Network/ Mothers of Asthmatics, Inc.
Phone: 800-878-4403
Internet: http://www.aanma.org
American Academy of Allergy, Asthma, and Immunology
Phone: 800-822-2762
Internet: http://www.aaaai.org
American College of Allergy, Asthma, and Immunology
Phone: 800-842-7777
Internet: http://allergy.mcg.edu
American Lung Association
Phone: 800-586-4872
Internet: http://www.lungusa.org
Asthma and Allergy Foundation of America
Phone: 800-727-8462
Internet: http://www.aafa.org
National Jewish Medical and Research Center (Lung Line®)
Phone: 800-222-5864
Internet: http://www.njc.org
 

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Help for Patients and Caregivers : Cystic Fibrosis

What is Cystic Fibrosis?
Common Symptoms
What Causes Cystic Fibrosis?
Medications
Surgical Treatments
Caregiver Information
Additional Information


What is Cystic Fibrosis?
Cystic fibrosis (CF) — a life-threatening disorder that causes severe lung damage and nutritional deficiencies. CF is an inherited (genetic) condition affecting the cells that produce mucus, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, but in CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the pancreas and lungs. Respiratory failure is the most dangerous consequence of CF. Each year approximately 3,200 white babies are born in the United States with CF. The disease is much less common among black and Asian-American children. Most babies born with CF are diagnosed by age 3, although mild forms of the disease may not be detected until the third, fourth or fifth decade of life. In all, about 30,000 American adults and children are living with the disorder. Although there's still no cure, the emerging field of gene therapy may someday help correct lung problems in people with CF.

Lung Cells - Normal vs. Cystic Fibrosis

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Common Symptoms?
The symptoms of cystic fibrosis usually appear within the first year of life, but may not appear until late childhood or adolescence. The specific signs and symptoms of CF can vary, depending on the severity of the disease and with age. For example, one child with CF may have respiratory problems but not digestive problems, while another child may have both.

In some newborns the first sign may be a blockage of the intestines (meconium ileus). This occurs when meconium — tarry, greenish-black stools normally passed by an infant in the first day or two after birth — becomes so thick it can't move through the intestines. Other signs in newborns may include a failure to grow, bulky and greasy stools (steatorrhea), and frequent respiratory infections.

The signs and symptoms of CF in children and young adults may include:

  • Salty taste to the skin. People with CF tend to have two to five times the normal amount of salt (sodium chloride) in their sweat. This may be one of the first signs parents notice because they taste the salt when they kiss their child.
  • Blockage in the bowel.
  • Foul-smelling, greasy stools.
  • Delayed growth.
  • Thick sputum. It's easy for parents to overlook this symptom because infants and young children tend to swallow their sputum rather than cough it up.
  • Coughing or wheezing.
  • Frequent chest and sinus infections with recurring pneumonia or bronchitis.
  • Growths (polyps) in the nasal passages.
  • Cirrhosis of the liver due to inflammation or obstruction of the bile ducts.
  • Displacement of one part of the intestine into another part of the intestine (intussusception) in children older than age 4.
  • Protrusion of part of the rectum through the anus (rectal prolapse). This is often caused by stools that are difficult to pass or by frequent coughing.
  • Enlargement or rounding (clubbing) of the fingertips and toes. Although clubbing eventually occurs in most people with CF, it also occurs in some people born with heart disease and other types of lung problems.
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What Causes Cystic Fibrosis?
It is most common in Caucasian-American children, occurring in about one in every 2,000 births. It is less common among African-American children, (about one in 17,000 births), and even more rare among Asian Americans (one in 100,000 births).

The mode of inheritance is autosomal, which means that it does not involve the x or y chromosomes, which determine sex. It is also recessive, which means that the disease is inherited from both parents. About five percent of Caucasian Americans (one in 28) are believed to carry the gene. Carriers do not have symptoms of the disease, and often do not even realize that they are one of more than 10 million people who carry cystic fibrosis. The number of cystic fibrosis carriers is likely to increase in the future.

This chart can help you determine the genetic probability of having a child with cystic fibrosis

Parents
Chance of Unaffected Child
Chance of Child Carrier
Chance of Child with CF
Unaffected + Carrier
50%
50%
No Chance
Two Carriers
25%
50%
25%
Unaffected + CF Patient
No Chance
100%
No Chance
Carrier + CF Patient
No Chance
50%
50%

 

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Medications for Cystic Fibrosis
Many treatments exist for the symptoms and complications of CF. The main goal is to prevent infections, reduce the amount and thickness of secretions in the lungs, improve airflow, and maintain adequate calories and nutrition.To accomplish these objectives, treatments for CF may include:

  • Antibiotics. Newer antibiotics may more effectively fight the bacteria that cause lung infections in people with CF. Among these are aerosolized antibiotics that send medication directly into airways. One of the major drawbacks of long-term use of antibiotics is the development of bacteria that are resistant to drug therapy.
  • Mucus-thinning drugs. When your white blood cells attack bacteria in your airways, DNA in the cells is released, making the mucus in your airways even thicker. The aerosolized drug dornase alfa (Pulmozyme) is an enzyme that fragments DNA, making mucus thinner and easier to cough up. Side effects of Pulmozyme may include airway irritation and sore throat.
  • Bronchodilators. Use of medications such as albuterol (Proventil, Ventolin) may help keep open the bronchial tubes by clearing thick secretions.
  • Bronchial airway drainage. People with CF need a way to physically remove thick mucus from their lungs. This is often done by manually clapping on the front and back of the chest — a procedure that's best performed with the person's head over the edge of the bed so that gravity helps clear the secretions. In some cases an electric chest clapper, known as a mechanical percussor, is used. An inflatable vest that vibrates at high frequency can also help people with CF cough up secretions. Both adults and children with CF need to have bronchial airway drainage at least twice a day for 20 to 30 minutes. Older children and adults can learn to do this themselves, especially if they use mechanical aids such as vests and percussors. Young children need the aid of parents, grandparents or older siblings.
  • Exercise. Children with CF should be active. They can swim, ride bikes, run, play sports and games. Most children with CF can do any exercise they want.
    Exercise can:
    - Loosen mucus in the lungs so it can be coughed up easier;
    - Cause coughing, which helps clear the lungs;
    - Strengthen breathing muscles and the heart.
  • Oral enzymes and better nutrition. CF can cause you to become malnourished because the pancreatic enzymes needed for digestion don't reach your small intestine, preventing food from being absorbed. As a result, you may need many more calories than you otherwise would. Supplemental high-calorie nutrition, special vitamins and enteric-coated oral pancreatic enzymes can help you maintain or even gain weight.
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Surgical Treatments

Lung transplantation. Your doctor may suggest lung transplantation if you have severe breathing problems, life-threatening pulmonary complications or increasing resistance to antibiotics used to treat lung infections. Whether you're a good candidate for the procedure depends on a number of factors, including your overall health, certain lifestyle factors and the availability of donor organs. Because both lungs are affected by CF, both need to replaced. If your chest isn't large enough to hold two adult donor lungs, your surgeon is likely to use two lower lobes contributed by two living donors. However it's performed, lung transplantation is a major operation and may lead to serious complications, especially post-surgical infections. The five-year survival rate has increased in the last 10 years, however.

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CF Caregiver Well-Being

If you have a child with CF, one of the best things you can do is to learn as much as possible about the disease. Diet, medication and early recognition of infection are important.Also important is performing daily chest percussion to drain mucus from your child's lungs. Your doctor or respiratory therapist can show you the best way to perform this lifesaving procedure. In addition, the following steps can help aid your child's health:

  • Keep your child's immunizations up-to-date. This includes your child's pneumococcal and influenza vaccines. CF doesn't affect the immune system, but children with CF are more likely to develop complications when they become sick.
  • Encourage your child to lead as normal and active a life as possible. Exercise is extremely important for people of all ages who have CF. Regular exercise helps loosen mucus in your airways and strengthens your heart and lungs. And for many people with CF, participating in sports can improve confidence and self-esteem.
  • Make sure your child eats a healthy diet. Be sure to discuss your child's dietary needs with your doctor or a nutritionist.
    Use nutrition supplements. Provide the fat-soluble vitamin supplements and pancreatic enzymes your child needs to stay as healthy as possible.
  • Emphasize liquids. Encourage your child to drink plenty of liquids to help loosen the mucus. This is especially important in the summer when children are active and tend to lose a lot of fluids.
  • Eliminate smoke. Don't smoke in your home or car, and don't allow other people to smoke around your child. Secondhand smoke is harmful for everyone, but especially for people with CF.
  • Encourage hand washing. Teach everyone in your family to wash their hands thoroughly before eating, after using the bathroom, when coming home from work or school, and after being around a person who is sick. Hand washing is the best way to protect against infection.
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Additional Information

To stay healthy, those with cystic fibrosis need regular visits and examinations at a Cystic Fibrosis Foundation-accredited care center. These centers provide specialized care for those with cystic fibrosis. Usually patients are seen every six to eight weeks by the specialized cystic fibrosis team. This team consists of a doctor, nurse, respiratory therapist, dietitian, physical therapist, social worker and in some cases a psychologist. Knowing the change or increase in symptoms is helpful. It is important for patients with cystic fibrosis to exercise, eat healthy high calorie diets, and take their medications and treatments as directed even though the treatments take up a great deal of time.

National Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
E-Mail: NHLBIinfo@rover.nhlbi.nih.gov
http://www.nhlbi.nih.gov
Cystic Fibrosis Foundation
6931 Arlington Rd.
Bethesda, MD 20814
Phone: (301) 951-4422
Toll-Free: (800) 344-4823
Fax: (301) 951-6378
E-Mail: info@cff.org
http://www.cff.org/

 

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Help for Patients and Caregivers : Muscular Dystrophy

What is Muscular Dystrophy?
Common Symptoms
What Causes Muscular Dystrophy?
Treatments
Caregiver Information
Additional Information


What is Muscular Dystrophy?
Muscular dystrophy (MD) is a group of rare inherited muscle diseases in which muscle fibers are unusually susceptible to damage. Muscles, primarily your voluntary muscles, become progressively weaker. In the late stages of muscular dystrophy, fat and connective tissue often replace muscle fibers. In some types of muscular dystrophy, heart muscles, other involuntary muscles and other organs are affected. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic. The various types of the disease affect more than 50,000 Americans. There's no cure, but medications and therapy can slow the course of the disease.

Duchenne MD - primarily affects boys and is the result of mutations in the gene that regulates dystrophin - a protein involved in maintaining the integrity of muscle fiber. Onset is between 3-5 years and progresses rapidly. Most boys become unable to walk at 12, and by 20 have to use a respirator to breathe.
Becker-type muscular dystrophy - Like Duchenne dystrophy, Becker-type muscular dystrophy is linked to the X chromosome, affects dystrophin production, and occurs in males. However, the illness is about 10 times rarer than Duchenne, and it produces milder symptoms. Some people seem to have a form of disease that is intermediate in severity between Duchenne and Becker-type.
Facioscapulohumeral MD - appears in adolescence and causes progressive weakness in facial muscles and certain muscles in the arms and legs. It progresses slowly and can vary in symptoms from mild to disabling.
Limb-girdle muscular dystrophy - This form of muscular dystrophy affects muscles of the shoulders and hips. It includes several different illnesses, which can be inherited by both males and females.
Myotonic MD - varies in the age of onset and is characterized by myotonia (prolonged muscle spasm) in the fingers and facial muscles; a floppy-footed, high-stepping gait; cataracts; cardiac abnormalities; and endocrine disturbances. Individuals with myotonic MD have long faces and drooping eyelids; men have frontal baldness.

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Common Symptoms?
Symptoms of muscular dystrophy, as well as their age of onset, vary according to the specific form of illness:

  • Duchenne dystrophy - Signs and symptoms of Duchenne's usually appear between the ages of 2 and 5. It first affects the muscles of the pelvis, upper arms and upper legs. By late childhood, most children with this form of muscular dystrophy are unable to walk. Most die by their late teens or early 20s, often from pneumonia, respiratory muscle weakness or cardiac complications. Some people with Duchenne's MD may exhibit curvature of their spine (scoliosis).
  • Becker-type muscular dystrophy - Signs and symptoms of Becker's MD are similar to those of Duchenne's. The onset of the signs and symptoms is generally later, from age 5 to 16
  • Myotonic dystrophy - Muscle myotonia (abnormally prolonged muscle contraction, with difficulty relaxing) may develop soon after birth or begin as late as early adulthood, especially affecting the hands, wrists and tongue. There also is wasting and weakening of facial muscles, neck muscles, and muscles of the wrists, fingers and ankles. Involvement of the tongue and throat muscles causes speech problems and difficulty swallowing. If the diaphragm and chest muscle also are involved, there may be breathing problems.
  • Limb-girdle muscular dystrophy - Symptoms begin in late childhood or early adulthood. They include progressive muscle weakness in the shoulders and hips, together with breathing problems (if the diaphragm is involved). If illness also affects the heart muscle, there may be heart failure or abnormal heart rhythms.
  • Facioscapulohumeral muscular dystrophy - Symptoms may begin during infancy, late childhood, or early adulthood. Usually, the first sign is facial weakness, with difficulty smiling, whistling and closing the eyes. Later, there is difficulty raising the arms or flexing the wrists and/or ankles.
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What Causes Muscular Dystrophy?
Muscular dystrophy is a general term for a group of inherited diseases involving a defective gene. Each form of muscular dystrophy is caused by a genetic mutation that's particular to that type of the disease.

Duchenne's and Becker's muscular dystrophies are passed from mother to son through one of the mother's genes in a pattern called X-linked recessive inheritance. Boys inherit an X chromosome from their mother and a Y chromosome from their father. The X-Y combination makes them male. Girls inherit two X chromosomes, one from their mother and one from their father. The X-X combination determines that they are female.

The defective gene that causes Duchenne's and Becker's muscular dystrophies is located on the X-chromosome. Women who have the defective gene that causes these muscular dystrophies are simply carriers and exhibit no signs or symptoms of the disease. The disease can "skip" a generation until another son inherits the defective gene on the X-chromosome. In some cases of Duchenne's and Becker's muscular dystrophies, the disease arises from a new mutation in a gene rather than from an inherited defective gene.

Myotonic dystrophy is passed along in a pattern called autosomal dominant inheritance. If either parent carries the defective gene for myotonic dystrophy, there's a 50 percent chance the disorder will be passed along to a child.

Some of the less common types of muscular dystrophy are passed along in the same inheritance pattern that marks Duchenne's and Becker's muscular dystrophies. Other types of muscular dystrophy can be passed on from generation to generation and affect males and females equally. Still others require a defective gene from both parents.

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Treatments for Muscular Dystrophy
There is no cure for muscular dystrophy, although some drugs still in the trial stage have shown promise in slowing or delaying the progression of the disease. For the time being, treatment is aimed at preventing complications due to the effects of weakness, decreased mobility, contractures, scoliosis, heart defects and respiratory weakness.

Physical therapy: Physical therapy, especially regular stretching, is important in helping to maintain the range of motion for affected muscles and to prevent or delay contractures. Strengthening other muscles to compensate for weakness in affected muscles may be of benefit also, especially in earlier stages of milder MD. Regular exercise is important in maintaining good, overall health, but strenuous exercise may damage muscles further. For patients whose leg muscles are affected, braces may help lengthen the period of time that they can walk independently.

Medications: Doctors prescribe medications to treat some forms of muscular dystrophy:

    • For myotonic dystrophy. The medications phenytoin (Dilantin, Phenytek), quinine and procainamide (Pronestyl) may be used to treat the delayed muscle relaxation that occurs in myotonic dystrophy.
    • For Duchenne's muscular dystrophy. The anti-inflammatory corticosteroid medication prednisone (Deltasone) may help improve muscle strength and delay the progression of Duchenne's MD.

Occupational therapy: Occupational therapy involves employing methods and tools to compensate for a patient’s loss of strength and mobility. This may include modifications at home, dressing aids, wheelchair accessories and communication aids.

Nutrition: Nutrition has not been shown to treat any conditions of MD, but it is essential to maintaining good health.

Cardiac care: Arrhythmias are often a symptom with Emery-Dreifuss and Becker MD and may need to be treated with special drugs. Pacemakers may also be needed in some cases and heart transplants are becoming more common for men with Becker MD.

Respiratory care: When the muscles of the diaphragm and other respiratory muscles become too weak to function on their own, a patient may require a ventilator to continue breathing deeply enough. Air may also be administered through a tube or mouthpiece. It is therefore very important to maintain healthy lungs to reduce the risk of respiratory complications.

Surgery: To release the contractures that may develop and that can position joints in painful ways, doctors can perform a tendon release surgery. This may be done to relieve tendons of your hip and knee and on the Achilles tendon at the back of your foot. Surgery may also be needed to correct curvature of your spine.

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MD Caregiver Well-Being

For family members of people with muscular dystrophy, coping with the illness involves a major commitment of physical, emotional and financial effort. The disease presents challenges in the classroom, in the home and in all aspects of life.

In dealing with a disease such as muscular dystrophy, support groups can be a valuable part of a wider network of social support that includes health care professionals, family, friends and place of religious worship.

Support groups bring together people, family and friends who are coping with the same kind of physical or mental health challenge. Support groups provide a setting in which people can share their common problems and provide ongoing support to one another.

Ask your doctor about self-help groups that may exist in your community. Your local health department, public library, telephone book and the Internet also may be good sources to locate a support group in your area.

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Additional Information  

The Muscular Dystrophy Association
National Headquarters
3300 E. Sunrise Drive
Tucson, AZ 85718
(800) 572-1717
www.mda.org
Muscular Dystrophy Family Foundation
615 North Alabama Street Suite 330
Indianapolis IN 46204-1213
(800) 544-1213
www.mdff.org

 

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Help for Patients and Caregivers : Sleep Apnea

What is Sleep Apnea?
Who Gets Sleep Apnea?
What Causes Sleep Apnea?
How is Normal Breathing Restored During Sleep?
What are the Effects of Sleep Apnea?
When Should Sleep Apnea be Suspected?
How is Sleep Apnea Diagnosed?
How is Sleep Apnea Treated?
For More Information


WHAT IS SLEEP APNEA?
Sleep apnea is a serious, potentially lifethreatening condition that is far more common than generally understood. First described in 1965, sleep apnea is a breathing disorder characterized by brief interruptions of breathing during sleep. It owes its name to a Greek word, apnea, meaning "want of breath." There are two types of sleep apnea: central and obstructive. Central sleep apnea, which is less common, occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations. Obstructive sleep apnea is far more common and occurs when air cannot flow into or out of the person's nose or mouth although efforts to breathe continue. In a given night, the number of involuntary breathing pauses or "apneic events" may be as high as 20 to 30 or more per hour. These breathing pauses are almost always accompanied by snoring between apnea episodes, although not everyone who snores has this condition. Sleep apnea can also be characterized by choking sensations. The frequent interruptions of deep, restorative sleep often lead to early morning headaches and excessive daytime sleepiness. Early recognition and treatment of sleep apnea is important because it may be associated with irregular heartbeat, high blood pressure, heart attack, and stroke.

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WHO GETS SLEEP APNEA?
Sleep apnea occurs in all age groups and both sexes but is more common in men (it may be underdiagnosed in women) and possibly young African Americans. It has been estimated that as many as 18 million Americans have sleep apnea. Four percent of middle-aged men and 2 percent of middle- aged women have sleep apnea along with excessive daytime sleepiness. People most likely to have or develop sleep apnea include those who snore loudly and also are overweight, or have high blood pressure, or have some physical abnormality in the nose, throat, or other parts of the upper airway. Sleep apnea seems to run in some families, suggesting a possible genetic basis.


WHAT CAUSES SLEEP APNEA?
Certain mechanical and structural problems in the airway cause the interruptions in breathing during sleep. In some people, apnea occurs when the throat muscles and tongue relax during sleep and partially block the opening of the airway. When the muscles of the soft palate at the base of the tongue and the uvula (the small fleshy tissue hanging from the center of the back of the throat) relax and sag, the airway becomes blocked, making breathing labored and noisy and even stopping it altogether. Sleep apnea also can occur in obese people when an excess amount of tissue in the airway causes it to be narrowed. With a narrowed airway, the person continues his or her efforts to breathe, but air cannot easily flow into or out of the nose or mouth. Unknown to the person, this results in heavy snoring, periods of no breathing, and frequent arousals (causing abrupt changes from deep sleep to light sleep). Ingestion of alcohol and sleeping pills increases the frequency and duration of breathing pauses in people with sleep apnea.

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HOW IS NORMAL BREATHING RESTORED DURING SLEEP?
During the apneic event, the person is unable to breathe in oxygen and to exhale carbon dioxide, resulting in low levels of oxygen and increased levels of carbon dioxide in the blood. The reduction in oxygen and increase in carbon dioxide alert the brain to resume breathing and cause an arousal. With each arousal, a signal is sent from the brain to the upper airway muscles to open the airway; breathing is resumed, often with a loud snort or gasp. Frequent arousals, although necessary for breathing to restart, prevent the patient from getting enough restorative, deep sleep.


WHAT ARE THE EFFECTS OF SLEEP APNEA?
Because of the serious disturbances in their normal sleep patterns, people with sleep apnea often feel very sleepy during the day and their concentration and daytime performance suffer. The consequences of sleep apnea range from annoying to life threatening. They include depression, irritability, sexual dysfunction, learning and memory difficulties, and falling asleep while at work, on the phone, or driving. It has been estimated that up to 50 percent of sleep apnea patients have high blood pressure. Although it is not known with certainty if there is a cause and effect relationship, it appears that sleep apnea contributes to high blood pressure. Risk for heart attack and stroke may also increase in those with sleep apnea. In addition, sleep apnea is sometimes implicated in sudden infant death syndrome.


WHEN SHOULD SLEEP APNEA BE SUSPECTED?
For many sleep apnea patients, their spouses are the first ones to suspect that something is wrong, usually from their heavy snoring and apparent struggle to breathe. Coworkers or friends of the sleep apnea victim may notice that the individual falls asleep during the day at inappropriate times (such as while driving a working, or talking). The patient often does not know he or she has problem and may not believe it when told. It is important that the person see a doctor for evaluation of the sleep problem.

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HOW IS SLEEP APNEA DIAGNOSED?
In addition to the primary care physician, pulmonologists, neurologists, or other physicians with specialty training in sleep disorders may be involved in making a definitive diagnosis and initiating treatment. Diagnosis of sleep apnea is not simple because there can be many different reasons for disturbed sleep. Several tests are available for evaluating a person for sleep apnea. Polysomnography is a test that records a variety of body functions during sleep, such as the electrical activity of the brain, eye movement, muscle activity, heart rate, respiratory effort, air flow, and blood oxygen levels. These tests are used both to diagnose sleep apnea and to determine its severity. The Multiple Sleep Latency Test (MSLT) measures the speed of falling asleep. In this test, patients are given several opportunities to fall asleep during the course of a day when they would normally be awake. For each opportunity, time to fall asleep is measured. People without sleep problems usually take an average of 10 to 20 minutes to fall asleep. Individuals who fall asleep in less than 5 minutes are likely to require some treatment for sleep disorders. The MSLT may be useful to measure the degree of excessive daytime sleepiness and to rule out other types of sleep disorders. Diagnostic tests usually are performed in a sleep center, but new technology may allow some sleep studies to be conducted in the patient's home.


HOW IS SLEEP APNEA TREATED?
The specific therapy for sleep apnea is tailored to the individual patient based on medical history, physical examination, and the results of polysomnography. Medications are generally not effective in the treatment of sleep apnea. Oxygen administration may safely benefit certain patients but does not eliminate sleep apnea or prevent daytime sleepiness. Thus, the role of oxygen in the treatment of sleep apnea is controversial, and it is difficult to predict which patients will respond well. It is important that the effectiveness of the selected treatment be verified; this is usually accomplished by polysomnography.

Behavioral Therapy
Behavioral changes are an important part of the treatment program, and in mild cases behavioral therapy may be all that is needed. The individual should avoid the use of alcohol, tobacco, and sleeping pills, which make the airway more likely to collapse during sleep and prolong the apneic periods. Overweight persons can benefit from losing weight. Even a 10 percent weight loss can reduce the number of apneic events for most patients. In some patients with mild sleep apnea, breathing pauses occur only when they sleep on their backs. In such cases, using pillows and other devices that help them sleep in a side position is often helpful.

Physical or Mechanical Therapy
Nasal continuous positive airway pressure (CPAP) is the most common effective treatment for sleep apnea. In this procedure, the patient wears a mask over the nose during sleep, and pressure from an air blower forces air through the nasal passages. The air pressure is adjusted so that it is just enough to prevent the throat from collapsing during sleep. The pressure is constant and continuous. Nasal CPAP prevents airway closure while in use, but apnea episodes return when CPAP is stopped or used improperly. Variations of the CPAP device attempt to minimize side effects that sometimes occur, such as nasal irritation and drying, facial skin irritation, abdominal bloating, mask leaks, sore eyes, and headaches. Some versions of CPAP vary the pressure to coincide with the person's breathing pattern, and others start with low pressure, slowly increasing it to allow the person to fall asleep before the full prescribed pressure is applied. Dental appliances that reposition the lower jaw and the tongue have been helpful to some patients with mild sleep apnea or who snore but do not have apnea. Possible side effects include damage to teeth, soft tissues, and the jaw joint. A dentist or orthodontist is often the one to fit the patient with such a device.

Surgery
Some patients with sleep apnea may need surgery. Although several surgical procedures are used to increase the size of the airway, none of them is completely successful or without risks. More than one procedure may need to be tried before the patient realizes any benefits. Some of the more common procedures include removal of adenoids and tonsils (especially in children), nasal polyps or other growths, or other tissue in the airway and correction of structural deformities. Younger patients seem to benefit from these surgical procedures more than older patients. Uvulopalatopharyngoplasty (UPPP) is a procedure used to remove excess tissue at the back of the throat (tonsils, uvula, and part of the soft palate). The success of this technique may range from 30 to 50 percent. The long-term side effects and benefits are not known, and it is difficult to predict which patients will do well with this procedure. Laser-assisted uvulopalatoplasty (LAUP) is done to eliminate snoring but has not been shown to be effective in treating sleep apnea.
     This procedure involves using a laser device to eliminate tissue in the back of the throat. Like UPPP, LAUP may decrease or eliminate snoring but not sleep apnea itself. Elimination of snoring, the primary symptom of sleep apnea, without influencing the condition may carry the risk of delaying the diagnosis and possible treatment of sleep apnea in patients who elect LAUP. To identify possible underlying sleep apnea, sleep studies are usually required before LAUP is performed. Tracheostomy is used in persons with severe, life-threatening sleep apnea. In this procedure, a small hole is made in the windpipe and a tube is inserted into the opening. This tube stays closed during waking hours, and the person breathes and speaks normally. It is opened for sleep so that air flows directly into the lungs, bypassing any upper airway obstruction. Although this procedure is highly effective, it is an extreme measure that is poorly tolerated by patients and rarely used. Other procedures. Patients in whom sleep apnea is due to deformities of the lower jaw may benefit from surgical reconstruction. Finally, surgical procedures to treat obesity are sometimes recommended for sleep apnea patients who are morbidly obese.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
Public Health Service - National Institutes of Health National Heart, Lung, and Blood Institute
NIH Publication No. 95-3798, September 1995

FOR MORE INFORMATION
Information about sleep disorders research can be obtained from the NCSDR. In addition, the NHLBI Information Center can provide you with sleep education materials as well as other publications relating to heart, lung, and blood diseases.

National Center on Sleep - Disorders Research
Two Rockledge Centre, Suite 7024
6701 Rockledge Drive
MSC 7920
Bethesda, MD 20892-7920
(301) 435-0199
FAX: (301) 480-3451

NHLBI Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
(301) 251-1222
FAX: (301) 251-1223

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Help for Patients and Caregivers : Breast Cancer

What is Breast Cancer?
Common Symptoms
What Causes Breast Cancer?
Treatments
After Treatment
Additional Information


What is Breast Cancer?
Breast cancer is the most common cancer occurring in women (excluding cancers of the skin) and the second most common cause of death from cancer in women after lung cancer. Men can also develop breast cancer, but male breast cancer is rare, accounting for less than 1% of all breast cancer cases. If diagnosed at an early stage, breast cancer has an encouraging cure rate: up to 97% of women diagnosed with localized breast cancer will survive five years after their diagnosis. Even if the cancer is found at a more advanced stage, new therapies have enabled many people with breast cancer to experience a good quality of life.

The breast is comprised mainly of fatty tissue. Within this tissue is a network of lobes, which are made up of tiny, tube-like structures (called lobules) that contain milk glands. Tiny ducts connect the glands, lobules, and lobes and carry the milk from the lobes to the nipple, located in the middle of the areola (darker area that surrounds the nipple of the breast). Blood and lymph vessels run throughout the breast; blood nourishes the cells, and the lymph system drains bodily waste products.

The main forms of breast cancer are:

  • Invasive ductal carcinoma — This type of breast cancer develops in the milk ducts and accounts for about 79 percent of cases. It can break through the duct wall and invade the breast's fatty tissue, then metastasize (spread) to other parts of the body through the bloodstream or lymphatic system.
  • Invasive lobular carcinoma — This type of breast cancer accounts for about 10 percent of cases and originates in the breast's milk-producing lobules. It also can spread to the breast's fatty tissue and other places in the body.
  • Medullary, mucinous and tubular carcinomas — These are three slow-growing types of breast cancer. Together they represent about 10 percent of all breast cancers.
  • Paget's disease — This type represents about 1 percent of breast cancers. It starts in the milk ducts of the nipple and can spread to the areola (dark circle around the nipple). Women who get Paget's disease usually have a history of nipple crusting, scaling, itching or inflammation.
  • Inflammatory carcinoma —This type accounts for about 1 percent of all cases. Of all breast cancers, inflammatory carcinoma is the most aggressive and difficult to treat, because it spreads so quickly.
  • Ductal carcinoma in situ (DCIS) — DCIS occurs when cancer cells fill the ducts but haven't yet spread through the walls into fatty tissue. Nearly all women diagnosed at this early stage can be cured. Without treatment, about 25 percent of DCIS cases will lead to invasive breast cancer within 10 years.
  • Lobular carcinoma in situ (LCIS) — LCIS is less common and less of a threat than DCIS. It develops in the breast's milk-producing lobules. LCIS doesn't require treatment, but it does increase a woman's risk of developing breast cancer.

Diagram of Women's Breast

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Common Symptoms?
A woman who has breast cancer may have no problems, or she may find a painless lump in her breast. If women examine their breasts monthly, they can help find lumps or other changes that a doctor should examine.

Most breast lumps are not cancer, but all lumps should be checked out by a doctor to be sure. Non cancerous breast lumps may be scar tissue or cysts (fluid-filled lumps or sacs) or they can be due to normal breast changes associated with hormone changes or aging.

Symptoms of breast cancer include:

  • A lump or thickening in the breast or under the arm
  • A clear or bloody discharge from the nipple
  • Persistent crusting or scaling of the nipple
  • Inverted nipples
  • Redness or swelling of the breast
  • Dimpling on the breast skin resembling the texture of an orange
  • A change in the contours of the breast, such as one being higher than the other
  • A sore or ulcer on the skin of the breast that does not heal
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What Causes Breast Cancer?
Many cases of breast cancer occur in women with no obvious risk factors. This means that women need to be alert in watching for possible changes in their breasts, performing self-examinations, and scheduling clinical breast examinations and mammograms. It is likely that multiple risk factors influence the development of breast cancer. Some of these include:

Age. The risk of developing breast cancer increases as a woman ages, with the majority of breast cancers developing in women over the age 50. At age 30, a woman's risk of developing breast cancer is one in 2,525. By age 50, her chances are one in 50, rising to one in 14 by age 70.

Race. Although white women are more likely to develop breast cancer, black women are more likely to die from the disease. The reasons for this are unclear and probably involve both socioeconomic and biologic factors.

Previous history of breast cancer. Women who have had breast cancer in one breast have three to four times the risk of breast cancer in their opposite breast.

A history of endometrial or ovarian cancer. The development of these cancers is also associated with exposure to hormones and, therefore, a woman's risk of breast cancer may also be increased. Some BRCA1 or BRCA2 gene mutations may also increase the risk of both ovarian and breast cancers.

A family history of breast cancer. Women who have a first-degree relative (mother, sister, daughter) diagnosed with breast cancer are at increased risk of the disease. More than one first-degree relative with breast cancer elevates that risk.

A genetic predisposition. Mutations to the BRCA1 or BRCA2 genes are associated with increased breast cancer risk. Screening tests are available to test for known mutations to these genes, but are not recommended for everyone and only following appropriate genetic counseling. Researchers estimate that breast cancers caused by these genes make up only 2% to 3% of all breast cancers.

Estrogen exposure. Estrogen is a hormone in women that controls the development of secondary sex characteristics (such as breast development). A woman's production of estrogen decreases at menopause. Doctors think that exposure to estrogen for a long time may increase breast cancer risk:

    • A long menstrual history: Women who began menstruating before age 12 or went through menopause after age 55 have a higher risk of breast cancer because their breast cells have been exposed to estrogen for longer periods of time.
    • Late or no pregnancies: Women who have their first pregnancy after age 30 or who have never had a full-term pregnancy have a higher risk of breast cancer. Pregnancy may protect against breast cancer because it pushes breast cells into their final phase of maturation.
    • Estrogen in medication: Recent use of oral contraceptives or hormone replacement therapy (HRT), or long-term use of HRT, may increase a woman's risk of breast cancer.

Atypical hyperplasia. This is a condition characterized by abnormal, but not cancerous, cells. Atypical hyperplasia is a risk factor of breast cancer.

Lobular carcinoma in-situ. This is associated with an increased risk of developing a cancer in either breast when found within an otherwise benign breast biopsy.

Lifestyle factors. As with other types of cancer, studies continue to show that various habits may contribute to the development of breast cancer. These include:

    • Obesity: According to a new study, being obese or even overweight increases a woman's risk of breast cancer.
    • Lack of exercise: Exercise lowers hormone levels and boosts the immune system; lack of exercise contributes to obesity.
    • Alcohol use: Drinking more than one alcoholic drink per day may raise the risk of breast cancer.

Radiation. High doses of radiation may increase a woman's risk of breast cancer. An increased risk of breast cancer has been observed in long-term survivors of atomic bombs, patients with lymphoma treated with radiation therapy to the chest, patients undergoing large numbers of x-rays for tuberculosis or non-malignant conditions of the spine, and children treated with radiation for tinea capitis (ringworm).

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Treatments for Breast Cancer
Even though the doctor will tailor the treatment for breast cancer to the patient's disease and personal situation, there are some general steps in the logic of treating the disease. Primarily, the initial therapy for early stage disease is aimed at eliminating any visible tumor. Therefore, doctors will recommend surgery to remove the tumor with or without radiation therapy.

The next step in the management of early stage disease is to reduce the risk of the disease recurring and to eliminate any cancer cells that may remain. If a tumor is of a certain size or lymph nodes are involved, the doctor may recommend additional therapy, such as radiation therapy, chemotherapy, or hormonal therapy. If the cancer recurs, the patient may choose additional surgery, depending on where the cancer is found, or a variety of treatments designed to fight distant metastases.

Surgery

Generally, the smaller the tumor, the more surgical options a patient has. The general types of surgery include the following:

  • Lumpectomy - A lumpectomy removes the tumor and a small "clean," or disease-free, margin of tissue around the tumor. Follow-up radiation therapy is given to the disease site.
  • Partial Mastectomy - A partial mastectomy removes the tumor, an area of normal tissue, and part of the lining over the chest muscle where the tumor was. This surgery is similar to a lumpectomy. It is also called a segmental mastectomy and requires follow-up radiation.
  • Modified Radical Mastectomy - A modified radical mastectomy removes the breast, some of the underarm lymph nodes, and the lining over the chest muscles.
  • Total Mastectomy - A total mastectomy removes the entire breast, leaving the underarm lymph nodes intact. This surgery is also called simple mastectomy.
  • Radical Mastectomy - A radical mastectomy removes the breast, chest muscles, all lymph nodes under the arm, and additional fat and skin. It used to be the standard surgical treatment for breast cancer, but is an uncommon procedure today. About 15% of women who have had radical mastectomies experience lymphedema, the buildup of fluid in the lymph system.

Women are encouraged to talk with their doctors about which surgical option is right for them. More aggressive surgery is not always better and may result in additional complications.

Choosing Between Lumpectomy and Mastectomy
One advantage of lumpectomy is that it saves the way the breast looks. A downside is the need for several weeks of radiation after surgery. But some women who have a mastectomy will still need radiation. For most women with stage I or II breast cancer, lumpectomy or partial mastectomy (along with radiation) is as good as mastectomy. There is no difference in the survival rates of women treated with these 2 methods. Other factors, though, can affect which type of surgery is best for you. And lumpectomy is not an option for all women with breast cancer. Your doctor can tell you if there are reasons why a lumpectomy is not right for you.

Possible side effects of mastectomy and lumpectomy include infection and blood or fluid collecting at the place where the incision is made. If lymph nodes are removed, there could be other side effects as well such as swelling of the arm (lymphedema).

Radiation Therapy and Chemotherapy are often used after lumpectomy or mastectomy to make sure that all the cancer cells are destroyed and do not grow back.

  • Radiation therapy almost always is recommended after lumpectomy to destroy any cancer cells left behind and to prevent the cancer from returning. Without radiation therapy, the odds of the cancer returning increase by about 25 percent.
  • The need for Chemotherapy depends on how much the cancer has spread. In some cases, chemotherapy will be recommended before surgery to shrink a large tumor so that it can be removed more easily. Chemotherapy is almost always necessary if cancer recurs. A form of chemotherapy called hormonal chemotherapy usually is recommended when the pathology report shows that the cancer is estrogen-receptor positive.
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After Treatment
After the first course of treatment is finished, it is very important to keep all follow-up visits to your doctor. Be sure and tell the doctor about any symptoms or side effects that concern you.

Lymphedema is a swelling of the arm caused by fluid build up that may occur after treatment for breast cancer. It's hard to tell which women will develop lymphedema. It can happen right after surgery, or months or even years later.

With care, lymphedema can often be avoided or kept under control. Injury or infection of the arm on the affected side can cause lymphedema or make it worse. Tell your doctor right away about any swelling, tightness, or injury to the hand or arm. There are ways to help prevent problems. More information about lymphedema is available through our toll-free number or on our Web site.

Treatment for breast cancer can affect the pleasure from touching the breast. In a reconstructed breast, the feeling of pleasure from touching the nipple is largely lost because a preserved or rebuilt nipple has much less feeling than a natural one. The skin of the breast itself may be less sensitive, too. Some feeling can return after time, though.

About Breast Forms and Bras
Some women who have had a mastectomy might choose breast forms instead of reconstruction. Your doctor will tell you when you are ready to be fitted for a permanent form. Prices of forms vary quite a bit. Take time to shop for one that looks good and fits well.

The right bra for you may very well be the one you have always worn. You can often have your usual bra adapted for a breast form. Be sure to check your insurance to see what is covered and how to file a claim. Also, ask your doctor to write prescriptions for your form and any special bras. When buying the forms or bras, have the bills marked "surgical."

Be aware that if you submit an insurance claim for a form or a bra, the company might not also cover reconstruction if you decide you want this procedure in the future. Get all the facts before turning in any claims.

Pregnancy
In the past, many doctors advised breast cancer survivors not to become pregnant for at least 2 years after treatment. Although only a few studies have been done, nearly all have found that pregnancy does not increase the risk of the cancer coming back after successful treatment. If you are thinking about getting pregnant, be sure to discuss the issue with your doctor. Sometimes counseling can help you sort out the complex issues about motherhood and breast cancer survivorship.

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Additional Information

National Organizations and Web Sites

Encore Plus Program of the YWCA
Office of Women's Health Initiatives
Telephone: 800-953-7587 or 202-467-0801
Call to find a program in your area.

National Breast Cancer Coalition
1101 17th Street, NW, Suite 1300Washington, DC 20036
Telephone: 800-622-2838 or 202-296-7477
Internet Address: www.natlbcc.org

National Cancer Institute (NCI)
Telephone: 1-800-4-CANCER
Internet Address: www.cancer.gov

Susan G. Komen Breast Cancer Foundation
Telephone: 800-IM-AWARE or 1-800-462-9273
Internet Address: www.komen.com

Y-ME National Breast Cancer Hotlines
Telephone: 1-800-221-2141 (English), 1-800-986-9505
(Spanish)Internet Address: www.y-me.org

Centers for Disease Control and Prevention (CDC) DES Update
Telephone: 1-888-232-6789
Internet Address: www.cdc.gov/des

 

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Help for Patients and Caregivers : Diabetes

What is type 2 diabetes?
How can type 2 diabetes be prevented?

Signs and symptoms of type 2 diabetes?

Types of Diabetes
Should I be tested for diabetes?
What does it mean to have pre-diabetes?
Other factors that may increase my risk for type 2 diabetes
Doing My Part: Getting Started
Hope Through Research
Staying Healthy from Head to Toe


What is type 2 diabetes?
Diabetes is a disease in which blood glucose levels are above normal. People with diabetes have problems converting food to energy. After a meal, food is broken down into a sugar called glucose, which is carried by the blood to cells throughout the body. Cells use the hormone insulin, made in the pancreas, to help them process blood glucose into energy.

People develop type 2 diabetes because the cells in the muscles, liver, and fat do not use insulin properly. Eventually, the pancreas cannot make enough insulin for the body's needs. As a result, the amount of glucose in the blood increases while the cells are starved of energy. Over the years, high blood glucose damages nerves and blood vessels, leading to complications such as heart disease, stroke, blindness, kidney disease, nerve problems, gum infections, and amputation.


How can type 2 diabetes be prevented?
Although people with diabetes can prevent or delay complications by keeping blood glucose levels close to normal, preventing or delaying the development of type 2 diabetes in the first place is even better. The results of a major federally funded study, the Diabetes Prevention Program (DPP), show how to do so. This study of 3,234 people at high risk for diabetes showed that moderate diet and exercise resulting in a 5- to 7-percent weight loss can delay and possibly prevent type 2 diabetes.

Study participants were overweight and had higher than normal levels of blood glucose, a condition called pre-diabetes (impaired glucose tolerance). Both pre-diabetes and obesity are strong risk factors for type 2 diabetes.

Am I at Risk for Type 2 Diabetes?
Because of the high risk among some minority groups, about half of the DPP participants were African American, American Indian, Asian American, Pacific Islander, or Hispanic American/Latino. The DPP tested two approaches to preventing diabetes: a healthy eating and exercise program (lifestyle changes), and the diabetes drug metformin. People in the lifestyle modification group exercised about 30 minutes a day 5 days a week (usually by walking) and lowered their intake of fat and calories. Those who took the diabetes drug metformin received standard information on exercise and diet. A third group received only standard information on exercise and diet.

The results showed that people in the lifestyle modification group reduced their risk of getting type 2 diabetes by 58 percent. Average weight loss in the first year of the study was 15 pounds. Lifestyle modification was even more effective in those 60 and older. They reduced their risk by 71 percent. People receiving metformin reduced their risk by 31 percent.


What are the signs and symptoms of type 2 diabetes?
Many people have no signs or symptoms. Symptoms can also be so mild that you might not even notice them. Nearly six million people in the United States have type 2 diabetes and do not know it.
Here is what to look for:

  • increased thirst
  • increased hunger
  • fatigue
  • increased urination, especially at night
  • weight loss
  • blurred vision
  • sores that do not heal

Types of Diabetes
The three main kinds of diabetes are type 1, type 2, and gestational diabetes.

Type 1 Diabetes
Type 1 diabetes, formerly called juvenile diabetes or insulindependent diabetes, is usually first diagnosed in children, teenagers, or young adults. In this form of diabetes, the beta cells of the pancreas no longer make insulin because the body's immune system has attacked and destroyed them. Treatment for type 1 diabetes includes taking insulin shots or using an insulin pump, making wise food choices, exercising regularly, taking aspirin daily (for some), and controlling blood pressure and cholesterol.

Type 2 Diabetes
Type 2 diabetes, formerly called adult-onset or noninsulindependent diabetes, is the most common form of diabetes. People can develop type 2 diabetes at any age, even during childhood. This form of diabetes usually begins with insulin resistance, a condition in which fat, muscle, and liver cells do not use insulin properly. At first, the pancreas keeps up with the added demand by producing more insulin. In time, however, it loses the ability to secrete enough insulin in response to meals. Being overweight and inactive increases the chances of developing type 2 diabetes. Treatment includes taking diabetes medicines, making wise food choices, exercising regularly, taking aspirin daily, and controlling blood pressure and cholesterol.

Gestational Diabetes
Some women develop gestational diabetes during the late stages of pregnancy. Although this form of diabetes usually goes away after the baby is born, a woman who has had it is more likely to develop type 2 diabetes later in life. Gestational diabetes is caused by the hormones of pregnancy or a shortage of insulin.


Am I at Risk for Type 2 Diabetes?
Sometimes people have symptoms but do not suspect diabetes. They delay scheduling a checkup because they do not feel sick. Many people do not find out they have the disease until they have diabetes complications, such as blurry vision or heart trouble. It is important to find out early if you have diabetes because treatment can prevent damage to the body from diabetes.

Should I be tested for diabetes?
Anyone 45 years old or older should consider getting tested for diabetes. If you are 45 or older and overweight (see BMI chart on pages 10 and 11), it is strongly recommended that you get tested. If you are younger than 45, overweight, and have one or more of the risk factors on page 5, you should consider testing. Ask your doctor for a fasting blood glucose test or an oral glucose tolerance test. Your doctor will tell you if you have normal blood glucose, pre-diabetes, or diabetes.


What does it mean to have pre-diabetes?
It means you are at risk for getting type 2 diabetes and heart disease. The good news is if you have pre-diabetes you can reduce the risk of getting diabetes and even return to normal blood glucose levels. With modest weight loss and moderate physical activity, you can delay or prevent type 2 diabetes. If your blood glucose is higher than normal but lower than the diabetes range (what we now call pre-diabetes), have your blood glucose checked in 1 to 2 years.


Doing My Part: Getting Started
Making big changes in your life is hard, especially if you are faced with more than one change. You can make it easier by taking these steps:

  • Make a plan to change behavior.
  • Decide exactly what you will do and when you will do it.
  • Plan what you need to get ready.
  • Think about what might prevent you from reaching your
    goals.
  • Find family and friends who will support and encourage you.
  • Decide how you will reward yourself when you do what you
    have planned.

Your doctor, a dietitian, or a counselor can help you make a plan. Here are some of the areas you may wish to change to reduce your risk of diabetes.

Reach and Maintain a Reasonable Body Weight
Your weight affects your health in many ways. Being overweight can keep your body from making and using insulin properly. It can also cause high blood pressure. The DPP showed that losing even a few pounds can help reduce your risk of developing type 2 diabetes because it helps your body use insulin more effectively. In the DPP, people who lost between 5 and 7 percent of their body weight significantly reduced their risk of type 2 diabetes. For example, if you weigh 200 pounds, losing only 10 pounds could make a difference.

Body mass index (BMI) is a measure of body weight relative to height. You can use BMI to see whether you are underweight, normal weight, overweight, or obese. Click here to view the BMI table.

  • Find your height in the left-hand column.
  • Move across in the same row to the number closest to your weight.
  • The number at the top of that column is your BMI. Check the word above your BMI to see whether you are normal weight, overweight, or obese.

If you are overweight or obese, choose sensible ways to get in shape:

  • Avoid crash diets. Instead, eat less of the foods you usually have. Limit the amount of fat you eat.
  • Increase your physical activity. Aim for at least 30 minutes of exercise most days of the week.
  • Set a reasonable weight-loss goal, such as losing 1 pound a week. Aim for a long-term goal of losing 5 to 7 percent of your total body weight.

Make Wise Food Choices Most of the Time
What you eat has a big impact on your health. By making wise food choices, you can help control your body weight, blood pressure, and cholesterol.

  • Take a hard look at the serving sizes of the foods you eat. Reduce serving sizes of main courses (such as meat), desserts, and foods high in fat. Increase the amount of fruits and vegetables.
  • Limit your fat intake to about 25 percent of your total calories. For example, if your food choices add up to about 2,000 calories a day, try to eat no more than 56 grams of fat. Your doctor or a dietitian can help you figure out how much fat to have. You can check food labels for fat content too.
  • You may also wish to reduce the number of calories you have each day. People in the DPP lifestyle modification group lowered their daily calorie total by an average of about 450 calories. Your doctor or dietitian can help you with a meal plan that emphasizes weight loss.
  • Keep a food and exercise log. Write down what you eat, how much you exercise—anything that helps keep you on track.
  • When you meet your goal, reward yourself with a nonfood item or activity, like watching a movie.

Be Physically Active Every Day
Regular exercise tackles several risk factors at once. It helps you lose weight, keeps your cholesterol and blood pressure under control, and helps your body use insulin. People in the DPP who were physically active for 30 minutes a day 5 days a week reduced their risk of type 2 diabetes. Many chose brisk walking for exercise.

If you are not very active, you should start slowly, talking with your doctor first about what kinds of exercise would be safe for you. Make a plan to increase your activity level toward the goal of being active at least 30 minutes a day most days of the week. Choose activities you enjoy. Here are some ways to work extra activity into your daily routine:

  • Take the stairs rather than an elevator or escalator.
  • Park at the far end of the lot and walk.
  • Get off the bus a few stops early and walk the rest of the way.
  • Walk or bicycle instead of drive whenever you can.

Take Your Prescribed Medications
Some people need medication to help control their blood pressure or cholesterol levels. If you do, take your medicines as directed. Ask your doctor whether there are any medicines you can take to prevent type 2 diabetes.


Hope Through Research
We now know that many people can prevent type 2 diabetes through weight loss, regular exercise, and lowering their intake of fat and calories. Researchers are intensively studying the genetic and environmental factors that underlie the susceptibility to obesity, pre-diabetes, and diabetes. As they learn more about the molecular events that lead to diabetes, they will develop ways to prevent and cure the different stages of this disease. People with diabetes and those at risk for it now have easier access to clinical trials that test promising new approaches to treatment and prevention. For information about current studies, see http://ClinicalTrials.gov.


Diabetes - Staying healthy from head to toe
If you have diabetes, controlling your sugar is always the first priority. A healthy diet, regular exercise and good medical care can help. When your blood sugar is under control you're also at lower risk for complications from diabetes. High blood sugar levels can damage your nerves and blood vessels. When levels are too high it can cause damage and disease in your eyes, teeth and feet. That's why these parts of your body need special care, according to the American Diabetes Association.

Eyes. To keep your eyes healthy, get an eye exam every year. You should also go to the doctor if:

  • Your vision gets blurry.
  • You see double.
  • Your eyes hurt.
  • You see spots.

Teeth and gums. Have your teeth cleaned and checked every 6 months. Brush your teeth, front and back, twice daily with a soft brush. Floss once a day. See your dentist if you notice any problems with your gums or teeth.
Feet. Wash and dry your feet every day. Use lotion to keep the skin from drying out.
Check every day for sores, blisters, calluses or swelling. Don't try to treat calluses or corns at home. See your doctor. Cut toenails straight across. Look for sharp edges - they can cut your Check shoes inside and out for sharp objects before you put them on. Pebbles, nails or even a torn shoe lining could cause problems.


Help for Patients and Caregivers : Obesity


More than 60 percent of Americans aged 20 years and older are overweight. One-quarter of American adults are also obese, putting them at increased health risk for chronic diseases such as heart disease, type 2 diabetes, high blood pressure, stroke, and some forms of cancer.

This fact sheet provides basic information about obesity: What is it? How is it measured? What causes it? What are the health risks? What can you do about it?


What is obesity?
To most people, the term "obesity" means to be very overweight. Health professionals define "overweight" as an excess amount of body weight that includes muscle, bone, fat, and water. "Obesity" specifically refers to an excess amount of body fat. Some people, such as bodybuilders or other athletes with a lot of muscle, can be overweight without being obese.


How is obesity measured?
Everyone needs a certain amount of body fat for stored energy, heat insulation, shock absorption, and other functions. As a rule, women have more body fat than men. Most health care providers agree that men with more than 25 percent body fat and women with more than 30 percent body fat are obese.

Measuring the exact amount of a person's body fat is not easy. The most accurate measures are to weigh a person underwater or to use an X-ray test called Dual Energy X-ray Absorptiometry (DEXA). These methods are not practical for the average person, and are done only in research centers with special equipment.

There are simpler methods to estimate body fat. One is to measure the thickness of the layer of fat just under the skin in several parts of the body. Another involves sending a harmless amount of electricity through a person's body. Both methods are used at health clubs and commercial weight loss programs. Results from these methods, however, can be inaccurate if done by an inexperienced person or on someone with severe obesity.

Because measuring a person's body fat is difficult, health care providers often rely on other means to diagnose obesity. Weight-for-height tables, which have been used for decades, usually have a range of acceptable weights for a person of a given height. One problem with these tables is that there are many versions, all with different weight ranges. Another problem is that they do not distinguish between excess fat and muscle. A very muscular person may appear obese, according to the tables, when he or she is not.

In recent years, body mass index (BMI) has become the medical standard used to measure overweight and obesity.


Body Mass Index
BMI uses a mathematical formula based on a person's height and weight. BMI equals weight in kilograms divided by height in meters squared (BMI = kg/m2). The BMI table that follows has already calculated this information.

Although the BMI ranges shown in the table are not exact ranges of healthy and unhealthy weight, they are useful guidelines. A BMI of 25 to 29.9 indicates a person is overweight. A person with a BMI of 30 or higher is considered obese.

Like the weight-to-height table, BMI does not show the difference between excess fat and muscle. BMI, however, is closely associated with measures of body fat. It also predicts the development of health problems related to excess weight. For these reasons, BMI is widely used by health care providers.

Body Mass Index Graph

Find your weight on the bottom of the graph. Go straight up from that point until you come to the line that matches your height. Then look to find your weight group.


Body Fat Distribution: "Pears" vs. "Apples"
Health care providers are concerned not only with how much fat a person has, but also where the fat is located on the body. Women typically collect fat in their hips and buttocks, giving them a "pear" shape. Men usually build up fat around their bellies, giving them more of an "apple" shape. Of course some men are pear-shaped and some women become apple-shaped, especially after menopause. If you carry fat mainly around your waist, you are more likely to develop obesity-related health problems. Women with a waist measurement of more than 35 inches or men with a waist measurement of more than 40 inches have a higher health risk because of their fat distribution.


Causes of Obesity
In scientific terms, obesity occurs when a person consumes more calories than he or she burns. What causes this imbalance between calories in and calories out may differ from one person to another. Genetic, environmental, psychological, and other factors may all play a part.

Genetic factors

Obesity tends to run in families, suggesting a genetic cause. Yet families also share diet and lifestyle habits that may contribute to obesity. Separating these from genetic factors is often difficult. Even so, science shows that heredity is linked to obesity.

In one study, adults who were adopted as children were found to have weights closer to their biological parents than to their adoptive parents. In this case, the person's genetic makeup had more influence on the development of obesity than the environment in the adoptive family home.

Environmental factors

Genes do not destine people to a lifetime of obesity, however. Environment also strongly influences obesity. This includes lifestyle behaviors such as what a person eats and his or her level of physical activity. Americans tend to eat high-fat foods, and put taste and convenience ahead of nutrition. Also, most Americans do not get enough physical activity.

Although you cannot change your genetic makeup, you can change your eating habits and levels of activity. Try these techniques that have helped some people lose weight and keep it off:

  • Learn how to choose more nutritious meals that are lower in fat.
  • Learn to recognize and control environmental cues (like inviting smells) that make you want to eat when you're not hungry.
  • Become more physically active.
  • Keep records of your food intake and physical activity.

Psychological factors

Psychological factors may also influence eating habits. Many people eat in response to negative emotions such as boredom, sadness, or anger.

Most overweight people have no more psychological problems than people of average weight. Still, up to 10 percent of people who are mildly obese and try to lose weight on their own or through commercial weight loss programs have binge eating disorder. This disorder is even more common in people who are severely obese.

During a binge eating episode, people eat large amounts of food and feel that they cannot control how much they are eating. Those with the most severe binge eating problems are also likely to have symptoms of depression and low self-esteem. These people may have more difficulty losing weight and keeping it off than people without binge eating problems.

If you are upset by binge eating behavior and think you might have binge eating disorder, seek help from a health professional such as a psychiatrist, psychologist, or clinical social worker.

Other causes of obesity

Some illnesses can lead to obesity or a tendency to gain weight. These include hypothyroidism, Cushing's syndrome, depression, and certain neurological problems that can lead to overeating. Also, drugs such as steroids and some antidepressants may cause weight gain. A doctor can tell whether there are underlying medical conditions that are causing weight gain or making weight loss difficult.


Consequences of Obesity

Health Risks

Obesity is more than a cosmetic problem; it is a health hazard. Approximately 280,000 adult deaths in the United States each year are related to obesity. Several serious medical conditions have been linked to obesity, including type 2 diabetes, heart disease, high blood pressure, and stroke. Obesity is also linked to higher rates of certain types of cancer. Obese men are more likely than non-obese men to die from cancer of the colon, rectum, or prostate. Obese women are more likely than non-obese women to die from cancer of the gallbladder, breast, uterus, cervix, or ovaries.

Other diseases and health problems linked to obesity include:

  • Gallbladder disease and gallstones.
  • Liver disease.
  • Osteoarthritis, a disease in which the joints deteriorate. This is possibly the result of excess weight on the joints.
  • Gout, another disease affecting the joints.
  • Pulmonary (breathing) problems, including sleep apnea in which a person can stop breathing for a short time during sleep.
  • Reproductive problems in women, including menstrual irregularities and infertility.

Health care providers generally agree that the more obese a person is, the more likely he or she is to develop health problems.

Psychological and social effects

Emotional suffering may be one of the most painful parts of obesity. American society emphasizes physical appearance and often equates attractiveness with slimness, especially for women. Such messages make overweight people feel unattractive.

Many people think that obese individuals are gluttonous, lazy, or both, even though this is not true. As a result, obese people often face prejudice or discrimination in the job market, at school, and in social situations. Feelings of rejection, shame, or depression are common.


Who should lose weight?
Health care providers generally agree that people who have a BMI of 30 or more can improve their health through weight loss. This is especially true for people who are severely obese.

Preventing additional weight gain is recommended if you have a BMI between 25 and 29.9, unless you have other risk factors. Obesity experts recommend you try to lose weight if you have two or more of the following:

  • Family history of certain chronic diseases. If you have close relatives who have had heart disease or diabetes, you are more likely to develop these problems if you are obese.
  • Pre-existing medical conditions. High blood pressure, high cholesterol levels, or high blood sugar levels are all warning signs of some obesity-associated diseases.
  • "Apple" shape. If your weight is concentrated around your waist, you may have a higher risk of heart disease, diabetes, or cancer than people of the same weight who have a "pear" shape.

Fortunately, a weight loss of 5 to 10 percent can do much to improve health by lowering blood pressure and cholesterol levels. In addition, recent research has shown that a 5- to 7-percent weight loss can prevent type 2 diabetes in people at high risk for the disease.


How is obesity treated?
The method of treatment depends on your level of obesity, overall health condition, and motivation to lose weight. Treatment may include a combination of diet, exercise, behavior modification, and sometimes weight-loss drugs. In some cases of severe obesity, gastrointestinal surgery may be recommended. Remember, weight control is a life-long effort.

For more information on health risks, treatment options, and binge eating, click on these links to WIN publications:


Additional Reading
Allison DB, Fontaine KR, Manson JE, Stevens J, VanItallie TB. Annual deaths attributable to obesity in the United States. Journal of the American Medical Association; 1999;282(16):1530-1538.

National Heart, Lung, and Blood Institute. Clinical Guidelines on the Identification, Evaluation, and Treatment of Overweight and Obesity in Adults. Department of Health and Human Services, National Institutes of Health; 1998. NIH Publication No. 98-4083.

National Task Force on Prevention and Treatment of Obesity. Overweight, obesity, and health risk. Archives of Internal Medicine. 2000;160(7):898-904.

Partnership for Healthy Weight Management. Weight Loss: Finding a Weight Loss Program that Works for You. 2000. Phone: 1-888-8-PUEBLO. Website: www.consumer.gov/weightloss/brochures.htm.

Partnership for Healthy Weight Management. Setting Goals for Healthy Weight Loss. 1999. Phone: 1-888-8-PUEBLO. Website: www.consumer.gov/weightloss/brochures.htm.

The President’s Council on Physical Fitness and Sports, Department of Health and Human Services. Exercise and Weight Control. Website: www.fitness.gov/Reading_Room/reading_room.html.

U.S. Department of Agriculture and U.S. Department of Health and Human Services. Dietary Guidelines for Americans. 2000. Phone: 1-888-878-3256. Website: www.usda.gov/cnpp or www.health.gov/dietaryguidelines.


Weight-control Information Network

1 WIN WAY
BETHESDA, MD 20892-3665
Phone: (202) 828-1025
FAX: (202) 828-1028

E-mail: win@info.niddk.nih.gov
Internet: www.niddk.nih.gov/health/nutrit/nutrit.htm
Toll-free number: 1-877-946-4627

The Weight-control Information Network (WIN) is a national service of the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health, which is the Federal Government's lead agency responsible for biomedical research on nutrition and obesity. Authorized by Congress (Public Law 103-43), WIN provides the general public, health professionals, the media, and Congress with up-to-date, science-based health information on weight control, obesity, physical activity, and related nutritional issues.

WIN answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about weight control and related issues.

Publications produced by WIN are carefully reviewed by both NIDDK scientists and outside experts. This fact sheet was also reviewed by Thomas Wadden, Ph.D., Director, Weight and Eating Disorders Program, University of Pennsylvania, and Goulda Downer, Ph.D., President, Metroplex Health and Nutrition Services.

This e-text is not copyrighted.WIN encourages unlimited duplication and distribution of this fact sheet.

Help for Patients and Caregivers : Urinary Incontinence

What is Urinary Incontinence?
Common Symptoms
What Causes Urinary Incontinence?
Medications
Home Care
Additional Information


What is Urinary Incontinence?

Incontinence is the inability to control the passage of urine. This can range from an occasional leakage of urine, to a complete inability to hold any urine. Urinary incontinence affects approximately 13 million people in the United States and is more common in women than in men. It occurs in 10 percent to 25 percent of women younger than age 65 and in 15 percent to 30 percent of women older than age 60 who do not live in nursing homes. Among nursing home residents, incontinence is even more common, affecting more than 50 percent of female patients.

The two main types of urinary incontinence are:

  • Stress incontinence -- occurs during certain activities like coughing, sneezing, laughing, or exercise.
  • Urge incontinence -- involves a strong, sudden need to urinate followed by instant bladder contraction and involuntary loss of urine. You don't have enough time between when you recognize the need to urinate and when you actually do urinate.
  • Overflow incontinence -- happens when small amounts of urine leak from a bladder that is always full. A man can have trouble emptying his bladder if an enlarged prostate is blocking the urethra. Diabetes and spinal cord injury can also cause this type of incontinence.
  • Functional incontinence -- happens in many older people who have normal bladder control. They just have a hard time getting to the toilet in time because of arthritis or other disorders that make moving quickly difficult.

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Common Symptoms?

The main symptom of urinary incontinence is leakage of urine. This leakage can be frequent and heavy, or it can be small and rather rare. For an active woman or for a woman who loses a large amount of urine each time, even one episode per week may be too much.

Some other common symptoms of urinary incontinence include:

  • A strong desire to urinate, whether or not the bladder is full, often occurring together with pelvic discomfort or pressure
  • Urinating more than once in a two-hour period or more than seven times a day
  • The need to get up and urinate at least twice during sleep
  • Painful urination
  • Bed wetting or urinating while sleeping
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What Causes Urinary Incontinence?

Incontinence may be sudden and temporary, or ongoing and long-term. Causes of sudden or temporary incontinence include:

  • Urinary tract infection or inflammation
  • Prostate infection or inflammation
  • Stool impaction from severe constipation, causing pressure on the bladder
  • Side effects of medications (such as diuretics, tranquilizers, some cough and cold remedies, certain antihistamines for allergies, and antidepressants)
  • Increased urine amounts, like with poorly controlled diabetes
  • Pregnancy
  • Weight gain
  • Short-term bed rest -- for example, when recovering from surgery
  • Mental confusion

Causes that may be more long-term:

  • Spinal injuries
  • Urinary tract anatomical abnormalities
  • Neurological conditions like multiple sclerosis or stroke
  • Weakness of the sphincter, the circular muscles of the bladder responsible for opening and closing it; this can happen following prostate surgery in men, or vaginal surgery in women
  • Pelvic prolapse in women -- falling or sliding of the bladder, urethra, or rectum into the vaginal space, often related to having had multiple pregnancies and deliveries
  • Large prostate in men
  • Depression or Alzheimer's disease
  • Nerve or muscle damage after pelvic radiation
  • Bladder cancer
  • Bladder spasms
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Medications for Urinary Incontinence

Many times, urinary incontinence can be corrected with the help of medication. Drugs commonly used to treat incontinence include:

Anticholinergic (antispasmodic) drugs - These prescription medications calm an overactive bladder, so they may be helpful for urge incontinence.

Imipramine (Tofranil). This antidepressant may be used to treat incontinence. It causes the bladder muscle to relax, while causing the smooth muscles at the bladder neck to contract.

Hormone Replacement Therapy - After menopause, a woman's body produces less of the hormone estrogen. This drop in estrogen can contribute to changes in the skin lining the urethra and vagina, which can contribute to the development of incontinence in some women. Applying estrogen in the form of a vaginal cream, ring or patch may help relieve some of the symptoms of incontinence in these women.

Antibiotics - If your incontinence is due to a urinary tract infection or an inflamed prostate gland (prostatitis), your doctor can successfully treat the problem with antibiotics.

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Home Care

See your doctor for an initial evaluation and to come up with a treatment plan. Treatment options vary, depending on the cause and type of incontinence you have. Fortunately, there are many things you can do to help manage incontinence.

The following methods are used to strengthen the muscles of your pelvic floor:

  • Bladder retraining -- this involves urinating on a schedule, whether you feel a need to go or not. In between those times, you try to wait to the next scheduled time. At first, you may need to schedule 1 hour intervals. Gradually, you can increase by 1/2 hour intervals until you are only urinating every 3-4 hours without leakage.
  • Kegel exercises -- contract the pelvic floor muscles for 10 seconds, then relax them for 10 seconds. Repeat 10 times. Do these exercises 3 times per day. You can do Kegel exercises any time, any place.

To find the pelvic muscles when you first start Kegel exercises, stop your urine flow midstream. The muscles needed to do this are your pelvic floor muscles. DO NOT contract your abdominal, thigh, or buttocks muscles. And DO NOT overdo the exercises. This may tire the muscles out and actually worsen incontinence.

Two methods called biofeedback and electrical stimulation can help you learn how to perform Kegel exercises. Biofeedback uses electrodes placed on the pelvic floor muscles, giving you feedback about when they are contracted and when they are not. Electrical stimulation uses low-voltage electric current to stimulate the pelvic floor muscles. It can be done at home or at a clinic for 20 minutes every 1 to 4 days.

Biofeedback and electrical stimulation will no longer be necessary once you have identified the pelvic floor muscles and mastered the exercises on your own.

Vaginal cones enhance the performance of Kegel exercises for women. Other devices for incontinence are also available.

For leakage, wear absorbent pads or undergarments. There are many well-designed products that go completely unnoticed by anyone but you.

Other measures include:

  • Regulate your bowels to avoid constipation. Try increasing fiber in your diet.
  • Quit smoking to reduce coughing and bladder irritation. Smoking also increases your risk of bladder cancer.
  • Avoid alcohol and caffeinated beverages, particularly coffee, which can overstimulate your bladder.
  • Lose weight if you need to.
  • Avoid foods and drinks that may irritate your bladder like spicy foods, carbonated beverages, and citrus fruits and juices.
  • Keep blood sugars under good control if you have diabetes.

If you have overflow incontinence or cannot empty your bladder completely, a catheter may be recommended. But using a catheter exposes you to potential infection.

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Additional Information

American Urological Association
1120 North Charles St.
Baltimore, MD 21201
Phone: (410) 727-1100
Fax: (410) 223-4370
http://www.auanet.org/

American Foundation for Urologic Disease
1128 North Charles St.
Baltimore, MD 21201
Phone: (410) 468-1800
Toll-Free: (800) 242-2383
Fax: (410) 468-1808
http://www.afud.org/

http://www.mayoclinic.com/

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Help for Patients and Caregivers : Congestive Heart Failure

What is CHF?
Common Symptoms
What Causes CHF?
Treatments/Medications
Medications
Additional Information


What is Congestive Heart Failure?

Congestive heart failure (CHF), or heart failure, is a condition in which the heart can't pump enough blood to the body's other organs. This can result fromNormal Heart vs. Congestive Heart

  • narrowed arteries that supply blood to the heart muscle — coronary artery disease.
  • past heart attack, or myocardial infarction, with scar tissue that interferes with the heart muscle's normal work.
  • high blood pressure.
  • heart valve disease due to past rheumatic fever or other causes.
  • primary disease of the heart muscle itself, called cardiomyopathy.
  • heart defects present at birth — congenital heart defects.
  • infection of the heart valves and/or heart muscle itself — endocarditis and/or myocarditis.

The "failing" heart keeps working but not as efficiently as it should. People with heart failure can't exert themselves because they become short of breath and tired.

As blood flow out of the heart slows, blood returning to the heart through the veins backs up, causing congestion in the tissues. Often swelling (edema) results. Most often there's swelling in the legs and ankles, but it can happen in other parts of the body, too. Sometimes fluid collects in the lungs and interferes with breathing, causing shortness of breath, especially when a person is lying down.

About five million Americans are living with heart failure, and between 400,000 and 700,000 new cases are diagnosed every year. Heart failure is serious and can be life-threatening. About 250,000 people die annually of heart failure.

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Common Symptoms?

Shortness of breath - If you have congestive heart failure, you may have difficulty breathing, especially when you lie down. This happens because you have to work a little harder to breath when you lie down because of the fluid in your lungs. You may awaken at night short of breath and have to sit or stand up to get relief. You may find yourself more comfortable with your head and chest elevated. As the buildup of fluid in the lungs become very severe, you may cough up frothy, pink liquid.

Exercise Intolerance - You may find yourself unable to tolerate exercise or even mild physical exertion. This happens because a failing heart cannot pump quite enough blood to provide all the oxygen and other nutrients your body needs while it is exercising. Your ability to exercise, even to walk at a normal pace, may be limited by feeling tired (fatigue) and shortness of breath.

Fluid Retention and Swelling - You may notice puffy swelling (edema) in your legs, feet, and ankles. Often, the swelling is more noticeable in the ankles or on the lower leg in the front where the bone is close to the skin. If you press down on the skin in the puffy areas, the indentation where your finger pressed may be visible for a few minutes. This swelling may be so severe as to reach up to the hips.

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What Causes Congestive Heart Failure?

Heart failure often occurs because other cardiac conditions have damaged or weakened your heart, forcing it to work harder. A weakened heart can't pump blood efficiently throughout your body. This causes blood to pool in your legs, feet and ankles, your kidneys to retain excess water and sodium, and fluid to back up into your lungs, leading to shortness of breath.

Heart failure often results from the stress of a heart attack, high blood pressure, or other forms of heart disease such as valve disorders. In fact, all of the behaviors that you probably associate with heart attack or heart disease — such as smoking, being overweight, eating foods high in cholesterol and fat, and not exercising — also cause or contribute to heart failure. Sometimes, your heart becomes weakened without explanation, a condition known as idiopathic dilated cardiomyopathy.

If you have heart failure, chances are you've had one or more of the following conditions:

  • Hypertension (high blood pressure)
  • Coronary Artery Disease
  • Heart attack
  • Faulty heart valves
  • Cardiomyopathy
  • Heart defects present at birth (congenital heart defects)
  • Abnormal heart rhythms (heart arrhythmia)

 

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Treatments for Congestive Heart Failure

If you have heart failure, your doctor will monitor you closely. This means having follow up appointments at least every 3 to 6 months, figuring out any underlying cause and treating it, and periodic testing of your heart function. For example, an ultrasound of your heart, called an echocardiogram, will be done once in awhile to give an estimate of how well your heart is pumping blood with each stroke or beat.

It is also your responsibility to carefully monitor yourself and help manage your condition. One important way to do this is to track your weight on a daily basis. Weight gain can be a sign that you are retaining fluid and that the pump function of your heart is worsening. Make sure you weigh yourself at the same time each day and on the same scale, with little to no clothes on.

Other important measures include:

  • Take your medications as directed. Carry a list of medications with you wherever you go.
  • Limit salt and sodium intake.
  • Don’t smoke.
  • Stay active. For example, walk or ride a stationary bicycle. Your doctor can provide a safe and effective exercise plan based on your degree of heart failure and how well you do on tests that check the strength and function of your heart. DO NOT exercise on days that your weight has gone up from fluid retention or you are not feeling well.
  • Lose weight if you are overweight.
  • Get enough rest, including after exercise, eating, or other activities. This allows your heart to rest as well. Keep your feet elevated to decrease swelling.
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Medications

Medications that your doctor will consider prescribing include:

  • ACE inhibitors such as captopril and enalapril -- these medications open up blood vessels and decrease the work load of the heart. These have become an important part of treatment
  • Diuretics -- there are several types including thiazide, loop diuretics, and potassium-sparing diuretics; they help rid your body of fluid and sodium.
  • Digitalis glycosides -- increase the ability of the heart muscle to contract properly; prevent heart rhythm disturbances
  • Angiotensin receptor blockers (ARBs) such as losartan and candesartan which, like ACE inhibitors, reduce the workload of the heart; this class of drug is especially important for those who cannot tolerate ACE inhibitors
  • Beta-blockers -- this is particularly useful for those with a history of coronary artery disease
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Additional Information

American Heart Association (AHA)
7272 Greenville Ave.
Dallas, TX 75231
Toll-Free: (800) 242-8721
Fax: (214) 706-2139
http://www.americanheart.org/

National Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
http://www.nhlbi.nih.gov/

http://www.mayoclinic.com/

http://www.emedicinehealth.com/

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Help for Patients and Caregivers : Hepatitis C

What is Hepatitis C?
Common Symptoms
What Causes Hepatitis C?
Treatments
Surgical Treatment

Hepatitis C Well-Being
Additional Information


What is Hepatitis C?
HCV (Hepatitis C Virus) is an inflammation of the liver causing soreness and swelling. It is the most common chronic blood borne infection in the United States. The hepatitis C virus usually is transmitted through contact with infected blood, most commonly by sharing needles during intravenous drug use, or getting a blood transfusion before 1992. Hepatitis C also may be spread through unprotected sexual intercourse, but this is uncommon. Most people don't feel sick when they are first infected with hepatitis C. Instead, the virus stays in their liver and causes chronic liver inflammation.

  • HCV is one of the most common causes of chronic liver disease in the United States
  • If the inflammation is not reversed, it becomes chronic (ongoing, long term) and can cause chronic liver disease, which can be serious or even fatal.
  • At least 75% of people infected with hepatitis C develop chronic hepatitis C.
  • If the disease progresses to the point at which the liver begins to fail (end stage liver disease), the only treatment is liver transplantation.
  • About 4 million people in the United States have antibodies to HCV, meaning they have been infected with the virus at some point; as many as half of them do not know they have the infection.

Hepatitis Life cycle
provided by Rockefeller University
Hepatitis Life Cycle
VIEW MOVIE


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Common Symptoms?
Symptoms of hepatitis B or C include headache, nausea, vomiting, abdominal pain, jaundice (the skin turns yellow), weakness and fatigue. Bowel movements may be gray in color. The urine may be dark and look like tea. Sometimes, though, hepatitis is a mild illness. If you have a mild case of hepatitis, you may not even realize that you have it. It may not cause symptoms or may only cause symptoms similar to the stomach flu. You might think you have the flu, and not know you have hepatitis.

- Chronic hepatitis C can lead to Cirrhosis of the liver in many people, a condition traditionally associated with alcoholism. Symptoms of cirrhosis include the following:

  • Fluid retention causing swelling of the belly (ascites), legs, or whole body
  • Persistent jaundice
  • Fatigue
  • Disturbances in sleeping
  • Itchy skin
  • Loss of appetite, weight loss, wasting
  • Vomiting with blood in the vomit
  • Mental disturbances such as confusion, lethargy, extreme sleepiness, or hallucinations (hepatic encephalopathy)
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What Causes Hepatitis C?
Hepatitis C is mainly transmitted by contact with blood or blood products. Many times, the cause of hepatitis C is never found.

  • Sharing of contaminated needles among intravenous (IV) drug users is the most common mode of transmission. Using a needle to inject drugs, even just once many years ago, is a risk factor for hepatitis C.
  • Many people contracted hepatitis C through blood transfusions. Since 1992, however, screening tests to check for hepatitis C in donated blood have decreased the chance of getting the virus.
  • Extremely rare transmission modes include from mother to child during birth, sexual intercourse (particularly if sexually active with more than 1 partner), and accidental needle sticks from a needle used by someone infected with HCV. Other possible modes include manicures, haircuts, razors, toothbrush, and tattoos, but these are unlikely.
  • Received blood, blood products, or solid organs from a donor who has hepatitis C
  • Have been on long-term kidney dialysis
  • Have had frequent workplace contact with blood (for instance, as a healthcare worker)

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Treatment for Hepatitis C
Combination therapy with Interferon and Ribavirin is the treatment of choice resulting in sustained response rates of 40%-80%. (up to 50% for patients infected with the most common genotype found in the U.S. [genotype 1] and up to 80% for patients infected with genotypes 2 or 3). Interferon monotherapy is generally reserved for patients in whom Ribavirin is contraindicated. Ribavirin, when used alone, does not work. Combination therapy using interferon and ribavirin is now FDA approved for the use in children aged 3-17 years.

What are the side effects of interferon therapy?

Most persons have flu-like symptoms (fever, chills, headache, muscle and joint aches, fast heart rate) early in treatment, but these lessen with continued treatment. Later side effects may include tiredness, hair loss, low blood count, trouble with thinking, moodiness, and depression. Severe side effects are rare (seen in less than 2 out of 100 persons). These include thyroid disease, depression with suicidal thoughts, seizures, acute heart or kidney failure, eye and lung problems, hearing loss, and blood infection. Although rare, deaths have occurred due to liver failure or blood infection, mostly in persons with cirrhosis. An important side effect of interferon is worsening of liver disease with treatment, which can be severe and even fatal. Interferon dosage must be reduced in up to 40 out of 100 persons because of severity of side effects, and treatment must be stopped in up to 15 out of 100 persons. Pregnant women should not be treated with interferon.

What are the side effects of combination (ribavirin + interferon) treatment?

In addition to the side effects due to interferon described above, ribavirin can cause serious anemia (low red blood cell count) and can be a serious problem for persons with conditions that cause anemia, such as kidney failure. In these persons, combination therapy should be avoided or attempts should be made to correct the anemia. Anemia caused by ribavirin can be life-threatening for persons with certain types of heart or blood vessel disease. Ribavirin causes birth defects and pregnancy should be avoided during treatment. Patients and their healthcare providers should carefully review the product manufacturer information prior to treatment.

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Surgical Treatment

  • For end-stage liver disease, the only treatment that will cure the problem is liver transplantation.
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Hepatitis C Well-Being

Follow all instructions that your health care provider gives you. A healthy lifestyle is more important than ever.

  • Eat a varied, healthy diet, take it easy, and get plenty of rest.
  • Drink plenty of fluids to prevent dehydration.
  • Do not drink alcohol of any kind, including beer, wine, and hard liquor.
  • Avoid medicines and substances that can cause harm to the liver such as acetaminophen (Advil, Aleve, Ibuprofen, Tylenol) and other preparations that contain acetaminophen.
  • Avoid prolonged, vigorous exercise until symptoms start to improve.

The better you take care of yourself, the more likely you will be one of the many individuals who do well for many years.

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Additional Information

American Liver Foundation
http://www.liverfoundation.org
75 Maiden Lane, Suite 603
New York, NY 10038
800-465-4837 (GO-LIVER)
or 239-1035

Hepatitis Foundation International (HFI)
504 Blick Drive
Silver Spring, MD 20904-2901
Phone: 1-800-891-0707
or (301) 622-4200
Email: hfi@comcast.net
Internet: www.hepfi.org

 

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Help for Patients and Caregivers : Osteoporosis

What is Osteoporosis?   
Common Symptoms
What Causes Osteoporosis?
Treatments
Prevention
Self Care
Additional Information


What is Osteoporosis? (How much do you know about Osteoporosis? Take our Quiz!)
Osteoporosis is a disease in which the density and quality of bone are reduced, leading to weakness of the skeleton and increased risk of fracture, particularly of the spine, wrist, hip, pelvis and upper arm. Osteoporosis and associated fractures are an important cause of mortality and morbidity.

In many affected people, bone loss is gradual and without warning signs until the disease is advanced. Osteoporosis is also known as "the silent crippler" because a person usually doesn't know they have it until it's too late. Unfortunately, in many cases, the first real "symptom" is a broken bone. Loss of height – with gradual curvature of the back (caused by vertebral compression fractures) may be the only physical sign of osteoporosis.

In the United States, osteoporosis causes more than 1.5 million fractures every year — most of them in the spine, hip or wrist. And although it's often thought of as a women's disease, osteoporosis affects many men as well. About 8 million American women and 2 million American men have osteoporosis, and nearly 18 million more Americans may have low bone density. Even children aren't immune.

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Common Symptoms?
Many people don't realize they have osteoporosis until they fracture a bone. There are usually no other symptoms - although some older people may lose inches in height or their backs may curve forward. Older people with osteoporosis are especially at risk of breaking a hip if they fall down.

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What Causes Osteoporosis?
Many factors will increase your risk of developing osteoporosis and suffering a fracture. Some of these risk factors can be changed, while others cannot. Recognizing your own risk factors is important so that you can take steps to prevent this condition from developing or treat it before it becomes worse. Major risk factors include:

  • Sex. Fractures from osteoporosis are about twice as common in women as they are in men.
  • Age (starting in the mid-30s but accelerating after 50)
  • Race. You're at greatest risk of osteoporosis if you're white or of Southeast Asian descent. Black and Hispanic men and women have a lower but still significant risk.
  • Frame size. People who are exceptionally thin or have small body frames are at higher risk because they often have reserved less bone mass to draw from as they age.
  • Family history of osteoporosis or osteoporosis-related fracture in a parent or sibling
  • Previous fracture following a low-level trauma, especially after age 50
  • Sex hormone deficiency, particularly estrogen deficiency, both in women (e.g. menopause) and men
  • Anorexia nervosa
  • Cigarette smoking
  • Alcohol abuse
  • Low dietary intake or absorption of calcium and vitamin D
  • Sedentary lifestyle or immobility
  • Certain diseases can affect bone, such as endocrine disorders (hyperthyroidism, hyperparathyroidism, Cushing's disease, etc.) and inflammatory arthritis (rheumatoid arthritis, ankylosing spondylitis, etc.)
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Treatment for Osteoporosis

A comprehensive osteoporosis treatment program includes a focus on proper nutrition, exercise, and safety issues to prevent falls that may result in fractures. In addition, your physician may prescribe a medication to slow or stop bone loss, increase bone density, and reduce fracture risk.

Therapeutic Medications. Currently, alendronate, raloxifene and risedronate are approved by the U. S. Food and Drug Administration (FDA) for the prevention and treatment of postmenopausal osteoporosis. Teriparatide is approved for the treatment of the disease in postmenopausal women and men who are at high risk for fracture. Estrogen/hormone therapy (ET/HT) is approved for the prevention of postmenopausal osteoporosis, and calcitonin is approved for treatment. In addition, alendronate is approved for the treatment of osteoporosis in men, and both alendronate and risedronate are approved for use by men and women with glucocorticoid-induced osteoporosis.

Bisphosphonates: Alendronate (Fosamax) and Risedronate (Actonel) are pills that need to be taken on an empty stomach with water. These medications help slow down bone loss and have been shown to decrease the risk of fractures.

Raloxifene. Raloxifene (brand name Evista®) is a drug that is approved for the prevention and treatment of postmenopausal osteoporosis. It is from a new class of drugs called Selective Estrogen Receptor Modulators (SERMs) that appear to prevent bone loss at the spine, hip, and total body. Raloxifene has been shown to have beneficial effects on bone mass and bone turnover and can reduce the incidence of vertebral fractures. While side-effects are not common with raloxifene, those reported include hot flashes and deep vein thrombosis, the latter of which is also associated with estrogen therapy. Additional research studies on raloxifene will be ongoing for several more years.

Calcitonin. This medication is a hormone made from the thyroid gland and is usually given as a nasal spray or as an injection under the skin. It may help prevent spine fractures, and is also helpful to control pain after an osteoporotic vertebral (spine) fracture.

Teriparatide Teriparatide is a form of parathyroid hormone that helps stimulate bone formation. It is approved for use in postmenopausal women and men at high risk for osteoporotic fracture. It is given as a daily injection under the skin and can be used for up to 2 years. If you have ever had radiation treatment to your bones or if you have parathyroid hormone levels that are already too high, you should not take this medication.

Estrogen/Hormone Therapy. Estrogen therapy alone or in combination with another hormone, progestin, has been shown to decrease the risk of osteoporosis and osteoporotic fractures in women. However, the combination of estrogen with a progestin has been shown to increase the risk for breast cancer, strokes, heart attacks and blood clots. Estrogens alone may increase the risk of strokes. Given the complexity of this decision, consult with your doctor about whether hormone replacement therapy is appropriate for you.

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Prevention

The following measures can greatly reduce your risk of osteoporosis. If you already have osteoporosis, these steps can help prevent your bones from becoming weaker. In some cases you may even be able to replace bone you've lost. Click here to take a One Minute Test.

Nutrition. The foods we eat contain a variety of vitamins, minerals, and other important nutrients that help keep our bodies healthy. All of these nutrients are needed in a balanced proportion. In particular, calcium and vitamin D are needed for strong bones as well as for your heart, muscles, and nerves to function properly. (See Prevention section for recommended amounts of calcium.)

Exercise. Exercise is an important component of an osteoporosis prevention and treatment program. Exercise not only improves your bone health, but it increases muscle strength, coordination, and balance and leads to better overall health. While exercise is good for someone with osteoporosis, it should not put any sudden or excessive strain on your bones. Asextra insurance against fractures, your doctor can recommend specific exercises to strengthen and support your back.

Consider hormone replacement therapy. Hormone replacement therapy can reduce a woman's risk of osteoporosis during and after menopause. But because of the risk of side effects, discuss the options with your doctor and decide what's best for you.

Don't smoke. Smoking increases bone loss, perhaps by decreasing the amount of estrogen a woman's body makes and by reducing the absorption of calcium in your intestine. The effects on bone of secondhand smoke aren't yet known.

Avoid excessive alcohol. Consuming more than two alcoholic drinks a day may decrease bone formation and reduce your body's ability to absorb calcium. There's no clear link between moderate alcohol intake and osteoporosis.

Limit caffeine. Moderate caffeine consumption — about two to three cups of coffee a day — won't harm you as long as your diet contains adequate calcium.

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Self Care

If you have osteoporosis, it is important not only to help prevent further bone loss, but also to prevent a fracture. Eliminate hazards in the house that can increase your risk of falling (remove loose wires or throw rugs, install grab bars in the bathroom and non-skid mats near sinks and in the tub, etc.) Be careful when you are carrying or lifting items, as this could cause a spine fracture. Wear sturdy shoes, especially in winter. Use a cane or walker if you have balance problems or have other difficulties walking.

  • Maintain good posture. Good posture — which involves keeping your head held high, chin in, shoulders back, upper back flat and lower spine arched — helps you avoid stress on your spine. When you sit or drive, place a rolled towel in the small of your back. Don't lean over while reading or doing handwork. When lifting, bend at your knees, not your waist, and lift with your legs, keeping your upper back straight.
  • Prevent falls. Wear low-heeled shoes with nonslip soles and check your house for electrical cords, area rugs, and slippery surfaces that might cause you to trip or fall.
  • Manage pain. Discuss pain management strategies with your doctor. Don't ignore chronic pain. Left untreated, it can limit your mobility and cause even more pain.
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Additional Information

National Institutes of Health (NIH): Osteoporosis and Related Bone Diseases, National Resource Center
1232 22nd Street, NW, Suite 500
Washington, DC 20037-1292
Phone: (202) 223-0344 or (800) 624-BONE (2663)
Fax: (202) 293-2356
Web: www.osteo.org
National Osteoporosis Foundation
1232 22nd Street N.W.
Washington, D.C. 20037-1292
Phone:(202) 223.2226
Web: www.nof.org/

 

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Help for Patients and Caregivers : Wound Care

What is a Wound?
Preventing Pressure Ulcers
How do I care for my child's wound?
When do the stitches need to be taken out?
When should I call the clinic?
Questions


What is a wound?
A wound is a laceration (cut), abrasion (scrape), or puncture that breaks through the skin. Some wounds need stitches to close them. All wounds heal by developing a scar. The scar will be kept smaller by removing stitches at the right time, preventing infection, and protecting the wound from being hurt again while healing.

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What Are Pressure Ulcers?
A pressure ulcer is an injury usually caused by unrelieved pressure that damages the skin and underlying tissue. Pressure ulcers are also called bed sores and range in severity from mile (minor skin reddening) to severe (deep craters down to muscle and bone).Tissue under pressure

Unrelieved pressure on the skin squeezes tiny blood vessels, which supply the skin with nutrients and oxygen. When skin is starved of nutrients and oxygen for too long, the tissue dies and a pressure ulcer forms. Skin reddening that disappears after pressure is removed is normal and not a pressure ulcer.

Other Factors cause pressure ulcers too. If a person slides down in the bed or chair, blood vessels can stretch or bend and cause pressure ulcers. Even slight rubbing or friction on the skin may cause minor pressure ulcers.

Where Pressure Ulcers Form:
Pressure ulcers form where bone causes the greatest force on the skin and tissue and squeezes them against an outside surface. This may be where bony parts of the body press against otherPressure Points body parts, a mattress, or a chair. In persons who must stay in bed, most pressure ulcers form on the lower back below the waist (sacrum), the hip bone (trochanter), and on the heels. In people in chairs and wheelchairs, the exact spot where pressure ulcers form depends on the sitting position. Pressure ulcers can also form on the knees, ankles, shoulder blades, back of the head, and spine.

Nerves normally "tell" the body when to move to relieve pressure on the skin. Persons in bed who are unable to move may get pressure ulcers after as little as 1-2 hours. Persons who site in chairs and who cannot move can get pressure ulcers in even less time because the force on the skin is greater.

Your Risk:
Confinement to bed or a chair, being unable to move, loss of bowel or bladder control, poor nutrition, and lowered mental awareness are "risk factors" that increase your chance of getting pressure ulcers. Your risk results from the number and seriousness of the risk factors that apply to you.

  1. Bed or chair confinement. If you must stay in bed, a chair, or a wheelchair, the risk of getting a pressure ulcer can be high.
  2. Inability to move. If you cannot change positions without help, you are at great risk. Persons who are in a coma or who are paralyzed or who have a hip fracture are at special risk. Risks getting pressure ulcers are lower when persons can move by themselves.
  3. Loss of bowel or bladder control. If you cannot keep your skin free to urine, stool, or perspiration, you have a higher risk. These sources of moisture may irritate the skin.
  4. Poor nutrition. If you cannot eat a balanced diet, your skin may not be properly nourished. Pressure ulcers are not more likely to form when skin is not healthy.
  5. Lowered mental awareness. When mental awareness is lowered, a person cannot act to prevent pressure ulcers. Mental awareness can be affected by health problems, medications, or anesthesia.

Fortunately, you can lower your risk. Following the steps in this booklet can help you and your health care provider to reduce your risk of pressure ulcers.

Key Steps:
The following steps for prevention are based on research, professional judgment, and practice. These steps can also keep pressure ulcers from getting worse. Some steps apply to all prevention efforts; others apply only in specific conditions. It may help to talk to a nurse or doctor about which steps are right for you.

  1. Take care of your skin.
         Your skin should be inspected at least once a day. Pay special attention to any reddened areas that remain after you have changed positions and the pressure has been relieved. This inspection can be done by yourself or your caregiver. A mirror can help when looking at hard-to-see areas. Pay special attention to pressure points. The goal is to find and correct problems before pressure ulcers form.
         Your skin should be cleaned as soon as it is soiled. A soft cloth or sponge should be used to reduce injury to skin.
         Take a bath when needed for comfort or cleanliness. If a daily bath or shower is preferred or necessary, additional measures should be taken to minimize irritation and prevent dry skin. When bathing or showering, warm (not hot) water and a mild soap should be used.
    • To prevent dry skin:
      - Use creams or oils on your skin.
      - Avoid cold or dry air, minimize moisture from urine or stool, perspiration, or wound drainage. Often urine leaks can be treated. To obtain a copy of Managing Urinary Incontinence: A Patient's Guide, call 1-800-358-9295 or write to the AHCPR Publications Clearinghouse, P.O. Box 8547, Silver Spring, MD 20907.
    • When moisture cannot be controlled:
      - Pads or briefs that absorb urine and have a quick drying surface that keeps moisture away from the skin should be used.
      - A cream or ointment to protect skin from urine, stool, or wound drainage may be helpful.
  2. Protect your skin from injury
         Avoid massage of your skin over bony parts of the body. Massage may squeeze and damage the tissue under the skin and make you more likely to get pressure ulcers.
    • Limit pressure over bony parts by changing positions or having your caregiver change your position:
      - If you are in bed, your position should be changed at least every 2 hours.
      - If you are in a chair, your position should be changed at least every hour. (if you are able to shift your own weight, you should do so every 15 minutes while sitting.)
      - Reduce friction (rubbing) by making sure you are lifted, rather than dragged, during repositioning. Friction can rub off the top layer of skin and damage blood vessels under the skin. You may be able to help by holding on to a trapeze hanging from an overhead frame. If nurses or others are helping to lift you, bed sheets or lifters can be used. A thin film of corn starch can be used on the skin to help reduce damage from friction.
      - Avoid use of donut-shape (ring) cushions. Donut-shape cushions can increase your risk of getting a pressure ulcer by reducing blood flow and causing tissue to swell.
    • If you are confined to bed:
      - A special mattress that contains foam, air, gel, or water helps to prevent If you are confined to a bedpressure ulcers. The cost and effectiveness of these products vary greatly. Talk to your health care provider about the best mattress for you.
      - The head of the bed should be raised as little and for as short a time as possible if consistent with medical conditions and other restrictions. When the head of the bed is raised more than 30 degrees, your skin may slide over the bed surface, damaging skin and tiny blood vessels.
      - Pillows or wedges should be used to keep knees or ankles from touching each other.
      - Avoid lying directly on your hip bone (trochanter) when lying on your side. Pillows or wedges should be used to keep knees or ankles from touching each other.Also, a position that spreads weight and pressure more evenly should be chosen - pillows may also help
      - If you are completely immobile, pillows should be put under your arms from midcalf to ankle to keep heels off the bed. Never place pillows behind the knee.
    • If you are in a chair or wheelchair:
      - Foam, gel, or air cushions should be used to relieve pressure. Ask your health care provider which is best for you. Avoid donut-shaped cushions because they reduce blood flow and cause tissue to swell, which can increase your risk of getting a pressure ulcer.
      - Avoid sitting without moving or being moved.
      - Good posture and comfort are important.
  3. Eat well
    Eat a balanced diet. Protein and calories are very important. Healthy skin is less likely to be damaged. If you are unable to eat a normal diet, talk to your health care provider about nutritional supplements that may be desirable.
  4. Improve your ability to move
    A rehabilitation program can help some persons regain movement and independence.

Be Active in Your Care
This information tells how to reduce your risk of getting pressure ulcers. Not all steps apply to every person at risk. The best program for preventing pressure ulcers will consider what you want and be based on your condition.

Be sure you:

  • Ask Questions
  • Explain your needs, wants, and concerns.
  • Understand what and why things are being done.
  • Know what is best for you. Talk about what you can do to help prevent pressure ulcers - at home, in the hospital, or in the nursing home.

Information provided by the U.S. Department of Health and Human Services
Public Health Service
Agency for Health Care Policy and Research
Executive Office Center, Suite 501
2101 East Jefferson Street
Rockville, MD 20852

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How do I care for my child's wound?
Gently clean the stitches or wound as instructed with soapy water 2 times a day until the stitches are removed or the wound is healed. Dry the wound after cleaning.

  • After cleaning, apply a small amount of antibiotic ointment to the stitches or wound for 2 or 3 days.
  • For stitches on the face, antibiotic ointment should be used until they are removed. This will help stitches to come out easier.
  • Covering the wound is not necessary after 24 hours, unless otherwise instructed.
  • No swimming or tub baths while stitches are in place. Showering is OK.
  • No real active play or contact sports; take care to protect the wound for ____________________.
  • For 1 year after the scar heals, apply sunscreen when in the sun. This will prevent darkening of the scar.

When do the stitches need to be taken out?
The stitches should be removed in ___________ days by your child's doctor. Call the office for an appointment as soon as possible so this can be done on the correct day. Stitches removed too late can cause more scarring. If any stitches come out early, apply a bandage and call the clinic.

When should I call the clinic? Call if a wound has any signs of infection:

  • more redness
  • more swelling
  • more pain
  • pus draining from wound
  • red streaks going out from the wound
  • fever higher than 101° F

Questions?
This sheet is not specific to your child, but provides general information. If you have any questions, please call the clinic. For information on health, parenting, injury prevention, or community resources, please call the Family Resource Center at (612) 813-6816 or (651) 220-6368.

CAREGIVER TIPS & INFORMATION:
  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources

 


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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