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