The Muscular Dystrophy Support Center

 

Every person is unique, but when you face a challenge like muscular dystrophy (MD), you are never alone. Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web to assemble links to the very best muscular dystrophy resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this muscular dystrophy (MD) guide even more helpful to survivors like you.

 

JUST FOUND OUT

Survivors Say: Best Resources for Muscular Dystrophy

• National Institute of Neurological Disorders and Stroke (NINDS): Muscular Dystrophy Information Page 
• Muscular Dystrophy Association
• Mayoclinic.com: Muscular Dystrophy  
• TeensHealth: Muscular Dystrophy

The Big Picture

Muscular dystrophies (MD) are a group of more than 30 genetic diseases in which the muscles that control movement grow progressively more weak. Some forms of MD are seen in infancy or childhood, while others may not appear until middle age or later. The disorders differ in terms of the distribution and extent of muscle weakness (some forms of MD also affect heart muscle), age of onset, rate of progression, and pattern of inheritance.

The National Institute of Neurological Disorders and Stroke has information on the types of MD and their treatments:

National Institute of Neurological Disorders and Stroke: Muscular Dystrophy: Hope Through Research

Do you know the signs of MD? These pages explain how to recognize muscular dystrophy and how it's diagnosed:

• Mayoclinic.com: Muscular Dystrophy Symptoms
• Mayoclinic.com: Understanding Muscular Dystrophy -- Diagnosis & Treatment

Your Muscular Dystrophy

There are nine major types of MD, each with its own symptoms and treatment options:

Muscular Dystrophy Association: Diseases

It's important to communicate well with your doctor so you are sure you understand the type of MD you have and how you'll start treatment - here are some good questions to ask:

FreeMD: Muscular Dystrophy Treatment - Questions For Doctor

Your World

After being diagnosed with MD, a serious, degenerative disease, you are likely to experience a flood of emotions. It's important to talk now with your loved ones and to reach out to support centers - online or in person -- during the initial stages of your journey:

• Mayoclinic.com: Muscular Dystrophy - Coping & Support
• Muscular Dystrophy Family Foundation
• Parent Project Muscular Dystrophy
• Muscular Dystrophy Association Online Community
  

Muscular Dystrophy Myths

• "Muscular dystrophy only affects children."
• "MS is another name for muscular dystrophy."
• "Muscular dystrophy only affects boys."

Information and Recommended Links for Survivors

• Muscular Dystrophy Patients United
• Muscular Dystrophy Family Foundation: Services
• Parent Project Muscular Dystrophy: Managing Daily Life

Types of Treatment

Treatment for MD usually consists of a combination of physical therapy, drugs to prevent/reduce spasms and encourage muscle strength, and devices like braces to help compensate for muscle weakness:

Mayoclinic.com: Muscular Dystrophy -- Treatment and Drugs

As the parent of a child with MD you may want to seek out the advice of a variety of specialists for treatment:

Early Childhood Initiative Foundation: What are some professionals my child may need to see?

Physical Therapy

The most common type of therapy for muscular dystrophy is physical therapy:

eHow - Treat MD with Physical Therapy

Medication

Some muscular dystrophy diseases can be managed or have symptoms somewhat alleviated by medication:

Umm.edu - Medication Treatment Options for MD

Other treatment options include corrective spinal surgery and assistive devices like canes and braces.

Possible Treatment Side Effects

To learn about what side effects are possible from steroid drugs, read on:

Muscular Dystrophy Campaign: Steroids and Duchenne Muscular Dystrophy - Some Questions and Answers

New Therapies

Since MD is a group of genetic diseases, it's not surprising that researchers are hopeful about finding a cure through gene therapy, among other approaches:

Muscular Dystrophy Association: Research News

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or set up your own.
• Interact and provide updates on your TSC profile or in the TSC forums.

Insurance & Work Matters

Insurance Matters

You may qualify for Social Security Disability, regardless of your age:

• SocialSecurity.gov: Benefits for Children with Disabilities (PDF)
• SocialSecurity.gov: Understanding Supplemental Security Income (SSI)

Work Matters

Help make workplaces more accessible to people with muscular dystrophy and other disabilities:

Georgia Institute of Technology: Workplace Rehabilitation Engineering and Research Center

Health-care Providers Who Can Help

As someone with MD, or the parent of a child with MD, you may see physical therapists, speech therapists, orthopedic surgeons, and/or your regular primary care physician (or pediatrician). Because MD is genetic, you may decide to see a genetic counselor, too:

University of Rochester Medical Center: Educational Resources - Genetic Counseling & Testing

Resources to Find Doctors

• American Physical Therapy Association - Find a PT
• American Speech-Language-Hearing Association - Find an Audiologist or Speech-Language Pathologist
• American Academy of Orthopaedic Surgeons - Find an Orthopaedist
• National Society of Genetic Counselors, Inc. Search

The Emotional Rollercoaster

Having muscular dystrophy is a very emotional experience. It's important to do your best to continue living your life as normally as you're able, participating in the same daily activities you've always done. A support group can be invaluable as you learn to manage the extreme feelings living with MD can bring up:

• Muscular Dystrophy Family Foundation
• Muscular Dystrophy Association Online Community

Books Survivors Recommend

• Missing My Body by Taryn Simpson and Jason Walker
• Muscular Dystrophy: The Facts by Alan Emery
• Muscular Dystrophy in Children: A Guide For Families by Irwin M. Siegel

Communicating with Your Health-care Providers

• Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear. Your advocate can take notes and may think up more questions to ask.
• Don't be afraid to ask any questions you feel you need the answer to, even if you may be afraid of the answer.
• Write down any questions ahead of time and don't be afraid to ask for clarification on anything you don't understand.

Dealing with Muscular Dystrophy: Information and Recommended Links for Co-Survivors

How You Can Help

• Preserve your survivor's usual daily routine as much as possible. Don’t exclude him/her from activities or decisions; this could contribute to feelings of helplessness. Inactivity also can worsen the disease.
• Involve your friend or family member with others and don't focus on their disease when you're out.

What to Say

• "There are treatments that can help."
• "New therapies for MD are being researched all the time."
• "I'm here to help."

What Not to Say

• "I always get muscular dystrophy and multiple sclerosis mixed up."
• "I thought only children get that."
• "Are you going to die?"

Things You Can Do For a Survivor Every Day

• Offering your day-to-day support is a great gift. If the survivor isn't a family member, help out by picking up the mail or newspaper when they are away, making meals, going grocery shopping, or doing other errands they need help with. If the survivor is a family member, help out with chores or other duties they may have fallen behind on.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates on your loved one.

How to Help a Survivor Deal with Day-to-Day Challenges

• 5 things teachers need to know before your child with MD starts school: About.com: Special Needs Children - Preparing the School for Your Child with Muscular Dystrophy
• Tips on Returning to Work with MD from the U.S. Department of Labor’s Office of Disability Employment Policy: Job Accommodation Network: Employees with Muscular Dystrophy

During periods when your symptoms are under control assess and share with others how you feel emotionally, mentally, and spiritually. Telling your story not only puts your thoughts and emotions into perspective but you can provide hope to others who are going through a similar journey, whether with MD or another health crisis.

Remission / Recovery / Recurrence

Some forms of muscular dystrophy progress quickly, while others take years to worsen, and there's a lot of variation in symptom severity, too, depending on the type of MD you have. If the treatment you've been following isn't working as well anymore, it's time to talk to your doctor about revisiting your treatment plan:

• MDA: Duchenne Muscular Dystrophy
• MDA: Becker Muscular Dystrophy
• MDA: Emery-Dreifuss Muscular Dystrophy
• MDA: Limb-Girdle Muscular Dystrophy
• MDA: Facioscapulohumeral Muscular Dystrophy
• MDA: Mytotonic Muscular Dystrophy
• MDA: Oculopharyngeal Muscular Dystrophy
• MDA: Distal Muscular Dystrophy
• MDA: Congenital Muscular Dystrophy

Give Back

What helped you when you got the diagnosis of MD and underwent treatment? Take a look back at your journey and share with others what made it easier and what you wished you would have known or done during your experience. You can create a TSC profile, reach out to other survivors, join support circles, or share your story by following the links at The Survivors Club.

To support muscular dystrophy research and education, visit this site:

Charity Navigator Rating: Muscular Dystrophy Association

Dealing with the possibility of death is something nearly all of us struggle greatly with. But in most cases MD is a terminal disease, though a lot depends on the type of MD you have. It can help greatly to talk to others who understand your exeprience first-hand:

• Muscular Dystrophy Association: Support Groups
• Muscular Dystrophy Association: Chat Calendar

You can plan to leave a legacy gift to the Muscular Dystrophy Association to help them continue their work:

Gift Planning at MDA

When You're Facing Death

• FamilyDoctor.org: Cancer - Palliative Care
• MedlinePlus: Hospice Care
• MedicineNet.com: Loss, Grief and Bereavement