MDA Mailbag Summer 2009

by Quest Staff on July 1, 2009 - 2:14pm

QUEST Vol. 16, No. 3

Letters to Quest: Myasthenia gravis ** Paid family caregiver ** Exercise ** Self-esteem ** Wheelchair fashion.

Surreal experience 

Thank you for your great magazine! At first it made me emotional, but I figured out it helped put me in reality. I was diagnosed with myasthenia gravis two years ago.

I’m 55. I worked as a hairdresser for 35 years. [Every year] when I was a kid, my best friend and I went door-to-door and collected money for MDA. This was in the ‘60s. It got surreal for me when I became ill. I helped contribute to my own recovery! I just wanted to tell you my story and to thank you.

Madelyn Young
Portsmouth, Ohio

Paid family caregivers

I’m 50 [and] was diagnosed with FA [Friedreich’s ataxia] when I was 25. I’ve been in a wheelchair for over 18 years.

I’m writing about family members being paid to be caregivers. My daughter is my caregiver and yes, the company she works for knows she’s my daughter and pays her for her time. I’m not the only person who needs a caregiver and would love to have a family member get paid to help them.

I think our government should help all disabled people in every state. My e-mail is, so write me if you want to reply.

Teresa Skyles
Osage, Okla.

Great issue!

I have been happy to receive the Quest magazine over the years, but this one (April-June 2009) really was helpful.

1. “From Where I Sit” (“Am I Disabled or Aren’t I Disabled?”) is right up my alley! Most are not aware I have myasthenia gravis. They don’t think about my dragging feet or dropping things. They think my raspy voice is a cold. They see my droopy eyelids as if I’m sleepy. I feel guilty when I know others have so much more difficulties. But I thank God that things aren’t worse.

2. Doctors have encouraged me to exercise but I’ve wondered how much and what kind of exercise I should do. Tiring easily doesn’t encourage me to exercise. This issue was a great help, including the topic of exercising the mind. Now I don’t feel bad about spending a lot of time with puzzles and reading (when my eyes will let me). I feel like a slug around my busy-bee husband.

3. Caregiving is important to me, as well. My husband is a cancer survivor. I spent a long time being his caregiver. Thank you so much for this issue!

Louise Cummings
LaPorte, Ind.

Not inspirational

I am writing to you about the very disappointing article, “The Effect of Exercise on Different Muscle Diseases,” (April-June 2009). My problem is that it is most certainly not inspirational and it just might be very disheartening for those with CMT [Charcot-Marie-Tooth disease].

I was diagnosed with CMT at 12, and am now 65. Over 30 years ago, I was told not to exercise by a “specialist” in muscular dystrophy. Since then I have bicycled at a very high level, both mountain and road. I rode around Lake Superior, and this year after retiring, I downhill skied.

These sports did not come easily. Learning to ski with very deformed feet and very weak legs was the biggest challenge of my life. I underwent three major surgeries so that I could walk and perform better in the sports I chose.

These sports transformed my life. When I was a child and couldn’t run with the other kids, and later as [an awkward] teenager, my self-esteem suffered. However, through much hard work, some pain and lots of luck, I have received the benefit and joys of these recreational sports.

My belief is that inspiration may actually make a huge difference. Certainly CMT is a very debilitating disease and can vary widely in its effect. Because I didn’t listen to the doctors, and sought out ways to participate in sports at my level, I have had and hope to continue to enjoy an active and rewarding life.

Van Schilling
Edmonds, Wash.

Be proud of yourself

Have you ever felt like you were all alone — like no one knew that you existed? Well, that was how I felt in high school. I have myotonic muscular dystrophy. No matter how hard I tried to make it seem insignificant, I was defeated at every attempt.

My physical abilities were not up to par, but my emotions ran high. Oh how I hurt and wanted people to understand, and to treat me with dignity and respect. High school felt like a battlefield, knowing I was different, praying for God to make the pain go away.  I had one true friend who understood that underneath my tough skin was a scared girl who couldn’t understand why the world was so cruel just because she was disabled.

Nothing can change the past, but I had to change the future. Who’s gonna stick up for me? Nobody but me. College changed my life. Everyone was different and it didn’t matter if they liked you. It was the best feeling ever.

I learned to be myself. That’s all I can do,  look on the bright side and know there’s a silver lining in the clouds of doubt. My advice is to remember you are bigger and stronger than what they say you are. You are better than that. Just be proud of yourself.

Sarah Jefferson
Union, Ill.

The following letters are in response to “The Quest for Fabulous Wheelchair Fashion” (April-June 2009).

AFO fashion sense

Fabulous Fashion? I wear AFOs [ankle-foot orthoses] and stopped watching “What Not to Wear” because of the incessant mocking of long skirts and clunky shoes.

There’s no escaping the knee-high sock pulled up and over the calf strap. Nylons and tights catch and tear and you’re left with runs in your hose.

The show touts knee-length skirts and walking shorts. HELLO to the sock cuffed over your AFO strap, which screams out “look at me!”

A length just below the knee means fabric gets hung up on the strap when walking and exposes the cuffed strap when sitting. A long skirt will cover at least this part of the embarrassment of wearing braces. If you can manage a few hours without ankle support, the “pointy toe shoe” (another of the show’s mantras) is a hazard for foot-drop, even if they’re ballet flats.

I have weak ankles and wide feet, made wider with AFOs. Where are the cute shoes that are low, wide and have the coverage to wrap around a brace?

It’s hurtful to hear the show’s hosts make fun of long skirts and sing the praise of pointy-toe heels for long, lean legs. You won’t see AFOs and canes on the fashion runway.

Ranel Gretebeck
Oshkosh, Wis.

Fashion and MD

Your article missed some key points about clothing and muscular dystrophy. Comfort, mobility and affordability are key issues beyond superficial looks. If you are not comfortable you will not feel very stylish.

The only pictures of the male model show him in a suit. This may be fashionable if you work at a financial institution, but that is not the majority of us.

The one useful tip the author mentioned was tailoring. This is a help only if you can afford it or have a friend do it. Tailoring that could have been mentioned to help people with neuromuscular diseases are as follows: longer zippers, or Velcro zippers (it makes dressing and toileting a whole lot easier), sew shut the pockets and cut them out. (Who wants to sit on them all day?)

Suits and fashion are not necessarily synonymous. One can be extremely professional and fashionable and still be dressed comfortably. I spent many days at the California State Capitol talking to legislators and I never once wore a tie and was very respected by the legislators. As someone with muscular dystrophy, I had to consider being warm in the winter over the impracticality of a suit.  I wore wool sweaters which are extremely warm and light. All my wool sweaters were unique and I received positive comments all the time.

Shoes are a definite issue when you are in a chair. My feet have been misshapen from my muscular dystrophy. I have always chosen shoes that are light and have little or no sole. Luckily for me, I have a friend who is a shoemaker. She makes my shoes out of buffalo or bull hide. I have a number of pairs ranging from plain to extremely colorful. I get comments constantly on my shoes.

The author placed an unreasonable amount of emphasis on not drawing attention to your feet. Tips for footwear should be: lightweight, easy to put on and take off and, once again, [appropriate for the] temperature.  Crocs come in plain black and brown, are a magnitude lighter than any shoe or sneaker, and go on and off really easy. Black clogs are stylish for both men and women. 

I do agree accessories can make the outfit. Jewelry that is chosen because it has meaning is always more fashionable than something purchased from under a glass counter. 

Fashion is an individual trait. What feels fashionable for some would not feel fashionable for others. This is compounded when you throw in a neuromuscular disease. Ease of dressing, undressing, toileting, and temperature are just a few of the clothing traits that cannot be overlooked with muscular dystrophy. I believe this author … missed the mark as far as fashion tips for people with muscular dystrophy.

Dan Grover
Chico, Calif.

In each issue, space allowing, Quest will run letters sent to MDA, National Chairman Jerry Lewis or to the magazine.

Write to: MDA Mailbag, Quest, MDA,
3300 E. Sunrise Drive, Tucson, AZ 85718-3299.
Or e-mail letters to

Letters must be signed and contain a daytime phone number, city and state, and be no more than 250 words. Letters may be edited for space.

If you have questions about your Quest subscription and are registered with MDA, contact your local MDA office by calling (800) 572-1717. If you’re not registered with MDA, direct subscription questions to the national office at (520) 529-2000.

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