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

 

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,
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disabled people in every state. My e-mail is teresa_fuller@sbcglobal.net, 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 (March-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,” (March-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].

Looking Ahead in Quest

The fall issue of Quest ( October-November-December) will include articles about:

• Accessible office spaces

• Holiday gift guide

• Retiring a service dog

• Innovative living arrangements

Be sure to check out the new Quest home page, Quest Magazine Online ( www.mda.org/questmagazineonline) for additional research and features found only online.

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 awk-ward] 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