MDA Mailbag Winter 2010

by Quest Staff on December 31, 2009 - 1:05am

QUEST Vol. 17, No. 1

Letters to Quest: A pageant hopeful recalls her experience ** A son takes a moment to thank the tireless work of his mother ** A reader learns of the kindness of strangers ** Still others reflect upon the blessings in their lives and give thanks.

Ms. Wheelchair and me

Re: “Ms. Wheelchair Pageant Brings Out the Beauty Within,” Fall 2009. I am pleased that Ms. Neyland had a wonderful opportunity at her state pageant, but believe she would have had a much different experience had she participated in the national pageant. I had that opportunity this year, as reigning Ms. Wheelchair Indiana.

Unfortunately, many of the questions judges asked betrayed their preference and expectation that Ms. Wheelchair America have a spinal cord injury rather than a genetic disorder. For example, I was asked, “What have you accomplished since your accident?” Like Ms. Neyland, I had a good experience at my state pageant, but I would warn any potential national contestants with neuromuscular disorders that changes must be made before we get respected as excellent and beautiful advocates, too.

Emily Munson
Indianapolis, Ind.

Life is good with OPMD

I have oculopharyngeal muscular dystrophy (OPMD). It’s a slow, progressive dystrophy that takes over your legs, arms, hands and [ability to] swallow. It also affects your eyelids. The muscles in your eyelids lose their elasticity and your eyelids begin to droop.

I have made many adjustments to my home to make life easier. I placed small, movable shelves on my counters and lower cabinets, and use lightweight dishes and plastic cups. A convection oven has been a blessing. At least now I can do some cooking on my own.

My husband renovated my bathroom so it can be wheelchair-accessible. Through Medicare and my second insurance company, I’ve received a Hoveround [power] wheelchair. I now can, like the ad says, go shopping at the mall.

I’ve been fortunate that my husband was able to afford a wheelchair-accessible van. Just when you think life is getting harder, it really isn’t. I always hated taking a shower and now, lucky me, I have a nice lady come every day and take care of my personal needs.

My OPMD might be worse, but my life is better. With family support and wonderful grandkids, what more could I want? Life is good!

Carol Yannone
Brockton, Mass.

Yea, Mickey!

We just got back from Disneyland in California. What a blast. My daughter and her friend are in wheelchairs. My friend and I are in scooters, and it was the most accessible place I’ve ever been. Even Southwest Airlines was incredible.

At Disneyland, we got on the rides and [into] events first. We stayed at the Disneyland Resort. This was all from the Wishing Well Foundation.

If you have accessibility issues and want an exciting place to go, this is it!

Denise Lavelle
Gresham, Ore.

The kindness of strangers

I have facioscapulohumeral muscular dystrophy (FSHD). I use a walker to get around, but it just gets harder and harder to get myself up and out of a chair.

My wife and I celebrated our 49th wedding anniversary by going to dinner at a restaurant a few weeks ago. After dinner I could not get out of the chair.

After a while, two men came over and helped me get up and to our van. After getting to the car, one of the men said to us, “I have a scooter that is stored at a building at the airport … Our family would like to help you; you can use the scooter for as long as you need it.”

I’ve picked up the scooter and now have a new world to see. These wonderful people were complete strangers, but offered their scooter to me.

My wife and I thought people should know about the kindness that was offered to me through this wonderful gift. They will always be in our prayers. It’s changed my life, allowing me to get out once in a while.

Craig Harris
Des Moines, Iowa

Editor’s note: MDA’s equipment loan program is another source of gently used equipment. See MDA Matters.

Mom’s the best!

I am writing to tell you about my mom. I am single and 27 years old. I have hereditary spastic paraplegia [a disease not covered by MDA that causes weakness and spasticity].

My mom has taken care of me my whole life. I used to walk, but I broke my leg when I was 15 and have been in a chair ever since. We struggle every day, but we end up on top most of the time. I help with yard work and what impresses me most is we have two riding mowers. My mom is in a regular rider. I put a power mower in front of my power chair and — presto! — another rider.

My mom doesn’t work anymore because I am her full-time job. She dresses me, gets my food and bathes me. I would be dead by now, were it not for her. Well, this is my amazing mom.

Timothy Combs
Mt. Vernon, Ind.

Living with CCD

I am 89 years old. I was diagnosed as having central core disease (CCD) by a muscle biopsy about 30 years ago.

When I was young, I led an active life. I finished college, taught school and did some mountain hiking; however, I have always had slight difficulty climbing stairs.

I now live in an assisted living facility. I go to exercise classes and make use of exercise equipment provided there. I walk by using a walker and have a hospital bed to assist me in getting out of bed.

I expect to be in a wheelchair soon due to increasing weakness. I am small in stature and am careful to keep my weight under control.

Kathleen McCook
Nashville, Tenn.

Editor’s Note: Watch for an “In Focus” report on CCD coming from MDA in Spring 2010.

Thanks for Quest

Thank you for the Quest magazines – each one. Anytime I receive it, it gives exceptional information, support and “good feelings.”

My granddaughter has muscular dystrophy. She’s now 18, and her courage and stamina are just overwhelming for me to even understand. Quest gets me through it.

As well, it means so much to my daughter. It has helped her to cope, to understand and to continue.

The recent information in Quest on the ProBed was very interesting and I am hoping that I can work it out for her to acquire it. My daughter and her family live in Athens, Greece. I live in Nassau [Bahamas]!

Kate Kiriaze
Nassau, Bahamas

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