MDA Mailbag July-August 2008

Article Highlights:
  • Letters to the editor discuss overcoming obstacles, facing everyday difficulties, and sleepiness and the drug Provigil.
by Quest Staff on July 1, 2008 - 3:01pm

QUEST Vol. 15, No. 4

Letters to the editor discuss overcoming obstacles, facing everyday difficulties, and sleepiness and the drug Provigil.

Obstacles make us stronger

I have limb-girdle muscular dystrophy. I remember as a child wondering why I felt different and how come I couldn’t move like the other kids. For a long time I kept my health situation a secret. Since I couldn’t play sports like my friends, writing and music became my main outlets. But as I got older and angrier because of my health, and really wanted to play sports and run like the wind, I became an unruly child. When I was 14 years old, my mother decided to pull me out of the public school system. She homeschooled me herself for one-and-a-half years.

Throughout that time I was still unruly. I received my G.E.D. at the age of 16 and started going to a community college. I was still angry and unruly. At the time I didn’t realize the educational advantage that I had and partied a lot. In my early 20s, Buddhist practice came into my life. Writing, music and Buddhist practice were my outlets.

In 2005, I was fortunate enough to be a student in a program sponsored by the City of Cleveland and NASA (National Aeronautics and Space Administration). This program was eight months long and paid me to come to school and study to become a machinist. It was really fortunate that I was getting paid to go to school because I was getting evicted from my apartment and unemployed, so school was my only source of income. At the beginning of the program there were 15 students. When graduation day came there were only seven of us. The teachers informed us that we were the first 100 percent African-American class. I said to myself, “Wow, I’m part of history.”

Well, three years later I’m employed again and life’s getting better. In Buddhist practice they say that when you have obstacles in your life that’s fortunate because you have an opportunity for your life to change, become stronger and wiser. Now I’m 27 years old and realize that I’ll have muscular dystrophy for the rest of my life. I’ll always be strong and always have an opportunity to change my life for the better. I live a normal life to the point that people wouldn’t know that I’m one of Jerry’s Kids and very proud of it.

I just want to encourage my fellow MDA members to hold on, be strong and know that we can be anything we want to be.

Jason LeSure
Pen and Pad Songwritings LLC
Lakewood, Ohio

Facing everyday difficulties

I am 40, soon to be 41, with a mild form of limb-girdle muscular dystrophy. [In school] I had a few subjects that my classmates didn’t have: adaptive physical education, resource room, physical therapy and speech therapy in fifth grade because I had a lisp.

Resource room was a nightmare when I was in high school because all of the teachers talked to each other and I was the last person to know. One teacher always thought that my resource room teacher had told me about his plans, while my resource room teacher thought that the other teacher had told me about his plans. When I was failing three subjects one semester, all three teachers waited until the last minute to tell me to stay after school to make up the work, or to do the work while I was in study hall or the resource room.

I had to go through a painful biopsy and was so self-conscious that I didn’t wear shorts until I was 15 years old. The scars had faded by then, but nine years is a long time to have body image issues. I am glad that Quest magazine talks about the difficulties that physically challenged children and adults face in their everyday lives.

Sandra Elluzzi
Somers, N.Y.

Sleepiness & Provigil

I have myotonic dystrophy. I sleep a lot more than 13 hours a day. I am now taking Provigil 200 mg tabs. Provigil works on me. I do not sleep all day. I believe this is great information for physicians that deal with people that have neuromuscular diseases. Provigil (common name modafinil) is an anti-narcoleptic agent used to improve wakefulness in patients with narcolepsy. All I know is it is working for me. With any medication, consult your family doctor. I am just letting you know that I am able to stay up more. I hate it when I sleep all day.

I was in the Quest Pen Pals list, and have received several letters sharing different views on how we can improve our everyday living skills. I hope sending this information will help some very sleepy people to stay up and be able to enjoy a beautiful day.

Cynthia Ann Stelter
Redding, Calif.

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