and find out these meds don’t work. Why not give [clinical trials] a try? That’s what will help us find cures for these illnesses. I am in a clinical study, and my family and I are glad we decided to take this open road because we are finding the results positive.

Second, being affected with dermatomyositis for 11 years and on prednisone for that long, I was very excited to see “Studies and Trials Target Myositis.” It shows some progress and a Web site to help us with the effects of dermatomyositis.

Carlie Brinker
Millersburg, Ohio

AGING WITH A DISABILITY

I would like to commend Carolyn Bush on her insightful “From Where I Sit: As I Sit Aging” article (September-October).

I am a 66-year-old female with nemaline myopathy. I thank her for expressing what aging people with or without a muscle disability are going though.

I also would like to hear from anyone else in my age group who is going through the same things with a muscle disease.

Carole Brandes
Aventura, Fla.
carolebrandes1@webtv.net

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 letter to publications@mdausa.org.

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, contact your local MDA office.

GREAT ARTICLES

I would like to express my views on a couple of articles in the November-December Quest. First, I enjoyed the article “To Register or Not to Register.”

I think it is a great idea to register for clinical trials as long as you know and trust who is doing the study. Yes, this may require you to do some homework on it.

It’s very worth it if you have had a disease for a long period of time and you try different medications for different symptoms, then struggle with the side effects

AMAZING CONNECTION

Fifteen years ago, I was diagnosed with MD and later told that no one was quite sure what was going on with me.

I gave up on getting any real diagnosis or treatment and told myself that there were people a lot worse off than me and I could live with it. That was until I picked up the March-April 2006 issue of Quest.

There was an article about a woman from Bemidji, Minn. (“Connections: Former Olympian Skates On”). As I read through her bio I was struck by the similarities of her symptoms and those that I have been experiencing. I was so amazed that I had to talk to her!

I contacted Chantal Cermak and had a wonderful conversation about what she had been experiencing over the years: time, symptoms, duration, diet, stress levels, anything that could possibly cor-

relate to what I have been experiencing. I am quite sure that we share the same diagnosis: metabolic myopathy.

You have a wonderful organization and I know on a local level how many people you have inspired and assisted.

Ben Roehl Nevis, Minn.

Editor’s Note: To get an accurate diagnosis, please make an appointment at an MDA clinic.

LOOKING AHEAD IN QUEST . . .

Watch upcoming issues of Quest for stories on:

• Playing the Dating Game

• Exercising with a disability

• Family Medical Leave Act

• IEP tips from parents

• Service dogs

• FSH muscular dystrophy

• Myotubular/centronuclear myopathies

• and more on technology, travel, accessibility issues and medical care

Check www.mda.org/publications/Quest/q_helpquest.html to find out which stories we need to interview people for.

By sharing your story, you’ll be helping others with neuromuscular diseases.

PARKING RIGHTS

Re: “Parking Peeves” (“Mailbag,” September-October), we all agree that handicapped parking is a challenge and needs improvement.

There’s one handicapped spot left. The sign says, “Van Accessible” (not “Van Only”). Do you expect handicapped people without wheelchairs to park elsewhere? People have placards for different reasons: heart conditions, arthritis, etc.

I’ve found notes on my car due to ignorance. Notes saying I’ll be turned in. I say, “Go ahead!” They assume I’m stealing the spot because I’m not in a wheelchair.

I’d love for someone to be waiting by my car. I would, as the letter writer said, “educate them” about my severe pain, fatigue and weakness due to central core disease. I shouldn’t have to explain my rights and disease for permission to park in a handicapped spot.

Parkers who don’t have a placard, who run to the door, or who borrow someone’s placard, are obvious offenders. Then there are people like me. No wheelchair, just a limp and shopping carts to lean on. Days with less pain and weak-

8 Quest

2007, No. 1