MDA Mailbag September-October 2008

by Quest Staff on September 1, 2008 - 9:21am

QUEST Vol. 15, No. 5

Letters to Quest about: Still going with LGMD ** LEMS support group ** CMT role model ** Document disabilities ** Sleep story kudos ** Networking

Still going and going …

I’m 53 years old, soon to be 54. At the age of 3, I was diagnosed with limb-girdle muscular dystrophy, and in 2002 I learned I had osteoporosis and massive degeneration of my hips. In spite of it all, I’m still on my feet — walking and swimming twice a week as part of my therapy.  I’ve recently begun taking Boniva for the osteoporosis and I still use magnets at night and drink green tea to keep healthy.*

But I have to say that most of it is your state of mind. A person’s state of mind rules their body. To stay healthy, you’ve got to keep motivated. When we give in to negative thinking, that’s what makes us go downhill. 

D.A. Herman
Alliance, Neb.

*Editor’s note: Ms. Herman was featured in the June-July 2002 Quest article “Staying Healthy with a Chronic Disease: From the Outside in — Magnets, Massage and More.”

LEMS support

I was diagnosed with LEMS (Lambert-Eaton myasthenic syndrome) in December 2006. I would like to let others with LEMS know that there is an online support group. It is for support only, not for medical information.  The link is

Susan Harper
Murrysville, Pa.

A good example

I am a teacher who has CMT (Charcot-Marie-Tooth disease). I work full time in a high school and am an advocate for helping students understand that disability does not mean you can’t; it only means you have to find another way to do something if you really want to do it. Awareness and understanding go a long way in making the public, and by that I mean students, accept those who are different. I wear leg braces, but the students often forget because I remain active in my job. I hope that I am setting a good example for them.

Judith Neilan
Monticello, Ind.

Document disabilities

Regarding the article “Check out developmental disabilities funds” (“Playing the Money Game,” May-June), my wife and I attempted to gain support for our cognitively disordered son with myotonic muscular dystrophy through the California Resource Center social services. The protracted effort was unproductive and frustrating. The Center staff adamantly refused to even acknowledge our son’s emotional disability, to the extent of sending an obstructionist representative to Superior Court for a conservatorship hearing to tell the judge our son had no cognitive disorder. Fortunately the judge disagreed.

The point I would like to make to readers who anticipate the need for future social services is to begin now collecting copies of any and all pertinent medical records and amass a paper trail. Especially important are psychological and psychiatric assessments. Those records likely will not exist in 15 or 20 years when it becomes necessary to substantiate documentation to a resistant bureaucracy.

Dale Blankenship
San Diego, Calif.

Editor’s note: For more on MMD, see “The Brain in MMD.”

Sleep story kudos

I just wanted to pass along kudos for the article “Not Enough Zzzzz’s?” (March-April). I have referenced this article a number of times while in clinic and have handed out many extra copies to family members and caregivers who had not seen it. There is a lot of anxiety about sleep studies and BiPAPs, and this article has reassured many people.

Joyce Vyriotes
MDA Health Care Services Coordinator
Tucson, Ariz.

Time to network

Regarding Erica Blinkhorn’s letter (“Living with SMA,” January-February 2008), I suggest she get in touch with the National Theater Workshop of the Handicapped, 96 Church St., Belfast, ME, 04915; (800) 618-6622; The young man who is into films (“A Fondness for Film,” January-February) sounds like another good contact to make. She has made a good start by writing to Quest; now is the time to start serious networking.

Gayle Monahan
Horseshoe Bay, Texas

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