Michael J. Fox spotlights a need

Last updated on: May 9, 2013 at 6:22 am by Faithful Democrats

Michael J. Fox spotlights a need 2013-05-09T06:22:52-06:00 Faithful Democrats

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Michael J. Fox, in political ad, turns a spotlight on need to study rare disorders

By A. E. P. Wall

Special to the Orlando Sentinel

Friday, October 25, 2006

Rush Limbaugh’s unrehearsed, unthinking charge was that Michael J. Fox was "off his medication or acting." Fox had been seen trembling and weaving in a TV commercial urging Missouri voters to support stem cell research, and Limbaugh’s put-down was probably as impulsive as it was repulsive.

Chances are a few million Americans were nodding their heads, going along with the conservative commentator’s remarks right up until the moment Limbaugh apologized. Many of us swing our eyes toward something less troubling when we spot someone caught up in neurological shaking, stumbling, mumbling, gasping or tumbling.

The original, robust Michael J. Fox still entertains in movies and on TV screens in performances filmed before his diagnosis of Parkinson’s disease in 1991 and his public disclosure in 1998.

Fox was just turning 30 when he found out that he was losing his grip on everything familiar, victim of a progressive disease with no known cure. Today, at 45, he is backing the future through the Michael J. Fox Foundation for Parkinson’s Research, which he founded.

I was diagnosed with a little-known and little-pronounced form of Parkinsonism, called olivopontocerebellar atrophy by the smooth-tongued and OPCA by the rest of us. I was in my 70’s when a neurologist told me I had an incurable disease that was something like being hog-tied, with dysfunctional brain cells tugging at the ropes.

Christopher Reeve was in worse shape, paralyzed by an accident in the moment it takes to inhale a breath of air. But Parkinson’s and similar ailments are not accidental. How they are treated by patients and their families is more important than most medicines, because nobody has any healing pills.

Nobody can be cheerful about a lifetime prospect of loss, maybe a loss of clear sight or the freedom to swallow. Some will know incontinence, trembling, sudden falls or diminished ability to speak. Some will have memorable headaches, pains in the back and neck or unstable blood pressure. Others will be depressed, but skilled with walkers and wheelchairs. Some will know all of those symptoms.

There are books loaded with information about a hundred rare disorders. But not one of those books can offer better counsel than this: Keep going. Some things become more precious as they become harder to get, like an evening at the ballpark with friends or a walk around the block.

Michael J. Fox’s example is the heroic stuff of brilliant footlights. When he shoved stem cell research into the political realm he turned floodlights on the possibilities of medical research. Thousands of other examples are heroic in the dark. Thanks to email and online forums I’m in touch with scores of OPCA people. There’s one who gets around in a wheelchair but has little control over the way her hands work. She’s a teacher looking for a school at ease with her talents. A young mother is enrolled in programs to strengthen closeness to her husband and children. A veterinarian ponders his healing skills with horses and the lack of healing for himself, while sharing what he learns with others and encouraging them to hang on.

Many who are my age caught everything as kids. I remember scarlet fever, measles, mumps, diphtheria, some diseases proclaimed with quarantine signs tacked on the front door. My wife had polio. These deadly diseases have yielded to the same medical science that can focus more attention on Parkinson’s disease, along with OPCA, multiple system atrophy and numerous rare disorders. They may be rare, but they need not be obscure.

A. E. P. Wall, former managing editor of The Honolulu Advertiser, is the author of The Dizzy Disease: When Your World Starts to Spin. He publishes an online newspaper at www.aepwall.com.

The Honolulu Advertiser, is the author of The Dizzy Disease: When Your World Starts to Spin. He publishes an online newspaper at www.aepwall.com.

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