7 05 2008

A Brooklyn mom’s crusade to cure diseases

May 6, 2008

Denis Hamill

New York Daily News – Brooklyn

http://www.nydailynews.com/ny_local/brooklyn/2008/05/06/2008-05-06_a_brooklyn_moms_crusade_to_cure_diseases.html

Whenever Mother’s Day rolls around, I think of Parkinson’s disease.

And my heart aches.

My mother died of Parkinson’s in Brooklyn 10 years ago. I wish she would have died 10 years sooner. Because that final decade of her life, with that insidious disease, was like an agonizing living wake.

When she finally died at 87, in lieu of flowers, we asked people who cared for the tough old Irish immigrant who nicknamed herself “Shaky Annie,” to contribute to a Parkinson’s charity.

In the years since, I’ve always kept up on this incurable disease that reduced the woman who gave me life to a pile of trembles. I think often of Muhammad Ali, a king dethroned by a revolt in his central nervous system, or Michael J. Fox, as brave at 5-foot-zip as Ali, fighting every day for a cure, and the last Pope, who proved that this disease spares no one.

I always wonder what’s being done to find a cure for Parkinson’s.

Then I learned that, right here in New York, a lady named Bonnie Strauss, who lost her mother and grandmother to Parkinson’s, had founded the Bachmann-Strauss Dystonia & Parkinson Foundation, which raises money to find a link, new treatments and cures for both of these disabling maladies.

As Mother’s Day approached, I tracked Strauss down to her foundation in Manhattan.

“After the birth of my second daughter 29 years ago, I knew there was something wrong with my neck,” Strauss says. “I had an epidural and after she was born, my head was tilted way over to the side. The doctor told me there was nothing physically wrong with me. He recommended a psychiatrist. I told him it had nothing to do with my head, but my neck.”

Over five years, Strauss saw other doctors who were also baffled. She thought about her mother and grandmother dying of Parkinson’s and feared she had inherited a bad gene. Then, one day, Strauss was hiking up a mountain at a California spa with a woman who had two sisters suffering from dystonia. “She told me I should check to see if I had dystonia,” Strauss says. “She gave me the name of a Dr. Mitchell Brin, then at the movement disorder program at Mount Sinai, who specialized in dystonia.”

Strauss went to see Dr. Brin. And after almost six years of suffering, Strauss was diagnosed with dystonia.

“I learned that dystonia is not a country,” Strauss says. “It is a neurological disorder that causes uncontrollable, painful spasms in one or many parts of the body. It can lay dormant in the body and be triggered by drugs or trauma. In my case, it could have come from the trauma of childbirth, or from the epidural, or a combination of both.”

My mother’s Parkinson’s was triggered by the trauma of a violent mugging in her early 70s. Afterward, she never stopped shaking.

The diagnosis made dystonia and Parkinson’s sound like evil kissing cousins to Strauss.

A highly successful businesswoman, Strauss made her own disorder and the one that killed her mother and grandmother her life’s work in 1995. She started a foundation that raised money for research into the treatment and cure of Parkinson’s and dystonia, and which also tries to confirm her suspected link.

“Our biggest goal is to make people aware of dystonia and to help people learn if they have it,” she says. “Our Web site can help direct them to the right doctors. Also, there is far too little research in this area. So, our foundation often provides seed money to help explore the most promising hypotheses. This often leads to larger grants and helps leverage new ideas and advances in the fields. So far, we’ve allocated about $8 million to 146 grants around the world. These grants bring us closer to the causes and, we hope, the cure for dystonia and Parkinson’s.”

To raise money, her foundation gets lots of corporate and private donations. They also run an annual golf tournament – this year on June 16 – and they also enter runners in the New York City Marathon. “We’re very excited that Christian Hoff, Tony award-winning actor of ‘The Jersey Boys,’ has signed on as our national spokesman,” Strauss says.

I can’t encourage strongly enough those people who suffer from one of these maladies, or who know people also suffering, to visit www.dystonia-parkinsons.org.

Talk about a mother’s work never being done.

Here’s a lady who developed dystonia after mothering a daughter, now dedicating her life to unraveling the mystery of her own disorder and the killer disease that took her mother and her mother’s mother from her.

Makes me feel better on Mother’s Day that there are better people than me out there doing something about the disease that killed my mother.

dhamill@nydailynews.com

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8 05 2008
sub3runner.com » “New York City Marathon”

[…] A Brooklyn mom=92s crusade to cure diseases May 6, 2008 Denis Hamill By ganolen They also run an annual golf tournament – this year on June 16 – and they al= so enter runners in the . =93We=92re very excit= ed that Christian Hoff, Tony award-winning actor of =91The Jersey Boys,=92 h= as signed on as our Glenn Allen Nolen's Disability Weblog – https://ganolen.wordpress.com […]

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