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He's Not Defined by Parkinson's
- Nov 04 2013
DeWitte Goes Local and Global with Campaign
By Jack Coraggio
From a distance it's vaguely perceptible how much his stiff facial features juxtapose the incessant trembling in his hands. But with each deliberate step closer for Steven DeWitte, the Washington, CT, man diagnosed with Parkinson's disease in 2005, it is clear something is ailing him.
His pronounced symptoms indicate he is overdue for his next dose of medication. DeWitte purposely waited, however, just to offer a before-and-after illustration of his prescription's efficacy.
Before a meal he takes a pill. By the time he is done with his meal the trembling has almost completely abated, and he behaves with more vigor and speaks forthrightly about living with this illness of the central nervous system.
Just like he did earlier this month at the Third World Parkinson Congress in Montreal, where he was invited to serve as a United States ambassador and speak to the international Parkinson's community about the role of patients in research.
"But this was like my coming out on a local level," said DeWitte, 57, referring to the fact he is a more visible presence in the national, and as of this month international, Parkinson's community.
DeWitte has been reticent about making his condition a public matter in Litchfield County because he doesn't want it to be the thrust of every neighborly conversation for him, his wife or his teenage daughter, who last year graduated from Shepaug Valley High School. But as years have passed his condition has become increasingly difficult to conceal, evident by the methodical movement in every step he takes.
Thus, advocacy has become his full-time job.
Like Michael J. Fox, the Canadian actor now more famous for his Parkinson's awareness than for his screen roles as a time traveler or as a young Republican going toe-to-toe with aging hippie parents, the illness is for DeWitte not "who he is, it's what he has."
After two years in a shroud of misdiagnosed mystery, the correct medical conclusion came March 2005. Within months, with the urging of neurologist John Murphy, who is now president of Western Connecticut Health Network, DeWitte started a Southbury support group called Connecticut Advocates for Parkinson's.
"There were eight people at that first meeting," he recalled. "Since that time, we've opened a second chapter (in Glastonbury) and added 80 active members and 160 outreach members."
With the help of fellow chapter leader Michelle Hespeler, it is now a nonprofit institution. To assist boosting the cause, there is friend Rhona Johnson, a recipient of the Parkinson's Disease Foundation's "Caregiver of the Year Award," whom he met in 2006.
For the last three years, DeWitte traveled the country speaking about Parkinson's issues, a campaign that afforded him the role of ambassador at the Montreal convention. There he represented the part of the Parkinson's Disease Foundation's network of research advocates and joined about 3,500 scientists, doctors, people with Parkinson's, care partners and allied health professionals from 44 countries.
In the words of the foundation's president, Robin Anthony Elliott, "Mr. DeWitte's leadership at the World Parkinson Congress and in his community is a driving force in our mission to find better treatments and a cure for Parkinson's as soon as possible."
About the possibility of a cure, DeWitte is a hopeful realist.
He said he isn't necessarily holding out for a cure but is optimistic about medical advancements that will make the illness far more manageable and easily detectable.
In the meantime, the newly diagnosed should be their best advocates.
"A patient needs to understand this disease," said DeWitte. "Do not rely on somebody else to tell them about this disease."
For more information, people may visit www.parkinsonsct.org.
Source Date: Nov 04 2013
Source Publication: Republican-American
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