nonprofits,local leaders & Grt.New Haven business sharing information
Parkinson's: Robin Williams and the Irony of Optimism
Father, husband, attorney, Parkinson's advocate, marathoner, triathlete, optimist.
The article linked below is of great information value; we highly recommend it. The tragic side effects of some medications cannot be over stated and should never be ignored. There needs to be more attention paid by the medical community to these potential side effects. Equally important to be addressed publicly is the stigma associated with some diseases. Stigma is one of the most devastating side effects of disease in our society. Illness, medication, side effects and stigma have become a debilitating package being dealt with by many individuals and families.
Money, popularity, fame or celebrity status cannot fix the problems associated with this package. As a society we need an astute, caring and committed medical community. We also need a network of caring, attentive and vigilant people who can interrupt the cycle of psychological and physical pain that so often accompany the disease process.
Lastly, we need good reliable information; people need to know what options they have and what kind of support they have for each option.
(N’Zinga Shani, OneWorld Progressive Institute, Inc., www.oneworldpi.org )
OneWorld Progressive Institute's community education television programs air on Comcast Chan. 26 and on AT&T Uverse (Chan. 99) in Hamden, New Haven & West Haven, Mondays at 8pm. Our programs also air on Comcast Chan. 18 in all Shoreline towns several times weekly. Check the program schedules for Branford, East Haven, No. Branford, North Haven and Wallingford. We also air on Charter Communications, Channel 21, Mondays at 7pm and Fridays at 4pm. Our programs air on Comcast Chan. 10 in all Valley towns Wed at 8pm., and on Comcast Chan. 15 in: Cromwell, East Hampton, Middlefield, Middletown & Portland @ 10pm Fridays. Visit our YouTube Channel at: https://www.youtube.com/user/oneworldpi/videos
"When I was diagnosed with Parkinson's disease at the age of 38, I told almost no one at first. My fear of prejudice or pity from friends and co-workers caused me to keep that secret inside for five years until I told everyone.
For most of the world, the sad news of Robin Williams' suicide followed by the surprising reports that he had been diagnosed with the early stages of Parkinson's disease was a double-barreled shock to our collective conscience. The reaction of my fellow Parkinson's patients to the news has been somewhat more complex. We can't help but be a little grateful that his fame is shining a spotlight on the very real but little discussed aspects of Parkinson's. Yet it brings into focus that the disease is more than just what we publicly acknowledge: tremors, rigidity, trouble walking and a host of other motor skills problems. Robin Williams' tragic suicide highlights the darker and scarier non-motor symptoms from Parkinson's, such as depression and dementia.
And now former Time Warner Chairman Jerry Levin has become yet the latest person to "out" himself as having Parkinson's.
Until now, the most recognized name connected to the disease has been Michael J. Fox. Like Williams, Fox is a lovable celebrity. He has used his tragedy to create a foundation generating over $450 million for research. Everyone knows that Fox has a way of seeing the positive (his aptly-titled books say it best: Lucky Man and Always Looking Up -- The Adventures of an Incurable Optimist) and much of the Parkinson's patient community (including me) has adopted his can-do approach. However, the reality is that Fox's infectious optimism doesn't reach everyone.
Indeed, the irony of Michael J. Fox's outlook is that it creates the false impression that we are all doing well enough. Most of us wear our debilitating and degenerative disease with a smile. It has the unintended effect of softening a sense of urgency and hiding frustration that the scientific community relies on a 40-year-old drug as the gold standard for treatment, that this treatment largely addresses only the motor symptoms and there remains no definitive objective method for diagnosing Parkinson's (like a blood test). (Please click the link to read the complete article.)