Wednesday, October 15, 2014

Michael J. Fox Foundation for Parkinson comes to Washington, D.C.

Michael J. Fox Foundation for Parkinson comes to Washington, D.C.
 By Connie Lawn, October 12. 2014


 A very important and meaningful event was held Sunday at the Washington Hilton. Over 700 people came to the hotel to attend an all day event sponsored by the Michael J. Fox Foundation.  It was called "Partners in Parkinson's – Discover the Benefits of Team."
It was extremely beneficial for those of us who suffer from this life-altering disease. We come from all walks of life and are struggling to walk, talk, swallow, drive, write, dress ourselves, go to the bathroom, and hang onto life. Many of the participants Sunday were well educated and had, or have, important jobs. The lucky ones (like me) can still work and have the support of family members. Without the support of my wonderful husband, Dr. Charles Sneidermanand my sons, I would not be alive now.
The forum gave us all a chance to meet members of the Parkinson community and realize many have similar experiences.  The strong medications can cause hallucinations, nausea, dizziness, or other reactions. Some patients have had success with deep brain stimulation or other procedures. Doctors and scientists are constantly trying to develop new medications, and many of us would be pleased to participate in clinical trials.
The Foundation is located in New York, but is active all over. This was their first major workshop in Washington DC.  There is also the Parkinson Foundation of the National Capital Area, which is extremely important and active.  They were one of the many organizations which had representations at the Hilton.
The Forum was a pioneering effort to build a partnership which includes patients, families, healthcare team members, and researchers. There were sessions on how to find and work with a Parkinson disease specialist, the latest in scientific research regarding the spectrum of disease named after the neurologist who first described "the shaking palsy" a century ago, and tips on lifestyle modification including exercises, social networking, and home and work adaptations.  
Famous people, such as Michael J. Fox, Linda Ronstadt, and others, help to publicize the disease and raise millions for research. We are still reeling over the suicide of Robin Williams, who was reported to have early stage Parkinson when he died. But we try to maintain hope that advances will be made. This is just one of many diseases which has no cure, at this time. For now, we keep moving, exercising , dancing, popping pills, and do our best to manage this beast!
Connie Lawn in Washington D.C.


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