Last year I was proud to announce that our National Parkinson Foundation of Western New York inaugural Moving Day Walk was a huge success. The major reason for holding an annual Moving Day was to get the word out that our Western New York support groups exist and are available to help patients deal with the daily issues of Parkinson’s Disease (PD).
Who knows this road better than someone who has already traveled the path?
The secret to beating PD is not only in the research laboratories, clinics or doctor’s offices, it is Parkies helping Parkies. Those newly diagnosed can help those further ahead physically, while those further ahead can provide critical advice to those new to PD.
This year, my tactics for dealing with PD included a change from chemical to electronic. I allowed my body to become host to a pair of electronic noise makers, or neurostimulators. The DBS (Deep Brain Stimulation) system, when tuned to counter the errant signals caused by PD in the sub thalamic (STN) portion of my brain, allows me to regain control over the erratic motion of my limbs, while reducing my dependence on PD medications by half.
The first of two surgeries required me to be awake to better assist the surgeon precisely place the DBS electrodes in each side of my brain. The second surgery, conducted under anesthesia, placed the stimulators and batteries on each side of my chest, under my collar bone, and connected the leads to the electrodes in my brain.
What helped me decide to go through with this DBS procedure were numerous discussions with people from the support group who had been there. You can read up all you want, but there is no substitute for someone who has been there. That shared experience is invaluable. The ability to pass on the fears, the courage, and the triumph is something no book can give you. Not your spouse, your doctor or the surgeon.
To keep these support groups viable requires facilities, volunteers and coordinators, experts, professionals, and administrators.
A donation of $20, $50 or $100 will go a long way towards reaching our financial goals.
Do you know someone with Parkinson’s? Tell them about us. There is no reason why someone should have to face this disease alone.
For more information on our support groups and exercise groups, call National Parkinson Foundation, WNY Chapter at 716-218-1027 or visit our website at www.npfwny.org
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