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Parkinson’s Deep Brain Stimulation and Me

Parkinson’s disease

I was diagnosed with Parkinson’s disease in `1999.  I was 49. It came as no surprise to me.  For the prior ten years I had watched a good friend deal with PD from the time of his diagnosis to a point where he had become severely debilitated.

I had developed all the classic symptoms; tremor, stiffness, a shuffling gait, a soft breathy voice, small sloppy handwriting and fatigue.  I knew I had PD though my primary care doctor told me I had stage fright and the first Neurologist I saw insisted I had a pinched nerve that affected my left arm.  I was finally properly diagnosed at the Mayo Clinic in Jacksonville by an experienced movement disorder specialist.

At that time I was told that I could chose to remain un-medicated for as long as I could tolerate the symptoms, take a moderately effective drug that would calm some of my symptoms with no long term side effects, or, I could take Sinemet, which contained the chemical my brain was no longer producing in sufficient quantity known as dopamine.  He told me Sinemet was the “gold standard” which would significantly reduce my symptoms for several years without side effects. I would likely develop a condition called dyskenisia, an uncontrolled flailing of my arms and legs in seven to ten years.  He assured me that at that point I could have a Deep Brain Stimulator implanted in my brain that could stop the dyskenisia.  I had a decision to make.  Did I want to feel a little better for the next several years or much better with the caveat that I would probably need a DBS implant if I developed intolerable dyskenisia.  My friend had faced the same choices and chose the third option.   He had taken large doses of Sinemet, developed dyskinesia and had DBS surgery and was doing quite well.  I chose the same path and the progression of events went exactly as described and observed.  After ten years on Sinemet I began to have dyskenisia.  It was quite tolerable for four or five years but finally became a constant and embarrassing nuisance.  I made an appointment at Shands movement disorder clinic at the University of Florida.  After several days of testing by many different specialists I was deemed an excellent candidate for DBS.  In July of 2014 I had a probe implanted in my brain by Dr. Kelly Foote and the electronic stimulus properly adjusted by Dr.  Michael Okun.  They have performed this surgery over 1000 times and everything went flawlessly. Though awake for the entire three hour procedure it was painless and we returned to Tallahassee the next day.  Four weeks later I returned to Gainesville to have the necessary battery implanted in my chest.  It is connected subcutaneously by a thin wire to the probe.  I was “turned on” and Walla my dyskenisia was gone.  Other symptoms were also reduced and I was able to reduce my drug load dramatically..

In retrospect I think I made the best decision for me.  PD progresses differently for each person afflicted and the age of onset will affect the decision as well.  If interested I would heartily endorse the team at Shands.  My treatment was as advertized, thorough and I felt respected by everyone on the team.   These Gators rock.

If you or an aging loved one are considering home care in Tallahassee Florida, please call the caring staff at Hopewell In-Home Senior Care today: (FL) 850-386-5552, (GA) 229-236-5552.  Providing Senior Care Services in North Florida & South Georgia


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