Personal Stories

New Hope

New Hope

Paul Kelley
Tallahassee, FL

It seems odd to be discussing hope, having been diagnosed with Parkinson’s in 1996 at the age of 31.  I was athletic at the time of my diagnosis and enjoying 9 months of marital bliss with my wife, Mary Ann.  How could this be happening to me at such an early age when I should be enjoying life with my spouse?   When my family physician hit me with the news, the future appeared bleak.   When I went home and told my wife, she just looked at me and said we will deal with it and take it day by day.  We decided that we would not let Parkinson’s control our lives.  So, in June 1998, we gave birth to our son, Corey. 

As time went by, the symptoms predictably got worse.  It was hard not to do typical father/son activities because of this disease.   So often my son would tell me to take a pill so that I could walk.  We often called the Sinemet, “miracle pills”, as they gave me the short sensation of not having Parkinson’s.  Although our family was happy, we felt something was still missing in our lives and as we determined early on, Parkinson’s will not control our lives.  My wife and I decided to have another child and we welcomed Connor (CJ) to our family in October 2002.  Caring for him proved much more difficult for me now, so Mary Ann had to the majority of the work around the house.  I was now on a daily allotment of medications, including the PD staple of Sinemet, and was able to continue working.  However, the stress of work and the disease was wearing on me.  One day I found myself imprisoned in the men’s room at work due to my freezing and was not able to dress myself.  I had to call my wife to rescue me from this predicament.  I told her that one more of these incidents would cause me to apply for disability.  It was not long after this predicament that I would finally let Parkinson’s control one portion of my life.

I left work for good in October 2008, not knowing where my life was headed with this disease.  As a last resort, we decided to see if I was a candidate for Deep Brain Stimulation.  I met with a neurologist at Shand’s Hospital in December, who then scheduled me for a battery of tests in March 2009.  After speaking with the doctors, I was told that I would be a perfect candidate, giving our family hope for the first time in 10 years.   I was placed in a study group for St. Jude and was designated as a “fast track” participant, meaning I would have both the left and right side of the surgery completed by schools end in May 2009.  This was perfect as we had planned to take our kids to Disney the first week in June. 

It was a scary surgery knowing that I would have 2 holes bored into my head, but my surgeon put me at ease.   He allowed me to choose the music we listened to during the procedure, calming my nerves to a degree.  The doctor then found the perfect place for my wires and I was set to have the system activated in a few weeks.  I did not realize how difficult this portion of the procedure would be.  I think I assumed that all that was left to do was turn on the device.  I did not take into consideration that my brain had to adjust to these changes and a perfect setting would take time to be found.  I, however, was able to sustain a week in Disney, needing to use a wheelchair only once.  After several visits to the nurse for programming, I am now able to participate in family activities I thought previously were impossible.  To celebrate our new lease on life, we are planning a ski trip to Lake Tahoe in December.

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