CHAMPs > Parkinson's CHAMP

Team Sperber


I THINK YOU HAVE PARKINSON'S DISEASE.
 
Those were the words from a doctor when I was first diagnosed about three years ago.  I felt like I had been hit over the head. This was not something that I had ever expected to hear.  I knew very little about Parkinson's disease. I asked the doctor “What do I do now?” He referred me to a neurologist and said I should do whatever he says. 
 
The symptoms first started about six years ago. My voice was becoming very raspy and low sounding.  I also seemed different according to my family and friends. During this three-year period I went to at least eight doctors looking for a diagnosis. Each doctor would send me to another, but still no discussion about Parkinson's disease. I went to my general practitioner, two to three ENT's, two pulmonologists, and a gastroenterologist. Each ran tests and when they didn't find anything, they sent me to another doctor. The doctor who finally diagnosed what I had was an ENT. He took a look at me, said stick out your tongue, and in 30 seconds said “I think you have Parkinson's disease.”
 
During the period when no one was able to figure out what was wrong with me, my wife, without telling me, had made an appointment with a neurologist. She and my kids just thought something was not right. Some of my friends had called my wife to say that they felt that something was wrong. With visits to two neurologists, two motion disorder specialists, MRI's, MRA's, and DAT test, they all came to the same conclusion. I had early stages PD. 
 
After getting over the initial shock, my family and I started to figure out what to do next. At that point I was determined to do as much as possible to try to keep the disease from advancing. We also tried to put the situation in proper perspective. This was a bad diagnosis that could be life changing, but not life threatening. There could be a lot worse diagnoses I could have than PD. 
 
At this point we started to put together a plan of action. My attitude is, I have Parkinson's disease, but Parkinson's does not have me. Now three years after my diagnosis, my symptoms have progressed just a little and I still do everything I did before. Golf, skiing, softball, and jogging are still on my list of activities. I just don’t do it as well as I used to. In many ways, I am in better shape than I was before. I go to the gym three times a week, participate in physical therapy, and boxing therapy for Parkinson's disease. I am grateful that I have tremendous support from my wife, my family, and my friends. I'm going to do my best to try to keep this from advancing.
 
This is the second year we have put together a team for the Parkinson's Unity Walk. Last year we had 52 walkers and raised about $12,000 for the cause. This year we will try again to raise money to bring about awareness about PD. Sometimes I get discouraged, and then with the help of my family, I am motivated to continue to move forward in a positive way with my struggle with PD. 
 
I am hoping that by raising awareness and money, a cure will be found. In the meantime, we hope for new therapies that will help improve the quality of life for those of us living with PD.

Larry Sperber
Team Member, Team Sperber