It's Not Over Til It's Over

I thought I lived a charmed existence. Except I developed Parkinson's Disease at 36 years old. There is no charm in that. In fact it is one of the least charming diseases. It is relentlessly and progressively deteriorating. There is no known cure yet we are close. How close? . I was number one subject in the experimental Fetal Cell Implant Program located in Tampa, Fla. Although I don't know for sure, I believe I was part of the placebo group. For I did not get better but I also did not get worse. Close does not mean you should hold your breath.

Three years later I went through the bilateral DBS STN procedure. Fortunately it worked and it has helped me be free of many of my more debilitating symptoms. Before the operation I suffered from intense rigidity in most of my body when "off" and intense dyskinesia during the "on". After the DBS operation I had little rigidity and incredibly little dyskensia. But now that the rigidity was not present, I began to tremor for the first time. I also smile more now!!!

DBS is not the perfect choice for all people. It can be a difficult operation and does not work perfectly for all people. As is typical with the disease each person reacts differently to the operation and the subsequent adjustments. I must have gone back 30 times for regulations before the right setting was found. For me the operation has been very beneficial but it took a long time to find the best settings. I still take a significant amount of medication but less than before the operation.

The doctors and nurses believe I am still a WORK IN PROGRESS. In other words, there is more to be done. The nurse and I work together (I volunteer), in the doctor's office, to comfort and educate new and prospective DBS patients. I was and am a certified social worker, no longer working (I bumped into too many walls and people). This is right up my alley … talking and listening.

But as fate has it, the disease, stimulators and/or medication began to affect my speech. My speech was rendered unintelligible once the Sinemet kicked in. And when I am off my walking is affected negatively. So as the situation now stands "I can not talk and walk at the same time."

This is not the end of the story. The battery ran out on my stimulators after 2 and 1/2 years of use (if the stimulators are set to greater than 3.6 volts, they use twice the energy, hence the life of the battery) and after the replacement the doctors began the device at lower settings. This has worked out fairly well. The tremor in my right hand is more persistent but I can talk more clearly. I have added Permax, lowered my Sinemet intake and my speech has at times returned to almost normal. T

his disease has interfered with my positive self-image. My volunteering with other patients has helped me recover some love for myself. I still have hope for the future. I try to communicate that to all patients. Good luck to all. Contact me via e-mail if you have questions at rikkra@hotmail.com.