I went to see my Mother’s Parkinson’s specialist on November 5, 2009. I received my official Parkinson’s Disease diagnosis at the end of the visit. No surprises there. However, my doctor is a brilliant Parkinson’s specialist, and we had an excellent dialogue about the disease and what I already had put in place to combat the symptoms.
Also, I learned critical information from the physical tests he gave me. As is typical with Parkinson’s sufferers, the left side of the body and right side of the body do not work in conjunction. As an example, while sitting on the examination table, he had me hold my left arm straight out in front of me and he had me tap my right thigh with my right hand. After a short while of tapping, my left arm became very rigid and then it got a mind all of its own — it started shaking and moving about uncontrollably. Same thing happened when reversing the hands, but not as bad.
I learned from this, and other tests, that with only a small percentage of my motor skill nerve impulses working anymore, having the right side of my brain operate the left side of my body and the left side of my brain operate the right side of my body was a formula that spelled disaster. Ultimately, I decided I needed to retrain my brain for conserving neural impulse energy and for streamlining movement — essentially, the right brain moving the right side of my body, and the same with the left side.
At the end of my visit, the doctor wrote me a few prescriptions of mild medications to address what I was facing and the fact that my balance was so poor he expressed a real concern about me taking a bad fall. The medications were for pain, rigidity, balance and depression, and we scheduled for me to return in three months for my follow up visit. I asked him if it would be okay to not fill the prescriptions and to continue down the path I already had undertaken. I asked if not taking the medications would have a negative impact on my long-term recovery if I returned in three months and had gotten worse. He told me I would not be hurting myself, and he asked me to continue documenting what I was doing. He asked that I hang on to the prescriptions just in case I needed to fill them.
I guess one of the advantages of having a progressively degenerative incurable disease whose medications help with the symptoms but do not make you “better” is that you are free to experiment with other avenues of treatment and you will not be negatively impacting the prognosis, which is that you will get worse and never be cured. I have decided to not accept the prognosis…no, I am not in denial…I have Parkinson’s Disease, no doubt about that…but I am fighting it tooth and nail…no doubt about that either.
All my best,
Howard
