15 Years and STILL KICKING!!

In 2002, my “not-so-good” handwriting became even worse! I mentioned this to my Primary Care Doctor (PCD). He sent me to a neurologist. During my visit the neurologist asked why I was there. I explained my handwriting was getting so poor that I could no longer take handwritten notes. (My job depended upon my taking handwritten notes talking to clients, then transcribing them into a government regulated program.) This doctor asked me no other questions, and his only examination consisted of giving me a piece of paper and pen telling me to continue to write this sentence until he told me to stop! His conclusion was I had writer’s cramp! I was told not much could be done. I could use typing into a lap top, or learn to write with my left hand, learn to write with a “specially designed” pen…. Basically, there was not much he could do. I went to the internet and did my own research!

I knew what was happening

Two years later, I noticed a resting tremor. I knew what was happening. Parkinsons was becoming part of my future. I also have relatives in the medical field. While at a family function, cousin who was a geriatric physician was very concerned about my motion - my mobility. So once again I requested a referral from my PCD. Telling him that I refused to go back to the first neurologist.

Off I went to the second referral. This neurologist asked me numerous questions, did an extensive exam, combined with a physical medical exam as well as a motion exam. Upon completion of the verbal and physical exams, the doctor came up with his diagnosis. It was Parkinson’s Disease. This had been my cousin’s diagnosis, and I also had come to that conclusion upon researching the disease. He did explain that there was no clinical trial or test for Parkinsons. He would have to eliminate other potential conditions, diseases. He started immediately, sending me for blood work. They drew twenty-one vials of blood. Then the neurologist arranged for an EKG and Echo-cardiogram. Finally, I was scheduled for tests on my brain, including brain waves, and even schizophrenia testing. The doctor started me on Mirapex, Selegiline, and Comt-inhibitor.

The results of the testing concluded the elimination of all the of all the conditions, illnesses, diseases I was tested for, leaving Parkinsons….

Going on 15 years, I have made it my passion, my quest to learn all I can about Parkinsons. I have bought and read numerous books on PD, both technical, soft-technical, psychological, and entertaining! I have developed a five-point philosophy which I try to share with other Parkies:

1. Surround myself with positive people
2. Never look back, yesterday is gone, today is here for the living, tomorrow, “Please God, give me the chance to wake up on the right-side of the divot
3. I do not dwell on what I cannot do, because there is SO MUCH which I can do
4. Never miss a party if I can help it
5. (most important!) Dance like no one is watching

I do not inhabit the dark side of Parkinsons. Life is too short, and I have too much ground to cover - even if it is with a cane or walker. My meds, go “Off” making me feel physically awful. I wait as patiently as possible for the Carbidopa-Levodopa to kick back in. I fall, get back up, dust myself off and continue, thanking God I did not break a bone. Yes, I get, what I call, “Parkinsons personality.” It is not unlike “diabetic personality.” I become a bit unpredictable. Get mad at the dogs, scream at an inanimate object for no reason, or just sit in my recliner, with no expression on my face. Some days I just don’t do my chores, then others I work like a woman possessed!! I volunteer for as many trials at universities, hospitals, or private companies as I can. I volunteer or apply to be an ambassador for social media like PatientsLikeMe.com, or for Davis Phinney Foundation. Sometimes they accept me sometimes they don’t. My main objective is to grow old with my husband, my mate.