I was diagnosed with PD in September 2004 by Chadwick Christine, the chief Parkinson’s researcher at UCSF. He spent almost two hours with me, and is a wonderful human being–that made a huge difference to me in the way I was able to handle the news. He prescribed Lexapro for me, and gave me a very large sample package of Mirapex. I took only the first medication; it turned me into a psychotic, but I had to wean myself from it gradually. A hellish time. I found a first-rate neurologist at Virginia Mason in Seattle, John Roberts. He has been marvelous for me–meticulous, conservative with meds, deeply attentive.
I have tremor-dominant PD–lucky me; I don’t have hallucinations, freezing, rigidity (except in my neck–ouch!) , and my tremor is hardly noticeable except when I’m agitated about something (but it’s in my non-dominant hand). I do have what I call Head Symptoms–horrendous anxiety (about NOTHING), near-panic, an acute sense of dread, etc. These episodes occur at irregular intervals–I could have as many as six a day in the past, often accompanied by tachycardia which scared me to death.My cardiologist put me on a beta-blocker (metaprolol) and this eliminated the tachycardia, but not the acute angst. For that I take a Xanax when needed (usually no more than 2-3 a week). But I have a feeling of intense pressure inside my head WITHOUT PAIN; just a feeling that my skull is too small for my brain. It is an awful feeling, and accompanied by some disorientation.
I have noticed definite cognitive changes over the past year especially. It is very difficult for me to take in new informatioon, especially of a technical nature. Any kind of instruction manual is like Greek to me. I easily get confused. My neurologist laughs when I say I’m probably experiencing the onset of PD dementia, but…
What I do for my PD: SWIM! Quilt (I design and hand-quilt art quilts. I think they are very good–but their main value is that they are my bliss, and I have NO tremor when working on them–or on my collages, of which I also do many, with great pleasure. I do not believe in the American model of “fighting” a disease. I’m just trying to learn from it. So far I have learned a lot about myself–most of which is unwelcome news (e.g. I am very impatient, irascible, have an exaggerated sense of entitlement, etc.) I never ask WHY ME? with respect to PD: I feel blessed that I DON’T have ALS, MS, or any one of a number of other neurological conditions.
I exercise like crazy: an hour of yoga and Pilates six days a week, gym 3X weekly, swimming ditto, as much walking as I can manage with a bum right knee. I believe exercise is KEY for me! For meds, I take one 25/100 carbolevodopa 3X daily along with a 1 mg. Mirapex tablet. I also take 1200 mg. of Coenzyme Q-10 daily. I drink in moderation–understand the risks for breast cancer, but it really helps with PD tension. I’ll be seeing Dr. Chad Christine next week for an annual checkup. His special field of interest is the NON-motor symptoms of PD–the things that most bedevil ME.