My last update was May 16. Not a day has passed that I haven’t thought of catching up, but I’ve been stuck between the fact that things have not really changed, and that the details of the plot have been overwhelmingly complicated. I’m not going to write about every twist and turn that led me to where I am today, we would both of us find that boring. So suffice to say that this quote from Recovering from Parkinson’s comes close to summing things up — “Maybe, when he’s genuinely unable to move, he can use the medications at the lowest, safest doses, and live out his life slightly stoned from the drugs, but safe and somewhat independent.”
Last summer, I fell off the bed. One moment I was aware of being in a precarious position near the edge of the mattress while trying to get up, the next moment I was sitting securely on the bed discovering a rather large lump on my forehead. There was no recollection of falling, nor – quite mysteriously – of getting up off the floor, just that lump and confusion. I phoned Tania, who was scheduled to arrive in about an hour, she called emergency services, and I spent some time in the hospital being tested. Aside from the lump, nothing was wrong. The neurologist gave me Sinemet, and sent me home the next day. I took the drugs for three weeks, noticed no change, and asked my doctor if I could quit. He said yes. The weeks that followed included periods off and on the drugs, more neurologists and tests, and in late October I finally decided to settle for 200 mg a day of Sinemet that a neurologist suggested. He also suggested increasing the dose to 300 mg after six or eight weeks. I tried and felt profoundly worse so cut that in half after a week. And there I remain.
Symptoms continue to come and go. There are days when walking and typing are relatively smooth, and sleeping at night is easy and relatively comfortable, and days less so, but it all seems random. I am still convinced that Dr. Hadlock’s hypotheses are spot on, but even though the drug seems to have little effect, intuitively I want neither to stop nor to request a higher dose.
So, that’s my state of affairs. If something dramatic occurs, I will report it here. Otherwise I have other writing projects to spend my limited hours of typing on.
Thanks for being in touch, it is always good to hear from you!