Parkinson’s and Science: A Year Later
What have I learned?
Posted September 12, 2020 | Reviewed by Gary Drevitch
August 22, 2020 marked a year since my Parkinson’s diagnosis. It also marked the end of my teaching career as I had taught my last class before full retirement. Luckily, I had had five years to develop my routine at home as I was only teaching in the Spring and not the Fall, so I had a lot of practice doing whatever one does in retirement. For me, that meant reading novels and working on some research data that I had collected over the past 3-4 years. For the first six months I read novels and walked the dog and from March 17 to today, sheltered in my home, only leaving to walk the dog. Now home all the time, I have had more time to focus on my symptoms more closely.
It has most certainly been an interesting ride both from a personal point of view and a scientific one. On the personal front, I was still having tremors in my left hand a few months after my PD doctor (who is amazing and available always through email) doubled my original medication, so she raised my Sinemet (Carbidopa and Levodopa combination) dosage and I am now taking a dosage that is a tad less than half the maximum recommended dosage. This new combination kicked my tremors out completely. I used to be able to show friends a symptom of PD where I would first touch their finger with my right index finger as they moved their finger from location to location. Then when I tried it with the left index finger it would shake like crazy as it tried to zero in on the person’s finger. That is gone. In fact, I rarely have tremors at all unless I try to carry something in my left hand. My right hand does shake a little at times, but I suspect that will be quashed by the new medication regime. My left arm still doesn’t swing but no falls and rare stumbling which is great news.
Unfortunately, Sinemet doesn’t help with the other symptoms that I had been having so they are still there. The worst is my memory. Now, one might argue that memory issues crop up in older people and having turned 70 I am definitely in that class. HOWEVER, I have noticed that I have more memory gaps now than before PD. I often can’t find words even though I can visualize them and can even identify the first letter. Even when I know something, it takes forever for me to find it in my memory and sometimes that means days. For example, I always have a book with Thursday, Friday, and Saturday New York Times Crosswords (the most difficult ones of the week) out on a table next to the couch where I hang while dinner is cooking and doesn’t need my supervision. For example, one clue was something like “activity before a big game.” I knew that answer (TAILGATE PARTY) in my head but couldn’t find the right words until a day or two later. This seems to happen more and more often, and I am not yet ready to attribute this to normal aging. It worries me and yet all I can do is wait and see. Actually, there are other solutions. In response to my post last year (A Scientist Grapples With Parkinson’s Disease) I have received more than a dozen “comments” all touting miracle cures if I just purchase some very expensive over-the-counter pills. Some told me to get Dr. Moon’s special formula or to visit the Organic Herbal Clinic or Best Health Herbal Centre or many others. Sometimes the same exact comment is sent from several different people, which, of course, led me to identify them as spam and remove them. One product, cocoa flavonoids, does intrigue me as it has a strong research base on its effects on memory although I waver on buying some. Time to re-read the research and maybe give it a try (my PD doc read some of the literature and told me that it is unlikely to be harmful unless taken in mega dosages but the evidence of its efficacy in enhancing memory is not convincing to her).
All of this concentration on my memory and cognitive processes has resulted in bouts of sadness and depression. Luckily my PD doc has been able to keep on top of this with medication, but I still get sad at least once a day about my impending memory problems.
Other symptoms still remain, the most annoying of which is my touch typing. My left hand simply can’t hit the correct keys at all. I typed the word “left” in the last sentence four times before I got it right. I may be forced into using voice typing. But I am stubborn and keep trying to type and control my left hand. I have slowed way down and still make mistakes, but practice will either make perfect or move me to voice typing. My sense of smell is still mostly gone, my handwriting is still tiny and mostly unreadable. I am noticing that my voice is getting softer and am working to pay attention to that symptom.
That brings me to “attention.” I can’t tell you how many times I taught cognition from a book titled “Memory and Attention” (by one of my grad school faculty members). But I am so dense that it took me constant bugging by my wife and lots of attention to my lack of attention until I realized that staring at the TV made the information not stick anywhere in my brain. When asked what I just watched moments ago my answer was nearly always, “I don’t know.” For now, I am trying to practice attending but I find that my mind wanders away but not to another topic, it just wanders around aimlessly with limited thinking on any specific topic. Another similar symptom is when I am asked to do something like get a cup of coffee for my wife and by the time I am up and getting ready to walk downstairs I often have to ask what it was that she wanted. This is short-term memory and perhaps also a consequence of my lack of attentional abilities.
So, what have I learned in the last year? First, and foremost, support is critical. My wife provides my first level of support as do my kids and my best friend. Second, four of us with Parkinson’s who met in a PD boxing class formed a weekly zoom group when COVID closed the boxing class. The support that we are able to give each other has been instrumental in keeping me from sliding into depression and I learn something new each week from the others. We are all different in our symptoms, in our medications and in our choice of fighting PD. Finally, I simply pay attention more to what is happening in my body and my brain. I will keep using all the support that I can get and intently watching for changes in my body and my brain. Most of all, I now read research on Parkinson’s which I had mostly ignored. Will there be a cure in my lifetime? I doubt it. But there are so many scientists working on cures that perhaps someone will hit on one.