I have always heard that time flies as you get older and I guess they (whomever they are) were right. It seems like it was just a month or two ago since my 5th Anniversary post last July. Yet here we are 6 years since the start of my journey with Parkinson’s Disease. Many of you have been following along for those 6 years as we became expert at researching PD, learning all we could by attending research conferences, day long seminars, and attending the 4th World Parkinson’s Congress in Portland, OR.
We have seen substantial progress in the past 6 years with researchers diving into the gene pool to look for ways to modify the progression, drug research that has resulted in several new drugs being approved, several clinical studies looking at re-purposing already approved drugs for use in PD, and new clinical trials involving implanting stem cells. And don’t forget the great Sarasota experiment that resulted in our move to Sarasota, Fl and our subsequent love of tennis.
I am pleased to report that there have been no major changes to my symptoms during the past year. I continue to exercise as much as possible playing tennis 3 to 5 days a week and attending the cycling for PD class twice a week. The biggest change has been the emergence of occasional dyskinesia, involuntary movements which are usually a result of the amount of medication needed to keep the symptoms at bay. As I wrote in the last post, I seem to have figured out the right combination of extended release levadopa/carbadopa (Rytary) , pramipexole, and regular release levadopa/carbadopa (Sinment) which reduces my “off” time if I stay on schedule.
If you saw me today playing tennis while the medication was working you would probably say “You don’t have PD.” If you saw me when the medication has worn off, you would notice my limited arm movement, my limited leg movement resulting in short steps, how difficult it is to get out of a chair, and you would probably notice my lack of facial expression (the PD mask). You still might think “He doesn’t have PD” because I don’t have tremor, but I think you would agree my issues are caused by more than being 73 years old. I feel like my progression continues to be slow and I credit exercise for keeping it that way. I know I rarely mention the need for exercise in this blog 😀 but I will make a pitch today, find an exercise you like, and start exercising. You might only go for a minute the first day, 2 minutes the next day and 3 minutes the 3rd day, but you will build up stamina and you will see a difference in your symptoms.
Speaking of exercise, yesterday during our Tuesday cycling class, the management of the YMCA announced that they were closing the Sarasota YMCA’s on September 13, 2019. Talk about a shock, we were flabbergasted! Apparently the rumored financial mis-management finally caught up with the board and the only option was to close the buildings. We are all looking for new alternative locations for our classes and hopefully we will have something by the 13th of September. The high intensity exercise we get cycling has been a mainstay of my exercise program for the last 4 years and I can always tell when I miss a class or two. Hopefully we get this worked out or I might have to take up running again or I guess I could play more tennis😎.
“It does not matter how slowly you go as long as you do not stop.” – Confucius