Hi: First, thanks to Robert Berson for bringing to our attention a dance program, Dance For Parkinson’s Disease, which is providing free weekly classes from March 13th to May 15th in the Ossining Library (not the library in Sing Sing – repeating – do not go to the library in Sing Sing; we don’t have enough money to bail you out). This program is intended for “people affected by PD and their caregivers.” The contact number is 914-941-2416.
Second and foremost, is the following blog on advanced Parkinson’s Disease which has been generously provided by Bruce Ballard, a board member of PPP and the writer for his own blog, Parking Suns – A Life With Parkinson’s Disease. This article has also been published by the World Parkinson’s Disease Congress (www.worldpdcongress.org).
Bruce Ballard: Advanced Parkinson’s Disease
I’m sitting on a fence right now. On one side of the fence is the classification “advanced Parkinson’s disease,” according to the website Parkinson’s Community. Every day in my Facebook feed I see a message from Parkinson’s Community, listing the following criteria, which they equate with advanced PD:
-Take 4 or more doses of Levodopa/Carbidopa (Sinemet/Rytary)
-But still experience OFF time (can tell when medications are not working)
-And taking OR have taken other PD medications (Azilect, Rasagiline, Selegiline, Pramipexole, Mirapex, Ropinirole, Requip, Rotigotine, Neupro)
-Diagnosed with PD 5 or more years ago
That describes me to a T, and the classification scares me skinny.
On the other side of the fence is my life as a Parkie up until now. (I was diagnosed in 2012.) For me, Parkinson’s was mostly an occasional hassle. I worked at my job, I worked out at the gym and town pool, and in summers I swam competitively in open-water races in the ocean and the Hudson River (e.g., click!). I rarely experienced off times; I never froze; I never shuffled with festinating gait; and I never had problems rolling over in bed or getting dressed in the morning.
However, I’m on this fence and working harder than ever to either stay on it or land back on the good side, the side where I used to be. Here are two things that seem to be helping.
1. Spin Bike
The website Brain&Life published an article promoting workout sessions on a spin bike. The opening paragraph includes this sentence: “In addition to improvements in strength, flexibility, cardiovascular fitness, and mood, cycling at a cadence of 80 repetitions per minute (rpm)—the cadence commonly used by competitive cyclists—can help mitigate the tremors, rigidity, and slowness of movement prevalent in people with Parkinson’s disease and possibly other neurologic disorders, according to ongoing research.”
The article includes more of the same information, and I took it to heart, pushing myself even harder than the report suggests. I now do hour-long sessions on one of my gym’s spin bikes, keeping the cadence at 100 rpm. I use the stopwatch on my iPhone to make sure I’m not slowing down, and I listen with earphones to dance music that harks back to my former life as a disco bunny. (Click here for the first song on my playlist.)
Here’s a short video showing me in action (see parkingsun.com for video). It’s just 14 seconds, but I pedal almost 30 revolutions, which is faster than 100 rpm: This is an enjoyable workout, and as long as I do this two or three times a week, I’m living on the good side of the fence.
2. Ping Pong
Twenty minutes from my house, in the town of Pleasantville, NY, there’s a massive table tennis club that hosts a Parkinson’s night every Wednesday. Ping Pong Parkinson is a mix of Parkies and non-Parkie volunteers. The group was started by a musician named Nenad Bach; he lost his ability to play musical instruments after he got PD, but found (to his and his doctor’s surprise) that his symptoms lessened if he played ping pong three times a week, which allowed him to perform again on the piano and guitar.
I attend the Wednesday night sessions when I can, and I also take a private lesson for an hour each week from a professional ping pong champion.
There’s not much research into how ping pong can help Parkies; it’s mostly anecdotal evidence. But I can report that the following happens with me:
First, I have to split my attention between what’s going on with the ball and what’s going on with my body, and this feels strange and new. For example, when I’m in my private lesson and I’m standing in the middle of my side of the table, the instructor may hit the ball to the left of me. I want to move left to intercept it, so I pick up my left foot and move it over. “No,” my instructor says. “When you move to the left, lift your right foot first.” This is mind-boggling; it’s so counter-intuitive. Thus I have to pay attention simultaneously to the ball sailing across the table, which I can see, and my right foot, which is out of sight. Is this an example of creating new neural pathways? I don’t know, but everything about ping pong is like that for me.
Second, I have to watch carefully when the ball meets my paddle, and forget entirely about what’s on the other side of the net. I’m inclined to look across the net as I hit the ball, but this inevitably causes the ball to sail off in a wild direction. If I stop concentrating on my opponent’s side of the table and just observe the slant of my paddle as it connects with the ball, I’m much more successful, and my instructor and I can volley back and forth for minutes on end.
Last week Ping Pong Parkinson celebrated its 100th session by holding a doubles match, which you can watch here. Most of the participants are Parkies, but there are a few non-PD volunteers, and the man with the red megaphone who starts the video is Will Shortz, the puzzle editor for the New York Times as well as the owner of the table tennis facility. (Nenad Bach is the man with the white hair and the black turtle neck. Will Shortz does not have PD.)
Conclusion: I can definitely say the following about my experiences with these two activities:
First, if I do them regularly along with other physical exercises in the gym or pool, I have few-to-no problems with PD symptoms. For example, if I’m late taking one of my Sinemet doses, I don’t suffer through an off time.
Second, both activities are huge mood boosters. I go to my private ping pong lesson on Tuesdays after work. While driving there, I typically feel antsy and stressed out, due to the pressures of my job. I think about cancelling the session and just going home. However, when I finish the lesson, I drive home in a relaxed, happy state, singing to whatever song I’m listening to, glad to be alive.
This is what works for me. Now I just have to work at it. Bruce Ballard