bill-n
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I was diagnosed with PD in August of 2019 at the age of 55. This January I got Covid and 3 weeks later I was diagnosed with optic neuritis which led to a diagnosis of MOG, an autoimmune demyelinating disease similar to MS. I was pissed off initially thinking how could I get two ‘incurable’ neurological diseases in under 2 years! Prior to PD I was perfectly healthy with no need for any medications. Then I moved on and got into fight mode…. exercising 7 days a week, switching to a vegetarian diet, etc. No one has a clue that I have PD or MOG. Fortunately my vision is still excellent for my age. Other than consuming a hand full of pills daily, I lead a fairly normal life. Exercise is so key.
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Fatigue has been a challenge for me but so far I have been very consistent with exercise and three times a week I usually do strength training/movement class for an hour followed up with 5000m of rowing. After doing this I would say I feel no better than before I started. Prior to PD I had been doing the same strength/movement class and always felt better afterwards. I also do a one on one strength training once per week but will probably stop that soon.
I’ve never been much of a cardio guy but my Dr said that cardio is thought to slow the progression of PD. That’s why I added the rowing to what I had been doing all along. For the same reasons, last year I started spinning at CycleBar. It was very challenging at first but I noticed that following my spin, for about 2 hr afterward I would feel fantastic. The feeling is like that of being a teenager all over again. I’m sure it’s partly the serotonin and other endorphins but I can’t describe what an amazing feeling it is and it also seems to blow out the PD cloudiness too. I have tried 45, 60, and 75 minutes classes and surprisingly I like the longest 75 minutes the best. Compared to any other type of exercise, I have very little to no pain immediately after and days after. Fatigue is not that bad considering the amount of expertise. I really enjoy getting off the bike being completely soaked in sweat with a puddle under the bike. It gives me a sense of accomplishment and something to celebrate and be proud of.
My wife found a clinical trial that evaluates the neuroprotective effects of cycling and I signed up for that. We meet with the people at Cleveland Clinic next month to get started on the one year trial. I may have to switch my regimen to whatever they recommend if I am selected but if I’m in the control group, I’ll keep going to CycleBar.
I tell people what I’m doing sometimes and usually they are shocked. I’m fortunate that I can commit the time it takes to do all of it. I feel like 1/3 of my day is committed to exercising. I don’t know how long I can keep doing this but I can see the spinning as something I can do for a long time.
I have found like some others have mentioned that if I sit too much, I start feeling crappy. Usually it just takes getting up and walking around a little to feel better. The change is very quick. I’ve also noticed that my C/L seems more effective on the days I’m moving more. I don’t usually feel like getting moving but I always feel better afterward.