Hi

I have a rare form of Ataxia which comes with Dyskinesia's that Parkinson's patients often get.

I have been using some passive trainer pedals since last April. At first I couldn't do the full 15 min cycle of pedalling without it making my leg muscles spasms and shake. So I started 5 mins then turn off and built up...now I do 60 mins in one go.

I have had a reduction in involuntary movements at rest and have better control over voluntary movement such as typing, not quite as jerky and not asking as many attempts to hit right key or grab joystick etc.

I've seen definite improvement and was also doing some Pilates floor work during this time. Can do more than when I started and balance is better as involuntary movements aren't throwing me off.

When I first started with Wii games to do balance games standing I used a 6lb balance belt to help keep me steady and weights on arms and legs, now I can do without the balance belt..which is just as well cos also lost 3 stone so it no longer fits me! I can now keep myself steady enough to manage crutches for a short while for transfers including a few steps (if someone with me to walk behind make sure don't wobble over) , before I struggled to keep hold of crutch handles long enough and had to stop using walking aids.

I don't know rpm my pedals go but I was unable to pedal at all at first cos movements were so jerky and un-coordinated and went straight onto full speed of the bike.

Kati

Kati,
Very inspiring.
Also a timely reminder for me to get back on my exercise bike EVERY day to improve my fitness level.
Thanks for posting.

As I [not a neuroscientist but a PWP] read the study, there was not anything shown that would say that the critical factor was the forcing of the pace or the high cadence itself.

As they say in Detroit, your mileage may vary.

I have had Parkinson’s symptoms since 2007 and was diagnosed in 2010 with Parkinson’s disease at stage 2. But in July of 2011 my UPDRS rating was 3 out of 160, an excellent rating. Since diagnosis I have biked daily on a stationary bike for nearly an hour and, except for warm up and cool down (beginning and ending 5 minutes), bike at a cadence of between 90 and 110 RPM (depending on how I feel on the bike). I feel good.

As to cramps, after a frustrating round of unanswered questions about mineral deficiencies with medical doctors, I turned to a dietitian (they are regulated in my state, whereas nutritionists are not). She advised supplements and quantities. In addition to calcium and magnesium supplements I added bananas to my diet to provide potassium. You might also want to read works by Dr. Arnie Baker MD who writes on medical issues pertaining to cyclists.

Using bike shorts I avoid burns from friction.

To avoid boredom I do two things. I read from an android tablet and am enjoying old books. I also listen to jigs, reels, and other fast dance music of my ethnicity--there must be some music that is right for you.
Unexpectedly, I found after doing daily biking for a while that my hands would feel pins and needles. Well, I recalled that carpel tunnel syndrome can be aggravated by vibrating machinery. A stationary bike is a piece of vibrating machinery. A pair of anti-vibration gloves solves the problem!

Overall, after two years since initial diagnosis and taking only selegine and CoQ10 [has all the study data been unlocked?] for PD I am better off than before diagnosis, though still showing symptoms.

The conclusion of the CoQ10 study was that it is not neuroprotective. This or next week it should be published whether isradipine is neuroprotective (clinical phase II though). I myself believe more in Inosine but results from that one will appear next year.

What news are you talking about ?

FDA Panel Unanimously Votes Down Parkinson's Drug Azilect
http://www.huffingtonpost.com/.../az..._1016612...Oct 17, 2011 – WASHINGTON -- A federal health panel unanimously voted Monday that a drug for Parkinson's disease from Teva Pharmaceuticals has not, etc. etc.

The short form, as I understand it, is that Azilect has not been shown to slow the progression of PD although it is approved for some specific symptoms of PD. I was taking it to slow the progression as my symptoms are pretty well under control from the cycling. I went off Azilect cold turkey and it took several months before it was out of my system. My doctor did not recommend it in the first place; it was my choice to try it. I feel better with fewer drugs.

I have been participating in another unintended experiment. On May 5 we flew to Nepal to trek to Annapurna Base Camp, a truly remarkable experience that moved me tremendously. We were gone three weeks, then home for three days and off for another week, now home. Unfortunately, I developed a herniated disc and several cysts at the disc site which were incredibly painful (bursts of level 9 pain for 10-15 min after each time I sat down to rest or eat). I obviously couldn't bike while on the trek and the spine doctor would not let me sit down for the first week I was home. The upshot was that I didn't cycle for seven weeks and have just been given permission to cycle 20 min/day, increasing as I feel better and better. I could feel my PD symptoms returning, much more tremor, huge anxiety, shuffling, balance, etc. I have cycled for three days now, maximum of 20 minutes and already I feel like I'm moving in the right direction. I hadn't realized just HOW dependent I am on the cycling.

You have to make a distinction between "not proven to be neuroprotective" and "not being neuroprotective". I read about this before and as far as I could understand the FDA said that the results from Teva were promising but not conclusive. So it could still be that Azilect is neuroprotective but the results are not yet good enough to claim that Azilect is indeed neuroprotective. Teva is continuing the study and will come with more results next year.

Two weeks have passed since my last post. I've been increasing my bike time until I am now on the road up to two hours at a time. I'm still weary, but my balance, tremor and shuffling have improved tremendously. Three weeks ago I could not entertain the thought of riding across Iowa in RAGBRAI. 450 miles in a week sounded absurd. I'll still play it day by day, but at this point I'm going to at least try. My back feels fine nearly all of the time. If any of you are interested in knowing about the ride, go to the pedalingforparkinsons.org website. There is a lot of information on the site and there will be daily postings as we sweat across the state. All funds raised will be used help start and sustain Pedaling for Parkinson's at the Y programs around the country.

The NIH stopped the study early, but since I had seen earlier results I was reluctant to conclude that.budget issues were not a factor in the NIH decision.

I've had some unintended experiments over the last couple of months. Injuries and travel forced me to take a 7 week hiatus from cycling. Then I rode part of the way across Iowa in unreal heat, which made me less stable rather than healthier. At least I'm alive. I increased my meds a little hoping to even out my symptoms until I can get back on a regular schedule. If you want to read my extended account of RAGBRAI at 105 degrees, you are welcome to check my website: http://home.comcast.net/~nan.little/site/