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Pedaling for Parkinson's...and dystonia

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Old 02-10-2010, 11:46 PM   #11
imark3000
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Default my paddling experience

"When I was first diagnosed, I felt like I was on an icy slope with no axe to arrest the progression of the disease. Through a series of happy coincidences, I learned about the work of neuroscientist Jay Alberts at the Cleveland Clinic , pedalingforparkinsons.org. I began cycling at 80-90 rpms 4-5 times/week for at least an hour, generally 1.5-4 hours. Within less than a month nearly all of my symptoms disappeared, so much so that my doctor told me that if he didn't know I had PD, he wouldn't know. I still take 6 mg of ReQuip XL (down from 8) and 1 mg of Azilect, but the changes happened when I started the forced pace cycling. It is MOST important to pedal at 80-90 rpms. We don't know why, but it is working for me."

The above quote implies that VE AT 80 to 90 rpm does the trick while controlled research claims that only FE is useful. The research paper is confusing because it doesn't say if the wpd achieves same high speed as that in FE, why he does not get same benifits?
FE requires double seat and a strong partner, both difficult to have.
I have been stationary cycling twice daily for 15 mins at 85 rpm which is my "killing" limit.
I am sure it has helped my general health perhaps even my pd. It aso resolved my knee joints pain,
Imad
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Old 02-13-2010, 11:07 AM   #12
Mari-Mari
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I have seen two different doctors for my P.D. Both of them stressed the importance of consistent exercise---walking, cycling, whatever you can comfortably do. This goes back 11 years when I was diagnosed and my first neuro suggested trying to do some type of exercise daily. I find this to be true in that whenever I'm sick or unable to walk for exercise each day, I feel a definite weakness in my legs when I resume the daily 30 to 60 minutes of walking. It's not scientific but it works for me. I think some studies have been done, using the wii games to generate daily exercising (playing tennis & various sports). You may not notice a difference at first, but if you stick with it, I think you'll see some benefit.
Good luck!
Mari
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Old 02-17-2010, 01:17 PM   #13
Nan Cyclist
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Default Pedaling for Parkinson's

I am the person who posted on 23andme about the results of forced pace pedaling. I'll try to answer each of your questions.

The program devised by neuroscientist Jay Alberts at the Cleveland Clinic is for patients to ride 40 minutes, 3/week at 80-90 rpms. His test group averaged a 35% reduction in their symptoms after 8 weeks and the benefits continued, at some level, for an additional 4 weeks. I tried to attach his research that was published in Neuroscience in Jan. 2009 but the file is too big for this site. Because I signed up to bike across Iowa and was afraid I couldn't do it, I increased the time and frequency of biking and had outstanding results.

Jay's research involved people who could not sustain that pace on their own, so he used stationary tandems. **** I can still ride on my own, so I use my road bike outside and then put it on a bike trainer inside when the weather is nasty. My sister-in-law and many others use stationary or recumbent bikes. The key is to maintain the rpms.

It appears to have slowed, or even reversed the direction of my PD. Some of that I assume is due to the placebo effect. I'm so happy that I have some control over my life again and that I could actually reduce medications instead of increasing them.

Insurance companies...I don't even want to go there.

I'm finding that many doctors are touting the benefits of exercise, but not many seem to know about the Cleveland Clinic research or are waiting for more data. I've been told that it's not helpful to put out hope for people who might not be able to participate. I shake my head on that one. On the other hand, a hospital in my area contacted me to see if I would help them set up a tandem program. I'm also interested in working with health clubs, YMCAs, etc. to set up a train the trainers program for spin class instructors so they can guide PD patients who can cycle on stationary bikes.

I was having foot cramps, that would extend to my knee, hip and shoulder. I, too, thought I would just scream. Amazingly, after a couple of weeks of cycling (I forget exactly how many), the cramps disappeared. I still get some in my toes and maybe my arch, but very seldom and they go away within a minute or two.

Re comments from imark3000:
I don't know what VE or wpd stand for. I used to cycle at 50-60 rpms until I started this program. Believe me, 80-90 rpms is Forced Exercise for me!

Last edited by mrsD; 02-17-2010 at 01:45 PM. Reason: removing link per NT guidelines
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Old 02-17-2010, 03:25 PM   #14
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Quote:
Originally Posted by Nan Cyclist View Post
I am the person who posted on 23andme about the results of forced pace pedaling. I'll try to answer each of your questions.

The program devised by neuroscientist Jay Alberts at the Cleveland Clinic is for patients to ride 40 minutes, 3/week at 80-90 rpms. His test group averaged a 35% reduction in their symptoms after 8 weeks and the benefits continued, at some level, for an additional 4 weeks. I tried to attach his research that was published in Neuroscience in Jan. 2009 but the file is too big for this site. Because I signed up to bike across Iowa and was afraid I couldn't do it, I increased the time and frequency of biking and had outstanding results.

Jay's research involved people who could not sustain that pace on their own, so he used stationary tandems. **** I can still ride on my own, so I use my road bike outside and then put it on a bike trainer inside when the weather is nasty. My sister-in-law and many others use stationary or recumbent bikes. The key is to maintain the rpms.

It appears to have slowed, or even reversed the direction of my PD. Some of that I assume is due to the placebo effect. I'm so happy that I have some control over my life again and that I could actually reduce medications instead of increasing them.

Insurance companies...I don't even want to go there.

I'm finding that many doctors are touting the benefits of exercise, but not many seem to know about the Cleveland Clinic research or are waiting for more data. I've been told that it's not helpful to put out hope for people who might not be able to participate. I shake my head on that one. On the other hand, a hospital in my area contacted me to see if I would help them set up a tandem program. I'm also interested in working with health clubs, YMCAs, etc. to set up a train the trainers program for spin class instructors so they can guide PD patients who can cycle on stationary bikes.

I was having foot cramps, that would extend to my knee, hip and shoulder. I, too, thought I would just scream. Amazingly, after a couple of weeks of cycling (I forget exactly how many), the cramps disappeared. I still get some in my toes and maybe my arch, but very seldom and they go away within a minute or two.

Re comments from imark3000:
I don't know what VE or wpd stand for. I used to cycle at 50-60 rpms until I started this program. Believe me, 80-90 rpms is Forced Exercise for me!

Nan Cyclist,

I have been following your posts at 23andMe with some interest...glad you found us here. I'm embarrassed that I didn't think to suggest you share your experiences here.

Even if we don't all have as a tremendous response as you are having; I think the underlying message is that exercise helps!! I am concerned because I have been under a lot of stress lately and have been feeling worse- it's like I was immune to stress and now it's playing a wicked fast game of "catch up". I was beginning to think of how to best get my body moving again; I used to run but find it too much impact at this point, so I wanted to try biking. Can't do the road cycling right now but would love a stationary bike. I wonder is it easier to maintain that 80-90 mph on a recumbent or upright? I would think upright as you are able to put more weight over the pedals? Not sure, just wondering.

Yes, insurance companies do leave a lot to be desired. I did just learn that I qualify for a discount on equipment through Dunham's, so they do offer a little incentive. Learned they also offer multiple discounts on health memberships, nutritional supplements, yoga, etc. only they do not publicize this information! Well, I now I have no excuses

Thanks again!

Laura
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Old 02-17-2010, 04:39 PM   #15
Nan Cyclist
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Nan Cyclist,

I have been following your posts at 23andMe with some interest...glad you found us here. I'm embarrassed that I didn't think to suggest you share your experiences here.

Even if we don't all have as a tremendous response as you are having; I think the underlying message is that exercise helps!! I am concerned because I have been under a lot of stress lately and have been feeling worse- it's like I was immune to stress and now it's playing a wicked fast game of "catch up". I was beginning to think of how to best get my body moving again; I used to run but find it too much impact at this point, so I wanted to try biking. Can't do the road cycling right now but would love a stationary bike. I wonder is it easier to maintain that 80-90 mph on a recumbent or upright? I would think upright as you are able to put more weight over the pedals? Not sure, just wondering.

Yes, insurance companies do leave a lot to be desired. I did just learn that I qualify for a discount on equipment through Dunham's, so they do offer a little incentive. Learned they also offer multiple discounts on health memberships, nutritional supplements, yoga, etc. only they do not publicize this information! Well, I now I have no excuses

Thanks again!

Laura
Hi Laura,

I would guess that an upright stationary bike would be preferred, if only that it is closer to a road bike so when you are strong enough to switch back and forth it would be easier on your joints. Just guessing. I just returned from a 19 mile ride (one way into a headwind) and that reminded me of an important part of my experience. Whenever I feel miserable, tired, achy, upset stomach, just down for any reason and I'm SURE I cannot possibly get on my bike, within 3-5 minutes after starting to pedal, I'm fine. One day I felt so awful I was crying on the phone to my husband. His response: Get on your bike. I did and it was, and always is, like putting a plug into a socket and getting recharged. I can't explain it, but it always happens.

We just returned from a week at Whistler. Last year when we left I wondered if I would be able to ski again. I was stronger than ever and skied for 5 days, even with new powder. (No Lindsey Vonn mind you!) We also stayed up late because of the Olympics. BTW, I'm 64, female, and was never an outstanding athlete. My whole family was amazed.
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Old 02-17-2010, 11:30 PM   #16
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Quote:
Originally Posted by Nan Cyclist View Post
Hi Laura,

I would guess that an upright stationary bike would be preferred, if only that it is closer to a road bike so when you are strong enough to switch back and forth it would be easier on your joints. Just guessing. I just returned from a 19 mile ride (one way into a headwind) and that reminded me of an important part of my experience. Whenever I feel miserable, tired, achy, upset stomach, just down for any reason and I'm SURE I cannot possibly get on my bike, within 3-5 minutes after starting to pedal, I'm fine. One day I felt so awful I was crying on the phone to my husband. His response: Get on your bike. I did and it was, and always is, like putting a plug into a socket and getting recharged. I can't explain it, but it always happens.

We just returned from a week at Whistler. Last year when we left I wondered if I would be able to ski again. I was stronger than ever and skied for 5 days, even with new powder. (No Lindsey Vonn mind you!) We also stayed up late because of the Olympics. BTW, I'm 64, female, and was never an outstanding athlete. My whole family was amazed.
Hi, Nan & Laura,
I've also been following the discussion on 23andMe and actually posted there, too. I have some experience with the biking thing. A couple of years before PD diagnosis, we got a recumbent stationary bike, but I think the angle or something about it caused me to develop serious pain in my hip or S/I joint, feels like sciatica or periformis pain, is still here, has never gone away. I've always had trouble with my joints anyway.

Now I'm in a local PD group that has gotten a motorized upright Theracycle to use on trial for a few weeks. I've done 3 X week, 45-50 minutes, for a couple of weeks, at the recommended pace, no real miracles yet in terms of PD symptoms, but I'm still hopeful & realize it may take a while longer to see results. But like all exercise, I certainly feel immediate improvement in mood & many physical benefits. I think the upright position does seems less stressful on my messed up joints, but not sure yet.

I read about the Cleveland Clinic bike program long ago & have been following with interest, but when I've attempted to maintain the 80+ RPM pace for 45 minutes (even for more than a few minutes), I find it's impossible. I'm also 64, female, diagnosed 3 years ago, but convinced I had symptoms for years, possibly decades earlier. Take supplements, estrogen patch, calcium channel blocker, vitamins, etc. and only started meds (carb/levo) last month, no miracles there yet, either. But I'm doing pretty well, except for a big ol' huge tremor.
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Old 02-18-2010, 07:47 AM   #17
soccertese
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Default Hi nan

have upped rpms to >80 which i can maintain for 15min. will gradually increase and report my results. using a recumbent. it's an uncomfortable pace, requires a lot of concentration and setting the resistence low. but it's certainly a more vigorous workout even with half the resistence i was using.
as an aside, my pd symptoms accelerated after i stopped playing/coaching soccer.

did the cleveland study really show brain changes via MRI?

soccer in seattle
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Old 02-19-2010, 01:14 AM   #18
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I've seen the MRI slides that Jay has taken of people in his studies. Normal people have a lighted up area in the part of the brain affected by PD. Prior to cycling PD patients have almost no lighted area there. After doing the forced cycling, the PD patients' MRIs look nearly normal. I just about fell off my seat.

I would be interested in hearing results from the Theracycle users.

Peony, I wonder what would happen if you alternated using the Theracycle and pedaling on your own, trying to get to the point where you could go it alone. Good to hear you're having other benefits.
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Old 02-19-2010, 07:37 AM   #19
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Originally Posted by Nan Cyclist View Post
I've seen the MRI slides that Jay has taken of people in his studies. Normal people have a lighted up area in the part of the brain affected by PD. Prior to cycling PD patients have almost no lighted area there. After doing the forced cycling, the PD patients' MRIs look nearly normal. I just about fell off my seat.

I would be interested in hearing results from the Theracycle users.

Peony, I wonder what would happen if you alternated using the Theracycle and pedaling on your own, trying to get to the point where you could go it alone. Good to hear you're having other benefits.
Nan, any reports on how this effects executive function? I'm not yet diagnosed, but following all this closely as it seems to me it would pay off to do the best I can regardless. I've never been a real go getter, so now I'm just a little slower, a little stiffer, and a little twitchier! But the part that has gotten me down the most is the struggle to focus and process information, to the point where I've modified my role at work!

As far as a feeling of general unwellness, I notice after 30-40 minutes of yoga, I'm good to go-at least for several hours. So I can definitely see the benefits of regular exercise of some kind.

Thanks for your post! Very informative thread!
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Old 02-19-2010, 11:39 AM   #20
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Hi Coachmomlu,

Before cycling, I was loathe to go to parties, meetings, any gathering where there might be multiple conversations that I would need to process before responding. I had difficulty speaking in complete sentences, much less paragraphs, and/or sequencing my thoughts. My ability to understand spatial relationships was severely compromised (and still is to some extent) which is one reason I took up quilting to force myself to think mathematically. I stopped reading books for nearly a year because, although I could decode words, I couldn't keep track of the train of thought. Insightful discussions were out of the question. I felt like I was losing my mind, and I probably was.

During RAGBRAI, the great ride across Iowa, Jay asked me to join him to answer questions from one audience and to speak with a TV reporter on another occasion. My husband told me the only advice he would give next time is to smile more and to stand up straighter. Content was just fine.

Now I'm working with people here to set up a tandem program at a local hospital and hopefully to work with YMCAs and health clubs to add PD programs to their spin classes. This involves developing a mission statement, goals, objectives, timelines and multiple resources, all things I did before retirement, but which I could not have dreamed of doing in the PD period before cycling. Although I can tell that I'm not functioning at as high a level as I used to, I'm much closer to normal than a year ago.
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