Parkinson's Disease Tulip


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Old 02-07-2010, 07:11 AM #1
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
Location: Michigan
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10 yr Member
Default Pedaling for Parkinson's...and dystonia

I know this is nothing really new and have searched the archives here, I just wondered if there is any further research substantiating these claims?

There seems to be yet another poster child for bicycling and symptom control/progression, at 23andMe:

"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."


This clearly supports the original claim that patients must go into a "zone" where they nearly double the normal PD cycling pace. I have some questions I'm hoping some will be able to answer:

-Is there a "program" devised based on this research? Something that was designed by the doctors involved in the research that we can all use as a basis?

-How do we know what kind of bike to use? Upright or recumbent? Can it be stationary?

-It may not be proven to slow progression, but even by improving meds in us...that is a huge benefit! It counteracts the notion that we have to layer more and more meds on to get extension, avoid dyskinesias, etc.

-Why don't insurance companies either cover expense of bicycles just as they would our meds each month?

-Why don't more doctors publicize this? I am outraged that I have never had one doctor suggest that exercise is of paramount importance for us.

-Finally, how does one exercise regularly like this when the foot cramps up...primarily during exercise.....!!!! This was my first inkling that I had more than just Essential Tremor; my foot would cramp during exercise. I find that Sinemet helps some but has never been foolproof. I could just scream that I can't really do much sustained exercise any more. My doctor's response is to just offer Baclofen! Yeah, I want to go on muscle relaxers in order to exercise...like meds don't makes us sleepy enough. Is anyone else having this problem?

I get so furious when I realize how little our insurance companies do to either keep us well or to improve our health! They want to keep us sick and dependent on meds because it keeps their little industry cycle humming with profit payoffs for all involved. Ugh!

Thanks! Any further info is appreciated, but I would especially like to know how to get past the foot dystonia during exercise.

Laura
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