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

Girl, I hear you. One would think if neuros really wanted to help, they would routinely have competent physical programs to refer us to. But give them a poorly designed study for something like Azilect, and they can't get the prescription pads out fast enuf...

'Bout the foot cramping, I don't have that, so don 't know exactly, but have you tried: ankle circles as a warmup for at least 5-10 minutes, spelling alphabet with each foot every day, rolling arches of feet over a foot roller while standing up (one leg at a time), and/or foot massage? Also working on a mini-tramp a little each day?

state taxe breaks
 

In some states (like Arizona) you can deduct some of the cost of devices that are deemed medically necessary by your doctor from your state income taxes. So in past years I have gotten script(s) from my neurologist for:

--recumbent tricycle
--a tall drafting chair (since I have bad akathesia and must stand or perch in front of the computer)
--gym membership
--massage therapy

My tricycle is my main form of exercise. I can no longer walk farther than about half a block before i get dystonia in my left foot. And while I still get foot dystonia while riding my trike, I can keep riding even with the dystonia.

PS I just reread the original post - I definitely need to pedal faster!!!

i don't take anecdotal evidence very seriously but there are enough clinical trials studying exercise we shall know soon. that said, i recently purchased a recumbent stationary bike. my plan has been to exercise every day and burn 10 more calories/day until i reach 200 calories/day, which should take an hr. of exercise at my selected resistance level. it's been a month, it takes about 40min to burn 150 calories.
i haven't paid attn to rpms but i'll start. you have to be in pretty good shape to go 1-1.5hrs/day, it's also very boring.

strenuous exercise makes everyone feel better, pd or not. the release of endorphins must help temporarily. building cardio helps, the person is likely losing weight, maybe eating less, sleeping better, maybe just is happier from the general benefit of exercise . but personally i have see no reduction in my pd symptoms, while what i eat or how well i sleep has a major affect.

i'll maybe modify my routine but that's a lot of work!

Neurorehabil Neural Repair. 2009 Jul-Aug;23(6):600-8. Epub 2009 Jan 8.
Forced, not voluntary, exercise improves motor function in Parkinson's disease patients.

Ridgel AL, Vitek JL, Alberts JL.

Department of Biomedical Engineering, Cleveland Clinic, Cleveland, OH 44195, USA.

BACKGROUND: Animal studies indicate forced exercise (FE) improves overall motor function in Parkinsonian rodents. Global improvements in motor function following voluntary exercise (VE) are not widely reported in human Parkinson's disease (PD) patients. OBJECTIVE: The aim of this study was to compare the effects of VE and FE on PD symptoms, motor function, and bimanual dexterity. METHODS: Ten patients with mild to moderate PD were randomly assigned to complete 8 weeks of FE or VE. With the assistance of a trainer, patients in the FE group pedaled at a rate 30% greater than their preferred voluntary rate, whereas patients in the VE group pedaled at their preferred rate. Aerobic intensity for both groups was identical, 60% to 80% of their individualized training heart rate. RESULTS: Aerobic fitness improved for both groups. Following FE, Unified Parkinson's Disease Rating Scale (UPDRS) motor scores improved 35%, whereas patients completing VE did not exhibit any improvement. The control and coordination of grasping forces during the performance of a functional bimanual dexterity task improved significantly for patients in the FE group, whereas no changes in motor performance were observed following VE. Improvements in clinical measures of rigidity and bradykinesia and biomechanical measures of bimanual dexterity were maintained 4 weeks after FE cessation. CONCLUSIONS: Aerobic fitness can be improved in PD patients following both VE and FE interventions. However, only FE results in significant improvements in motor function and bimanual dexterity. Biomechanical data indicate that FE leads to a shift in motor control strategy, from feedback to a greater reliance on feedforward processes, which suggests FE may be altering central motor control processes.

got on my recumbent bike, 80rpm is as fast as i can go and very difficult to sustain with any resistance. interesting.

Keep us posted
 

Hi,

Thanks for all the info and research. Hearing even 20 anecdotal bits where people benefit...that is enough for me! So long as those anecdotes can be traced back to research or shared by someone who offers proof through longevity or shows long term benefit.

I don't know that I've ever made it 80-90 RPM on a bike; I've always preferred
running, but with the annoying, unpredictable foot cramping, it is hard to work up a sweat no matter what I'm doing.

So I guess it does not matter whether bike is stationary? I agree with you that is horrible boring, but I see myself being to keep up with a routine more with stationary.

Please keep us posted on how you do. Take it slowly and work your way up to the 80 RPM range. Also curious, are you on meds at this point? I seem to recall I got much more from my exercise when I was in an "on" state.

on a recumbent 80rpm is just crazy fast even with zero resistance.
taking sinemet, 200-400cr, 100-200regular. have to be medicated to use the bike smoothly, otherwise unpleasantly jerky, have to concentrate on every rotation.

i'll keep you posted but that regime is a real challenge. running is way too painful plus even without pd i''d rather not wear out my knees.

Do you think you may have a mineral deficiency? I get severe foot & leg cramps that I blame on this. Usually have to take doses of coloidal minerals for a few days and then I'm ok for nearly a month. My dad gets the same thing and the minerals help him, too

What I really want to know is what is it that works - is it the high rpm, or is it the forced speed. That is, if you can pedal at 80-90 rpm by yourself is that good enough? Or is it being forced to pedal a lot faster than you really can that does the trick. Do we need another person who's faster than us or a motor on the bike, or is it good enough to just go as fast as you can?

It makes me think it must be the forced speed because both groups were working at 60% of their training heart rate, and if I were to pedal 30% faster than what felt reasonable, I think I'd be way up higher than 60%.