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%.

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

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

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!

Proof in the progress
 

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. :o

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

Pedaling for Parkinson's
 

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.

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

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!

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.

Fascinating, Nan! Thank you for sharing your story with me. It sure sounds like the cycling is worth pursuing. Think I'm a candidate for a stationary bike. Hmmm, another thing to campaign for! I just asked my hubby to get me...uh, I can't remember! haha!

Mineral Deficiency
 

It is quite possible that you have a magnesium deficiency. Calcium/magnesium can be added as a nutritional supplement as well as a decent form of potassium - but that depends upon your blood pressure.

I have found that tablets (normally prefer capsules for fewer excipients) work faster. You might take them before exercise or when you feel the cramp coming on - although that means minutes of that horrible pain.

While many people prefer those complete vitamin and/or mineral pills, I prefer to buy the individual supplement or synergistic combos because that provides better quality and form control.

I know this is months late but...

I'd like to add to this thread that, magnesium in the form of OXIDE is not appreciably absorbed from the GI tract. It is used today as a laxative for this reason.

So read your labels and choose another form, either Chloride in long acting form or a chelate like glycinate, lactate, malate, etc.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

On that thread are some suggestions for topical use now.
Some oils are on the market and there is the Kirkman cream that works nicely as well.

a long term cyclist......
 

This is a different take on cycling and PD. Personally met this chap, he looks amazing, and is doing very well. He tells of people who have difficulty walking but who can do long distance cycling, and is a powerful advocate for exercise, in every way.

http://pedalforparkinsons.co.uk

On another note, while exercise is known to be good for us, and to increase stamina, help with many things PD, and actually I love walking and being active, and especially love gardening, what do you do if fatigue is one of your symptoms. I often have very active days especially in warmer weather but pay a price, a little too much can result in a couple of days that are completely energy free........

A week and a half ago my son and I rode Chilly Hilly, 33 miles of up and down steep hills. This was preceded by a 45 minute wait for the ferry and a half hour ferry ride. I was chilly, then warm, then riding. I just stopped once for about 3 minutes to take off a jacket. At the end I met up with some friends of my son at a restaurant. They had ordered several pitchers of beer and lots of deep fried foods. We sat there for easily two hours until I finally had to stand up and stretch right there in the restaurant and then leave to catch the ferry. We had nearly an hour wait for the ferry, etc. etc. It took nearly a week for me to recover. The biking was fine, waiting and food were not. I had low energy and an upset stomach for the whole week. Lesson learned, remember you have PD and don't go nuts varying your schedule.

I'm back to my hour and a half a day at 80-90 rpm and feeling fine.

I, too, love to garden and find that I can do so for about a half hour, then rest and go at it again. Stop when my body says stop.

You might also read "Spark: The Revolutionary New Science of Exercise and the Brain"
~ John J. Ratey.

nan,
90min at 80rpm? that's amazing. i'm trying to do 3 groups of 20minutes each. the worst part is the boredom but what the heck. been at it for 2 weeks, nothing to report except it gets easier, using a lifecore LC 850 recumbent. definately have to be well medicated otherwise just too stiff to get that speed.

I have a new attack on boredom. I got the series of Alfred Hitchcock movies from Costco. Many movies. Lower the resistance and no trouble keeping up the speed with Hitchcock. I wear a heart rate monitor and get my rate up into zone 4 before timing my workout. I leave myself hanging in the movie so I'll want to do it again the next day. According to Jay's article, you need to do at least 40 minutes without stopping except for pauses of a few seconds. Sorry about that.

Great idea
 

Nan,

You have lots of great tips on how to power through. I am glad you re-posted the time requirement and 40 minutes should be no problem for me once I build my stamina back up. I had a baby a year ago and could not exercise during pregnancy, I am having a hard time building my stamina back up. I get on the elliptical and when on meds easily have 85-110 rpms, the problem is after 10 minutes, I feel like need a defibrillator. lol. I am soooo out of shape, for now I focus on making sure I don't keel over from too intense a cardio workout and on getting past the 10 minute mark...each time I try to go a few extra minutes. No time for boredom. :)

I love the Hitchcock films idea, though I am such a movie fanatic I have seen them all more than once. Just wanted to add that my boredom buster is to practice my French through listening to Podcasts--you can subscribe to podcasts on many different topics. Your favorite or popular series from TV or Cable are great too in keeping yourself going.

Thanks! I think you are inspiring many people to get active...look at that view count. :)

Laura

Laura, Where are you from in Michigan? I'm going to be there in April and will give talks on the 27th at Bay Ridge senior community, 11 a.m. at East Bay Ridge and 1 p.m. at West Bay Ridge. Also, for those in the Seattle area, Jay Alberts, the Cleveland Clinic neuroscientist who proved the correlation between cycling rpm and reduction of PD symptoms, will be the keynote speaker at the HOPE conference Nov. 6.

I think it's amazing that you can do an elliptical at that rate, even for a short time. If you have access to a bike, the 80-90 rpm for 40-60 minutes should be a piece of cake.

I have a new theory, purely based on my own experience, not tested scientifically. My extreme reduction in symptoms happened when I went over the top while training for RAGBRAI last spring. Rather than 3 times/week at 80-90 rpm for 40 minutes, I rode 4-6 times/week at 80-90 as best I could for anywhere from 1.5-4 hours, slowing for hills and taking a few rests. I was so worried I wouldn't make it across Iowa in RAGBRAI. Knowing there were hills on the ride (22,500' elevation gain in a week), I also rode up and down hills some days instead of doing the long rides. The hill near my house has 200' elevation gain in .8 miles. I told myself I could do it 10 times in a row. The most I achieved was 4, but it was still a great workout. By the end of a month, my PD symptoms were nearly gone. Since RAGBRAI, I have done more of a maintenance routine of the 1.5 hour rides outside or 1 hour on the bike trainer inside and have seen continuous improvement in my mental functions as well as my physical capacities. Lately I'm noting a little cramping in my foot and third finger on my right hand, nothing to whine about.

So I'm wondering if there is a neuron-building threshold that can be reached by extreme cycling and then maintained and enhanced through further cycling exercise. It might be worth trying.

Please, what view count are you referring to?

Maybe heart rate?
 

Hi Nan,

Sorry the view count tells you how many times a post has been looked at-far right column- you have the current number of replies and next to it is the number of views- this topic is at 1,075!

I am not far from where you will be; I am in Ann Arbor, maybe 45 minutes from Highland, MI. Is April 27th the only day you will be in town?

I think you may be on to something in noting that exertion or workout intensity may have made a difference for you. I loved running and would easily go 3K a run prior to my diagnosis...then that 'mysterious' foot cramping appeared and the adaptations to PD started then. I went for nine years with no medication from my first appearance of tremor, so I am beginning to think that those years of more intense exercise helped me. I only became more sedentary because PD kept forcing me to shorten my workouts to the point where I felt it was not beneficial from a cardio standpoint at all :(

I am beginning to wonder if achieving an optimal heart rate or "zone" during workout is what helps? Obviously, it has to go beyond only one form of exercise and measures like rpm. There is a man who has lived with PD for over 20 years and he continues to run marathons- his story is in this USA Today article He too notes how he is doing better than other he knows with PD for same number of years and thinks it is due to intensity of exercise. Does Dr. Albert address this or will he be researching it further?

All of this is very encouraging, and means that I better get up to that 40 minute mark while I still can easily maintain the right speed. Just to note that before I was medicated, I was in the 50-70 rpm range on a stationary bike- this, I think, is consistent with most PD participants in research.

Laura

Hi Laura,

I figured out the View column as soon as I posted the question. Thanks though. We used to live in Ann Arbor when my husband was in grad school. I graduated from Albion. My mom is in a retirement village in Traverse City. I'll be there from April 20-28, flying in and out of TC. I'll be giving the talks (same one twice) at the Community at Bay Ridge in TC at 11 and 1 on the 27th.

Jay made a poster that shows his research data in graphic form and includes parameters that make his research quite clear. It is too large to post on this website but if you send me your email, I'll try to send it to you (and others). I just hope 1,000 people don't respond!

Nan,

Thanks. We have a way to private message each other through the forum right here. When you login, look at top right and notice you can link to your user name. Click on your name to access your inbox.

Thanks for your willingness to share.

Laura

I note that quite a few people are keeping track of this thread and I wonder what experiences individuals are having. Are you trying cycling? If so, do you see or feel any difference in the way you either move or think, or both? I found that over time my cognitive functions returned, which thrilled me even more than having my body nearly back to normal. If you're cycling, are you going at the 80-90 rpm for at least 40 minutes three times per week or are you going more or less? What is the hardest and easiest part of the cycling for you? What do you think would help you out? Feel free to add anything else you would like.

My experiences with forced pace cycling are great, but it would be fantastic if these experiences or something close to them were replicated by lots of others. If you're shy about responding to the group, please contact me through the private message forum. I'll compile answers anonymously and report back to the forum.

Thanks.

Nan Cyclist
I've been meaning to add to your post and just now getting to it.
Last year I got back on the bike and started training for the RAGBRAI as well. I wasn't sure how I'd do over the course of the week but was determined to have a small victory over PD and ride with my friends on the Air Force Cycle Team. I increased the miles slowly from Mar till Jul and had about 1150 miles in the seat by RAGBRAI time. I didn't have the same great results you had but I felt the best I had in a number of years. I found after I got morning meds in me and got rolling I could stretch out the afternoon meds. It was like the bike was producing dopamine for me in a way. I felt probably my best on century day and did it in about 6.5 hrs, which is good for me. Maybe I had some help in there with some paceline friends from time to time, but I can't admit to that.Ha! Riding here in the beautiful hills of East TN made the elevation gain in Iowa seem easy.
I've been spinning through the winter, not as much as I prefer. The wx hasn't helped and so it's mid Mar I have maybe 100 miles in the seat.:mad:It will get better! I'm still young in the battle with PD dx Dec03 symptoms 2 yrs before anyway, age 50, but I feel the bike plus the gym (weight training, yoga) is the best weapons I have in this long-term war. It would be great to compare notes from riding this summer. My neuro rides as well, and its always good to out climb him on a group ride. Don't know where you're located but we have some good local rides, so come on down!

Hi Scot,
Seattle is a long way from TN, but thanks for the invite to ride! Actually a friend from Memphis heard about Jay's work and got me on this track, so we have a connection there. I was awestruck in RAGBRAI whenever the Air Force Cycle Team flew past me. Made me proud. Our group, Pedaling for Parkinson's, had on jerseys with a big brain on the front that says: "You don't need brain surgery" and the back has a head with a pedal in it that says: "Just Pedal!" We got a lot of comments. However, my favorite group name and logo was Team Soreassareus with a dinosaur sitting on a bike...all old guys as I recall. I got stronger as the week went by. Day three was the hardest with the long ride and wet roads. I was concerned about accidents and saw a couple, including one guy who cut right in front of the guy ahead of me and took him out. I jumped to the gravel and somehow didn't go headlong into a ditch. Got my heart rate up for sure. I was the slowest in our group, but found plenty of people to talk with along the way and I always felt good when I passed people on hills. (More passed me than I passed.) Are you doing RAGBRAI again this year? We are. It would be great to meet you in Iowa.

I think you're right that the cycling is producing dopamine or at least getting it through the barrier. Have you read Spark, The Effect of Exercise on the Brain? Well worth anyone's time.

Have a great day.

Thinking further about replicating my experiences with forced pace cycling, I thought I would share with this group that several people have asked for help in setting up a program like Jay's. We're close to starting one here in Seattle with the support of a local hospital, bike shop and good people. I'm working on putting together a template for people to follow anywhere. Is there interest in that?

i'm riding my recumbent but haven't achieved the 30-40min at 80+ rpm 3-4times/week yet and may never, it's not easy when healthy.
i'll be more motivated if another peer reviewed study validates the results of the 1st study.
so far no sig. benefit.

Soccertese, you have a good point about the study. I asked Jay and this is his response: "outcomes have not been replicated yet...we are in the midst of the clinical trial...my gut tells me those that are pedaling faster will do better. so, best answer is replicating these things takes time and this is what we are doing...in the interim this appears to be a program that is effective...the only downside is improved fitness and other benefits associated with exercise (not a bad downside)."

I have also found personally that when I lower my resistance and pedal near 90 rpm, I feel better. Yesterday I did hills, going up and down a 4.6% grade for 43 minutes (4 trips). My rpm wasn't high, but I'm sure this helped my fitness. Now I'm headed out for a 25 mile pretty flat ride; most of it will be in the 85-90 rpm range.

It looks to me that people on recumbents have a harder time keeping high rpm.

Did you see that I sent you a private message?

Nan Cyclist, I would love to hear your ideas about setting up a cycling program. I'd also love to see the poster of Jay's research. Please send it if you can.

I am in San Francisco which, like Seattle, is a a huge cycling city. I have been a cyclist for years. I have to think it helped delay the onset of my PD symptoms.

I do a lot of endurance events. These are typically day long rides with long distances and big hills. My cadence is usually 60-70 rpm on huge hills and 90-100 rpm on flats. I try to keep at 60-80 percent of HR and try to go 60-90 minutes between rest stops during events. Super easy gears are the key to high cadence and mine are about as easy as you can get (I use a combination of mountain bike a road bike gearing).

Based on my own experience, I think the benefits may be highest with a combination of moderate to high rpm plus moderate to high HR plus time plus a consistent pace. The balance aspect of outdoor cycling is probably also beneficial.

I have both arm tremors and a crampy left foot. Once on the bike, they are pretty much non-existent. I do worry that i'll lose my balance and get hit by a car; that's why I like participating in events. The food and companionship are great (and motivating!) and often roads are closed or traffic is light. And since there are cyclists of all levels on the road, you never need to worry about being the slowest one.

Keep pedaling,

Anne

Inspired!
 

Nan, you have inspired me to ride my recumbent tricycle harder & faster. Instead of leisurely cycling around the neighborhood, I am pushing myself to try & ride faster and longer each day. I don't know rpms but I'm increasing my mph. And I do feel better after every ride.

Jean