For mineral advice see Nutrition for Sports and check out the chapter on sweat mineral losses. I use dietary supplements for calcium and magnesium; and I eat a banana each day for potassium. I ran out of bananas for a few days and paid for it yesterday with cramps that forced me to stop cycling early. Then I bought another bunch.

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

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

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.

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

Wow! This thread got me poking about and I just found a motorized "bike" for about $115. Hmmm...70 RPM...I understand, thus far, the exercise must be forced (you don't effort) and at 80 to 90 RPM. Well, the Cleveland Clinic's the protocol Jan would like to try, but cost is prohibitive. So, this?

http://www.therapy-cycle.com/cycle_therapy.html

Thanks, Nan!

TrishaPDX

Here is info on the Motomed Viva 2:

http://en.motomed.com/medizin_01_gb/...parkinson.html

Found one of these in Oregon a few weeks ago at Portland Providence Medical Center's Acute Rehabilitation Center, where Jan just spent 10 days being tuned up. Alas, the PT wasn't familiar with the PD & Forced Motion Cycling reseach and wouldn't allow a 80 rpm trial. Today, Jan was evaluated by a physical therapist who say her hip flexors are A-OK for a trial of the forced rpm that's being studied.

Off to the races!

The following piece is part of an article written by Dr. Jay Alberts that addresses your issues. Forced Exercise (FE) is different from Voluntary Exercise (VE). As you can see from the article, FE is not just sitting on a cycle that turns one's legs around at a specific rpm. The patient is an active participant in the exercise. On a tandem the patient provides at least 25% of the power in order to achieve results. From reading the Therapy-Cycle website, it appears that there is a hodgepodge of partial information and data, all designed to part the patient from their $. I have written to Dr. Alberts to ask about the Motomed and will let you know when I hear from him. I hope this helps. I'm eager for Dr. Albert's cycle to be generally available, but I firmly believe that testing, gathering data, and evaluating it are of primary importance.

Here are the parts from his 2011 article:
"FE, in this case, is defined operationally as a mode of aerobic exercise in which exercise rate is augmented mechanically to assist the participant in achieving and maintaining an exercise rate that is greater than their preferred voluntary rate of exercise. It is important to note that during FE, the participant is contributing actively to the exercise; they are not being moved through the motion passively. Our data indicate that FE leads to a global improvement in PD motor function and an alteration in the CNS [Central Nervous System] function (22). These global changes in motor function and altered activation patterns provide strong evidence for the hypothesis that for patients with PD to derive motor benefits from exercise, assistance is required to achieve a rate of exercise that triggers the release of neurotrophic factors or possibly dopamine.

FUTURE DIRECTIONS AND SUMMARY
A randomized controlled trial currently is underway as a follow-up to the initial tandem cycling study. Subjects are randomized to one of three groups: no exercise, VE, and FE. However, in the current trial, a motor-driven cycle, which we have developed is being used to safely deliver FE. A model- based controller was developed to replicate the ‘‘feel’’ of the human interaction that occurs during tandem cycling (e.g., real-time alteration of motor contribution, pedaling rate, and monitoring of heart rate). The controller model approximates the dynamics of the cycle interacting with the rider during an exercise session. This trial includes clinical testing and neuroimaging 8 wk after exercise cessation to help determine the long-term effects of FE and VE in patients with PD. We also are engaged in a preliminary study with deNovo patients with PD in which they will exercise for 6 months in their home. Weekly cognitive and motor assessments will be made and compared with a group of deNovo patients with PD who are not exercising. Collectively, these studies will provide greater information regarding the potential mechanisms underlying any improvements in cognitive or motor function in patients with PD after FE or VE, the possible duration of motor or symptom benefits and initial data regarding the potential for exercise to slow the progression of PD.
Although the exact components and dosage of optimal exercise interventions have not been determined for patients with PD, evidence from the animal studies and our data suggests that intensive aerobic FE may have neurorestorative and neuroprotective properties possibly through the endogenous release of neurotrophins or alteration of dopamine. Animal and our preliminary human data suggest the ability to influence cognition, metabolism, and potentially, the progression of neurodegenerative diseases through these mechanisms. Even the hint of neurorestoration associated with FE warrants the testing of this intervention in other neurologic conditions such as stroke and Alzheimer disease, as the ‘‘side effects’’ of exercise include improved cardiovascular fitness and increased energy. Future studies will help delineate the optimal dosage of FE or VE for neurologic patients. Furthermore, a clearer understanding of the use of FE as a neuroprotective or neurorestorative adjunct to pharmacological or surgical interventions offers these patients a rare opportunity to participate actively in the treatment of their disease with minimal risks or side effects."

Copyright © 2011 by the American College of Sports Medicine