http://clinicaltrials.gov/ct2/show/NCT01636297

I wish they would simply acknowledge that EXERCISE WORKS. And instead of spending more $$$ on clinical trials that tell us what we already know, use the $$$ to set up a "WELLNESS CENTER" or multiple wellness centers in local areas across the country where PWP can go exercise.

I betray my ignorance here, but do so in a quest for knowledge, so here it goes:

I would really like to know how do they define voluntary rate, which is how they then determine your forced rate (i.e., 35% greater than voluntary rate). The announcement said all would initially be set at identical aerobic intensities, so where is the voluntary component? I am probably just misunderstanding aerobic intensity but again, if it is the same for all of you, what is voluntary?

What is the metric being used to quantify the 35% increase--is it rpm?

And also, why do they automatically assume you can't force yourself to do the extra 35% and only apply mechanical forcing to those who can't push themselves to the extent required. Is the 35% the key (and if so, why don't they give you a chance to do the 35% on your own) or is it that people are being forced--almost like an animal that is being chased. Are they trying to determine if there is some primitive psychodynamic that is changing the brain activity (evoked by a sensation of being chased) or if it is muscle power and physical exertion alone that is changing the brain activity? Is it important to the study that you feel like a mustang with a puma on your tail (I have actually seen such a thing and it is stunning the level of horror involved for me as an observer, much less the horse that is being chased--BTW, the horse won!).

All I know is I've now been doing the stationery bike for about 3 mos. and have finally worked up to 80 rpm for 40 minutes as Nan suggests--but for only 3 days a week at this point. Goal is every other day, or 4 days a week. But whatever the case, I think the tremor is a little bit better but overall strength and well being and mood are noticeably improved. I'm thinking, based on my experience, this may be good for you whether you are tremor dominant like me or rigid.

But the bottom line question for me is why does a machine have to force you, why don't they let the ones who can, force themselves to get that 35%. Do you have to feel chased?

the tandem bicycle "benefit" was discovered by serendipity, i put quotes around benefit because personally i don't think the studies are large enough/long enough to definitively prove it yet.
they've shown forced exercise in mice and primates is beneficial so there is a lot of evidence that the rate has to be intense.
i am signing up for a tandem forced exercise study, it requires one hour sessions 3 days a week for 10 weeks and with the terrible traffic in seattle i'm looking at maybe 4 hrs/session so i don't want to go "easy" on the exercise with that time/effort commitment, i'm happy to be their guinea pig. i'd run a marathon if it would help.

any benefit ultimately is biochemical in nature, i'm sure the ultimate goal is to discover what it is and synthesize the biochemicals. i don't think it's realistic to expect that level of exercise to treat a disease in an aging population nor as a country do i think everyone should do forced exercise to try to prevent brain diseases, well now that i think of the obesity rate .... the drain on the economy would be terrible.

i certainly don't expect to nor want to do forced exercise for years to come, it would wear out my joints. i'm not saying ymca's, etc. are jumping the gun by setting up classes, i see it as more as research/"fun".
but as someone with pd i see this as ultimately developing a reasonable exercise/drug regime if the benefit is proven maintainable. so i would still view this as research so yes, they are still asking for vigorous rates of exercise with the limited funds/volunteers they have. obviously if they want to look for changes in biochemicals/dna expression, brain scans, etc., go for the biggest changes you can achieve.

a motorized stationary bicycle mfg is certainly using forced exercise in their advertisements.

Jean,

Exercise does work but as we all know, nature of science is to prove any hypothesis. The recent results of the trial with 26 people confirms the first trial that was held with 12 people, that confirms the serendipitous results of Jay's ride across Iowa 10 years ago. Now they are starting a study with 100 people, which happens to be a magic number in scientific research. It's hard to wait, both for the trials and for the outcomes.

In the meantime, many YMCAs and exercise centers across the country are starting Pedaling for Parkinson's programs. If there is not one in your area, contact your local YMCA or don't hesitate to contact me with a private message and I'll see if I can help.

So many questions and I'm not sure I have all the answers but I'll give it a shot.

Voluntary rate is the rate that people normally cycle when they're not encouraged or forced to do anything at a higher cadence. For most people voluntary rate is around 55 RPM. Cadence is not to be confused with speed. Cadence is the number of revolutions per minute and speed is how fast you go over time. The critical part emphasize critical part of Dr. Alberts' research is the cadence. Speed does not matter. Keeping within the cadence of 80 to 90 RPM and keeping your heart rate at 60 to 80% of your maximum heart rate are the key factors to this forced exercise research.

Although it's a challenge, individuals can achieve the RPM consistent with the forced exercise on their own. That's exactly what I did in 2009 when I was training to try to write across Iowa with the Pedaling for Parkinson's group led by Jay. I was terrified it wouldn't make it across Iowa, so I trained 4 to 6 days per week, writing anywhere from 1 1/2 hours to four hours each time, keeping the cadence at 80 to 90 RPM as best I could which was most of the time. After a month of training so hard, my symptoms essentially disappeared, so much so that my doctor told me that if he did not know I had Parkinson's, he would not diagnose it. Understand that I was riding far beyond the protocols that are being followed in Dr. Alberts' research studies. I continue to ride at that cadence for at least an hour 5 to 6 days per week. I've been able to lower my medications from 8 mg of Requip XL to 4 mg and wean myself from Azilect as well. I am currently 67 years old.

I really like the question about being chased versus biomechanical/ Biochemical differences from cycling. My understanding from Jay and his team is that they are studying the biomechanical/ biochemical differences. That said, my own experience is that there are many psychological changes that happened with cycling. For me than non-motor symptoms are certainly more important than the motor symptoms of Parkinson's. So all the relief that I get psychologically is fabulous.

FYI, Dr. Alberts has designed a mechanical cycle that replicates the algorithms of a tandem. These cycles are being tested (of course) before they are put on the market. The other mechanical cycle that is highly advertised has not been shown to be efficacious for people with PD.

It is exactly right that the programs at the YMCA's and other fitness facilities are not research programs. They use exactly the same protocols that are being used in the research setting, but the controls are not in place to make it a research study. It is not meant to be a research study but to offer opportunities for people with Parkinson's to cycle together in a safe situation.

I noticed this started July, 2012, almost half a year ago, yet the link says they are not recruiting yet? Give me a break! I cannot see why they can't just be signing people up now, this has none of the issues of the regular drug trials that I can see with an upside of everyone being healthier in general.

Maybe I don't really understand how trials work, but I find it disheartening that recruiting has not even begun for this. And they complain that PD research is so slow because patients won't participate in trials! Kinda hard to do that when recruits aren't being taken. Wonder how long that will take? How many hours and meetings before some ethics or review board to clear this, what a waste of time that none of us have.

I am reminded of Ron's comment about his working career running those labs: there was a sense of urgency. Sadly, I do not feel that applies to the research world.

Thank you, Nan,

I am lucky to have a facility in my community, plus I ride my recumbant tricycle and feel good effects from that as well. I think that now that I am at 10 years with PD, I am feeling less well. And I am feeling more urgency for avenues for PWP to live better / feel better. There is a lot of duplicated research out there and I wish that were not so, and I wish that more wellness facilities were available to others in the PD community.

Jean

Nan, thanks so much for the info. It looks like I need to bump it up to one hour, instead of 40 minutes. I think at that point, I will be close to my capacity. 80 rpm for 40 minutes is hard enough, but maybe in a couple of weeks, I will add the extra 20 minutes per session. Thanks again for your selfless efforts at sharing all this important info. And Soccertese, good luck with your new program, I hope we can hear about it as time goes on.