To Soccertese. The studies are completed but the paper has not yet been published. Perhaps I shouldn't have mentioned them. This is no longer anecdotal information.

Conductor 71, May I please correct one point in your commentary. Although I have cut my meds in half since cycling, I take 4 mg of ReQuip XL, 1 mg. of Azilect for PD and .5 mg. of Clonazepam for my associated REM sleep behavior disorder. I briefly (less than a week) upped my meds to 6 mg. of ReQuip XL in December due to a lot of stress, then decided I wouldn't let the bastards get me down and went back to 4 where I've stayed since.

I am also puzzled by negative commentary. The worst thing that can happen if you cycle (presuming your heart and bones are strong enough to try) is that you'll get more fit even if your symptoms continue. Better than the side effects of more meds I think.

Way to go, Nan Cyclist! Good for you! Since diagnosis 4 years ago, I have tried several times to get going with a biking program, including several weeks last year as a trial on the Theracycle, but have encountered problems. One is I have had increasing difficulty maintaining anything like the required 80 RPM at all, let alone for an hour. Also, the very good stationary bike we already had seems to cause or worsen serious chronic pain in left hip area (sciatica, periformis, S/I joint area). I'd like to try an upright stationary bike to see if it might be an improvement, but expense is an issue. I have a regular bike, but it's beyond my abilities right now on the streets in my hilly area. Any similar pain or other limitations, experiences, recommendations, or thoughts on this?

skeptical=negative? plus it is a no no to release results before they are published in a peer reviewed journal, much less share them in my opinion. if this was a drug study one could be in very big trouble.
what is being proposed isn't just simply riding a bike, it's making a major commitment to tandem cycling or using an expensive theracycle. this is not a trivial endeavor for pd'ers, especially advanced. so i disagree, i think there is a huge commitment to get to the exercise level you describe.

conductor,
most phase2 pd clinical trials fail after stellar phase1 results. that's why i'm skeptical. why?
1. placebo affect. and the phase1 study certainly wasn't a blinded study. one patient secretly taking more meds or altering their med regime
could have easily skewed the results, these were mild/moderate pd'ers.

read the original paper?

i've done research which required statistics to determine if the results of the treatment were sig. different from chance. there is so much variability day to day, hour to hour with pd i am skeptical of such a small study that has so many variables.

if you want to PM me i'll be glad to discuss this further but i believe i have every right to express my skepticism.

Peony, Remember I'm not a medical doctor, so I can only give my experiences and those stories I've heard from others for what they're worth. I've had the same pains you describe, only on the right side, plus cramping in the hand, foot, and calf. Ouch! I just pushed through the cramping pain and it went away. There were times I thought I would scream on the road, but I suppose that would be very distracting to others. So I would start singing "To Dream the Impossible Dream" to myself and that got me through it. (I substitute "Nan" for "Man" in the song. Mind tricks.) For the other pains you describe, my general practitioner had xrays and a bone density scan done to see that there was no structural problem. Now I'm seeing a great physical therapist who determined that my hip bones were not aligned. I've been doing mid-glute exercises twice a day for the last four weeks and I expect that at tomorrow's session, he'll tell me I'm good to go. This is especially important as I am climbing a lot and need to add weight to my backpack in preparation for climbing Kilimanjaro this summer.

Re the bike. Most stationary bikes are difficult to adjust just a wee bit. Even a 1/4" difference in the height of the seat or tilt, or handlebar placement will change the physics of how the body works. I ride on my road bike, putting it on a Cycleops magnetic bike trainer that I got from Craigslist. First I took my bike to a great bike shop and had the fitter adjust it exactly for me. I've gone several thousand miles on this bike. No tandem, no Theracycle, no new equipment.

Soccertese, of course you can express all the skepticism you want! But the commitment is not financial to the extent that you describe. It does take a lot of determination and the willingness to set incremental goals and work steadily toward them. It's not for everyone.

Right, I get your skepticism, but my point is that because of these research deficits,we need more in situ or anecdotal evidence to refute or support the results. This would not supplant controls, obviously, but I think parallel observational studies or surveys may give PD research more heft. I think Nan is living proof that it is not just placebo. If you happened to have read her earlier posts, she will be the first to say that if she slacks, symptoms are back. I'm not sure if that is still the case.


I am agreeing with you here as well. There is too much variability and uncertainty in this; most everything is clinical observation. I take most of what is published with a grain of salt. How can you have any scientific control if you have no real scientific measure?

I guess, I am meaning "skeptical" in general. Why is that negativity automatically transferred to Nan's experiences? How can we just overlook or ignore people in the real world and their actual experiences? You mention that someone could take extra meds and skew results. This is no different from lack of control in ELLDOPA trials. Both then are flawed.

I see research in PD as one giant house of cards anyway. Whether it is six people, 500 trial participants, or a neighbor's friend, they all carry equal weight in my book. When they can show me results of a trial centering on taking Azilect daily for 8 years vs. Curcumin and at least one person on Azilect can match Ron Hutton's med decrease, then I'll be convinced that maybe we should only be using evidence based medicine as our treatment model. As it stands now we are overlooking many potential avenues of treatment and people suffer needlessly because of it (off label meds).

I am saying given the limitations in trial design with PD (placebo and lack of scientific measures)... In light of this, should we not look to what people share with us as their experience in real life as maybe something that might be considered essential in a new research model or paradigm?

I was at a conference in Sarasota where the person from the Cleveland Clinic that did the study gave his presentation. I recently bought a spin bike and ride it daily at 20 mph. This is as close as I can get to forced exercise since you must continuously pedal. I set the resistance to wear I am at 75% target heart rate at the peak of my workout. So far seems to help, either placebo or not I am off less. Go figure??>>

Jim, You're doing great! If you can ride for an hour 3 times per week, 10 min warmup, 40 min at 80-90 rpm, 10 min cooldown and keeping your heart rate within 60-85% for the 40 min part, you'll have all the pieces in place. Like you, I like going every day, or nearly every day.

Nan, thanks for those great tips. I'm going to look at Craigslist for the Cycleops. I wish I had your great physical therapist & great bike shop consultant to make adjustments; need to resolve that pesky hip problem! I do believe the recumbent stationary is aggravating the hip joint problem.

just to give an anecdote. i played a lot of soccer, ran a lot and developed severe knee pain. my GP took xrays, couldn't see anything wrong, told me to rest. went to a sports medicine doc at same organization. looked at my xrays and instantly identified bone spurs. gave me exercises to strengthen muscles which solved the problem.

ruptured a disk in my back. My MD referred me to neurosurgeon who scheduled surgery. saw an ortho who told me surgery wasn't necessary. took that advice and fine 20 years later.

rule #1 on this board imho should be "DO NO HARM". my point is if you can afford it, find the best doc you can before you potentially do more harm. why risk it?