Dear Imad,

Thanks for your update. Your news is just so exciting to hear! I"m passing your experience on to Dr. Alberts.

Last Saturday there was a PD Wellness conference here in Seattle. My friend from Denver, John (who is also going to climb Kilimanjaro this summer) joined us for the conference. The lead speaker talked about the placebo affect, with compelling statistics to show that our minds can do amazing things if they believe in the efficacy of what interventions they are doing. For example, in tests, some people were given the real drug and others not; some people were given acupuncture and others a fake procedure, etc. But if the people believed they were getting the real thing, their bodies reacted as though they were, with effects lasting as long as two years! After his talk I asked if he knew about Pedaling for Parkinson's and Jay Alberts' work. He was very familiar with that. I asked if the results were due to the placebo effect and he stated "absolutely not The changes due to cycling are real." From my own experience, I think that the placebo effect adds to the positive benefits of cycling. When I get feedback like the piece you just wrote above, it's like getting a shot of dopamine. I can feel a tangible happy effect from knowing that what I'm doing is helping someone else.

The third speaker of the day talked about mentally controlling symptoms through guided imagery. (She is a psychologist.) Like you, my tremor is my most annoying symptom and is the only one that has gotten a little worse over time. I closed my eyes and followed her imagery and the tremor stopped. I kind of wonder if I fell asleep, but it seemed I was awake the whole time. As soon as I became fully conscious that it had stopped, it started again. I didn't know what to make of it, except that deep breathing and focusing fully on something else made it go away. That's how I get it to stop enough at night to go to sleep too.

Did you look at the cycling video I posted? The second one, about snowshoeing as training for Mt. Kilimanjaro is on You Tube with the search words of Parkinson's Disease, PFP, Mt. Kilimanjaro. Training is getting a little silly. But I can hardly believe I can do all that stuff at 65 with PD diagnosed in early 08. I'm in better shape now than I was 15 years ago.

Nana:
I watched the video and was amazed by your great shape and look. Who could guess that you have PD? not 1 in a million, I say.
I would be very pleased if you pass my info to Dr. Albert. I have been having very rough time with neurologists in Calgary who did not show any interest or sympathy with my exercise, diet and psychological issues.
My very best wishes for your Klimanjaro venture.
Imad

Three years ago my doctor watched me walk 10 steps and told me I have PD. I shuffled, tripped, was off balance, hand clenched, arm straight at my side, neck could move no more than 90 degrees. After cycling, my doctor told me that if he didn't know I have PD, he wouldn't know. I'm certainly in much better shape. BTW, the other cyclist, John, is an early onset. He's had PD for nine years and is in much better shape now than when I met him two years ago.

Another person from Calgary contacted me and shared the same frustration with getting medical help there. I'm going to suggest she join this list and contact you if she wishes.

Thanks for your kind words.

Nan

I wanted to say that if I didn't hear of all these experiences, I would be pretty despondent right now. I have never had one doctor recommend exercise...all because there is not official 'evidence' that it helps us heal and/or slow progression. Neurology is so mired in traditional thinking. We know our condition is degenerative and for the longest time it was thought that as adults we do not grow new neurons; that was proven false in the late 80's in two key pivotal studies. I know that we'll never grow as many neurons as we need to catch up and take over this disease, but we do generate new neurons and exercise, I have read, is one of the key ways this happens. How else can we explain these amazing results.

It's like our doctors do not want us to even try and help ourselves. I approached my neuro with info on different diets that might be beneficial to us and I receive nothing positive or very little in response; I know that
it will not alter my disease, but even just a cursory "it can't hurt" would be something. I am not asking him to manage a diet for me, but just a few words of encouragement or even some tips or something positive for a change. I left feeling so deflated and defeated.

After hearing again from Nan (let me know when you'll be in MI again, please) and re-reading Imark's results, I just figured "enough". I was concerned about getting the right kind of bike, obsessing about RPMs,, when the important thing for us all is that we get moving and keep moving.

Out came the dusty, encased in plastic Bollywood Booty DVD; this is indeed an unopened purchase made last year. I am most certain that I did not hit the sweet zone that correlates to 80-90 rpm, but I did have a lot of fun and was challenged enough by the choreography to boogy again the next evening. I do notice that hours later I don't stiffen as much and my symptoms are milder as meds wear off; this may be placebo effect, but for now just the difference in how I feel is enough to keep me hooked.

Thank you for the inspiration and the swift kick I needed to set me on the right course.

Laura

Hi Laura, First, I may be in Michigan in April. I'll let you know as my plans progress.

Your post gave me lots of food for thought. My husband and I talked it over at great length last night. He had a powerful insight which I would like to share with you. One of the issues that he notices most often is the change in my local anxiety since I've had Parkinson's. Where is I used to exhibit normal concerns about new issues, since having Parkinson's my level of anxiety is sometimes off the charts. At one point I even had a terrifying panic attack, something which has never happened to me before, and I hope never happens again.

Why the anxiety? I'm not a psychologist or psychiatrist, so these are just my personal thoughts. As a teacher, grades seven through the University, I noticed the same problem exhibited in all ages of students. The fear of failure. As long as they didn't try to do their best, they could always tell themselves that if they did try they knew they would be successful. But there was always a fear in the back of their minds that came out kind of like this: what if I try my best and I'm not successful? That fear and anxiety caused many students to operate far below their potential. And what defined success? Were they looking for outside approval from the teacher or from their classmates or were they looking for an internal sense of satisfaction at a job well done? This issue came up again last year during RAGBRAI. One of the participants was an early onset PD patient named Andy. Andy was diagnosed with PD at age 31. Unfortunately, he argued had asthma and Crohn's disease. And he was only able to ride a recumbent tricycle, not an upright bike or a tandem. He said his goal, his measure of success, as riding the entire 450 miles across Iowa. Before the ride he told himself that anything less than that would be failure. One day on a ride it was pouring rain and very cold. Writing about a foot above the pavement, and he was not only being soaked by the rain but he was picking up the splashes from all the other riders. He didn't have a jacket and at one point he realized he was getting hypothermic. He called for the SAG wagon, which meant he didn't complete the entire 450 miles across Iowa on his bike. We talked about it later and he realized that his measure of success was quite wrong. The fact that he had the courage to try was the most important measure of success, not biking every mile across Iowa.

There have to be thousands of people with Parkinson's who are afraid to try cycling because they are afraid it may not work for them. Getting over the anxiety is 90% of the battle. Although dancing, singing, swimming and other activities may help people with Parkinson's, the only activity that has been proven through research to make a difference is cycling. You don't have to have the best and latest bike. You need to have a cadence monitor on your bike to keep within 80-90 RPMs, and you need a heart rate monitor to make sure you stay within 60 to 85% of your maximum heart rate. Then you need to define success as taking small steps toward a larger goal. It's scary. But I know you can do it.

What an inspiring thread! I have simply got to get off this computer more and exercising more! Paula has been preaching to me for a year.

It really does make a differennce, and I have little excue, except for the pain that I experience regularly. But who knows; exercise may help with that, too. At least exercising might get the toxins moving OUT of my body rather than churning around in there for a week before moving on!
(I'm referring to elimination via the digestive system, perspiration, drinking more water, etc. )

I always wonder when I make a trip to a conference why I do so much better than anticipated. Well, here's the proof - I walk more and I'm not as sedentary. And of course there is more mental stimulation.

Thanks for all of this healthy discussion here. Now to just heed the word!
Peggy

the only cycling research that has been published is a very small study by jay roberts, 5 subjects in treatment group? when will the results from his 2nd study be published?

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.
Key Words: Parkinson’s disease; Exercise; Manual dexterity; Motor control; Grasping forces; Movement disorder

Ten patients with idiopathic PD (8 men and 2 women; age
61.2 ± 6.0 years, Table 1) were randomly assigned to complete
an 8-week FE or VE exercise intervention. Following the
8-week intervention, patients were instructed to resume their
pre-enrollment activity levels; follow-up patient interviews
indicated compliance with this request. Patients in the FE
group exercised with a trainer on a stationary tandem bicycle
(Figure 1a), whereas the VE group exercised on a stationary
single bicycle (Schoberer Rad Meßtechnik [SRM]). The work
performed by the patient and the trainer on the tandem bicycle
was measured independently with 2 commercially available
power meters (SRM PowerMeter; Jülich, Germany).

I don't know when Jay Alberts' next article will be published, but I know that his research has been taking place at the Cleveland Clinic and in Las Vegas. He has assured me that the outcomes are the same as they were with the initial research. In addition, we are experiencing the same levels of success with the informal Pedaling for Parkinson's programs here in Seattle and with individuals across the United States. At this point a global organization is considering adopting Pedaling for Parkinsons as one of their core programs. Based on his work Dr. Alberts now has several million dollars in research funding and is collaborating with neuroscientists from other countries. I think we can safely say that the proof of concept has been well-established.

The difficulty still lies in getting over the fear of failure.

I wish you the very best.

i find it unusual any researcher would share the results of a study in process. i hope it gets the same results.

Normally, I appreciate your reality checks, Soccertese, but why the downer here? It's not like we have much hard science to go on in this disease in the first place. With so few people who are willing to participate in clinical trials, we're lucky we even have five humans to go on...it at least shows there is potential benefit beyond our furry little friends.

Why is what is going on in the trenches of PD, those of us who live it ignored and worse negated? Why does just reading anecdotal evidence and reading the words of someone who has not only transformed in a way herself, but continues to see FE work in scores of other PWP not count. Is the medical community saying that she is making it up because there is yet no clinical trial of 1000 PWP supporting it? And lets take a closer look at those blockbuster PD studies like ELLDOPA. Lots of expertise, loads of money,big, important study all for naught. The results were skewed by the fact that several participants did not even have idiopathic PD. Oops. They didn't even PET scan people to confirm that they belonged in trial in the first place? We don't have much of a standard or scientific control. Until we have biochemical measures in place, I don't see how we can cast a critical eye at Dr. Albert's trial design.

If there is anything I have learned from this disease is that if only five or maybe even thirty people experience the same thing as reported by research, than there are many more going through the same thing. When I became pregnant with my son, I had only a handful of case studies to go on that said pregnancy may permanently worsen the condition. Well, I did the math and figured 70% worsened but that was only 30 women, so I took a leap of faith. Turns out that small sample size is part of a much larger number...more recent research supports that it can make us worth. In my unscientific study I have met at least 10 YO women who have also experienced disease progression as a result of pregnancy. My point is as patients with so little to go on, we can't afford to ignore or negate the anecdotal evidence.

Further, clinical design and scientific control or measure can hardly stand alone as the paragon of all we know of PD when all we have to measure disease progression is a paper and pencil rating scale. Most everything about having PD is anecdotal, from diagnosis to monitoring disease progression. The UPDRS is a snapshot of how we are for an hour at the doctor's office every six months, and we must accept that as hard evidence of disease progression? Essentially I can control my rate of progression by opting not to report new symptoms to my doctor or in creating new ones that are not there unless I go through a drug washout; according to my doc I still show no signs of PD when on meds. It also fails to account for patients like Ron Hutton who has essentially perhaps altered his disease course through curcumin; I certainly haven't read of any similar experiences with Azilect. Who is recording the cases of people able to cut their med intake in half like Ron or altogether like Nan? A lot could be told about what is and isn't working by reaching out to the patient community.

Anecdotal evidence is actually a standard criterion in establishing a disease as auto-immune...it seems the medical world embraces it when it suits them; when they can't admit there is nothing else to go on. Well, I'd say with PD we are well beyond that point. Fact is that our clinical trials are not necessarily all that reliable from the get go, and I think that if they figured out a way to include us in solving this mystery, a way they deemed as statistically reliable, we would be that much closer to getting rid of this disease forever.