Pedaling for Parkinson's...and dystonia

soccertese · 09-13-2012, 11:03 AM

Quote:

Originally Posted by Nan Cyclist

For Laura and Soccertese:

Jay thinks that the mechanism is neuroregeneration, i.e., the part of the substantia nigra that is still alive somehow is creating new neurons due to the forced pace cycling. Why or how is not at all clear. This is an hypothesis, not a conclusion. I type this with great hesitation as it is not my place to speak for him.

Laura, I think you're spot on. What are the commonalities and how can they translate them into treatments?

To respond to pwpboy:

I have two take away points on this:

1. If you sit on your duff waiting for the perfect definitive "best" form of exercise, you're shooting yourself in the foot. Choose a form of exercise that you like and will make part of your daily life, then DO IT!

2. The exercise that has been clinically shown (although with a small sample) to have an average of 35% reduction in PD symptoms is forced paced cycling. If you can safely do that, and WILL do it consistently, go for it. Medicine lasts for hours at best, whereas forced pace cycling has residual benefits of up to four weeks.

To rempatterson:

Sorry I wasn't clear. He said that 1 means that I have unilateral symptoms: everything happens on my right side. Now and then my left ring finger cramps for a moment, but the few symptoms that I still have are on the right. My penmanship has gone from bad to scratch; typing with the right hand is compromised; needlework is much harder, i.e., all fine motor skills with the right hand are compromised. The rest is pretty good.

improvement has to be at the cellular level, otherwise how can you explain the long lived affect? but the "gain" seems to be just like with muscle cells, use it or lose it, i.e., once you stop FE, within 4 weeks the benefit disappears. anxiously awaiting results from 2nd trial, first trial had very small number of participants. that said, i use a recumbent bike as often as i can but not at the pace described in the trial. i'm still getting worse but in my 12th year.

Nan Cyclist · 11-03-2012, 05:02 PM

This is just a little update on my own condition and where we are with Pedaling for Parkinson's. We have just returned from a six-week road trip. I took my bike along and was able to set it up on the trainer several days each week. But there was no consistent biking until last two weeks of the trip when I was able to ride at least five hours a week, even though it was on the trainer. With the intermittent cycling I could feel that I was getting weaker and more compromised almost daily. When I was able to resume the five days a week cycling, I immediately became stronger, although I still see a marked change from when I started out. Particularly my balance and stamina are quite different. That said, I was able to wade in the Madison River in Yellowstone Park for hours at a time frightening the fish.

During the extended trip I took a little side journey to Chicago for a few days to give a couple of talks, which were very well received. It's exciting to see people get turned on to the idea of pedaling to help themselves out. We've received numerous requests for licensing agreements to start the Pedaling for Parkinson's program in various states.

Each day it gets all easier to cycle for the hour, but I doubt that I will be taking any huge trips in the next year and a goal is to ride RAGBRAI on a tandem this next summer rather than on my solo bike. At age 67 I'm giving myself permission to slow down a little bit. It's good to be back reading your posts.

Nan Cyclist · 11-24-2012, 01:43 PM

Thanks to Soccertese for posting the article he found from a year ago.

One thing that is seldom mentioned regarding PD is the effect it has on cognition and memory. The pills we take are sometimes worse than the disease, or it appears that way. Since I've been cycling, I've been able to reduce my ReQuip XL from 8 mg to 4 and to stop taking Azilect. At the end of October my ReQuip prescription was refilled with generic Ropinirole, same dose. I realized I was getting angry, depressed, lethargic over the next couple of weeks. I wallowed. Then I wondered if it might be the change in the drug so I asked my doctor to get me back on ReQuip XL. I've been on it now for 5 days and feel mentally back to normal. My physical self was much less affected than my mental state. Go figure.

On the PFP at the Y front, more and more Ys and other fitness facilities are requesting applications for licensing agreements.

Five years ago, when I was diagnosed, I heard almost nothing about exercise for PD. Now it's in nearly every article. Research is moving beyond PD to stroke victims, people with ALS and dementia. Even the NFL is in the mix.

Today is our granddaughter's second birthday. Twelve days ago our grandson turned two. What better reasons to get on the bike?!

Nan Cyclist · 12-10-2012, 04:18 PM

Just to bring all the sheep into the same pen....

A group of Dr. Alberts' staff gave a poster recently covering results of a cycling trial that included 26 patients. Here is the link to the poster. http://rsna2012.rsna.org/search/even...ue&printmode=1

Soccertese also posted a link to the next pedaling trial that has been approved for 100 participants. http://clinicaltrials.gov/ct2/show/NCT01636297

Since that is trial number 3, I am hopeful that when the results are analyzed, Dr. Alberts' motorized bike will be verified as the gold standard for cycling at the required cadence of 80-90 rpm while replicating the physics needed to ensure maximum benefit for us pwps.

soccertese · 12-10-2012, 04:39 PM

Quote:

Originally Posted by Nan Cyclist

Just to bring all the sheep into the same pen....

A group of Dr. Alberts' staff gave a poster recently covering results of a cycling trial that included 26 patients. Here is the link to the poster. http://rsna2012.rsna.org/search/even...ue&printmode=1

Soccertese also posted a link to the next pedaling trial that has been approved for 100 participants. http://clinicaltrials.gov/ct2/show/NCT01636297

Since that is trial number 3, I am hopeful that when the results are analyzed, Dr. Alberts' motorized bike will be verified as the gold standard for cycling at the required cadence of 80-90 rpm while replicating the physics needed to ensure maximum benefit for us pwps.

thanks for the link, i also hope 3rd trial is successful.
this showed brain changes but as far as i can tell they didn't measure quality of life improvements? just wanting to understand the whole project, was it mainly to rule out placebo affect and to show actual changes to the brain rather than just some "endorphin" type affect or just better conditioning the cause of the improvement?

Nan Cyclist · 12-12-2012, 11:36 AM

They are not measuring quality of life changes. They are looking for measurable physical changes in the brain that can be attributed to the FE cycling at 80-90 rpm over specific periods of time. Anecdotally, quality of life is another great outcome, but it doesn't show up on the brain scans.

Interestingly, when I recognized that I was getting non-motor benefits from cycling, I went through my journals for several years and noted when I complained about physical and mental problems. Shortly after starting cycling the mental problems dropped to zero. Physical problems were greatly reduced which probably had an effect on the non-motor as well.

soccertese · 12-14-2012, 09:48 AM

Quote:

Originally Posted by Nan Cyclist

They are not measuring quality of life changes. They are looking for measurable physical changes in the brain that can be attributed to the FE cycling at 80-90 rpm over specific periods of time. Anecdotally, quality of life is another great outcome, but it doesn't show up on the brain scans.

Interestingly, when I recognized that I was getting non-motor benefits from cycling, I went through my journals for several years and noted when I complained about physical and mental problems. Shortly after starting cycling the mental problems dropped to zero. Physical problems were greatly reduced which probably had an effect on the non-motor as well.

so if they didn't measure quality of life, is their first study with less than 20 volunteers, the only scientific study testing the hypothesis that forced cycling over time can provide significant improvement in quality of life lasting beyond a day?

pegleg · 12-14-2012, 02:05 PM

Quoting: "Today is our granddaughter's second birthday. Twelve days ago our grandson turned two. What better reasons to get on the bike?!"

Amen! Those grandbabies make it all worth everything!
Even stretching can help rigid muscles loosen up.

Nan, it was great to meet you again and sit by you at our meeting last week in New York. What you are doing through promoting cycling is so validating. You are empowering patients, even if they are empowering themselves through a change in their thoughts. I don't know how anyone can survive without a hopeful attitude.

Peggy

TrishaPDX · 12-15-2012, 08:47 PM

Jan's neurologist just rx'd her for Pedaling for Parkinson's at the Oregon Health Science University (OHSU) outpatient rehab clinic, where (I just learned) a therapist trained in the Cleveland Institute's methodology has been offering the spin for about a year now. Oh boy!!!

Nan Cyclist · 12-29-2012, 07:00 PM

Well Peggy, I now have a third reason to bike: Levi, born 12/23 just a few minutes short of Christmas Eve.

I've been reading about the history of cancer, The Emperor of All Maladies, and I'm struck by two thoughts related to cancer that are equally applicable to PD. They treated polio with iron lungs until they developed a vaccine, smallpox was eradicated with a vaccine, etc. etc. The various cancers have been treated for decades by addressing the symptoms rather than the causes. Only relatively recently have efforts been made to discover causes (note plural) of various kinds of cancer and, of course, there is no cancer vaccine. I know I'm mixing apples and oranges by discussing viruses along with other causal factors. But the simple message that I keep thinking about is that part of the research community is going hell bent for leather to help us cope with the symptoms with programs like PFP, Tango, Tai Chi, and procedures such DBS etc and the other part is doing their best to figure out what causes this buffet of symptoms that affects each of us in a rather unique manner.

I give thanks to all of these folks who are trying so hard and to all of us for asking questions, participating in research trials and sharing our stories and understandings in places like this.

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