Concerning the results from ** about Jay Alberts CYCLE trial that Jeffreyn had a link to:

Even though the words and the UPDRS ratings seem to imply there's no difference between FE and VE, I think I see a big difference. When they looked at the functional mri for the FE, 4 of the 6 tested had increased connectivity between the motor cortex and the Thalmus. For the VE set only 2 of the 6 had an increase. Am I understanding that correctly? If we really want to reverse things we need to change the Brain so it seems like FE is still preferable if possible.

I saw Pam's (Quinn?) interview with Nan and just started a few weeks ago. Just curious how many out there have been sticking with it. I saw the post about Grey's Anatomy and just started watching it while pedaling. It looks like Netflix has 15 seasons so at 5 biking sessions a week (I do a weight lifting class the other 2 days) I should have entertainment for more than a year. :-)

Hi Chris,

Welcome to the forum.

I think your understanding of the functional MRI results from the CYCLE trial is correct. Hopefully they will discuss these (and other) results when the final report is eventually published.

It is hard to know how many are still doing cycling according to the Alberts/Ridgel protocol. I'm currently doing about 30 to 40 minutes of unassisted stationary cycling first thing every morning.

Jeff

The Cyclical Lower-extremity Exercise for Parkinson's Trial (CYCLE):
The Cyclical Lower-extremity Exercise for Parkinson's Trial - Full Text View - ClinicalTrials.gov

the goal is to produce proteins that rescue damaged neurons in the brain and/or stimulate neurogeneration, this can be done via many different exercises. here's 2 examples:
Parkinson's disease and intense exercise - YouTube
Parkinson's Disease - Vigorous Exercise. Neil Sligar June 211 - YouTube

as far as what i do, i was diagnosed 15years ago and don't exercise as much as i should and my progression has sped up. i was diagnosed at 48, at the time was playing men's soccer and coaching youth soccer. when playing in a 90min soccer game, after the game was over my pd symptoms, which were mild obviously to play soccer, my symptoms were noticeably reduced but didn't last more than a day. i slowly progressed though even with this vigorous exercise. so i think the benefit will peak when doing vigorous exercise but it will help slow down progression. when i was diagnosed my doctors said take the meds you need to exercise, there will be a "cure" very soon. and back in 2002-2005 there was a clinical trial using your own stem cells from dr. levesque which had great phase1 results but went nowhere
Renowned Medical Research Pioneer Michel Levesque, M.D. Addresses U.S. Senate Committee On Stem Cell Therapy Debate | Business Wire.

my point is you are doing absolutely the right thing concentrating on exercise and slowing progression as much as you can until the "cure" is found.

Thanks for the links about vigorous exercise. What Dr. Hageseth was doing looked like a lot of fun--I'll have to keep it in mind if I find I need to change things up.

I also took note of the fact that exercise may only do so much. I agree, and that's why I'm also doing a few other things based on two books I've read.

Concerning diet, I decided to follow Dr. Terry Wahls most aggressive diet Wahls Paleo Plus, that she describes in The Wahls Protocol. She's the Doctor with MS who was able to achieve major improvements through changing her diet. Most Doctors seem to recommend a heart healthy diet or a Mediterranian diet. I'd already been eating extremely healthy for most of my adult life (except I didn't go for organics) so I figured it was worth experimenting with something different. I've been on it a little over 6 months. It's easier to stick to the more I'm on it. After I had been on it a few weeks I noticed a muscle in my shoulder feel as if it was getting an electrical pulse. Nan mentioned a similar electrical feeling twice in earlier posts in this thread. After that pulse then I had less pain in my shoulder. I have since had pulses in other places with less pain to follow, so I think it's having an effect.

The other book that influenced me is Norman Doidge The Brain's Way of Healing. In there he discusses many modalities. I've been using red and infrared LEDs that my husband mounted in an old bicycle helmet and also a red and infrared laser that I apply to my brainstem, cerebelum and motor cortex. Finally in the book many people had success with a PoNS (Portable Neuro Stimulator). This device stimulates the tongue which has a pretty direct connection to the brainstem. The theory is it helps the brain achieve homeostasis. (A woman w/ PD got rid of her tremors after using the PoNS for 6 months.) Since the FDA didn't approve it yet I'm using a TENS to try and do the same thing. I started the Laser in July, the TENS in Sept and the LEDs in Oct. I know it all sounds a little flaky, but I've been seeing improvement in my gait -- less people asking if I hurt my knee because I'm walking funny.

Does anybody else have alternatives they're trying with success?

here's some food for thought. shortly after i was diagnosed i had all my mercury containing fillings removed and replaced with ceramic fillings. i didn't do this because i was worried about the mercury - dentists have no higher incidence of pd than the general population - but because my dental insurance was expiring. 2 days after removing the amalgams my pd symptoms were worse. so i searched the internet on mercury/pd and it seemed there might be a link so i decided i would try to remove mercury. i knew a lot of pharmacists, my job was installing/maintaining pharmacy software and got the name of a MD who did chelation via IV's. she felt she could help me and i did about 4 IV's whose composition was secret. at $125/IV and no evidence it would help i found a cheaper method, a sulfur containing amino acid which i could get OTC and another drug that required an RX. To make a long story short, after a month of taking these drugs EVERY 4 HOURS i quit. i also tried IV glutathione, low dose naltrexone, and numerous other supplements, i might have quit too soon but my pd progressed slowly which might be due to vigorous exercise, dunno. my point was that whenever i spoke to anyone wanting to give me an alternative med treatment, they were sure it would help even though they couldn't name one person who had positive results but they sure would like to help me keep on trying different supplements, maybe one would help and they would need to see me quite often. and keep in mind there is a huge placebo affect with pd'ers. with social media, if some alt treatment worked someone would have tried it already and everyone would be doing it imho. exercise works so a lot of people are doing it, when the first article on forced exercise on tandem bikes came out it showed up here almost immediately as you can see from this thread. also keep in mind that EVERY clinical trial trying to put genes or cells or compounds that might stimulate nerve growth have had highly successful phase1 results but failed miserably in phase2 which took into account placebo affect. very few compounds pass thru the BBB so surgery is required to get something inside your brain. not to rain on your parade but be careful.

Soccertese,

Thanks for sharing your experiences. I did try both Neurolink and Neural FB and then stopped when I concluded they weren't doing anything for me. The diet, LEDs, Laser and Tens are all things I own, so the only cost is my time so I'm willing to experiment. If there's not great cost or big side effects I'm ok with trying something if I've heard directly from the person who was helped, even if it hasn't been proven. But I realize there are a lot of people out there willing to sell you something with no good reason.

In your earlier post you mentioned you haven't been exercising as much. Is everything ok?

Chris

LOL, nothing has been ok since i was diagnosed. thanks for the question, i don't have a good reason except apathy and some rigidity in my feet but i can still exercise sitting down, just boring.

This time of year for me is always the hardest, with the sun setting earlier by 1-2 minutes every day. I still work full time, in an office with no windows. I'm not a morning person so that means I need to do my exercising after work. A few things help. I try to do "Ab Ripper X" (the ab workout from P90X) once or twice a week. In the video he says "How do you feel that day? Do what you can." So on days when my energy is lower, with whatever exercise I'm doing, I remind myself of that. Also, I know I always feel better after I'm done. I find I do better with rules of what exercise I will do when. Then I don't need to use willpower to get going, knowing I'll forgive myself if it's not the best workout because other days will be better.

As Jeff said in an earlier post, for me also cycling is not my passion, but it's a workable routine. I use Grey's Anatomy to distract me to avoid boredom. Up until the middle of June I was taking ballet classes 3 times a week with the local pre-professional ballet company. That's my passion. But there were getting to be more and more things I couldn't do, to the point where the frustration was starting to surpass the joy.

Jay Alberts' new trial has begun recruiting PwPs.

"Subjects in the home exercise group will receive an indoor stationary bicycle delivered to their home for a 12 month exercise period."

Pragmatic Cyclical Lower Extremity Exercise Trial for Parkinson's Disease - Full Text View - ClinicalTrials.gov

A document detailing the design of the CYCLE II study has recently appeared.

Effectiveness of a Long-Term, Home-Based Aerobic Exercise Intervention on Slowing the Progression of Parkinson Disease: Design of the Cyclical Lower Extremity Exercise for Parkinson Disease II (CYCLE-II) Study:

Effectiveness of a Long-Term, Home-Based Aerobic Exercise Intervention on Slowing the Progression of Parkinson Disease: Design of the Cyclical Lower Extremity Exercise for Parkinson Disease II (CYCLE-II) Study | Physical Therapy | Oxford Academic

(Abstract only - the rest is behind a paywall)

Also of interest (maybe) is a recently released report on a Cleveland Clinic study involving the Pedaling for Parkinson's program.

Individuals With Parkinson Disease Are Adherent to a High-Intensity Community-Based Cycling Exercise Program:

Individuals With Parkinson Disease Are Adherent to a High-Intensity Community-Based Cycling Exercise Program - PubMed

(Abstract only - the rest is behind a paywall)

There is also a Supplementary Video where one of the researchers talks for about 3 minutes while standing beside a Peloton bike.