Has anyone heard of an e-trainer? In the promo materials they say it goes up to 75 power assisted. It just misses the mark by 5rpm for 80 to 90 FE.

I've had a look at the eTrainer webpage, but I can't find anything to indicate that it has anything other than a "passive" mode (i.e. it always does all the work). In such a mode, it seems to me that you would not be able to get your heart rate up into the required range of between 60% and 85% of your HRmax.

But they do use the word "assist", so maybe they just don't explain it's capabilities very well. If it supplies, say, 60 RPM, and lets you supply an additional 15 RPM, that might be close enough (assuming that gets your heart rate up into the required range).

Thanks for all the info. Will get to the page, and perhaps the manufacturer, of the E trainer. I will be glad to get the cardio workup to help me see where I am.

Another thing I noticed is that the eTrainer looks very light in weight, and since it has no seat, your weight would not be available to help keep it in place.

This may not be an issue if it is only used in passive mode. However, if it is used in an active mode (assuming this is even possible), you may need to bolt it (and the chair you sit on) either to the floor, or to, say, a large, flat piece of wood placed on the floor.

Never would have thought of that! Thanks.

I'm back from two weeks of rafting down the Colorado through the Grand Canyon. At one point (the narrowest point of course), I actually swam across the Colorado. Never thought I would do that! Other than seven dislocations of my meniscus, and therefore not being able to climb in all the slot canyons, it was a great trip. I've had my knee checked out and have been given the go-ahead to continue cycling. The first three days on the bike were in the 60s rpm and 35 minutes, but I expect to go longer and more quickly today. I'm eager to get back into my regular cycling routine. Amazingly enough, other than moving more slowly than some, my PD did not get in the way of participation in the trip. One evening I gave a presentation on PD. Six people came to the start and within minutes nearly all of the 28 were there, staying well into the dark for q and a. Pedaling trumps PD yet again!

I made a video of the Grand Canyon trip:

https://m.youtube.com/watch?v=nYAQ5ze9hDI

Nan, thanks for sharing the video which was inspirational and enjoyable! Jo

Progress in research on interval-training techniques
 

Some more research has recently been done on the application of interval-training techniques to cycling, for the benefit of PwPs [1].

For this trial they chose twelve 30-minute sessions, each session including a 5-minute warm up and a 5-minute cool down. For each of the 20 minutes in the middle of each session, participants were asked to pedal as fast as they could for 15 seconds and then pedal at a comfortable pace for 45 seconds. A stationary recumbent bicycle was used and the resistance was set to the lowest level. Significant improvements were recorded for each of the motor-related tests performed (e.g. 10-meter walk, timed-up-and-go, etc.).

The authors acknowledge that there is now a need for a separate study to compare the benefits of interval-training techniques with those of steady-cadence cycling.

[1] Mehmet Uygur , Maria Bellumori & Christopher A Knight (2017): Effects of a low-resistance, interval bicycling intervention in Parkinson’s Disease, Physiotherapy and Practice, DOI: 10.1080/09593985.2017.1359868

Effects of a low-resistance, interval bicycling intervention in Parkinson's Disease. - PubMed - NCBI

(abstract only - the rest is behind a paywall)

It has been over six months since my last post. Six months of discovery. It turns out the problem with the repeated dislocation of my knee had to be addressed surgically. On Sept 15 the surgeon worked on my meniscus. So, since June 6 until now I have been trying to rehab both the toe joint that was replaced the knee surgery. The PT has not always been compatible. The bottom line is that i was not able to ride my bike consistently for all that time. What did I notice? Movement: much stiffer body, compromised balance resulting in two falls (I had had none prior), difficulty getting off the floor, general weakness. Executive functions: difficulty following directions (cooking and driving), reading recall, preparing and giving presentations. Cognitive: apathy, getting cognitive mixed up with exec functions, understanding computer instructions, speaking in coherent sentences. (No-one complained, but i could feel the difference. My leg muscles atrophied significantly as did my endurance. For three days in a row I've been back in the bike saddle again, much to my relief. Although I'm certainly not where i was in June, it feels like the ship is turning, even if just a bit.

Results from the CYCLE trial are finally available!
 

"There were no significant differences between the VE [voluntary exercise] and FE [forced exercise] groups."

Wow!

Results from the Randomized Controlled Trial Cyclical Lower Extremity Exercise (CYCLE) Trial for Parkinson’s disease:​
Results from the Randomized Controlled Trial Cyclical Lower Extremity Exercise (CYCLE) Trial for Parkinson’s disease: 1543 Board #4 May 31 1

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

What does it mean?
 

At first glance, the results of the CYCLE trial seem to say that there is nothing "special" about high-cadence cycling (i.e. it is not about the bike or the pedaling, it is about the aerobic exercise!). Or maybe the results are saying that there is a fundamental difference between the use of a powered bicycle and the use of a tandem bicycle?

Meanwhile, research on (dynamic) high-cadence cycling continues at KSU (Angela Ridgel et al.).

"Individuals (N=17) completed three sessions of high cadence cycling, on a custom motorized stationary cycle, consisting of a 5-minute warm-up at 50 revolutions per minute (rpm), 30 minutes of high cadence cycling between 75-85 rpm, and a 5-minute cool down."

The Effects Of High-Cadence Cycling On Emotional Recognition In Individuals With Parkinson’s Disease:
The Effects Of High-Cadence Cycling On Emotional Recognition In Individuals With Parkinson’S Disease: 48 Board #249 May 3 11

I've also seen Ridgel et al. use the term "dynamic cycling at a high cadence" to refer to their version of "forced exercise". [1]

[1] The Efficacy of Dynamic Cycling in an Individual with ALS: A Pilot Study:
The Efficacy of Dynamic Cycling in an Individual with ALS: A Pilot Study

I'm very glad to see that there may be no difference between forced and voluntary cycling. After starting on a motor assist bike that my husband rigged up, I became too good for it. So I started on a regular stationary bike and contacted Dr. Alberts' office to see what was the best approach. They suggested continuing without the motor assist, staying down at 80 to 90 rpm, keeping my heart rate up by increasing the resistance,and cycling every second day. Which I've done for over a year now.

RecentlyI've been watching Grey's Anatomy while I pedal and a couple of times have gotten so into it that I pedal longer. It seemed to help more, so now I'm thinking that more than 45 minutes with a 5 minute warm-up and cool-down might be even better. Anyone have any experience with longer times or maybe more frequent times?

Thoughts on the CYCLE trial results
 

Perhaps the results of the Sparx trial give us a hint as to what might have gone wrong in the CYCLE trial.

In the Sparx trial [1] participants were assigned to one of three groups: control, moderate-intensity treadmill exercise (60 to 65 percent maximum heart rate) or high-intensity treadmill exercise (80 to 85 percent maximum heart rate). After six months researchers found that the motor symptoms of only the high-intensity group had not progressed.

In the CYCLE trial [2] and the earlier (smaller) trial [3], both the VE and the FE groups were instructed to maintain their heart rates within the range of 60 - 80 percent of HRmax.

Hypothesis: Perhaps in the CYCLE trial the average heart rate for both groups was up near 80. Perhaps in the earlier trial the average heart rate for only the FE group was up near 80 while the average heart rate for the VE group was down near 60.

Unfortunately, references [2] and [3] do not contain the data needed to test this hypothesis.

Bottom line: We now know (from the results of the Sparx trial) that a heart-rate range of 60 - 80 percent of HRmax is just too large.

[1] Effect of High-Intensity Treadmill Exercise on Motor Symptoms in Patients With De Novo Parkinson Disease: A Phase 2 Randomized Clinical Trial, Margaret Schenkman et al., JAMA Neurology: 75(2) 2018.

[2] Results from the Randomized Controlled Trial Cyclical Lower Extremity Exercise (CYCLE) Trial for Parkinson’s disease, Jay Alberts et al., Medicine & Science in Sports & Exercise: May 2018.

[3] Forced, Not Voluntary, Exercise Improves Motor Function in Parkinson's Disease Patients, Angela Ridgel et al., Neurorehabilitation and Neural Repair: 23(6) 2009.

Increasing heart rate
 

wendy s said:

"They suggested continuing without the motor assist, staying down at 80 to 90 rpm, keeping my heart rate up by increasing the resistance, and cycling every second day."

When Dr. Alberts' office said to keep your heart rate "up", I presume they meant up above 60% of HRmax, as per their original protocol.

Given the results of the SPARX trial, and the preliminary results of the CYCLE trial, I am now keeping my heart rate in the range 80 to 85 percent of HRmax.

I'll look at this again when/if the full results of the CYCLE trial are finally published.

Solid research involving interval training, cycling, and PD
 

Eight Weeks of Aerobic Interval Training Improves Psychomotor Function in Patients with Parkinson’s Disease—Randomized Controlled Trial, Jaroslaw Marusiak et al., Int. J. Environ. Res. Public Health 2019, 16(5), 880.

"... the current study is the first randomized controlled study to present a positive generalized effect with a moderate intensity aerobic interval training (AIT) regimen on a cycle ergometer."

"Previous studies have established that interval training is more enjoyable and effective than continuous exercise programs for non-PD populations."

"... other studies have shown that the BDNF increase following interval training is greater than that following continuous regimen training."

IJERPH | Free Full-Text | Eight Weeks of Aerobic Interval Training Improves Psychomotor Function in Patients with Parkinson’s Disease—Randomized Controlled Trial | HTML

(hat tip to easilly at HU for the link)

Very interesting HIIT-for-PD cycling trial in Canada
 

"This pilot project will involve a randomized trial of 30 individuals with PD comparing the effects of HIIT [High-Intensity Interval Training] and CMIT [Continuous Moderate Intensity Training]."

"Participants will include men and women between 50-85 years of age, who are able to stand unsupported for 1 min, walk 18m without use of an aid, and mount a stationary bike."

"Participants will be randomized to either HIIT (10, 1-minute cycling intervals at 90% of peak power output, each separated by 1-min at 10% peak power output) or CMIT (30-50min cycling at 60% of peak power output)."

"Training will be completed thrice weekly for 10 weeks."

So the members of the HIIT group do 1 minute of cycling at 90% of peak power output, "rest" for 1 minute, then do that 9 more times back to back. Given the rather loose eligibility criteria, I think the 90% figure is probably a little ambitious!

Physiological Benefits of High-intensity Interval Training for Individuals With Parkinson's Disease - Full Text View - ClinicalTrials.gov

(hat tip to iqbaliqbal at HU for the link)

CYCLE Mk 2 !
 

Jay Alberts has just received $3M for a CYCLE Trial Mark 2!

"Cleveland Clinic and University of Utah will recruit 250 Parkinson’s patients who will be randomized to a high-intensity home exercise or usual and customary care (UCC) group. [The high-intensity home exercise group will follow the protocol from the CYCLE trial, and will] utilize indoor cycling bikes from fitness technology company Peloton. Participants will be instructed to exercise 3x/week for 12 months; the UCC group will be instructed to engage in their normal activities."

Cleveland Clinic Awarded $3 Million NIH Grant to Determine Disease-Modifying Effects of Exercise in Parkinson’s Patients – Cleveland Clinic Newsroom

More info on the new trial
 

The Clinical Trials website has a trial record for the new "Pragmatic CYCLE" trial. My guess is that they have added the word "pragmatic" because the Peloton bikes they will be using are normal spin bikes (i.e. no motor). PwPs in the high-intensity home exercise group will be given an aerobic-intensity target range of 60-80 percent of heart rate reserve, and a cadence target range of 80-90 RPM.

Estimated Study Completion Date: September 1, 2024

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

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.

The "Pragmatic CYCLE" trial is now recruiting
 

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

CYCLE II Update
 

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.

"Forced exercise" is still an active area of research
 

Although the focus of the current (N = 250) CYCLE-II trial is on high-intensity aerobic exercise, research is still proceeding in the area of "forced exercise", both at the Cleveland Clinic [1] and at KSU [2]. A couple of review articles on this topic have also been published (fairly) recently [3, 4].

[1] Forced, Not Voluntary, Aerobic Exercise Enhances Motor Recovery in Persons With Chronic Stroke, Susan M Linder et al. (2019).
Forced, Not Voluntary, Aerobic Exercise Enhances Motor Recovery in Persons With Chronic Stroke - PubMed

[2] Optimization Of A SMART Dynamic Bike To Improve Motor Function In Parkinson’s Disease, Angela L Ridgel et al. (2021).
Optimization Of A SMART Dynamic Bike To Improve Motor Functi... : Medicine & Science in Sports & Exercise
(poster only, at this stage)

[3] Review of studies considering the effect of forced exercise on symptoms of Parkinson's disease, William J Kohler (2019).
Review of studies considering the effect of forced exercise on symptoms of Parkinson's disease. - Document - Gale OneFile: Health and Medicine
(abstract only - the rest is behind a paywall)

[4] Therapeutic effects of forced exercise cycling in individuals with Parkinson's disease, Daniel G Miner et al. (2020).
Therapeutic effects of forced exercise cycling in individuals with Parkinson's disease - PubMed
(abstract only - the rest is behind a paywall)

exercise & foot cramps
 

So, have you had botox injections for your foot cramps, I have & it helps. Also had a problem with my toes curling under on my affected side, my podiatrist cut the tendons on the underside of the toes and , boing! they straightened out....I can walk and even pedal more easily...