I'm quite alarmed at the hype coming from THERACYCLE, I get an email a week from them promoting their device and now i can even talk to people who have tried it.

i'm anxious to see the results from roberts next trial, anyone know if it has started?

the benefit appears to be transient, it goes away if you stop cycling. but according to alberts study lasted weeks after the participants stopped. so either those neurotrophic factors have a long half life or there were temporary changes at the DNA level to produce these factors or do something that temporarily changed the dopamine system, either create more dopamine, produce a few more dopamine cells from stem cells, increase dopamine receptors? seems end game would be find drugs/gene therapy that could do the same thing as vigorous excercise.

There is already one treatment in trial and another that has shown long term benefit over course of four years.


The PicoTesla Magnetic Resonator is entering Phase III trials. It reduces symptoms for months. http://www.pico-tesla.com/#

Light therapy shows improvement of symptoms over course of four years.

http://informahealthcare.com/doi/abs...20520701420717

I honestly think that if they compared the longer term treatments like this, including cycling and DBS, to see what is that extra thing that we seem to need beyond dopamine replacement we would be making some real progress.

Oh dear i replied to the original post in a half awake state and then after noticed the date - cant delete but I can edit so - though the conversation has moved on this in response to a part of the original question now somewhat out of context.

Sorry Nan and birthday wishes to you.

Laura every country is different. This is the New Zealand approach - Green Prescriptions: Its been around for about 15 years and over 75% of doctors use them.

The health professional (GP or practice nurse) issues their patient with a Green Prescription (GRx), provided the patient’s medical condition is stable.
The script is either written or issued electronically, exercise pgme can include gym membership. If the patient wants ongoing support, the script is forwarded through to the nearest GRx Patient Support Person.
The Patient Support Person encourages the patient to become more active through:
monthly telephone calls for 3-4 months or;
face to face meetings for 3-4 months or;
group support in a community setting for 3-6 months.
The patient’s progress on their path to an active lifestyle is reported back to the referring health professional.
If the patient feels they would benefit from ongoing support, they are encouraged to ask their health professional for another GRx.

Hello~
I'm new to all of this...but would love to participate in anything that spreads truth to power..and gives that power to the patients!
My husband (76) diagnosed with PD last year....on sinemet...3x a day...with a little improvement in the last few months with body stiffness...but not much else.

Have any of you heard about GIGERMD?....Google it and see the amazing results for yourselves. Trouble is, the machines cost about 65,000 each and are made in Switzerland. BUT, the concept of reverse bicycling for PD patient's looks ever so promising.
My husband can't pedal fast enough on any type of bike to gain anything from it. He walks, but with walking sticks and then not to very far....

I'm looking for complementary modalities...that are out there, because I see that western medicines just don't have a thing, really, to offer the sufferers of this progressive disease.

Does any one know about RG100?
or even RG40?
Cannabis tinctures?

I'm getting us back to plant based diet as well....

I hope to hear back....anyone??......thank you.....

and bless you all for sharing..and learning...it all helps!

[QUOTE=arjena;1113113]Hello~
I'm new to all of this...but would love to participate in anything that spreads truth to power..and gives that power to the patients!
My husband (76) diagnosed with PD last year....on sinemet...3x a day...with a little improvement in the last few months with body stiffness...but not much else.

Have any of you heard about GIGERMD?....Google it and see the amazing results for yourselves. Trouble is, the machines cost about 65,000 each and are made in Switzerland. BUT, the concept of reverse bicycling for PD patient's looks ever so promising.
My husband can't pedal fast enough on any type of bike to gain anything from it. He walks, but with walking sticks and then not to very far....

I'm looking for complementary modalities...that are out there, because I see that western medicines just don't have a thing, really, to offer the sufferers of this progressive disease.

Does any one know about RG100?
or even RG40?
Cannabis tinctures?

I'm getting us back to plant based diet as well....

I hope to hear back....anyone??......thank you.....

and bless you all for sharing..and learning...it all helps![/QUOT

the important thing is to exercise, regardless of whether you have pd.
there are motorized exercycles, never tried them, not endorsing them.
so your husband gets absolutely no relief from sinemet? are you sure he has pd?
the major ingredient in sinemet, l-dopa, was originally derived from a bean, nothing very "modern medicine" about that except you get a much purer, reliable, safer product imho.

I know there is no magic solution for everyone, but I feel compelled to tell you the latest changes in my physical status. A year ago I was skiing at Whistler in British Columbia and had to come off the mountain because my arm was in such pain I could not even hold a ski pole.I was quite literally in tears and sure I would never ski again.. Yesterday I skied top to. bottom for hours with no pain.
To what do I attribute this change? I've been doing three things differently the last six months. I've been working with the Beneufit program on my bicycle, very cheap, not very much special gear. I ride for an hour five or six days a week part, program to maintain arrangement that is pushing me harder than I would normally go but not beyond my capacity. The second thing is that I started taking Sinemet, a low dose of 25/100 3 times a day, and I do the PD Dance class nearly every week. My physical (and mental) changes feel like a miracle. I reiterate. That this is my personal, anecdotal experience, but to me it emphasizes once again the immeasurable ( at this point at least) value of consistent exercise.

Every Movement Disorder Specialist I speak to knows that exercise is an important part of disease management and living better with PD. We try to not only fund research to provide evidence on exercise for PD patients but we also work to share information on the topic.

Here is a link to the Exercise area of our website. https://www.michaeljfox.org/understa...c.php?exercise

Our last "Third Thursday Webinar" was devoted to the topic as well. You can access the webinar exercise here. (Along with other topics in the archive!)
https://www.michaeljfox.org/understa...c.php?exercise

Debi

I've kept a journal most of my life, sometimes more rigorously than others, but it has enabled me to keep track of my exercise related to my life experiences. That obviously became more important when I was diagnosed with PD in early 2008. I have been better about journaling since then. By working with several programs: Pedaling for Parkinson's, Dance for PD, hiking, mountain climbing and fly-fishing most often, I'm still keeping the beast at bay. I've put my experiences to paper and am thrilled (and a bit scared) to report that my book, If I Can Climb Mt. Kilimanjaro, Why Can't I Brush My Teeth? Courage, Tenacity and Love Meet Parkinson's Disease, will be available in a few weeks. I know that many people on this forum will recognize your input into my thinking on various issues. I thank you and hope that the book is helpful. In one word, the book admonishes everyone to EXERCISE!

Laura:

For as long as you can perform at that speed, keep doing it. Unfortunately, you will have to adapt and combine with other physical activities to keep 100% active, in spite of physical limitations.

I was diagnosed PD's 6 years ago and until 3 years back, I noticed a problem with my stride during running. It wasn't until my abductor muscle was affected in part due to the biomechanics of the stride that I realized I had to quit my running exercise and start swimming in order to avoid lesions. I did swimming for 2 years and combined with walking and stationary bicycle. I got bored of swimming and the stationary bicycle and kept walking. I have been walkling daily for 60 min in the past 3 years and it has been fun, relaxing and healthy (I walk in the middle of the woods). Recently, while walking, my right foot get stiff so I need to stop and stretch my leg. This happens during the 1st half an hour until my Sinemet first dose starts working. So if I want to continue walking I will have to adapt and slow down for a few seconds and start over. There is no other choice than to adapt. I am also considering swimming again.

This disease teach us to adapt. There is no other way to deal with it.

Wish you the best.

Lobo

Just checking in...

I have the "vintage Exercycle" and am loving it. 1932 design, with moving seat and handle bars, in addition to pedaling.

In my 20's & 30's I was an avid cyclist and would cover century (100 mile) rides for fun. Hills, hill climb, long distance cycling. I would get into the zone not even aware of my feet and just go. Toe straps so I could alternate pushing down or pulling up on the pedals to use different muscles. Typically 90 rpm speed.

The Exercycle has two speeds... slow (about 60 rpm) and fast (110 rpm, are they kidding?). My son, who doesn't own a car and cycles everywhere including to hit races commented that fast is near impossible, even for him.

Thankfully my exercycle has the optional PEP meter. So I can set up a 45 minute ride, 30 second duty cycle, and set level to "3". After five minutes I'm at 150 pbm (90% of target heart rate) and can keep in there with that 30 on/30 off duty cycle. Intense workout. When I stop, I can not walk. I need a few minutes of rubber legs to be steady again. Having a green light, meter to peg out, and the timer all help in my motivation to keep riding the full time. It is psychological if I am ready to quite.... meter says 8 minutes left... green light comes on and I GO like crazy for 30 seconds, knowing I get to coast next thirty.... then only 7 minutes to go....

Catch is initially, starting with shorter times and load levels, there wasn't much benefit. It was keeping on it for 3x a week, with interest 45 minute workouts that I feel much better after three months. It is like I burn up my dopamine riding, have 30 minutes after the ride of chicken legs, but next four hours are tremor free. So I can get other things, like machining done.

Couple this with stretch, mild work out, and weekly Parkinsons Movement classes and I am feeling great! So when I riding the exercycle I think back to my favorite rides in California, Europe, Ireland, and New Zealand. Yes, even made it up the switch backs at Cliffs of Moher.

I'd love a three wheel catrike bicycle, but for the time being the Exercycle is helping.