I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.
Here’s an example of why – a true story from tonight’s email.
Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:
This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem. He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is: is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!Blew my mind. We have a long way to go, Dave.———- Forwarded message ———-
Subject: Biking PD study
I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?
ABC Good Morning America story with Dr. Jay Alberts
I don’t know superb resources for most diseases, but for this one, I know Peter Schmidt, CIO and Program Director at the National Parkinson Foundation. He wrote: (posted with permission)
Yes, lots of thoughts. First off, the “forced exercise” model is one that has been explored with fairly severe PD patients, and was hit upon opportunistically — Jay Albert was riding tandem with a person with fairly severe PD. What most neurologists who study this believe is that the requirement is intense exercise, and that perhaps the “forced” exercise studies are a result of studying people (or animals) whose disability is severe enough that they can’t exercise with sufficient intensity.
There is some controversy between the mainstream exercise in PD people who think it is intense aerobic exercise that delivers the best outcomes and a smaller group, a leader of whom is Giselle Petzinger of USC, who believes that it is learning a new skill (that is intense) that is important. The interesting thing about Giselle’s work is that it offers an explanation of the forced exercise: by forcing the subject, there is learning of a new skill going on.
I’m not a neurologist, but I am pretty involved in PD research and have spoken to a lot of the top people on this subject (part of my job is visiting PD labs and clinics). What I would do if it were me or my sibling is exercise a lot. Combine “fitness” exercise–that is, aerobic exercise performed at a level to drive improvement, not just running/biking/etc at a comfortable pace–and learn something new. Jump rope, start skating, learn to box, something new. Don’t forget to spend some time doing strength and flexibility, which help in other ways, but the aerobic exercise has probably a 2/3 chance of actually slowing the disease. Nothing else seems as promising.
Eric Ahlskog of Mayo, who literally “wrote the book” on PD (look him up on Amazon, there’s a patient and physician guide to PD that he wrote that is concise and excellent), is telling neurologists to medicate patients to help them to tolerate intense exercise. Consult your doctor, but as a younger patient he might be offered a dopamine agonist to start. Carefully consider the side effect of impulsivity that is not uncommon with agonists. Make sure his family is vigilant for signs of impulse control problems.
[Re finding a top neurologist:] call 1-800-4PD-INFO. The agents on that line are really great (they work for me) and can help with research questions, too.
One more thing I forgot — my team made this: http://toolkit.parkinson.org which is a site that can serve as a guide for non-specialist physicians (or other smart people who know the lingo) who want to know the basics of Parkinson’s disease.
As far as patient communities, our site: http://forum.parkinson.org/ offers some good groups. There’s also neurotalk and PatientsLikeMe.com has a PD group.
The World Parkinson’s Congress is in 2013 in Toronto and he should plan to go — it’s a great meeting of engaged patients and professionals meeting together.
Bob Kuhn says
World Parkinson’s Congress is indeed a great place to go (at least based on my experience in the 2010 Congress in Glasgow). However, the 2013 WPC is in Montréal, not Toronto (which should be a greater encouragement to attend).
Neil Sligar says
I was diagnosed in 1998 and commenced a vigorous exercise program in January 2000. It was focused at my general health rather than my PD. Little has changed in my routine. I attend a gym four times per week and partake in stretching, indoor rowing, stationary cycling, and weightlifting. I occasionally compete in cycling or indoor rowing competitions. At 66 years of age I continue to run my financial planning business.
During the past year I’ve added sprinting to my repertoire.
My neurologist tells me my l-dopa intake is unusually low.
Hope that gives food for thought.
Peter Blumenthal says
Reading the posts here—it seems that the term “Forced Exercise” therapy (as a treatment for people with Parkinson’s disease) is somewhat confusing.
As the CEO of a company whose Theracycle exercise bike enables patients with Parkinson’s to practice Forced Exercise, we’re very familiar with the term and its practice:
“Forced Exercise” does NOT mean simply working out vigorously using any type of exercise. The Cleveland Clinic research initiated by indicates that subjects with PD who followed a very specific exercise regimen (optimal intense and rapid leg movement for an extended duration on a stationary exercise bicycle) showed a 35% improvement in their PD symptoms. Since the majority of people with PD do not have the strength or endurance to follow this exercise regimen on their own, a stationary tandem exercise bicycle with a strong co-rider was used to assist the rider with PD in order to maintain the required pedaling speed, intensity, and duration of the exercise regimen. This is why the exercise regimen is called “forced” by Dr. Alberts – the tandem bicycle co-rider assists or “forces” the rider with PD to pedal faster, harder and longer than what he/she could do on their own power. Dr. Alberts feels it is this rapid leg movement that generates more nervous-system messages to the brain which causes biochemical reactions which, in turn, leads to improvement in PD symptoms. Another way to describe this therapy would be “Rapid Leg Movement Therapy.”
Patrick Rafter says
Following up on Peter Blumenthal’s comment above and in direct response to E-Patient Dave’s original post on “e-Patient Resources for Parkinson’s Disease”, we’ve put together a helpful compilation of “Bookmarks for Parkinson’s e-Patients” on The Theracycle Blog. See it at: bit.ly/wJb6WN
Hope you find it informative and helpful.
e-Patient Dave says
Hi gents –
To be clear, I don’t have any particular position in this – I know exactly nothing – I just posted what I could find. I’ll see if Peter Schmidt has anything to add to the discussion.
Having said that, I think the original writer’s concern was that whoever he spoke to at CC did not in fact have any useful information, just mass media clips. I don’t know the people involved, but on the face of it I’d guess that he didn’t find someone who could answer his level of questions. If you (Theracycle guys) can make that connection, I imagine it would be much appreciated.
And, from what you said, the patient who asked didn’t get anything remotely resembling the answer you provided. If so, that would seem to be an important communication breakdown – the person assigned to answer questions from e-patients would seem not to know what the important issues are. Perhaps that can be fixed too.
Hi! Re: Peter Blumenthal’s comment, we in the PD community are always thrilled when a company makes a product for PD and we are really pleased with the Theracycle and what it does. However, the science is not so cut-and-dried. The Cleveland Clinic does great work and has made some really great findings, but so too have researchers at the University of Maryland, USC, St. Jude Children’s, Tel Aviv Sourasky, and about a dozen other places out there. The Cleveland Clinic study showed a benefit from a very specific regimen because they only studied a very specific regimen. From Albert’s excellent 2011 paper: “…the exact components and dosage of optimal exercize interventions have not been determined for patients with PD….” In fact, many animal studies have been conducted not with forced exercise, but rather with limited exercise, and the findings have been quite similar. In the St. Jude Children’s work, mice whose exercise was limited were more susceptible to a neurotoxin.
This is an area I know fairly well. There is not yet sufficient evidence to show that forced exercise is better than any other intense exercise and Albert acknowledges this. Looking at the broader literature, there is plenty of evidence that any strenuous exercise provides a benefit to brain health.
This section from my org’s Parkinson’s Toolkit was written by a member of the board of directors of the American Academy of Neurology: Parkinson’s Toolkit on Exercise. It references Eric Ahlskog’s excellent article on exercise in PD, although Bas Bloem’s article is excellent too.
The other Peter’s comments are absolutely welcome, but part of being an e-patient is learning to read between the lines and watch for biases, whether they be commercial or anything else. Peter, please feel free to follow up with other scientific findings that you believe refute what I’ve posted here. I’d be particularly interested in whether you believe Aberts’ own comment about exercise dosing has been addressed — do you feel anyone has performed a comparative effectiveness study of different exercise regimens in PD patients?
Finally, note that the original e-mail was for a very specific patient, one who is fairly early stage (and we hope stays that way!). As was shown in the Berlin Big Study, different stages of PD generated different results. I think that we will see the same thing with exercise.
Of course, people with PD should speak with their doctor and physical therapist before starting any new exercise regimen and maybe they will recommend a theracycle! The most important first step is to get people convinced that strenuous exercise is important for brain health (and general health) regardless of your health status.
e-Patient Dave says
(The comment above was from Peter Schmidt of the National Parkinson’s Foundation, whom I quoted in the post.)
Patrick Rafter says
Pete, Dave and others:
This dialogue is what makes epatientdave.com such a great exchange for information and ideas.
I’ve taken the liberty of e-mailing you both (outside of this blog comment thread) to respond to Pete’s Feb 7 comment (on behalf of Peter Blumenthal and myself/The Theracycle Team).
Welcome contributions and suggestions (ideas for guest posts too) from anyone for The Theracycle Blog
http://blog.theracycle.com. While we’re not on the same scale as Dave’s blog… we do hope to be an informative site for people with PD and other movement disorders.
Going back to the first post ruing the lack of information on “Forced Exercise”— may I suggest visiting Jay Alberts’ own website (the Cleveland Clinic researcher who pioneered FE for PD). You’ll find a summary of his research and more at: http://www.lerner.ccf.org/bme/alberts/
A little more on this: a member of my team went to the Davis Phinney Victory Summit in Arizona last weekend. Jay Alberts was a speaker, and I had my colleague ask Jay whether he really felt that forced cycling was better than other exercise modes. Jay’s response was No — the best exercise is exercise that you will actually do. He is convinced that you should push yourself to the limits of the pace/velocity that you can do, and not just try and do something easy. Whenever there is scientific controversy, it’s important to review the arguments and try to identify the common thread, and the common thread here is: push yourself. Push your limits, whether that be by doing a familiar exercise at or beyond your comfort level or by doing something new that you’ve never done before and is not easy for you. Most people are focused on speed and aerobic conditioning (anaerobic conditioning, e.g., sprinting, could be good too), but not strength. However, strength training is beneficial, too, in a different way.
Bill Patterson says
I have had great personal results with stationary cycling. My story, as presented to the US FDA is at http://www.parkies.org/FDA .
evelynray ray says
[Editor’s note: I don’t believe this, but I’m posting it so I can respond to it as a teachable item. See reply below.]
In April last year, i started on natural parkinsons disease herbal treatments from RICH HERBS FOUNDATION, i am happy to report this PD herbal treatment worked very effectively. My parkinson is totally under control, i had a total decline in symptoms, the tremors, shaking, stiffness, congnition and speech problems stopped. Visit rich herbs foundation official web page ww w.richherbsfoundation .com. My family are amazed at the change and rapid improvement.
e-Patient Dave says
All, I approved this comment not because I agree with it or believe it but specifically because I do NOT. If this were anything credible there would be a well designed study showing that people who do this will reliably be likely to improve compared to people who do not.
I’m all in favor of herbal remedies or anything else that works for any individual. But don’t ever assume that anything said by anyone who’s selling something (whether it’s a used car or a prayer shawl or an FDA-approved treatment) has any value until you’ve checked it out yourself.
If you want to buy or try something that has no evidence, be my guest, but don’t assume you’ve found a reliable answer just because someone on the internet said it.