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?
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.
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.