Thursday, September 11, 2008

Stroke recovery: A Leap Of Faith

I wrote this article recently. I describe Stroke recovery as a leap of faith, not unlike other leaps of faith we constantly take. Here are some highlights...
  • I talked to a stroke group the other day. They were about 30 strong, and they were feisty. I do talks all over the country on the state of stroke recovery research. I have spoken to audiences that have included therapists, doctors and researchers. But nothing is quite like staring down the barrel of a group of stroke survivors. They've lived through stroke and have, to whatever degree, experienced the loss of control that defines brain damage. Each person who survives stroke is dealt a unique "hand of loss" causing the dispossession of everything from language to limbs, from emotions to personal independence. Stroke survivors have literally been there and back. They can be a bit prickly when someone suggests that they need to work harder. And that's just what I was suggesting.
  • Much of what I believe helps a stroke survivor recover involves a leap of faith. I believe that massed practice works. Massed practice involves literally massing hours of practice together. I believe repetitive practice works. Repetitive practice involves doing the same movement, repeatedly, until long after sanity screams to stop.
  • I believe that there is no way to recover unless the stroke survivor stays aware of new developments for stroke recovery as they emerge. I think stroke survivors need to have a strong cardiovascular and muscular foundation in order to have the energy to do all the other things necessary to recover to the highest level of potential. In short, I believe that stroke recovery is best served if efforts toward recovery are treated like a full-time job
Convincing the Experts
  • When I speak to therapists about this emerging research-based paradigm shift, there is some push back. Therapists give me a sideways look and let me know that I'm whistling a bit of Dixie if I think that most stroke survivors are going to be willing to carry out a complicated and labor-intensive plan.
  • Stroke survivors are more blunt. "Six hours a day of practice! I have better things to do, thanks!" They also ask questions that require absolute answers. "If I do put in the time and effort, what return can I expect?" they demand. "What about the repetitive practice? How many times do I have to repeat a movement before my brain rewires enough to do the movement right?"
  • I've learned to be direct when answering. I tell them, "There are no guarantees. You could work very hard and get very little return. No one knows how many repetitions are needed. Some people think the magic number is 10,000. Others think it's closer to 150,000. Some researchers suggest a million or two. But even if we knew the 'optimal' number, the fact is that the number of repetitions needed is different for every survivor because of any number of variables." Well, to stroke survivors, this is the cherry on top of a mud pie, let me tell you. But I have an ace up my sleeve—and that ace is a mirror.
  • I asked the members of the group what they did before their stroke. One gent had been a lawyer. Another was a farmer. And I have just spent three years writing a book. The three of us were a collective of experts in leaps of faith.
  • I suggested to them that the monumental challenge of law school followed by the bar review then the bar exam (a three-day, six-hours-per-day exam) were several leaps of faith. Betting the farm on the mysterious and unpredictable miracle of life, year-in and year-out, through flood and draught, is the farmer's perpetual leap of faith. And what of the three years spent writing a book distilling the very message I was now telling them? This may have been the ultimate folly. I am guaranteed of selling only five copies—all of them to my mom."


daswami said...

followed you here from the asa forum. great site. I'd love to get you to Washington, DC to speak at a "stroke survivors support group" we hold each month. I myself am a 37 year=old stroke survivor (carotid dissection, left-sided hemiparesis, no cognitive deficits, thankfully) I have committed myself to both recovering fully and serving others who are similarly afflicted in any way I can. I have tried the gamut of therapeutic options: the usual OT and PT, some "cutting edge" stuff like otox, bioness and saebo, " suas well as "alternative" therapies such as feldenkrais, reiki, cranio sacral massage, yoga and meditation, all of which have helped in some ways. I also play the Wii for rehab purposes (as it provides bio feedback to 3 senses- sight sound and touch.) and forces you to move functionally (if you want to call "gamimg" functional. I'd recommend all of the above to anyone recovering from stroke. each has a benefit. My main goal remains to get back to playing guitar, my most beloved hobby of all. I'm in a constant battle against flexor tone in my left arm/hand, and have tried most of the recommended courses of therapy (including self-induced constraint therapy using the most fashion-forward oven mit I could find at Target. I have also found that blogging and building an online support network via the sundry stroke forums I've found online to be incredibly rewarding.

Peter G Levine said...

OK, let me get this straight: you live in DC and play guitar? I was in the DC music scene for more than 15 years, as a drummer. And getting back to guitar playing is the perfect motivation. Because, as you know, when you can't play your instrument is an actual physical ache that develops. Being a musician is one of life's great addictions. Definitely use that in your recovery.

I'd be glad to visit with your stroke group. I'd be especially glad to do it during the Super Bowl because, as I'm sure you know, the Redskins will be there. Thanks for your comment. e-mail me at -pete

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