Debbie found an excellent outpatient rehab center in Danbury, Main Street Rehabilitation which had neuro trained therapists, something she felt I should have. She was absolutely correct. Though my ability to speak had returned, I count myself lucky compared to others I have met who still deal with this frustration on a minute to minute and daily basis. Still, at that point in my recovery I was still not able to speak in a group setting nor was my vocabulary and fluency anything like it is today.

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Once started, therapy was four to five hours a day. Besides the PT, OT and some minor speech assistance, therapy in a warm pool was prescribed. Here I could walk with no assistance feeling independent, which was a real “high”. I did outpatient therapy for a bit over two years, substituting an exercise physiologist as my other therapies tailed off.

At that stage, I hit a plateau and was frankly burned out. To avoid some of the more challenging north eastern weather we were experiencing in snow belted Ridgefield, and to be closer to Debbie’s teaching we moved into an apartment in Stamford. I was working remotely on a part time basis in our entrepreneurial telemarketing company in Lincoln, Nebraska.

In early 2002 we moved to Naples, FL and I decided to see if I could jump start my recovery which I still considered unsatisfactory. One thing I have learned about recovery – it only happens if you put yourself “in the game”. One day a recent PT graduate from U of Florida approached me and suggested I go to the Brain Rehabilitation Research Center at the Veterans Hospital in Gainesville.

That summer, I spent several months going back and forth to Gainesville participating in different studies. Two particularly constructive ones were Constraint Therapy and an exploratory Locomotion Study. Participating in the Constraint Therapy for an intensive two week period (eight hours per day), I relearned to hold a wine glass in my effected hand which in networking happy Naples is quite important. In the two week locomotion study, I improved my walking speed by 25%. From my patient perspective, I believe that survivors and their caregivers need to better learn the benefits of participating in clinical research. There are aphasia studies which should be considered. (The book discusses how to find them if the reader is not familiar.)

Later I was referred to a therapist who mixed traditional PT techniques with integrative approaches, some of which, though admittedly not traditionally researched, actually worked remarkably well over the intervening years. As a survivor I would suggest that more patient/caregiver thought be given to supplementing traditional approaches with integrative techniques, particularly when a plateau occurs.

I have come to realize that stroke is an underserved and under researched disease. As such, I have founded The Stroke Research Foundation, a 501C3 public charity to improve post-stroke lifestyles. We hope to create a research portal in non-clinical language so that caregivers and survivors can stay abreast of new techniques which could possibly be helpful. Also, we are working to provide funding for rehabilitation research which could help patients in the short-term.

Shamelessly, we would ask your support and suggestions at www.StrokeRF.org.

In this 21st Century healthcare environment “staying in the game”, “taking the bull by the horns”, beating depression, doing some kind of regular fitness on a daily basis and subscribing to the notion of adapting healthy eating habits are all important components in any recovery program.


Bob Mandelll
Stroke Victor
bob@strokevictor.com
bobm@StrokeRF.org

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