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Dave, I want to take this opportunity to say thank you for all you have done for this little community of "Misfits" as you put it. The appearance of ActiveMSers on the internet at the time was extremely appropriate.
As I recall, there were only a couple of professional athletes diagnosed with MS out there advocating for exercise as a method of managing MS at the time. Most Neurologists were not only not on board with it, many were outright against the idea of exercise for PWMS. And then along came ActiveMSers! What a change from the usual emotional support sites for PWMS, I myself was fortunate enough to find you not too long after the site came up and couldn't believe my luck - a web site that advocated my own beliefs!
I had been an amateur student of exercise physiology even pre-Dx. I noticed all of the benefits that exercise was having in the general population and post Dx I questioned why it wouldn't work in PWMS other than the fact that it had yet to be tested on MSers. The timing was perfect, most of the studies had already been run, just not on PWMS. ActiveMSers began to attract a a group of dedicated "Misfits" who shared the same philosophy, living to the fullest extent they could, active most of their lives and not ready to give it up because of MS. You garnered some powerful voices all advocating for staying active as one method to help manage MS and who became so vocal about it, most notably yourself, that the Neurological community was forced to pay attention. Soon enough the studies on PWMS began and the almost universally positive outcomes led to more and more studies being performed. And you posted links to all of the studies you could find and that reinforced what the ActiveMSers suspected they already knew. Eventually the Neurological community began to come on board, and as more and more studies came out and proved to be reliably repeatable, exercise, staying active became a significant part of MS therapy recommended by most Neurologists for PWMS. Seems to me that happened about 5 years ago. If that was ever part of your goal in starting ActiveMSers and all of the advocacy work you had been doing, you successfully accomplished it then.
I admired the way you were willing (willing?, is that the right word) to put yourself out there and share your experience with the MS community, most notably HSCT. Admittedly I cringed at times when I read what you were going through. But I always felt that making your experience publicly available had great and lasting value.
And of course, one is never as avid an advocate for persons with disabilities as when one finds oneself with a disability. I too now actively advocate particularly as I age with this condition and I'll continue to do so as long as I am able.
Finally, I've made some good friends on this site and gained quite a lot of insight on living well with a disability and for that I will be eternally grateful.
I know I haven't covered everything here but what I really wanted to do was to express my gratitude for all you have done generally in the cause of PWMS and specifically for this little community of Msers who believed in you. We got lucky in having someone who could write well and could occasionally even be funny, was willing to start a web site for people in a similar situation and who could put themselves out there in terms of their own personal experience. Whatever happens going forward, please know how grateful I am and always will be.
Sincerely,
Larry
As I recall, there were only a couple of professional athletes diagnosed with MS out there advocating for exercise as a method of managing MS at the time. Most Neurologists were not only not on board with it, many were outright against the idea of exercise for PWMS. And then along came ActiveMSers! What a change from the usual emotional support sites for PWMS, I myself was fortunate enough to find you not too long after the site came up and couldn't believe my luck - a web site that advocated my own beliefs!
I had been an amateur student of exercise physiology even pre-Dx. I noticed all of the benefits that exercise was having in the general population and post Dx I questioned why it wouldn't work in PWMS other than the fact that it had yet to be tested on MSers. The timing was perfect, most of the studies had already been run, just not on PWMS. ActiveMSers began to attract a a group of dedicated "Misfits" who shared the same philosophy, living to the fullest extent they could, active most of their lives and not ready to give it up because of MS. You garnered some powerful voices all advocating for staying active as one method to help manage MS and who became so vocal about it, most notably yourself, that the Neurological community was forced to pay attention. Soon enough the studies on PWMS began and the almost universally positive outcomes led to more and more studies being performed. And you posted links to all of the studies you could find and that reinforced what the ActiveMSers suspected they already knew. Eventually the Neurological community began to come on board, and as more and more studies came out and proved to be reliably repeatable, exercise, staying active became a significant part of MS therapy recommended by most Neurologists for PWMS. Seems to me that happened about 5 years ago. If that was ever part of your goal in starting ActiveMSers and all of the advocacy work you had been doing, you successfully accomplished it then.
I admired the way you were willing (willing?, is that the right word) to put yourself out there and share your experience with the MS community, most notably HSCT. Admittedly I cringed at times when I read what you were going through. But I always felt that making your experience publicly available had great and lasting value.
And of course, one is never as avid an advocate for persons with disabilities as when one finds oneself with a disability. I too now actively advocate particularly as I age with this condition and I'll continue to do so as long as I am able.
Finally, I've made some good friends on this site and gained quite a lot of insight on living well with a disability and for that I will be eternally grateful.
I know I haven't covered everything here but what I really wanted to do was to express my gratitude for all you have done generally in the cause of PWMS and specifically for this little community of Msers who believed in you. We got lucky in having someone who could write well and could occasionally even be funny, was willing to start a web site for people in a similar situation and who could put themselves out there in terms of their own personal experience. Whatever happens going forward, please know how grateful I am and always will be.
Sincerely,
Larry
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