Some people who do HSCT to stop MS are jogging on the beach a few months later. Not me. Though HSCT has stopped my MS and a recent MRI showed my lesions are no longer inflammatory, I still have significant neuromuscular damage from my Tysabri rebound attack. Nerve healing and retraining the muscles will take time – Dr. Burt says he's seen improvements for other MS patients continue for up to three years.
Remember, I was in a wheelchair a year ago. After HSCT seven months ago, the wheelchair now goes unused. Standard PT sessions and yoga have been somewhat helpful in improving my walking, but my recovery has not been as rapid as I'd hoped. My goal is to be able to run again, hike a few miles, carry a 70-lb canoe, and go skiing. I did all those things with ease three years ago, and I want back what MS and the drug Tysabri took from me. Since working out harder isn't an option, I have to work smarter.
Most people today know Pilates as a hipster celebrity workout craze, but Joseph Pilates first developed it to rehab wounded war veterans in the early 1900s. The past couple of years have certainly felt like a war for me, and rehab is what I need.
I've found a pilates instructor, Kim Taraschi at New Movement Pilates, who has had good success with rehabbing MS and stroke patients. My hope is that her expertise will apply to my issues as well. The Pilates reformer machine and some mat techniques can simulate the motions of running. It might be just what I need. Maybe I'll get to be a success story for HSCT AND Pilates, but there's still much work ahead for me. No one said it would be easy.
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