Last year, my Family Access Manager (FAM) from Biogen, the company that makes Spinraza, recommended aquatic therapy. I had heard from people with SMA online that it’s really beneficial but had never thought to try it myself.
I finally got around to investigating it several months ago, after my FAM pointed me to a Methodist Rehab clinic that does this type of therapy. The physical and occupational therapists I saw there determined they would not be able to safely transfer me to their pool. They referred me to St. Dominic Outpatient Rehab, which has a roll-in pool.
Since then I have completed 6 aquatic therapy sessions with a physical therapist there. She was excellant! She was willing to make it work from the beginning, despite my case being unusual and the difficulty around transferring.
This was the first time I've been in a pool in probably about two decades. It has been a lot of fun. When I was a kid, I really enjoyed going swimming, because the buoyancy allowed me to move a lot more freely. I never could swim per se, but I could sort of hop around aimlessly.
I immediately noticed this time around that I was a lot weaker. I could no longer stretch out my arms. I can move my feet and legs backward, but I almost can't push it forward at all. Nonetheless, I can still move a lot more than when I'm not in the pool, and the physical therapist was able to come up with an exercise routine for me to follow whenever I go. I'm not going to have any more sessions with her. I'll just be going to the pool with the help of my caregiver. I now have a fitness center membership. 🏋️ That's something I never thought I would have!
