We’ve all heard the saying that PT is short for “physical torture,” and for the longest time I clung to that notion and refused to go. I did physical therapy when I was in preschool and early elementary school, but all throughout middle and high school I stopped going. I used the excuse that I was too busy, and my doctor had to really bug me to get back into it as a young adult. He told me upfront that my muscles would keep getting tighter and weaker, and if I didn’t do something I could face severe osteoporosis.
At last I succumbed, and now I’ve been doing regular pool therapy for more than two years. For me, it wasn’t that I didn’t want to get in the pool. I’ve always loved the water, and I used to go swimming every summer with my family. Eventually, though, it got to a point where my parents could no longer transfer me into and out of the pool, which was difficult for me to accept. Just being able to move freely in the water is quite liberating, and it wasn’t something that I wanted to give up.
Nevertheless, if my parents couldn’t transfer me, I wasn’t exactly keen on the idea of letting people I didn’t know do it. My parents know what parts of my body are sensitive and how to handle me properly, but the idea of someone else getting me in and out of a pool and trying to balance me was pretty nerve-racking. Plus, any kind of therapy is a big time commitment, and I was still in college when I started this process.
Thankfully, my doctors and parents have always been patient with me, even when my stubbornness was at its peak. I knew PT would not only be good for my health, but that it was necessary. I started doing water therapy in the summer of 2015, and now I do it every week.
As far as the transfer process, my physical therapist and at least one assistant use a hoyer lift to get me from my wheelchair to one of their manual chairs. From there, my PT rolls me in the chair and down a ramp that’s built into the pool. Once I’m in we can begin my 45-minute session. For 45 minutes I can kick, swim, move my arms, put weight on my hips while I get into somewhat of a standing position, and do all kinds of other tricks that I didn’t know I was capable of. The water provides me with that freedom.
Granted, getting out of the pool is a little more difficult. Given that I can’t balance myself, it takes some extra effort and coordination from my PT to get me back in the manual wheelchair while I’m still in the water. It typically requires two people to keep me in position so I don’t tip over, and even then it’s still hard to keep me still when the water is pushing me around. Somehow we manage every week, and I’m then rolled out of the pool and transferred back into my chair. It’s not an easy process, but you do what you have to.
Just like my Spinraza injections, I had my reservations about going through with physical therapy as an adult. This column is all about my journey from wanting to attain normalcy, to embracing the abnormalities that come with my disability. I’m not the kind of person who sits around waiting for my life to suddenly become easier. I have a great life and I treasure the fact that my SMA has provided me with a unique outlook on life.
Still, being in the water allows me certain freedoms that I don’t have when I’m in my chair. Doing it every Monday morning is not only a good stress-reliever as I head into the workweek, but it makes me feel stronger. The exercise I get during these sessions makes me feel like I could actually live a healthy and nutritious lifestyle.
Then I stop by Zaxby’s on the way home and throw that fantasy out the window. Hey, I didn’t say I was perfect.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.