The Freedom to Swim
Sometimes I just want to stand up and fling my arms around or jump or spin really fast until I’m dizzy and fall on the floor. It’s the feeling when kids twirl and make random movements because our body is meant to move and it’s fun to use it. At least I imagine it is.
But I rarely get that sensation with SMA unless I’m at physical therapy and even then it’s somebody stretching me while I just lay there. The only time I actually feel free and able to fully use my body is when I’m swimming in the pool.
Feeling weightless while swimming
Growing up, my mom used to take me to swim therapy at the outpatient hospital. I was young but I still remember how it first felt to be weightless, splashing, and moving as if my disability had suddenly disappeared.
I never wanted it to stop and I went to swim therapy until the point where I was too big, making it difficult to get into the pool without a lift and change into dry clothes without a Hoyer lift or another lift system. Sometimes hospitals are the most inaccessible place.
Lifts to get in and out of the pool
Around that time my parents were renovating our home to make it more wheelchair friendly and finished the backyard by adding a small, in-ground pool. They also had a pool lift installed so I could easily get in and out.
There are many types of lifts for the pool and the one we choose was a plastic chair connected to a metal pole that was cemented next to the pool. The chair raised and lowered from water pressure connected to the outside hose. That option is much more durable and convenient than the battery-powered aquatic lifts we now see at hotels or other public pools.
Feeling what it's like to walk while in the water
Once I’m in the pool, I wear a collar around my neck that helps me float otherwise I’ll just sink. I also strap aquatic weights to my ankles to keep my legs down to stretch my hips and allow me to tiptoe across the pool. Finally, I can feel what it’s like to walk!
Swimming has been one of the best physical therapy and stretching forms for me. It’s also just great to be in a position other than sitting or in bed.
Accessibility issues and being able to access pools
After I moved from my childhood home, I really missed getting in the pool every day during the summer. The apartment I was living in had a pool but I never used it since the lift was of course always broken and installed on the side of the pool I couldn’t get to in my wheelchair.
Eventually, my family joined a fitness club that had multiple indoor and outdoor pools. It was great for a couple of summers since I would get stretched by one of the trainers and then swim the rest of the day. But we ran into the same problem of having nowhere to change clothes and forcing me to sit in a wet bathing suit until we left.
Now I’m in a house, still putting the finishing touches to make it my own. But I know for sure I’m putting in a pool as soon as possible.
Do you have unanswered questions about SMA treatment options?