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Something I look forward to every summer is swimming. Being in a pool has many health benefits for people with spinal muscular atrophy (SMA). It’s the only form of therapy my parents didn’t have to bribe me into doing when I was a child. Being submerged in water is when my body feels most liberated. I have control over my limbs, which I didn’t have outside of the water, and that’s what made it so inviting and enjoyable. 

I could remember competing with my brother and his friends to see who could hold their breath the longest. I beat them by a long shot, without any handicap standard. It’s one of my favorite accomplishments. I was like a little fish. I loved going under the water. It was a goal of mine to hold my breath for 1 minute. I never reached that goal, but I did reach 42 seconds. I’d say that’s pretty impressive for someone’s health being compromised. But, that’s the beauty of the power of water and how it could help strengthen so many, all the while being exciting and fun. 

Nevertheless, it’s important to understand lungs are significantly compromised with SMA, resulting from scoliosis. The severity of the spine curvature varies and could cause the spine to push on the lungs, causing shortness of breath. Meanwhile, the earlier someone utilizes swim therapy with SMA, the greater the chance the lungs will stay strong along with the muscles surrounding them.

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Prevention is always key. However, living in a climate where the majority of the year is cold has made it difficult to maintain water therapy. There are public places like the YMCA available to swim indoors, but it isn’t feasible given my physical needs. 

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Going to a public place, especially during the winter months, could compromise my health. Common colds and flu spread quickly in cold weather, and I’d be more likely subject to them in a swimming facility. In addition, I wear a brace to support my posture. Finding privacy to dress and undress is a challenge, and it causes some anxiety. And as I’ve mentioned in previous articles, finding routine transportation to and from can be difficult as well. The effort wouldn’t be worth the risk of what it would take to utilize a public facility. 

In my heartfelt opinion, I feel no one whose body is physically compromised should spend a day without water therapy. I find it essential especially for one diagnosed with SMA. Our muscles are in constant need of stretching. The buoyancy adds relief to the heaviness gravity puts on our bodies daily, and allows us to feel fewer body aches. Going underwater can help strengthen the muscles that support our rib cages, providing more room for our lungs to expand. It’s also essential the temperature of the water is warm. When the water is a little above room temperature, it encourages our muscles to loosen up and opens a longer window to stay submerged in the water.   

My hope and prayer are that eventually everyone whose body is physically compromised by a rare disease has full access to water therapy. It would be wonderful if we could see some type of funding provided or prescriptions written for water heaters and whirlpools for those suffering physically. Heaters and pools alone can be extremely costly and not readily available to everyone. Meanwhile, if water therapy is routinely provided and utilized it could be a game-changer for many.