You Can Become an Honorary SMA Athlete, Too

The Olympic Games in Tokyo are happening right now, which makes me think about how those of us with SMA are athletes in our own special way.

How do we win against the opposing team of our symptoms? We must have high amounts of endurance, the will to overcome obstacles, and most of all, we can’t afford to stay still. All of these qualities must be achieved in a physical and mental way.

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Three weeks ago, I leaped into my 39th birthday. For somebody whose prognosis back in the 1980s was to not make it past 2 years old, I could never complain about getting older. I’m happy to say that in a few years, I’ll be middle-aged! In other words, I’m going into halftime.

When I reach halftime, it won’t be a time to relax. It will be a time to work just as hard, and be just as active as I have been since the first few years of my life.

You may remember me writing about how I spent the first four years of my life in the hospital. I didn’t explain play-by-play exactly how I won the game against constant pneumonia. The score was against me for a long time, as I would stop breathing and go into respiratory arrest basically every night.

Then, when I was 3, my fellow teammates — my mom, doctors, and nurses — put a winning strategy in motion, literally. My mom read a study from Louisiana State University that described how they were providing therapy to children with similar diagnoses as mine by putting them into a reciprocating gait orthosis (RGO).

This is a full-body brace that helps people stand and walk with assistance. The doctors had tried everything else to break up my pneumonia, including triple IV antibiotics. Getting active in an RGO was the last option available. As they say in U.S. football, this was my last-ditch Hail Mary pass.

The motion of progress can be unpredictable. Sometimes you move backward before you can go forward, or in my case, down instead of up. When people stood me up for the first time in my life in the RGO, my blood pressure tanked downward and I passed out. I had gone completely vertical way too quickly.

My team decided we needed to start running with progress in slow motion. The next step would be to raise the head of my hospital bed in small increments every few minutes before I stood vertically about an hour later. The point was that we kept trying something instead of staying static.

This strategy soon worked! Not only was I able to stand in my RGO brace several times a week, but I also was able to walk with assistance from a physical therapist (PT). While in my RGO, the PT would push my feet forward one step at a time. All of this movement was the only thing that drained the pneumonia out of my lungs and into the locker room.

Stepping forward three times a week with the assistance of a PT and an RGO is something I still do today. It has been key to keeping me out of the hospital. I’ve gone to court twice and advocated many times to protect this PT service when the state was having a budget crisis. So, you see, even though people try to force me to stay still and stop all of my progress, I never will. I don’t even allow myself time to give it a second thought. I just keep moving forward.

That’s my physical situation, as far as being an honorary SMA athlete. Now, briefly, here is my mental situation. As I look for new nurses, I don’t have time to allow my spirits to diminish and to be depressed every time someone turns my case down. Several potential hires a week sometimes tell me no. I just have to keep moving forward if I’m going to get anywhere at all.

As my mom, the agencies, and I continue looking, finding good candidates is a team effort. A team doesn’t win a game by dwelling on every point scored against them. When you’re trailing behind, the next shot or two could be the one to change the game’s momentum. The same goes for the next nursing candidate or two.

Many of the top Olympic athletes say they are only really competing against themselves. If a game can be won or lost in the mind first, then so can anything you try to accomplish. That’s good for those of us with SMA, because our minds are our best asset.

So, train your mind to be a champion among men and women!

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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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.