Spinal Muscular Atrophy

[RobertBlouin]

I was wondering if anyone had any ideas for modifications in an inclusion class with a student with Spinal Muscular Atrophy?

[StefAPE]

How severe is the SMA? Is the student in a wheelchair yet?

For those of you unfamiliar, SMA is a degenerative neuromuscular disorder; therefore the student’s muscles weaken over time, to the point where they lose the ability to do things we take for granted. Depending on the severity, lifespan is significantly shortened since eventually the respiratory muscles become compromised and the person loses the strength to draw a breath. They can end up dependent on breathing machines. However, people with SMA can live quality lives long into adulthood, have babies, teach PE, whatever, again it all depends on the severity.

One very important thing for PE teachers to realize is that strengthening activities with students with SMA or Muscular Dystrophy DO NOT slow the progression of the disease, so you are not helping by putting them on a weight training plan. As a matter of fact, over exertion of the muscles can actually over fatigue the muscles, causing them to break down and weaken, and thereby never building back up. In a healthy body, strength training exercises fatigue the muscle to break it down so that it will build back up even stronger, right? Not so with SMA or MD. The muscle stays broken down and never does the rebuild process. Avoid activities that cause muscle or joint stress and excessive fatigue. Avoid any respiratory overexertion. Energy conservation is crucial in these kiddos, but at the same time, keep them active. Its a fine balance. Flexibility activities are excellent. Get them in the swimming pool. Find individualized activities they can do and enjoy. Remember that their time might be short here on this precious Earth. Help them discover activities they can find enjoyment in. Bocce ball? Target tosses? Wheelchair dance? Kite flying? Do you have a rock wall? Put the kiddo in the harness and heave ho! The video gaming systems are perfect for students with SMA, do you have a Wii??

On a personal note, I lost a student I was VERY close to a few years back to this. I worked with him for 7 years, and even did respite with him on weekends. He was 20 when he died. Way too young. His favorite activity was swimming. It was in the water, and only in the water, he’d be able to walk again. A gift of freedom, the water. I wish I would have taken him more.

Miss you to pieces Tommy.