Everything Takes Extra Effort When You Have SMA

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by Kevin Schaefer |

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It took three people to complete my retinal scan during my vision appointment the other day. Most people can just prop themselves up against the machine, stare into the camera, and finish in no time. SMA, however, adds a few extra steps to this process. 

Once I entered the room for my exam, I knew that my wheelchair tray and JACO robotic arm were in the way. There was no way I could prop my head on the retinal machine with these devices still attached. Thus, I guided the optometrist through the meticulous process of removing them from my chair. 

“Ok, now if you could grab that knob on the bottom left. Twist it a little more. A little more. Now, pull the tray out from that handlebar. No, move your hand to the side a bit. Uh, not quite. Er.”

So much for my communication skills. My mom came in from the waiting room to help with this step. 

Then came the really fun part. Even with the extra space, I still couldn’t propel myself forward and prop my head against the retinal machine. Thus, the optometrist brought in two more assistants, knowing that this task would require a team effort. 

I then drove my chair as close to the machine as possible and raised my seat a few inches so I could be in proximity to the camera. From there, I asked the optometrist to hit the off switch on my chair and lift up my right armrest, knowing that we needed more space. We were getting there, but the actual scan was still a few steps away. 

If a random passerby had watched the rest of this scene play out, they probably would have concluded that I was a victim of some bizarre cult that secretly infiltrated this vision center. While the main optometrist stood near the machine, one of the assistants leaned me forward and turned my head to face the camera. The other adjusted the machine to get it in just the right position to take pictures of my right eye. 

In summary, there was one person pushing me forward, another holding the machine up, and another operating the machine. Meanwhile, I was squeezed right in the middle, while the optometrist instructed me to keep my eye open for the lens camera. Cue SMA slapstick scenario number 517,901.

Eventually, we got the picture. However, we still had to scan my other eye. Hence, I had the optometrist lower my armrest and turn my chair’s power button back on so I could reposition. I then flipped around so that my left eye was close to the machine, and we repeated the previous steps. At this point, I was wondering if I was at an eye appointment or physical therapy. 

Everything takes extra effort in the world of SMA. From the hour and a half it takes me to get ready every morning, to going out, to getting a simple retinal scan, nothing is easy. Don’t even get me started on family vacations.

By the way, my eye doctor gave me a good report and said that my astigmatism hasn’t been exacerbated in recent years. At least I’m not blind and in a power wheelchair!


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.


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