Knowing how to articulate my needs is crucial as my SMA progresses

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by Kevin Schaefer |

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As a kid, I organized my hundreds of action figures in buckets. I kept them displayed on a wooden shelf next to my bed, and I knew the exact location of each figure and accessory. Anytime the figures were out of my reach, I relied on the patience of my parents and siblings to listen to my meticulous instructions and retrieve the desired toy.

“Can you go to the red bucket on the bottom row, grab the Obi-Wan figure, and then get his lightsaber? No, the other one. OK, great. Now in that yellow bucket on the left side of the middle row, grab the blue Power Ranger at the top.”

Once I had those figures in my hands, I could go wild. My inventive crossovers between “Star Wars” and “Power Rangers” made me way ahead of Hollywood. All I needed were a few toys to develop a shared cinematic universe.

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It seems trivial in retrospect, but the way I dictated each step for retrieving a plastic toy taught me how to articulate my physical needs. SMA demands that I rely on my mental capabilities and communication skills to compensate for my limited physical strength.

These days, I rely heavily on my knack for delivering specific instructions to friends, family, and caregivers. Whereas I used to have more flexibility and range of motion, today I’m continually adapting to disease progression. In order for me to move in any capacity and operate my electric wheelchair, I have to be in just the right position.

A week ago, I was with my family for Father’s Day lunch. As we left the restaurant to stop by the mall around the corner, I struggled to drive my chair. Normally it’s cold weather that prevents me from maneuvering outdoors, but that wasn’t the case in this instance. Despite the warm temperatures and clear skies that afternoon, I had other obstacles to deal with.

For one, I hadn’t slept well the night before. Though my sleep patterns have improved since I last wrote about this subject, it’s still a struggle. Running on fumes isn’t ideal for going out, but sometimes I have to manage.

The other issue made me use my articulation skills. As the hand I use to drive began to slip off my chair’s joystick, I had to ask my dad to reposition it. If he moved it too far to the left or right, my chair would’ve spiraled out of control and I might’ve crashed into Starbucks.

“Move my right hand about two inches to the left … a little too much. Right about there.”

From this point, I tilted my chair forward so that I was in a position to drive. Often when I’m eating or sitting for a prolonged period, I recline back so I’m more comfortable. Now I needed to sit up straight so I could maneuver my chair.

Eventually, I grasped the joystick and kept my balance for the duration of the afternoon. While there was no way I could maintain or surpass the speed of my niece and nephews, I could at least get around without having my dad push me.

Living with SMA is a constant game of adaptation. As new and familiar obstacles present themselves, I manage accordingly. The key is to keep pushing forward.

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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