When I was a kid, I was skinny as a stick. Part of this was because I got sick so often, but the other reason was that I was a notoriously picky eater back then. I had many health issues at the time — but the one thing that wasn’t a problem was transferring me to and from my wheelchair. Since I only weighed about 75 pounds in those days, both my parents could lift me without any issues.
Flash forward to today, and things are nearly the complete opposite of how they used to be. On the one hand, I haven’t gotten seriously ill in years and my overall health is great. But on the flip side, it seems like transferring me is getting harder and harder every day. Whereas I was light as a feather in elementary school, I’m now about 130 pounds and most of that is dead weight. Given that SMA causes my muscles to deteriorate, a lot of my body fat goes to my stomach.
Growing is a natural part of life, but when you factor in SMA, some days are a real pain in the butt.
For example, take the process of me getting up in the morning. During the week my caregiver Randy is with me, and he is physically capable of picking me up without having to use my hoyer lift.
On Friday nights and Saturdays however, it’s up to my parents to take care of me. Using the lift requires me to be wrapped inside a cocoon-shaped sling, which then attaches to our mechanical lift. From there I’m lifted up in the air and rolled over to either my bed or my bathroom seat.
I’ve gotten used to it over the years, but it can still be a very taxing and time-consuming process for both my parents and myself. There are days when I simply wish that I was younger and didn’t have to deal with these obstacles.
Transferring isn’t the only thing that’s become more challenging as I’ve grown. It’s also more difficult for my parents to shift me at night when I’m in bed, and also in the mornings when I’m getting dressed. I usually change positions two to three times on an average night, but depending on the energy level of my parents, often they can only turn me about halfway. Again, when I was younger this wasn’t an issue at all as I was so lightweight that both of them could roll me on my side or on my back quite easily.
The funny thing is that I have friends who are my age and also have SMA, and they’re much lighter than I am and so can still be lifted by their parents or significant others. This disease affects people in different ways, and I would venture to say that for most people with SMA, it only gets harder with age.
On days when I am really frustrated about transferring in the morning, or struggle to get comfortable in my chair, I like to listen to music or go for a walk, as those things put me in a more relaxed state. No matter how hard I try to stay in the right mindset, or focus on how great my life is going, those days when I feel burdensome and long for my elementary school body are going to happen.
The key is to focus on the things in my life that have changed for the better, and to take everything day by day.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.