Even with all my tools, friends are the best adaptive gear
A loving friend can be the greatest aid in mobility and access
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As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased, some my dad has made or modified, and some are things my friends have thoughtfully given to me.
Recently, I went out to dinner with some friends at one of our favorite restaurants, where the service is friendly, the atmosphere is celebratory, and the food is delicious. On outings like these, I tote some of my adaptive gear in a bag on the back of my chair, so I am prepared for any scenario.
I have a tray that attaches to the front of my chair across my lap, so I can prop my elbows up to feed myself. (It also catches spills and crumbs!) I have two small pieces of grippy material we can lay under my elbows so they don’t slip off the tray, which often happens when I’m wearing long sleeves. And I have a plastic silverware set, which is lighter and easier for me to hold and lift. Armed with these special aids, I can usually feed myself independently without making too big a mess.
Sometimes, my equipment isn’t enough
On the day of the dinner, however, I was really struggling with my strength and energy. It took everything I had to maintain my balance, swallow carefully, and grip a spoon. For all my awesome adaptive gear, I could not get my body to cooperate. After several failed attempts that left food everywhere except my mouth, I sighed and turned to my friend Julie, who was sitting next to me.
“I think I’m gonna need some help,” I began in a discouraged tone, flopping my fork on the side of the plate in surrender.
“That’s OK. What can I do to help?” she responded kindly. “Do you need me to cut something up? Or move the plate? Or adjust your arms?” Julie and I eat a meal together every week, so she is familiar with all my little hacks.
“Um, actually, I think I need you to feed me,” I said, and it felt embarrassing to admit.
This was a new caregiving skill that Julie had not done for me before, and probably hadn’t done for anyone, except maybe her nephews when they were babies. But she rose to the challenge, and together we figured out how to do it. Small bites ensured that the majority of the food stayed on the fork and ended up in my mouth instead of on my sweater. It took some time, but with Julie’s help, I was able to relax and enjoy my meal.
It just goes to show you that the best adaptive gear to aid in mobility and access is a loving friend.
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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