Small adjustments to a wheelchair can greatly improve comfort
How we've been fine-tuning my husband Todd's new power chair
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My husband, Todd, finally got in his new wheelchair! After it was delivered in September, I wrote that we needed to have the attendant control reprogrammed. That finally happened, and we’ve been fine-tuning the chair over the past week.
Although both are the same brand, there are differences between the chair he got in 2014 and this new one.
One difference Todd appreciates is that the headrest is flatter, giving him more freedom to move his head when using his computer. He points the cursor by using the HeadMouse, which detects movement of a reflective sticker on the brim of his visor. It had become difficult for him to turn his face side to side with the concave headrest on his old chair.
He also likes the anterior tilt feature on his new chair, which allows him to get his mouth closer to a straw when he is drinking coffee or water at a counter-height table.
But some things about the new chair weren’t quite right.
Small details matter
The armrests were too short, so we had them replaced with longer ones. The footrests were too high, so we lowered them and also tilted the front of the foot pedals down. And I adjusted the thigh pads out so that his knees would be farther apart.
Todd jokes that he’s like “The Princess and the Pea.” He can feel the smallest imbalance.
He told me one armrest felt lower than the other. I couldn’t see it, but I laid a 3-foot level across the armrests, and sure enough, one side was half an inch lower. For now, we are addressing that by using a thicker piece of foam under his left arm. He needs to use foam over the armrests anyway to prevent pressure sores.
The new back cushion was too thick and went down too far, pushing Todd too far forward on the seat cushion. After a day in the chair, his bottom and back were sore. We swapped the back cushion with the one from his old chair, and a day later, he was no longer in pain.
We think Todd ended up with the best chair for him. He once tried another wheelchair brand but found that the inherent design problems didn’t work well for him. For example, the footplates didn’t extend out far enough when the footrest moved up, pinching his feet.
Because Todd’s old chair fit him so well — thanks in part to an experienced technician who spent much time with Todd to set it up — Todd has high expectations for this new one. We know several ways the chair can be adjusted, and we’ve been able to make some adjustments ourselves with a set of Allen wrenches.
Sadly, some people with ALS never find their custom power chair comfortable, and they end up spending their days in a recliner or bed. I wonder if that’s partly because those final adjustments aren’t being made, and they don’t know that micro-adjustments are possible.
But some problems cannot be fixed with minor adjustments. For example, the thinner, contoured backrest that came with his original chair is no longer available. We had the old backrest on hand, so that was an easy fix. But if Todd were new to a wheelchair, he’d have to tolerate a sore back, or we’d need to figure out if major adjustments could be made, such as making the seat pan deeper.
Our experience has taught us not to settle too quickly and to advocate for what we need. Small details really matter, especially for people in advanced stages of ALS.
Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.
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