Why it’s good to have a backup wheelchair
While we await something new, we've had to adjust an older model
We didn’t realize how much my husband Todd’s comfort depended on his custom-fit power wheelchair until he had to go without it.
A few weeks ago, Todd, who has ALS, decided to order a new wheelchair after finding out that his 11-year-old Permobil C300 isn’t fully compatible with the latest eye-gaze technology that he’d need to safely drive the chair. The new chair is months from arriving, so in the meantime, we needed to repair his current one. The buttons to adjust his seat position weren’t as responsive as they should’ve been, so it needed a new switch box.
Even if he could’ve tolerated a chair in disrepair for a few more months, it’s best to have a backup chair that’s in good working order in the event that Todd’s new chair breaks down. Todd used to rely on a chair that wasn’t customized as his backup, but it became too uncomfortable for him to sit in for any period of time, so we gave it to somebody who could use it.
Not-so-easy repairs
A couple weeks ago, a repair technician came to our home on a Friday to fix Todd’s C300. After installing the new parts, the chair displayed a tilt error message, and none of the seat functions worked. While Todd watched from our recliner, the technician spent over an hour on the phone with Permobil tech support, and the representative had to call an old-timer for help, because nobody else was familiar with the outdated chair.
The technician unplugged connections and plugged them back in until finally the error message went away — but they didn’t know the root cause of the problem.
On Saturday afternoon, while Todd was having lunch with his seat elevated and foot rests out, the tilt error returned, and his seat was stuck in that position — OK for eating, but not for transferring or using his computer.
I left a voicemail and sent a text message to the branch manager of the durable equipment provider, and we waited, hoping to get a response — if not that weekend, then at least first thing Monday morning.
It was a long weekend for Todd, in which we realized how dependent he is on his properly functioning chair for his comfort.
Since Todd’s chair would not tilt or recline, it wasn’t possible to get him into a comfortable position with his tailbone at the back of the seat. His body was slouched, and he couldn’t keep his head up to use his computer.
We improved his position a bit by placing a short wheelchair ramp in front of his computer. I drove him up the ramp, effectively tilting his chair back and allowing him to keep his head up, but he was still uncomfortable, so later that day I transferred him to our recliner to watch a movie. He was somewhat comfortable, but he doesn’t have a way to use his computer in the recliner.
Other possible solutions
The next day, we decided to try him in his shower chair. I placed a Roho cushion on top of the commode seat, used pillows to pad the arm and foot rests, and strapped his body securely to the back rest with a gait belt. It wasn’t great because the chair doesn’t recline, but at least it tilts, and he could use his computer.
On Monday morning, I called the durable equipment provider, but its office was closed because of inclement weather. Todd would have to tolerate another day in his shower chair.
On Tuesday morning, I was finally able to contact the repair technician, and after explaining the urgency of Todd’s situation, we made arrangements for me to drop off Todd’s wheelchair at their shop, and I’d take back a loaner wheelchair for Todd to use while his is being repaired. Fortunately, I was able to find a caregiver for Todd so I could make the four-hour round trip.
When I returned, Todd was eager to get into the loaner. The chair is fitted for a much smaller person, but at least it has tilt and recline, and he’s much more comfortable. And it’s a good thing he has this chair to use, because it might be some time yet — maybe a week or two — before his old chair is fixed. They ordered replacement parts, hoping that will fix the issue.
It’s the first time in 11 years that Todd’s chair has been out of commission for more than an hour. In retrospect, perhaps we should’ve gotten a new chair six years ago when he was first eligible. Because he’s so dependent on a custom wheelchair for his comfort, it’s good to have some sort of backup plan.
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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Steven Fry
How did you cover the repair fee on your old power wheelchair, because I like my old 300 better than my new wheelchair ordered a couple years ago and I have to pay out of my own pocket for any repairs on my back up 300? My old 300 is better than the this new one.
Steve Rudolph
I understand that a backup wheelchair is a must have after reading this. But can Todd use t he shower chain in the mame time?