I recently began the process of acquiring a new power wheelchair. There was a meeting with some technicians associated with the clinic that provides the chair. We discussed several custom options like the color and a hand warmer. General measurements were also taken. It felt like the “Pimp My Ride” wheelchair edition.
This got me reflecting on the highs and lows of owning these sophisticated pieces of machinery over 18 years of living with Duchenne muscular dystrophy (DMD).
Read about HCP resources for DMD
When I was around 11 years of age, I used a push wheelchair, but I no longer had the strength to roll it myself without assistance. This obviously was not ideal for my independence. That’s when it was suggested I switch to the power wheelchair. Once I received it in 2005, it felt surreal to have the freedom to go where I wanted using the joystick.
All of my chairs have come from 1 of the premier companies engineering them – Permobil. I’ve been pretty satisfied with them, but naturally, there are going to be some kinks with something this complex. My first chair had a charger that overheated and blew fuses. There was 1 occasion when my father needed to talk on the phone with a technician for a couple of hours to fix it. Luckily him being a former engineer, he was able to deconstruct the chair to reach the faulty area.
The first chair also had air tires. They could go flat by me running over just as much as a tack, which did, in fact happen a few times. Again being like my own personal pit crew, my dad changed them. The tires I have now are of higher tread and never have flattened.
Typically these power wheelchairs have a shelf-life of 5 to 6 years before insurance is inclined to cover a new 1. This is about how long each of my 3 chairs has lasted. It is very much like getting an updated model of the same car.
It was 2010 when I upgraded to the second chair. This 1 was free of technical issues until the last few months of the standard operating window. There was a battery problem, and a technician came to my house to look at it. They made an error when attempting to remedy it, and that was all she wrote. Fortunately, I was loaned another suitable wheelchair for the next year until I got the next 1.
I picked up my current model in 2017, and it has been the “Goldilocks” version. First off, it has glossy orange rims I like. Also, the darkened tires make me think of the Batmobile.
More importantly than style though, it is relatively comfortable for a wheelchair. The armrests, headrest, and seat are each made of gel cushioning. While sitting for long periods of time is still challenging, this makes it more bearable. Additionally, there is the padding on the sides of the armrests that hold my elbows in place well.
This was also my first power chair to include a chest strap. It is a must on bumpy terrain like sidewalks. Case and point, I forgot it once when I went down a curb cutout. I lost control of my right arm, and it hit the joystick. Then I accelerated towards a parked car before my dad saved me from injury. On car rides, the chest strap comes in handy because I get jostled around much less when it’s combined with the van’s seatbelt.
As I mentioned earlier, I’m now in the phase of getting a new power chair for the 4th time. One reason it can take up to a year for this to transpire is the stinginess of the insurance company. With the chair, I own presently, I had to get extra paperwork filled out to provide a purpose for having push handles installed. Last week, my hands were cold after dinner at a restaurant, and I couldn’t steer the joystick. My dad pushed me to the van using those push handles, so they turned out to be pretty necessary.
I’m confident this process will be completed on a reasonable timeline. Based on the experience I’ve had with this current Permobil model, I expect I’ll be satisfied. It won’t be long until you see me zipping around in my flashy blue power chair.