New Wheels, New Freedoms

New Wheels, New Freedoms

Kevin Embracing my inner alien
After three denials by my insurance provider, countless phone calls and my amazing neurologist fighting for me, I finally acquired a new wheelchair a few days ago. The process took a year, and while the insurance fiasco was a headache, at least this particular battle is over and I have my new and improved ride.

My new and improved ride

Normally I get a new chair every five years, but this one took an extra year because my insurance kept denying me. Most power wheelchairs cost anywhere from $25,000-$30,000, and this one is a staggering $46,000. Between that and my JACO robotic arm, the equipment that I use just to be mobile, it adds up to about $100,000. Nevertheless, this is equipment that I need in order to function in my daily life.

My wheelchair is like an extension of my body, and it was time for an upgrade. My last chair was great, but after getting me through senior year of high school, four-and-a-half years of college and eight months of my post-college life, it was practically running on fumes. The head and footrests were worn and torn apart, the battery was barely hanging on and the seat cushion was so uncomfortable that I was getting pressure sores on my butt. I’d love to see an insurance agent try to cope with that for a year!

Insurance battles aside though, getting a new chair brings with it a whole set of challenges. While I’m loving the new one, it still takes some time to fully get used to it. Imagine, if you will, getting a new body. Even if your old one was worn and decaying, and the new one was fresh and healthy, it would still take time to adapt to the new features.

With my new chair, I decided to have the joystick a little more centralized, in order to limit how much I’d have to move my driving hand. On every other chair I’ve used, the joystick and controls would extend directly from the right armrest. But the more my arm strength deteriorated, the more difficult it became to move my driving hand from my joystick to my tray.

For the new chair, the technicians cut out a part of the tray so that the joystick could be placed right where the tray is. This way, I can keep my driving hand in closer proximity to my joystick, phone and iPad all at the same time. This makes it much easier to get work done and read, while also keeping my hand close enough to my joystick if I need to move to another room.

I also have two power switches instead of three, further reducing the amount of back-and-forth with my hands. On my old chair, I had three different switches for turning my chair on and off, changing the modes on my chair and operating my JACO robotic arm. With this one, my technician was able to merge the power function and mode-switching into one switch. Mode-switching just means that I can set the chair to driving mode, seat adjustment so that I can do things like recline and tilt, and the JACO mode so that I can operate the arm.

It’s a bit complex trying to explain all of the technical aspects, but when you use a wheelchair all the time these things are second nature. It took a few days and some trial-and-error efforts to figure out exactly where I wanted each switch placed, but like I said, getting a new chair is a meticulous process in which every detail has to be taken into consideration.

Finding some breathing space

I also tried to leave my tray off for a few hours to see if I could still use the chair without it. I’m very dependent on the tray for things like working, reading and eating, but at times it can feel a bit claustrophobic. I especially feel its constraint when I’m out with friends and someone is hesitant to hug me because I’m too surrounded by all my equipment. Those are the moments when I really feel like Robocop 2.0, which is cool – and annoying.

I love my tray, but I need some breathing space too. Fortunately, I was able to keep it off for an afternoon and still operate my chair. I placed the power/mode switch and my phone on my right leg next to the joystick, and the JACO switch on my left leg. This was truly liberating, as it opened the possibility of me going out and leaving the tray at home. With the old chair this wasn’t an option, as I couldn’t move my driving hand from the joystick to my leg without it getting stuck.

Overall, the new wheels are working great. This chair, which is called an M3 and is manufactured by Permobil, has much better speed and dexterity than the previous model I used, and the range of motion is incredible. I’m still getting used to all the kinks, and I do need to get my lateral support adjusted, but having it is a huge relief.

Now, if I can just get a jet engine mounted on the back I’ll really be set to roll.

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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.

One comment

  1. A tray is so useful but can also feel a bit restrictive and be a bit of a social barrier. My wife designed the ‘trabasack’ that is a tray that looks like smart bag, it is lightweight and easy to get on and off. It can be attached to any chair with the straps or round your waist like a fanny pack. It doesn’t suit everyone but it’s another option to consider. It can also come with a velcro-able tray option that you can attach switches and controllers to. Best wishes, Duncan

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