Inclusivity Reports

klI have owned a custom wheelchair for a year now, as a part time user. Using my chair for long distances has changed meaning a bit over the year. At the start, I was using it for longer grocery store trips, and of course bigger events like the aquarium or a theme park. As I worked hard in physical therapy, I stopped needing mobility aids for short distances, anything under ~30 min was doable. I was even able to take a couple big trips without an aid, and I had started walking ~30 min each day. Unfortunately, FND had to rear it’s head, and chronic leg pain and occasional tremors/buckling occur now. Fortunately, I already have a lovely wheelchair made just fo rme! 

Wheeling myself around is quite a workout on the shoulders, but the muscle pain is nothing compared to the sensations in my leg from walking. I feel as if I am actually able to enjoy ljife from my chair, because I’m not focusing on making it through the pain. I can notice so many more flowers, smells, enjoy the sunlight a little more. The term “wheelchair bound” really bothers me, as my wheelchair gives me the mobility I miss out on under different circumstances. 

Now, I’m going to (do my best and) tell you all the brands on my chair. The frame, wheels and brakes, seat, and back, are all from different brands. The frame is from APEX, the wheels and brakes are from NEWTON, push rims are The Natural-Fit, the seat cushion is Jay Fusion, and the back rest is Optima (I think these are right, being a mobility aid user is like being an advertisement for the mobility company, so the branding is all over). I also have a power assist from Smart Drive.

(Image above is a profile of my wheelchair. It is fresh and new, with no scratches on the black paint to show the silver beneath (yet). There are armrests, anti-tippers, and handlebars-a stereotypical new user chair. Some pink and purple flowery duck-tape is wrapped around the front of the frame to add a pop of color. The background makes the picture a bit hard to read, as the black wheelchair is in front of a black television stand, a fan, and a hallway with a door.)

My wheelchair is fairly light, especially if you disassemble it and carry just the frame or just the cushion. The heaviest parts of my wheelchair are my Smart Drive Power Assist, my cushion, and the frame. The wheels are awkward, but not too heavy for me. The backrest is fairly light as well, which is nice. The cushion is removeable (as are most things on the chair), and I take it with me in cars to help with my pain, as the shaking from car seats can hurt my leg(s). 

The Smart Drive power assist is a helpful tool for pushing yourself. It can drive you on flat surfaces, gives you extra weight for downhills, and can give you a little extra boost when you’re going up hills. There is even an app that allows you to adjust the speed a bit (However, it is extremely slow no matter what setting you pick, I’m speedier with my arms but I’m SO grateful for the help when I need it.)!!

I had an Amazon DRIVE wheelchair for a while before I got my custom one. It got the job done, but not well. A custom chair has allowed me to live my life comfortably, and encouraged me to leave the house more often than I would if I was trying to walk, or using my old wheelchair. If you can afford a custom chair, if your insurance covers it, if you feel you need one, I encourage you to do so! Mobility aids are a journey and it’s okay to try one out, even if it ends up not suiting your needs! And remember kids, most people don’t *want* to be in a wheelchair-it makes life more difficult because things are rarely made with us in mind. If you *want* a wheelchair, you probably need one. You don’t have to ask, “Can I use this for pain/exhaustion/fall risk/etc. issues?” The answer is do whatever you want forever! If you try a chair and it ends up not being the mobility aid for you, see if there is someone nearby with similar measurments that you could maybe donate it to! Or, if you have a progressive/degenerative condition, you could keep it for when/if you grow to need it.