Grips for a Wheelchair Joystick
Living with SMA, it often feels like we’re slowly losing strength or independence daily. Of course, now with the new medications that are available, some of us are seeing improvements or, at least, stability with our condition.
But most days it’s difficult for us to ignore the abilities we once had.
Independence when in my wheelchair
I’m sure I’m not alone when I feel like my wheelchair is my only real form of independence. I mean, once someone puts me in the chair. But then I’m off, always going full throttle.
The ability to freely move is a basic human right that the disabled community is unfortunately shown time after time isn’t so basic. But this isn’t an article about the lack of accessibility in the world. I want to talk about something much simpler...
Difficulty gripping the joystick on my wheelchair
For the first 16 years of my life, I never had a problem driving. I used the generic, skinny joystick that comes standard with all wheelchairs.
When I went off to college, I switched to a large ball joystick, but that became difficult to grip properly after a while. Recently I started using the large mushroom top, which is better and has a flatter surface to hold, but still not perfect.
Only a wheelchair user or, more accurately someone with low muscle tone like a person with SMA, could appreciate how real that struggle is. It kind of reminds me of the SpongeBob episode when Squidward is injured and using a wheelchair and goes jellyfishing but can’t hold the net.
FIRMLY GRASP IT!!!
That’s what I keep telling myself but it only makes my hands sweat more and feel even weaker.
Losing the ability to drive when my hand tires
Over the past few years, my decreasing ability to drive really affected my mental health and confidence. I started leaving my house less frequently because I was worried my hand would get tired and I’d hold up the group I was with.
Or I’d hit a bump and my hand would fall off and I’d be stranded in the middle of the sidewalk.
I know there are other driving solutions like using my mouth, chin, or head. But I didn’t want to give up on my hands.
With SMA, if you don’t use it, you lose it. And I wasn’t going to let this disease steal another ability.
Searching for joystick grips to solve the problem
So, I went searching for grips or something to put over the joystick shape I have now. This lead me to stumble upon Dragon Grips.
Besides the assortment of shapes and sizes, what sold me is the founder started the company to help his sons, who have Down syndrome, hold on to video game controllers. I’m always about supporting the disabled community.
The grips arrived and I immediately popped the small square on top of my joystick to hold my thumb and a strip around the edge where my palm rests.
These are literally lifesavers and give me peace of mind that my hand won’t slip no matter how sweaty or tired I am.
I definitely recommend giving Dragon Grips a try! Also interested to hear your joystick hacks.
Which emotional aspect of SMA do you find most difficult?