UPDATE: I originally posted this in September 2017. I used a power chair for six months. I thought I would use it for the rest of my life, because FSHD muscular dystrophy is a progressively degenerative neuromuscular disorder. But I kept searching for a physical therapist that was the right fit for me. Four PTs later, I found her. It wasn't only her, it was her whole team. I was discharged from my therapeutic plan eight weeks later on my birthday. I had gone from using a wheelchair when I first started to leaving using a cane. After two more weeks, I no longer needed the cane!
It is now three years later, and I still do my PT exercises almost every day. If I miss a few days in a row (due to illness or travel), I can feel my legs getting weaker. This motivates me to exercise regularly. I am deeply grateful to be walking again.
For those out there who need to use a power chair, I hope this article is helpful in a practical way or gives you a chuckle.
From September 2017:
What do PAC Man, mushing, and belly dance have in common? They can help someone operate a power wheelchair!
Thanks to a local MDA Loaner Closet, I acquired a power chair to use until I get my own chair. This process can take up to six months through my insurance. When the delivery man dropped off the chair, he showed me the different parts, how to turn it on and off, charge it, and make it move. But how to drive it around? I had to wing it on my own. I am a research-aholic, but had no luck finding tips for driving a power wheelchair. So I learned by experience.
A mechanically inclined fellow taught me to turn corners easily by lining up my wheels, then turning. Ding, ding, ding! “A right angle,” said the math lover in me.
2. PAC man
Once I learned the secret to turning corners, the 80s girl in me realized, this is like playing PAC Man, joystick and all.
The first time I took my chair for a roll in the yard and felt the uneven incline of a hill, the musher in me instinctively leaned toward it, immediately feeling like I was on a dogsled.
4. Belly Dance
I don’t want hot tea in my lap! I quickly learned to carefully balance my hot cup of tea while moving. The belly dancer in me is thankful for all the times I have practiced balancing. I also noticed right away that I usually sit up straight with dance posture while driving around. This is helpful to my muscles and spine.
5. Vermont winters
Thanks to driving on snow-covered roads for decades, the Vermonter in me
learned to slow down going around corners and speed up a bit outside on grassy inclines.
6. Mud season
I had to laugh the first time my chair got stuck in the mud. Oh, the familiar sound of spinning tires! I have lived my whole life in both Vermont and Tennessee. Vermont has mud season every year when winter thaws and spring rains come, and Tennessee has clay. When clay gets wet, it’s as slick as ice. Thanks to getting stuck in the mud in both states, I knew what to try in my chair.
Main tip-avoid mud, if possible! If you do get stuck, try moving your chair forward and backward in a rocking motion. If that doesn’t work, try something with texture around the wheels: sand, hay, cardboard, wood, whatever you have available. Another option is to have someone else enable the manual function of the chair and push or pull it out by hand.
7. Narrow dirt roads
Sometimes I have to do a three-point (or more) turn inside and outside. The country girl in me smiles remembering how many times I have done this in a car on narrow dirt roads.
TAGteach is a method of teaching that includes using visual targets for specific, precise learning. The TAGteacher in me recognizes I have used this method several times. One example was trying to back up in a narrow area in which I kept bumping into things. Then I realized that if I focused on following the visual target of the lines on the floor, I could back right up without hitting anything.
9. Alexander Technique
The Alexander Technique helps you move your body in a more relaxed way. When I first started using the power chair, I pushed hard on the joystick arm while backing up and making turns. This made my hand and arm ache. The AT user in me recognized this, and I realized the chair doesn’t move any differently if I use a light touch or tense pressure. Keeping it relaxed is the way to go.