A Quadriplegic’s Perspective on Mobility and Movement
Because of MS, I can’t move my body below the neck. But I am far from immobile.
Well-intentioned health advice torments me
"Eat a balanced diet. Get lots of sleep. Exercise regularly. When you can’t exercise, at least get up and stretch for ten minutes each hour. Whatever you do, don’t sit on your butt all day long. That’s the worst."
And here I thought MS was the worst.
Whenever I receive this advice, I am reminded that life in a power wheelchair is a compromise — a necessary evil — rather than a solution. But I have no choice, so I make the best of it.
Doing what I can
Although I am a quadriplegic, I still experience movement below the neck.
There is a treatment room at Back in Motion Physical Therapy with my name on it. Really. I’ve been a patient there for over five years. Only one therapist has more “seniority” than I. My joints and muscles, not to mention my mood, benefit significantly from these stretching exercises.
Kim, my caregiver and spouse, moves me frequently. This is not so much therapeutic in nature as it is practical. She uses an overhead lift to transfer me between bed, wheelchair, toilet, and shower chair. Throughout the day and occasionally in the middle of the night, she adjusts my posture, hand and arm position, foot and leg position, and head position.
She’s a busy woman, and I am a lucky man.
Micro movements
While I sit in my wheelchair, gravity acts upon my body. My butt slides forward in the seat, millimeter by millimeter, distorting my posture. My shoulders creep forward, and my head bows ever so slightly, causing my body to (sort of) curl up into a ball. I use the tilt feature of my power wheelchair throughout the day to counteract these tendencies.
When I tilt back, my butt migrates ever so slowly toward its proper position. My shoulders settle back. My head alignment straightens out.
Lather, rinse, repeat.
Head movements
Fortunately, I still have control of my head movements. What does that get me? A lot.
- Facial expressions
- Field of vision
- Chewing and swallowing
- Speech
- Mobility, yeah, that’s right…
Six months ago, I decided that it was no longer productive or even safe for me to use the wheelchair joystick. My timing couldn’t have been better. A device, called the Munevo Drive, had just become available in the United States. It translates head movements into Bluetooth commands. These Bluetooth commands operate devices like my power wheelchair, computer mouse, cell phone, and even my Jaco robotic arm.
Technology brings independence for me.
Mobility brings me joy
Because of technology, and because I maintain control of the muscles at the top of my body, I am mobile. When I'm in my chair, zipping down the street, at a speed and direction of my choosing, I am alive.
Mobility brings joy for me.
Appreciating what I can still do
No discussion of how movement affects me would be complete without mentioning experiences of moving through the world as a passenger in a vehicle. Granted, everyone experiences this, but it’s different for me. It’s different because it’s normal. It’s different because I don’t get to experience other forms of movement in the same way non-disabled people do.
Losing control of my body has been awful. Not appreciating what remains, however, would be a tragedy.
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