When to Use Mobility Devices
When myasthenia gravis (MG) hit me, it smoldered along for the first year or so. I had some episodes of blurry vision, I was assured were migraines. The leg and hand weakness I attributed to needing to work out more and take more breaks from the computer.
Extreme muscle weakness
Then it changed tactics: My weakness became profound. I dragged my legs, shuffled my feet, had to rest against walls and on benches. In grocery stores, I leaned heavily on the cart and was exhausted after 15 minutes of shopping.
I’d get a few groceries, then go back to my car, haul my legs in with my hands because I couldn’t lift them, and rest for several minutes before I even tried to drive home.
I was so unsteady and weak that I started using a cane I had from a previous knee injury. By November, even with the cane, I couldn’t cross a street without asking a fellow pedestrian for help because there was a slight uphill.
I felt too young for a walker
I knew something drastic was going on. That’s when I first heard the words myasthenia gravis from a neurologist. The next week, at a different appointment for something unrelated, the doctor was so alarmed by my gait that he told me I had to start using a walker immediately.
I balked. I was not nearly old enough to be using a walker (or a cane, but I’d crossed that threshold already). The doctor was adamant, and I ended up with a walker that was difficult to maneuver in my house, and I was too prideful to use out of it.
In early December, my roommate and I decided to stop at Target for some holiday shopping. I didn’t have the walker or cane with me. “Use the motorized cart,” he said. I was aghast. I’d be that fat young guy using the cart without any obvious injury.
People would stare. People would think I was lazy. But R was persuasive. “Just try it. It can’t hurt.” I gave in.
It was a watershed.
Mobility aids are not shameful
We shopped for 2 hours and I wasn’t exhausted. We looked at all the things, bought a few gifts, and I still had energy to stop for dinner when we were done. That was when I decided I really didn’t care what anyone thought of me.
Using a mobility aid wasn’t a shameful sign of a character defect, it was just what it said in the name: An aid to mobility. Thanks to using the drivey cart, as we called it, I was able to go out and enjoy an evening of shopping and dinner with my best friend in a way I hadn’t in months.
After that, I saw an occupational therapist where I tried forearm crutches, and we agreed they were perfect for me. I bought a small mobility scooter second-hand, and then I could go to shopping malls and museums and conferences.
Using a power wheelchair
Now I have a power wheelchair and I love it. It means I can go places on my own and with friends. I have the freedom that I’d lost. I don’t have to use all my energy just getting from place to place.
People often ask me, “When is the right time to start using a mobility aid?” My answer is, “As soon as you think you might need it.” Try a rollator or a cane. Rent a wheelchair at the amusement park.
You may be surprised to see how much energy you can save for the things you really want to do.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?