I use a wheelchair part-time right now. Which basically means if we are going to be somewhere where I have to stay on my feet for more than 10 minutes I use the wheelchair. I sometimes feel embarrassed knowing people have seen me walk, but have also seen me in my wheelchair. I wonder if they think I’m a fraud or something. Part of the reason I use the wheelchair is because I don’t have the stamina or muscle strength to walk for very long. But another big part of the reason is falls.
For a lot of people with ALS (hereafter I’ll use the acronym PALS), falls are the first symptom of this disease. The majority of PALS are limb-onset, and of those, it is more common to start in the legs/feet. I am bulbar onset, meaning it started in my speech/swallow region. When I was first diagnosed my legs were totally fine to walk and run. As the disease has progressed it has slowly been making it’s way down to my legs. Over the past few months I’ve started having falls. The problem with falls for PALS is that we have weakness in many parts of our body and that often means that we are unable to maneuver ourselves mid-fall. It’s more of a rag-doll fall, zero control. This is so hard to describe to someone who hasn’t experienced it. Suffice to say, you have no idea how skilled you are at falling until that skill is removed.
I had a fall the other afternoon. My head smacked against something and opened a small wound that bled like crazy and scared my husband! Luckily, despite all the blood, it did not need stitches so I am recovering in the comfort of my own home. Falling is dangerous for PALS, and it’s a big reason to start using the wheelchair, or another mobility aide if one is deemed more appropriate. Not only are falls dangerous in terms of potential for acute injury, but, for reasons not entirely clear, falls seem to speed up disease progression in PALS. And that is the absolute worst thing for us.
So the next time you see someone in and out of a wheelchair keep in mind there are many people with all different disabilities who legitimately need a wheelchair but can also sometimes walk.