When I first started working with my physical therapist, Sarah, in 2014, I could not maneuver out of my bed without assistance. Over the years, I learned how to trust her decisions and how she was pushing me to try new things. We had a vibe between us, and freely exchanged ideas when it came to aiming for my ultimate goal: walking again and gaining as much strength as I can.
Living with neuromyelitis optica spectrum disorder (NMOSD) symptoms, including weakness, occasional paralysis in my arms and legs, and painful spasms are directly addressed by physical therapy.
During a recent session, Sarah was running over with her patient before me, so she asked another therapist to see me. This session was difficult. My normal, sunny-outlook therapy session with Sarah was replaced with a rainy, dismal outlook.
I had never worked with Amy, though I’ve seen her around and know she’s Sarah’s boss. Amy tells me she has to test the strength of my leg lifts and my mobility when walking with a pair of canes. That was a goal of mine, but I put it on the back burner because I was needing a hip replacement. And that surgery was my top priority.
Read about experimental therapies for NMOSD
I wasn’t ready for that display of strength and mobility. It was just a few weeks ago that Sarah and I developed a new set of goals. And we were working together to meet those goals. But undertaking this session with Amy was different. It felt almost immediately as if I was going off course, looking back and not ahead at the progress I made.
When I began walking in my session with Amy, I was uneasy. I suddenly experienced a deep dive in my confidence level. In the past, I have been dropped by therapists who said I was difficult to work with. During this session, I did not walk as far as I had in prior sessions with Sarah. I was compelled to seek refuge in my wheelchair.
When we go back to her computer, she proceeds to tell me that she is going to end my therapy today because she doesn’t see a big difference in my progress from the last month. I explain that I was working toward different goals with Sarah—and we were making progress. But Amy was resolute. Since she didn’t see progress, my therapy sessions will be canceled. Amy told me there were limits to therapy and advised me I should just continue doing the exercises at home.
Forget the fact that it took me 9 years to begin walking upstairs again with a walker, and being able to take a few steps without any assistance.
Everyone’s recovery is different. If it took 9 years for me to get this far, what did Amy expect to see? She saw me for 20 minutes. The progress I made over the long haul was discarded.