About a week ago I got to go spend some time with students learning to be physical therapists (PTs). My therapist had asked if I wanted to do this and I thought it sounded neat - a way to educate using real patients, because for awhile, PT students may not get a lot of interaction with patients, and they have to practice various tests on themselves.
3 students were assigned to me in the morning and then 3 in the afternoon. They did various tests on me to do things like check reflexes, strength, and range of motion. It was interesting to watch as they had not done much of this previously, and had not been exposed to MS, so I found myself explaining Ampyra in detail to them.
Several questions they had were interesting:
"Have you fallen much lately?" To this I asked them to define a fall. I think people think of falling as such an easy thing to understand. But really, it's not that simple. With my MS, I know when I am getting tired, and I might actually plan to sit somewhere, which I suppose could be judged as a fall. Their definition was the unexpected event, not planned at all. This rarely happens because I can work though things so that instead of falling, I am sitting, purposely.
"Is having a progressive disease really hard emotionally?" That's a loaded question! I think perhaps people look at things totally differently from the outside. Since Ampyra, I've been improving physically, so I don't feel that MS is draining me emotionally. In fact, being on Ampyra has done the opposite for me. The problem with seeing students 1 time is they haven't how far I have come. But the main answer to this question, is that often it is not the disease that is emotionally draining as much as factors outside the disease that drive stress, create an emotional drain, and impact the disease. These factors are part of everyday life - home, work, etc. It's the external factors that are more draining than the actual disease itself.
"How do you get out of bed in the morning?" This was a question asked in the afternoon. Something strange happened that day. In the morning I felt fine. In the afternoon, the room felt hot. My body felt like it was going numb. I was supposed to be rolling on and off a mat, which was not like my bed, but apparently the PT students thought it was enough like a bed to wonder how I managed. They also wondered if I had a grab bar to help get out of bed. Wow - did I look that bad? I don't have trouble getting in and out of bed like they were thinking.
What I chose to do was to explain something about MS to them. Someone with MS may come to physical therapy and perhaps at some point they may want help with something like a bed. But a neurologist said it best when he said, "There's one thing everyone who comes into my office with MS wants and that is to walk." That's it. Yes, we want to move around our houses, get in and out of bed, have a life. But when it really comes down to what is most important, I think we just want to walk.
As I finished that day and took a real downhill spiral into an evil fever and cold, I thought about the day and whether I would want to do something like that again. And I surprised myself. While always wanting to help people, my "calling" is not to go and provide education in the form of being poked and prodded by students. To me, that points out everything that is wrong, rather than all that is right. I can educate students on what people with MS really want, and get them past MS being the emotional driver (because the emotional drivers are external to MS many times), but something about doing that in this context didn't work for me.
A big part of it is all the poking and prodding I experienced on the way to diagnosis. I was diagnosed at a teaching hospital and went through so many tests at an age when most kids are in college and learning to be independent. After college, I worked at another teaching hospital where there was more poking and prodding. So educating the PT students somehow brought back memories of trying to figure out what was wrong with me, the frustration of all the various tests done again, and again, and again. For me, I've been there, done that, and am moving on.
Right after I was diagnosed, I went to see the Pastor at our college. That was, I suppose, the beginning of the end of the poking and prodding. Now that I had a diagnosis, one "treatment" was talking and praying with him, and there was no poking and prodding. And from there, life could continue.
Many people with MS go through yearly MRIs and I think they get poked on a regular basis, but I have found ways to cut back on that. These last 2 years, I have really been able to look forward, to focus on the positive, and that's the way I'd like to continue.
Kudos to people who can help PT students on a regular basis. I suppose we all have our different, unique gifts we can offer to educate people on so many things, and the experience of working with PT students for me was valuable in showing me there are many others areas in which to focus.