I went to a physical therapy (PT) appointment last week... I go to 2 places - at this place, the PT works with me on my Bioness. For those of you who don't know, Bioness for me are cuffs, just below each knee. There's a heel sensor (very small) that goes under the insert in my shoe. When I strike my heel in walking, somehow that sends a signal to these cloth pieces in the cuff, under my knee. Then a signal is sent by electric device under the cloth pieces to muscles, and this somehow gets my foot to kick up and forward. And to have these devices means I am physically doing better. To use them, Bioness, you have to be able to land on your heel when stepping and I didn't used to be able to do that. My therapist today (at a different place) said, "Oh yes, all the people with MS who are on Ampyra are coming in here now and looking into Bioness." But that's a digression.
I had this PT appointment to check the Bioness pieces, but also to figure out how to get my left foot to go straight instead of out to the side. The PT explained why it does that. With my MS, I had braces (before the Bioness). With and even before the braces, in order to walk, I would swing my legs out to the sides. Think exaggerated penguin walk. The PT explained that I actually learned to do this so I could walk. It's a different explanation and I like it. The other explanation wouldn't have any learning in it - I just did it. Regardless, in learning to walk this way, it became habit.
Enter Bioness. First I got it for the right leg and the the left. I swing my legs less, a combination of Ampyra, Bioness, PT, and working on walking. But what bugs me the most now is my left foot sticking out. If I think about it, I can stop it. It takes a lot of thought, and then I have to think of trying to get the right leg between the wheels of the walker, take bigger steps, and stand straighter. Who knew walking could require so much thought! All this info comes from opinions of multiple physical therapists. To walk the new way, left foot straight, right foot inside wheel, etc, I have to walk more slowly. When I'm walking for speed, I ignore these things.
This is all actually a digression. While I was there, a patient was there in a wheelchair that provided a lot of support, so a high back, arm rests, etc. Depending on the disability, wheelchairs are designed totally differently. I don't know how this guy got to needing a wheelchair, but he did seem unsteady and very shaky. But he had a determined look on his face. With help, he transferred to a bench and PTs moved his wheelchair about 6 steps from him and brought him a walker. I think this was his first attempt at walking in awhile.
I missed the walking because I was working with my PT, but I did see the end. When he sat in his wheelchair, totally exhausted, he looked shocked and satisfied at the same time. He didn't know if he could do that but he did. The determined look in his face prior to his walk told me he was going to do whatever he had planned, no matter what it took. And so he made it. He has started something based on a great deal of determination. It reminds me of things I have tried since Ampyra. And his determined look reminded me of how I feel sometimes. He was wiped out and at the same time, amazed and satisfied. He had made it.
6 steps. It's so small, but it's also so big and important.
Another time at the other PT office where I mostly, I was leaving as I heard a guy tell my therapist: "I have MS and I want to work on my posture." He was there with a walker. I didn't see him walk, but I thought Ampyra, and isn't this drug giving remarkable hope to people who have hoped for so long, and who have refused to give up, even when it was essentially suggested they make do with what they have? My therpist says some people get stronger without knowing, and they don't work at Ampyra, but she tests them and it is working. But the people who get further with this drug are the people who really work at it.
In times whe I feel discouraged, I can remember these people, and how I must continue to fight. I may not be near where I want to be. But we all must start from somewhere. I don't think he had MS. But for so many things, one just never knows what can happen, where science can take us in the future. So, we keep going, we refuse to give up, and we're ready for any new science miracle.
Perhaps 6 steps for him. For me, I don't know. I do know I started with standing for longer. I don't know how far I will go, but I am starting to stand unassisted, and other things, done mostly when no one is there to see my miracles.
6 steps for the one guy was perhaps my inspiration, as I suppose my strange walk does the same for others.
This is the good stuff. Life throws other curve balls at the same time. Right before and after I have turned 40 I have had new challenges outside of me getting physically better. Anne Lamott, a great writer, talks about putting the bad stuff in a box and handing it to God. Maybe I'll do that. I think God wants me focus on beating MS anyway.