Tuesday, December 20, 2011


There's such a mix of things going on right now - perhaps I should write about finally finishing my Masters, perhaps how much shopping I have left, ..., but I'm feeling like talking about walking again, and Ampyra. Perhaps I sound like a broken record with this stuff, but it's really amazing to me, and continues to be so.

Before I started Ampyra, I mostly used my wheelchair and had an old leg brace so I could walk as much as I could, which was not much. I was never stable really, in the sense that I am stable now. But going back to my first leg brace which gave me as much stability as I could get...

I remember when I got the old (ancient) leg brace. I definitely didn't want it. Those things are ugly. When someone came to show me one and dove right into being excited about it, I wasn't ready. I wasn't excited. To me, this just meant things were getting worse. My doctor was there and sensing this (because he is one of the very few who can sense these things), he asked me "is this ok?" That was the break I needed in the conversation that got me out of the "deer in the headlights" moment I was having. I got the brace. I put it in my closet. I was going to fight using that... thing. Yuck.

I had more and more trouble walking and started avoiding steep hills for fear of falling. One day I got the brace out of the closet and decided to try it... yuck. But wow - amazingly, it made walking easier. I went to the hill, walking my dog, and I could walk down the hill again. So I got used to the ugly brace, and it became a good thing.

When I got my wheelchair, there was a similar process. I finally decided to use it to go into work when I was pregnant and was really afraid of falling. I sent an email to our entire department to tell them of my decision and they were very supportive. And through this, I grew to like my wheelchair - I could finally go to the mall again and it was freeing.

Over many years this was the state of things - I had the leg brace which grew old, and a wheelchair (eventually I got 2 wheelchairs because a new model was better for me).

Then came Ampyra. I started walking better. I started going to physical therapy. And my therapist looked at the old leg brace and declared it didn't fit me at all anymore. Back to the doctor I went to get a new brace and someone apologized that the brace was 9 years old - apparently they are supposed to last 2 years or so.

This time it was different - instead of looking at a brace as a negative, I couldn't wait to get a brace that would help me - but I do have to say the new brace wasn't quite as ugly. I kept going to physical therapy and started using a brace for the other leg there. It seemed to really help, and soon my therapist thought I should get a brace for my left leg. And now that times are different, I was excited! This brace would help me walk better. The yuck reaction was replaced by wondering if I could go further and faster.

The new brace definitely helps me to walk better - it helps me lift my toe. Walking feels so much smoother. It's winter, so people can't see, but I laugh about the summer. It's going to look really ridiculous when I wear shorts. But, hopefully I'll still be walking better. I feel like a bionic person. There are a few things that are a bit more difficult - getting up is one. It's hard to explain nuances of braces. With the left brace I can lock my knee; with the right brace I really can't and I've decided I should really have what I have on the left on the right as well.

So this past weekend I graduated. In the week before that, the brace was new. I was walking a ton. I walked to a concert, up a long hill. I walked, for the first time, into my daughter's school (it has a huge hill to get into it). All the kids stared and finally one asked me _what_ I was doing. When I told him my legs don't work right, he smiled and said without pause, "it looks like you are dancing."

This past weekend was graduation. I had a goal. I wanted to walk across the stage. Without the new brace I couldn't have done it because there was a huge ramp. But I did it. I did get very nervous, afraid of holding everyone up, and so it wasn't a good show, but I made it.

A long time ago when I decided not to go on another medicine, our pastor, who knew I was having trouble deciding what to do, asked me what I was going to do. I thought and then said I was going to wait. And I thought to myself that I really hoped something else came along. Well, it did. This stuff doesn't happen with everyone - waiting and then something good unexpectedly happening. But it did, bionics and all.


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