Monday, August 1, 2011


This past week I went back "home," to "Ft. Fun," aka Ft. Collins, to visit. I think Ft. Collins will always be home, but the longer I’ve had MS, the more difficult it has been to go back there, to navigate things that used to be so easy – things I took for granted until they became difficult.

The last time we were there was Christmas, after I had started Ampyra, but things were (and still are) difficult. When I'm where I live now, I have routines, ways I move about my house. It’s adapted for Beth. I can walk a lot in my house. It's "easy." But when I go anywhere else, things are never easy. In certain places, I develop my own way of getting where I need to go in a routine kind of way – say at church and at work. So in those places, I can be more "functional." Functional is just that – I can function walking, and the people there generally know me and how I "operate," or maneuver around the world.

This time in Ft. Collins certain things were still very hard. We went to lunch at a place where I had to walk a bit to get there, but I did make it. Then we went "home." That's always difficult – there are 2 big steps to get inside and the steps being so big seems to be the problem. Then it's summer, so there was the combo of already walking a lot, the steps, and the heat. Somehow I, or we (team approach!) made it. It was the next day when I realized that on other trips, I had used Nemo, the wheelchair. But Nemo stayed in the car, as I (or we) found new ways to navigate.

For those who have never lost any mobility, it's interesting and fascinating when it comes back. Mobility doesn't just "Pop!" come back. Muscles come back, but using those muscles is actually different. There's a transition to learning to use those muscles, to test them, to see if they are there. So over a few days, I was testing. When it was difficult to push or pull myself up, I might have failed once. But now, I instruct myself to push on specific muscles, generally my quad muscles, to pull up. After the quad muscle, I have to think of hip muscles contracting. Otherwise my legs straighten, but I am bent and can't move.
Many times I find myself doing this – reasoning through something. There are times now when I find myself "in trouble." But then I think wait, how can I get out of this? Is a leg crossed? Can I “uncross” the leg? How? Do I need to call for help? Before Ampyra, there wasn’t time to call for help. Now my legs can hold me in an awkward position and I have a bit of time to wait… for help, or to figure it out on my own. There are times when I do have to figure things out on my own, and usually I can. It’s not graceful, but I suppose it’s a new “functional.”

So as I went through the few days, I was thankful. Yes, nothing in life is ever easy. Everything I do requires thought - a big extra step when I think of how to move.

But then I realize I can do this. I can navigate.

Life is good. We are all held and loved.


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