On 60 Minutes this week, there was a story about chips implanted in a person's brain that enabled the person to move a prosthetic arm and hand by having them simply think about moving it with their mind. I thought how similar that is to what I have experienced with Ampyra - getting function back, but having to think through movement rather than movement happening automatically. And as we enter 2013, I have to wonder, what may be next?
It's really amazing how things have continued to change as I have continued to take Ampyra over the past 2 and a half years. I suppose people can get tired of reading of the changes, but it's my blog, and I hope perhaps someday I'll have time to look back at the changes that occurred over time, which now are in individual entries in this blog which contains more than just Ampyra. 2012 was another great year on Ampyra, and the time on Ampyra strangely has helped me through other very tough parts in my life which I don't discuss here.
For Christmas 2012, we went to my parents' house. Getting around their house is never easy and the most annoying part is the 13 stairs leading to the upstairs, where all the bedrooms are. Forever, I have scooted on my rear up these stairs, with my mom helping so my legs don't slide off the stairs. At one point, the stairs were almost impossible, in part because they are also very narrow.
This Christmas I got to the stairs, at 10pm, and in my mind, I thought, it just seems like I should be able to climb these steps rather than sit on them. I could visualize climbing the stairs. Visually it seemed so easy. I called my mom and asked her to help by lifting my left foot onto the first step (I can sometimes swing my own leg/foot onto stairs, but those stairs aren't wide enough to do that.). Once she did lifted my left foot, I held onto each of 2 banisters and thought about pushing up on my left leg. It definitely wasn't automatic, but when I really thought about pushing, it worked. My left left pushed up and I swung my right leg to land on the same stair. My mom continued to lift my left leg onto each step until we were halfway up the stairs, at which point there is only one banister.
I then transitioned to using the stairs as banisters. Visually, it still seemed possible. My legs did 95% of the work, but I needed leverage, using both arms for balance. Again, via really thinking of pushing on that left leg, I did the same thing, and I made it to the top. I did this new routine on 2 consecutive days, at the time of day when Ampyra really "kicks in," which is about 10pm.
Stairs - so simple - or not. These are the same stairs I would bound up, 2 at a time, as a kid, never using the banister, and never thinking that climbing stairs involved so much.
At night I have been working on going from sitting to standing. Since Ampyra really kicks in at about 10pm, I do this work then. Recently I've been able to stand from our bed without using my hands to push up. Sometimes I get stuck and then I have to think about how standing occurs. I actually have had my daughter stand for me so I can watch how people stand! She finds this funny.
I noticed, when stuck, that I wasn't moving forward in standing - in standing, you actually do move your body forward a bit. I move forward a lot, and if I don't, I get stuck. But one night (and the night before that), I had a new revelation! When a person stands, it's not just the quad (upper leg) muscles that are used. When I move forward in standing, if I move from my heels to pushing on my toes, lower leg muscles are somehow triggered and that helps me to stand. When the upper leg muscles start to tire, I can use those lower leg muscles, as my toes dig into the ground, or I can use all the muscles at once if I really think about it. It's another thought process, but it has to occur fast... when "stuck," right in the first second, I have to think to push on my toes. Then I feel all the muscles work (as opposed to someone who normally stands) - I feel outside quad muscles, calf muscles, toes digging to the ground. And then I hold that standing position. It's awkward... but I can sometimes hold it long enough to relax a bit and stand straighter, without everything tensed in a state where I am much like a stick, or the Jenga block at the end of a Jenga game, where any slight movement can make the block topple.
Such easy things - going up stairs, standing up... they are automatic for so many people. For me, they require a lot of thought - sometimes quick thought. Isn't it amazing - all those muscles, big and small, that work together for such simple things?
And then there is so much else - not needing as much sleep is another thing. You see, when I discovered things about standing, it was after 10pm. Everyone was asleep and I was ready to yell the great news. In the morning, it wasn't quite the same feeling of wanting to proclaim standing. "Look at me! I can stand! Did you know?! There are all these muscles involved! Just watch!" Then again, I'm awake before everyone. I don't need as much sleep. Everything is very different.
There are dreams, as there have always been dreams. In my dreams, I look at the stairs and simply walk up them, effortlessly. In my dreams, I wonder why I have a walker, so I leave it behind and walk smoothly and effortlesly. In my dreams, everything is so easy, automatic, and effortless.
I suppose being able to do these things was a pretty good way to close out 2012. Hopefully, 2013 will bring more great surprises. No need for new year's resolutions. What will happen will happen, and I will give it everything I have. No limits. And for anyone who doubts, never say never.