Although this blog is about "the bubble machine," which helps me to relearn to walk, it's that time of year when I am raising money for the MS Society by participating in the MS Walk. Here is the link to donate: http://main.nationalmssociety.org/site/TR/Walk/COCWalkEvents?px=1946588&pg=personal&fr_id=23574
Why should you donate (besides what it says when you click on the link?)?? Well, here is one of my stories. Without the MS Society, there might not be Ampyra, the medicine that has saved me in many ways.
To review (skip this paragraph if you know me!): I was diagnosed with MS over 20 years ago and I have had MS for almost 25 years. I had the kind where I got attacks (times where I was tired and couldn't walk) - they were every year, then every 6 months, then more often... with each attack I didn't fully recover physically. But I did continue with life and never stopped trying to push myself physically, which is why, I am told, I am walking as much as I am walking today. (Never give up.) Over 3.5 years ago I started on a medicine called Ampyra which is only supposed to help a person with MS walk better by 25%, and it only works for 40% of the people who try it. I started and knew within 2 days something was happening. I have continued to improve over the past 3.5 years in many more ways than walking - anything that involves muscles, and by much more than some silly 25%. 3 years ago I started using a gait-assisted treadmill which is a harness that holds the upper body while a person dangles over a treadmill and then the body is lowered to the point where feet touch the treadmill, and the person can walk without having to support their upper body (because of the harness). That was awesome. I kept improving and then got things called Bioness. They go around my calf muscles and shoot signals to the muscles that help me lift my toes. Rather than ugly leg braces I now have cool robotic devices. But they didn't work with the gait-assist treadmill for various reasons, so goodbye gait-assist treadmill. And then there was nothing really new to help, for awhile.
But there is now a bubble machine developed by NASA! It's called the Alter G and you can see a picture of it (though it's not a good picture!) here:
It's a treadmill, but rather than a harness, there is a bubble, and the whole thing works with the Bioness - explanation coming. First, there are shorts that go over pants and once pulled up, the bottom half of a bubble shape forms around the hips. After bubble shorts are on, I walk over "bubble wrapping," and onto a treadmill to get ready. While for anyone else, walking over what is like a small heap of rubber clothing would be easy, the heap looks big to me. Once on the treadmill, someone pulls the bubble wrapping I just stepped over, over the bubble shorts (they really need a better picture of this!) Then, like getting blood pressure taken, air is turned on and the bubble inflates. I seriously think it's like the process in Charlie and the Chocolate factory - where a kid inflates into a giant bubble gum thing or something - it feels like that. Once fully-inflated, a person's weight is determined. Then a certain amount of air is let out so the bubble machine only supports a certain percent of the person's weight. In a very small way it reminds me of how water in a swimming pool can hold a person up. And then, walk! Afterward, I feel a bit like I am floating all day. I couldn't do this previously because my legs didn't want to go straight, so I couldn't stay on a treadmill without someone guiding my legs. The Bioness requires me to put a certain amount of weight on the treadmill; I couldn't do that with the gait-assist treadmill.
The bubble machine is a next step for me. I didn't used to be able to use it because I needed basically 100% support of the gait-assist treadmill. And the next step comes at a time when I think why should people donate to the MS Society this year?
It's not just about me and getting better. It's about funding for research toward finding the cure for MS. It's about finding perhaps a vaccine so no one ever has to get MS. It's about continuing progress year after year, progress that cannot stop if we are ever going to kick this thing called MS.
So many people with disabilities never asked to have a disability - I have been reminded of that this week. With disability there is uncertainty: for me, will I be able to get up tomorrow morning?; for someone else, different uncertainties.
There are several certainties as well. God helps us through all this stuff. Family and friends help Persistence is important. And donating, no matter how much, is critical. Here's the link again:
Every little bit helps.