Wednesday, July 18, 2012


One of the first symptoms I had with MS was bending over when I ran.  I would start to bend, then more and more, and I could fall.  This was videotaped for doctors who all (except one, and he wasn't a neurologist) said this couldn't indicate MS.  But it did.

Now, over 20 years later, so many things have improved with Ampyra and the Bioness.  But a struggle is the ability to stand straight, which translates into the ability to walk without bending, and walking without bending is made more difficult when pushing a walker forward, since that somewhat naturally makes a person bend.

I told my physical therapist about this bothering me (so if anyone with MS reads this, physical therapists can really help you!) and we spent a session analyzing what was occurring.  There are so many muscles involved in standing - it's not just your leg muscles that keep you vertical.  A big driver are the muscles in the lower stomach and gluteal.

Who knew?  If you are "normal" and just standing, you don't think to tighten these muscles so you don't bend.  When I stand, to get more vertical, I squeeze those muscles.  It's also quad muscles - my right side is weaker than my left, so to get to standing and to strengthen the right quad muscles, I start with my right leg behind my left, and then push up.  Then, to further strengthen quads, I shift from right to left a few times before walking.

It's incredible, I think - all this work to try to get more vertical.  It's work I can do in the summer when it's too hot to walk outside and there's not a lot of room to walk inside.  All this work when others just do this simple action without thinking.

I spend some time watching how other people walk - how they get up - which muscles they use.  It just doesn't seem to take that much to stand and walk.  But then, when something happens, there's the realization that it takes an incredible amount to stand and walk.  And I am lucky to have the opportunity to see how much it takes.

In a sense, having this opportunity is great.  In another sense, it's difficult, watching people and thinking how easy this stuff looks, when it really is not easy at all.  I will sit and think about how people don't realize how much is involved - they get up and go.  When I walk people may make comments like "are you ok?" So I realize there is a long road to go.

So if you don't have MS and read this, perhaps you know someone with MS (besides me) and you can think, when they stand, how much may be involved. 

It's a matter of gaining strength.  It's a matter of getting connections to possibly work again.  And to that end, I read a study this week of some protein (I think - I'm not a scientist) that is thought to trigger something going wrong at points where potassium helps transmit signals.  And that is where Ampyra helps - to connect those signals.

For those of us who are on Ampyra and it's working, we're finding all these broken things and trying to reconnect and fix them.  It's really amazing - from the standpoint of being exciting, but also during those times when we realize how much is involved, how much needs to be fixed, and how much work it has, and continues, to take.  But for some of us, we are willing to attempt those fixes.  It's not easy and often, not fun.  The results may be fantastic.

And since this blog does involve the element of faith, it's taken faith as well.  There are times of happiness, times of frustration, times of being tired, and so on.  There are songs my daughter learned at camp and now I know them.  They are calming.  In the midst of what feels in a sense like chaos trying to be fixed, there is still chaos.  But I can find that time, find quiet moments, to sing those songs.  One is simple, starting with "Be still and know I am God," and then cutting out a piece each time it is sung, so in the end, the word "Be" is sung three times, leaving a person in silence and peace. 

Amidst all that chaos, work to get better, feelings of success, feelings of how much is left, uncertainty as to what is to come, and the emotions that go with this, there is


No comments: