Sunday, October 26, 2014

Getting my legs back

"I hate this €{?.€~*!!! thing!" I exclaimed recently, when struggling to put on my old black, ugly, obnoxious AFO brace before work.  I was using it instead of the right side of my Bioness, because the controller for the right side of the Bioness had developed a crack, rendering the whole right side non-functional, making me frustrated and angry after discovering the replacement part was on back order in Israel.  I mean, really?  It's October...  the best training month for me.  It's training time!  Why did a crack have to develop now, and why were they on back order in Israel?  What a disaster.  Poor me.  It seemed that my right leg was in Israel, and I didn't know when I might get it back.

Bob was what I named that AFO brace, what I used before the Bioness, "Nessy."  Since I started using Nessy, I had developed a deep hatred for Bob.  Bob was hidden in a closet.  Bob used to help me lift my toes.  When I first used Bob, he gave me enough control of my right leg to walk down a hill without falling.  I remember being so excited by that.  I could walk my dog down a hill again!  I loved Bob!

But as I learned to use Nessy, I discovered that Bob was much different, and old-fashioned.  Bob was designed to compensate for certain muscles which didn't work quite right.  But over time, in using Bob to compensate for muscles, those muscles atrophied, so while Bob seemed to help, Bob wasn't, in my mind, the best choice to help with walking.  But Bob and other AFO braces were what was available then.

That day, I was trying to put on a shoe plus Bob.  It's not the best fit.  In fact, most times putting shoes on with Bob results in swearing and yelling.  With Bob, I can't stand straight at all either, because Bob is designed to not allow the knee to lock.  More frustration.  I also had Nessy on the left and Bob on the right...  Awkward! Nessy triggers a leg muscle which causes the foot / leg to kick.  Nessy is all about the leg.  Bob?  Bob compensates.  Effectively using Bob involves lifting the hip.  If walking didn't look awkward previously, it sure did with Nessy and Bob together!  This wasn't fun at all.  It did something to my back, so I had a huge self-pity party going with Nessy, Bob, and a sense of being "off."  Poor me.  I wanted things to equalize, so my gait pattern was the same on both sides.

Sooner than expected, a new Nessy controller arrived!  Life was good.  Bye, Bob.  Well, he's part of my Halloween costume, so I  am letting him hang out this week.

Recently I saw an article criticizing devices which may only incrementally help a person's gait.  It seemed to indicate things like Nessy aren't worth it.  The problem with these observations, done by people with limited thinking, in my opinion, is they look at, say, 16 weeks.  A ha!  In 16 weeks Nessy may not be much better than Bob!  Why pay for these small increments?  And the answer, of course, is time.  My Nessies are 3 years old.  It has taken 3 years, but my legs don't swing around like they did with Bob.  My feet now land between the wheels of Bart (everything has a name!), my walker.

It's very similar to Ampyra.  It was evaluated for short length of time to get approved, and it only helped a small percent of people (about 35 percent).  Over time, like Nessy, Ampyra seems to build in effectiveness, and yet people do not seem to recognize this.

Recently, there was a series of articles on specialty drugs, discussing who should pay and how it should be determined which drugs are most effective.  The study concluded by saying that policy-makers, pharmaceutical companies, and insurance companies would need to work together to figure things out.  Who is missing?  Where's the physician, the physical therapist, the consumer?  Where are those voices, the voices that can give benefits over time?

My voice can tell you that over time, these new things are incredible.  My voice can tell people it takes years, or may take years, to see huge benefits, to see the frustration of having to briefly go backward when we have come so very far.  We need to continue to pursue these important things.

And so, out of experience, I try to follow this advice: "First they ignore you, then they laugh at you, then they fight, then you win." (Gandhi)

I have Nessy, my leg, back.  Now it's time to show how important it is.