Friday, June 22, 2012

A good ending

This past week I got my first pair of "real" running shoes in years.  It's not that I'm ready to run in them, but, well it's complicated...

Instead of braces on my legs (called AFOs - sounds like an alien invention!), I now have what's called a Bioness on each.  The Bioness has 2 parts.  There's an upper "cuff" that goes right below the knee, and there's a heel sensor that goes between the insole and shoe (where the heel strikes when walking).  When I push on my heel, that activates the heel sensor.  Somehow that then talks to the cuff, which has 2 electrodes (don't quote me on terminology here!).  The cuff is placed in just the right place so the electrodes "zap," or send a signal, to some part of the outer calf.  That part is actually the part that sends a message to the foot, or actually toes, to lift up and then kick forward.  It's really cool because I can plant my heel and then really kick my whole foot and leg out.  Anyway, back to shoes.

Because I have heel sensors rather than huge braces for shoes, I can wear more than just the big clunky shoes.  I'm still limited, but I don't have to worry about shoving a brace into my shoe.  I have to make sure there is heel stability.  I broke out a pair of sturdy sandals and have been wearing them, but they are not good for when I really want to walk further.  And I am sick of the big, clunky black shoes I wear everywhere.

So I went to the running store.  The guy there was really nice and didn't ask why in the world the lady with the walker wanted running shoes with solid ankle support.  He showed me a pair and remarked they are good for pronation (that's when the foot turns in naturally).  I have the opposite problem - my feet tend to turn out so my ankle bends out.  I think I've always tended this way.  In high school some people came to analyze our running technique and said I had a very strange knee alignment and something strange with my foot.  My physical therapist says my foot tends to stick out to the side instead of straight.  I have flat feet too!  Maybe these things made me fast, yes? 

I found a pair of shoes.  My mom and I went home and that night I set them up with the heel sensors, ready to go for an early morning walk.  The heat has been getting to me lately, so I didn't know how the walk would go.

The next morning everything was set.  I got out of the van, got the walker, and started.  And then I stopped.  What?!!  Don't heel sensors work with running shoes?  I could feel a zing being sent to my right leg, but it wasn't responding at all.  Nor was the left.  So, discouraged, I went home in a pout.  I put the heel sensors back in my other shoes.  The same thing happened.  I "made up" that it was the heat, that nothing was going to work that day.

That night we went to Starbucks with the old shoes.  Same thing.  Impulses clearly being sent but nothing was happening.  Pout.

When we got home I did a bunch of exercises to see how bad this MS and heat was getting to me.  But the exercises went fine.  Terrific.  I "made up" the Bioness was broken and I would have to wear clunky shoes and AFOs made by aliens (see paragraph near beginning) for life.  Pout.

This morning I got up and figured I would call the physical therapist.  We have a prayer group in the building where I work.  So I went to that and yes, we did actually pray that these things start working again!

Back at my desk, I made an appointment and talked with someone who told me to check the heel sensors.  And so I took the right heel sensor out.  I squeezed on it.  And it activated the left cuff.  So, if you haven't figured it out, the right heel sensor was trying to get the left leg to move while the left heel sensor was trying to get the right leg to move!  Thus, there were a bunch of signals all mixed up.

That just goes to show that when doing something as easy as moving heel sensors between shoes, it's important that they go in the correct side.

I guess those prayers worked.  No, there was a scream to switch the sensors that wasn't being heard - to think more than one way.  Perhaps there was a scream to stop doubting ability and instead figure out why.  A plea to move forward and believe in myself without doing a bunch of exercises to convince myself I'm ok.

And in the end, though frustrating, I have to laugh.  Zing, zing, zing.  Now to switch the sensors to the running shoes...  the correct way.


Friday, June 15, 2012

And now I know...

We live on a cul de sac, about halfway around it. Get to the end of the cul de sac, look left, and there's a bridge over a stream.

I love streams like this - the water flowing, just as life flows...

I used to wonder, what is it like for people to walk to the stream, see the water, and feel a breeze...

Today I went on my walk and found myself so close to that bridge and river.  And then I was there.  Blocking back tears which wanted to come, I looked at this stream.  It continues; there are rocks, branches, various things blocking the path of the water.  But the water finds a way, just as in life, we may search and find our way.

My husband returned home allowing me to continue to the top of the hill after the bridge.

A breeze on my face, tears blocked, looking up.

It's the little things that count.


Sunday, June 10, 2012



My lucky number (from a piano competition as a kid).


Today, two years since I had an MS attack.

Two years since I woke up, could hardly walk, was beyond tired, and called my doc to request steroids.

Almost two years on Ampyra, the drug supposed to help with walking, not with MS attacks.

Two years of improvement with walking, sitting, standing, and much more.

Two years I thought would never happen.

Two years when other things were too much.

Two years when those other things, that were too much, did not lead to an MS attack.

Two years of exploring what is next.

Two years of change.

Two years of being glad I hadn't given up.

Two years with God beside me as I traveled down a different road.



Tuesday, June 5, 2012

The Hunger Games

I just finished reading The Hunger Games. I know there are politics behind it - I almost made it through the book without doing an Internet search to see what others thought. There are some interesting opinions out there and they do make sense. The book is excellent, and I have to wonder if different people find different meanings within it, for themselves.

I've had a bit of writer's block lately - one moment I think I want to write on one aspect of life; another moment something in life changes and I want to write about that. Then later, neither idea makes sense, or perhaps it would tell too much about things, or perhaps it's just a writer's block and I'm stumped.

But getting back to The Hunger Games where there are kids killing kids... I'm not concentrating on that but on another aspect - perhaps it's in the style of writing... Katniss, the main character, has a great ability to be constantly thinking - if she didn't, she'd be killed. And she has to constantly be shifting her thinking as things change.

This reminds me of my life in a strange way, and is probably true for many with disabilities. While I'm not avoiding someone killing me, I'm constantly reasoning through things, and shifting things, to make things "work" for me. Sometimes, I'm trying to avoid falling. Sometimes I'm trying to find the best way. Sometimes I'm experimenting.

So, a few examples...

Every morning I get up and have a routine to get to the shower, out of the shower, etc. But I don't think most people have a big thought process to go with their morning routine. As I sit on my bed, I'm hoping that when I launch myself, my leg muscles engage so they push me up. If they don't, quickly I have to shift to using my arms. And if I am using my arms, I sit back down and try again. Another thought process occurs right after the shower. I make my way across the floor, and I'm being careful. But if there's water on the floor, I have to re-adjust, knowing that if I slip, I won't recover from it like everyone else. So I plan for that slip, knowing there are several routes to get where I need to go. If I do slip, then rather than a big fall, I should be able to let myself down slowly, and not get hurt.

In the summer it gets hot. When I leave work and it's hot, I have a plan. I pretend I have 2 minutes to get out, get my wheelchair or walker in the car, and get in the car. If I stop to talk, in the sun, I'm going to struggle more. If I take my time disassembling my wheelchair, then to get to the front, I'm out of energy. So I'm thinking at each step of disassembling my chair. Sometimes things still don't go as planned, and I wonder how I will make it to my car.

When I go on some of my walks when I am working at walking, I think several things, and I shift depending on what is happening with my walk. If I am dragging my left leg more than I want, then I use visualization... so I have the Bioness getting the right foot to do what it is supposed to do and I think through mimicking that with my left leg. If my right leg is acting a bit "off," I have to shift thinking. Then I'm making sure my heel is hitting the ground first. That activates the Bioness (there's a heel sensor). So I have to think "heel" with each step. When both legs are "behaving," then I'm working on a longer kick. Or the new thing is I crank my neck back and strain it, and so I try to have it look straight ahead. I may be working on speed, so with each step, I am doing a count to have consistency with each step. I may work on standing straihter. And then sometimes, I throw out the thought process and go as fast as I can and time myself - that is fun.

So while reading The Hunger Games, first I was just drawn into the whole plot. Then there are politics behind things. And then there was me, thinking of the thought processes Katniss had, of her ability to adapt to so many situations, and of the many thought processes that are a part of each day for me, especially if I want to walk.

And I do, I want to walk. A neurologist who is well-known meets with various groups and tells them that the people with MS who walk into his office - the most important thing for them is that they want to walk.

And who knows where I go from here... but I have so many thoughts...