Thursday, March 15, 2012

Feeling it

I've been going to physical therapy (PT) for way over a year. It's a weekly ritual where I started using a gait-assisted treadmill shortly after starting Ampyra. The treadmill holds my upper body in a harness and I walk. I started at .2 mph with a bunch of big therapy (ie fat rubber) bands attached to my feet to help me kick, and my therapist stood behind me doing a lot of work guiding my legs so they went straight and landed on the treadmill, without crossing over each other.

Now the therapy bands are gone and I'm kicking on my own and up to 1.2 miles per hour. My therapist is still behind me, but not doing much at all (she says) and I can walk about 30 seconds on my own.

Today was different. In this weekly walking ritual, I have to think to kick each leg forward with almost every step, in order to keep a rhythm and speed. Today I was thinking of that as well, each leg. But something happened. Even while I was thinking, I had a sensation, and how to explain this is difficult. I had the sensation that I really was walking, that the motion of my foot, pressing from heel to toe, across the ground, was natural - the motions felt natural and not awkward, hesitating, or like I was swaying from side to side in order to walk. In a sense, it felt calm.

That sensation - I don't recall the last time I had it. And with it came this old "runner's high" feeling - that's the feeling that I could keep going forever, that this was easier. And so I kept going for 20 minutes. before we had to stop (muscle recovery thing). We I started again, the feeling didn't come back in quite the same way, but I walked 10 more minutes and then we simply had no more time.

So today I'll celebrate the "runner's high" in my walking, where walking felt natural and that was emotional - it's another one of those things I hadn't realized I had lost - the feeling of walking naturally.

2 times in my life I have heard someone in a presentation say "What's the one thing you want in life?" I won't write it here, but many can guess what it is. The first time I heard it I went home and called my mom in despair. This week someone asked that again. I didn't feel that despair, and today I felt...

Never say never.

You really never know what's going to happen in this mysterious thing called life.


Saturday, March 10, 2012

19, 20, 21, 22... and back again

I was diagnosed with MS a little over 19 years ago. At the time, I was 20 years old. I used to have MS attacks (symptoms flare out of control) frequently - every 5 or 6 months - but today it's been 21 months since I've had an attack. And over 22 years ago, I woke up with tingly legs and MS began. 19, 20, 21, 22, ... I'm a numbers geek.

A year after I was diagnosed with MS, I was one of the first to go on a drug called Betaseron. It's in a class of drugs meant to slow the progression of MS by about a third. I don't think it worked for me. There could be multiple reasons - one is I developed an immunity to it and the other is that my MS is weird. After Betaseron I tried the next newest drug, called Copaxone. It worked somewhat for about 5 years. Then I had a reaction to it which is considered "normal" - chest tightened, hard to breathe, hit all of a sudden - it definitely didn't feel "normal." It felt like, well, I couldn't breathe - I suppose it felt like I was going to die. A week later the same thing happened but my entire body shook for an hour afterward. And a week after that, the same thing happened again, but I shook for over 2 hours. I stopped Copaxone - I would have wound up in the emergency room at the least. Then I tried a couple other drugs which didn't work. Then I had our daughter, Lori - a pricelesss gift.

Right before I found out I was pregnant with Lori, I was investigating having an experimental stem cell transplant at the University of Chicago. Thank goodness for Lori. Right when I was about to make the decision to do something very risky, it seemed something was saying no - there are other plans.

I considered 1 more drug after Lori was born - it's called Tysabri. At first Tysabri seemed like it would be great, but over time, something didn't feel right about Tysabri, so I decided to wait. I recall our pastor saying, "you know I'm not going to make this decision for you, right?" Darn! After my decision he asked what I was going to do instead. I told him I would wait and hope for the best. I suppose waiting with MS can be a common thing to do.

After shoulder surgery, a friend asked me about Ampyra. Ampyra is not meant to slow the course of MS - it's meant to help with walking. But it has done so much more for me. I didn't realize what I couldn't do, but life has changed and now I can do these things:
- lift both feet with my heels on the ground
- do 100 squats, almost every night
- walk around the track without stopping
- write with a pencil
- walk further, and further, and further
- sit up straight
- while sitting, play catch or frisbee with my family
- other things - life is just sharper

So 21 months in with Ampyra. I haven't been really sick either. I think when I'm about to get sick I get very tired and go to bed - that solves things. My daughter has had 2 nasty colds and I've had a scratchy throat.

All this has been going on and is really exciting. And while a happy post with no obstacles might be nice for some people, there is still reality. I walk much more and get asked "wouldn't a wheelchair be easier?" I guess I'm not in this life for easier. The obstacles with a walker are annoying - getting a door to open is hard. People who don't know me think I'm struggling when I'm doing much better.

And while I get better, perceptions in society persist. When a person with MS discloses they have MS, things change - perceptions change. They don't change with everyone, but they do change with some - I think there's a group of people who go look MS up and find everything that could go wrong and assume, because I can't walk well, that I must have other things. I was actually told, after I left a job, that when I was interviewed someone asked if they could question my mental ability to do the job since I have MS. In the list of MS symptoms is short-term memory loss. I don't have it any more than any other mom, but some people look for that. If I forget something, a few people wonder if it could be MS, even if it's losing my keys - which I think I inherited from my mom - definitely not MS! I suppose that part of getting my Masters was proving, to myself and others, that mentally I am fine. And yet, I have this feeling (and these feelings are usually right for me), that some people want to use the listing of short-term memory loss on me. When they try it - it's been tried - it fails. And this kind of thing - making things up about disability without knowing the person behind the disability - are what cause many problems that people with disabilities experience every day.

And although the previous paragraph may seem out of place here, the fact is that as I improve on Ampyra, it doesn't mean there aren't still obstacles thrown in my face, or attempted under the radar. It's a mixed bag - one moment I'm walking and walking and walking, and the next moment something strange happens that is beyond my control.

But the good news is that I continue to get better, little by little, and refuse to accept that any given thing may not get better. One just never knows.

22 months ago I unknowingly entered into the world of disability. For 21 months, I have experienced life changes in an exciting way I never expected. I was 20 years old when I was diagnosed with MS. That was 19 years ago (yes, I'm 39). Those are the facts.

So I try to throw the bad stuff over to God, and I celebrate the facts that Ampyra has changed my life and I continue to improve.


Thursday, March 1, 2012

10 Toes

10 toes. For most of us, all of the toes work - our brain tells them to wiggle, and automatically they wiggle. For some people, the signals get all messed up and toes don't wiggle. Then there are a few people like me. It's another Ampyra story, so if tired of them, skip this post.

When I first started Ampyra, I was in my car one day and to avoid leg cramps, tried to lift my left toes with my heel on the ground. It didn't feel like it was working until I heard "thump, thump, thump." I looked and indeed it was my left foot making that noise. All of a sudden, I could lift my foot, even though I couldn't feel it. "Tap, tap, tap."

Every morning since then, I have a process where I wake up and go sit on a white chair in our bedroom. On that chair, I lift my left foot 5 times in a row, pretend to lift my right foot 5 times, and repeat it. The right foot just stays on the ground while I pretend. Then I lift both feet (pretending with the right foot) up and hold them up for 10 seconds. I repeat that 2 more times. Sounds so simple. And sometimes it's become automatic, but some mornings I have to really concentrate on the muscles that tapping my foot possible.

This winter, waking up was in the dark. I can now feel the sensation of my left foot lifting. And I have continued to pretend my right foot is doing the same thing. But over the months, it has seemed that when I lift both feet to hold them, my right foot has been going up, too - it has seemed like pretend has changed, little by little. I have only sensed this because when putting my feet down, I feel my right foot hitting the carpet... which means it wasn't on the carpet.

Sometimes now it's light when I do these exercises - spring is coming. Now I can see what my feet are doing. The right foot, over time, has transitioned from the pretend land of lifting, to actually lifting. It's strange to sit there and watch this. But my right foot was only doing this when both feet were lifting at once. I contemplated, what if I really concentrated on those toes on my right foot and told them to move - could the right foot lift by itself?

It can! I have to really think about sending a message to my toes. It takes concentration on all toes for it to happen. And there are 2 stubborn toes that take my glares at them.

Who knew so much was involved in lifting toes? Now I think I know.