Monday, September 8, 2014

Day 8 - Dystonia and Walking on Different Surfaces

If you are friends with me on Facebook, you might have seen a video I posted back at the beginning of the summer. It was me walking on the beach with NO ASSISTANCE!! It was freedom. It was awesome. I kind of had an inkling that I might be able to do it, but I wasn't positive until I tried it. This dystonia is weird for me. There are certain surfaces I can walk on and certain ones I can't. I have the hardest time on concrete, tile and hardwood. By far the easiest is sand. :) I can also walk in grass pretty well and my parent's carpet at their house. I mention the carpet because they got new carpet, but got a really thick padding. I never knew what padding in carpet does, but now I do: it lets me walk, cane and walker free!! It's the closest thing to sand that I've walked on. It's amazing.

While some may think that it's all in my head - meaning I can only walk well on sand and carpet because in my head I know if I fall, I won't hurt myself - I know for a fact that it isn't just all in my head :) I still have problems walking even on sand and carpet. That same vacation, where I walked without a cane or walker on the sand - yeah, I fell flat on my face in front of the cutest life guard! It was highly embarrassing. And instead of milking it for all it was worth, I quickly got up and tried not to look him in the eyes when he asked if I was alright ;) Embarrassing!! So....even on my "perfect" surfaces, I have problems - just not as many!

When I started physical therapy, my physical therapist talked to me about proprioception: having an awareness of the position of one's body. It's knowing where your arms and legs are in regard to your own being and to space. My proprioception is off (really! I know you find that hard to believe - ha!). I can't sense where my foot is in relationship to the floor. That's why I'm looking down most of the time when walking. I have to see the floor in order for my foot to touch the floor normally. If not, that's when a spasm takes place and I lose balance. Tile, hardwood and concrete are all smooth surfaces. I don't sense them under my feet as well as I do grass, carpet and sand. I don't really know how I lost my proprioception, but somewhere along the way, I did. If you find it, please return it to me - it's greatly missed!

It amazes me how my body knows what to do. When I first started having symptoms, I instinctively started to walk in the grass instead of on sidewalks. I have no idea why I did this, other than the fact that I knew for some reason it was easier that way and I would prevent myself from getting hurt. I am pretty sure that sand and carpet are my favorite surfaces to walk on because they mold to my feet. They give with my feet (meaning that whatever way my foot lands, they compensate for it and support it). Yes, carpet and sand are definitely my favorite surfaces for walking!

Friends suggested that I either move to the beach or fill my house with sand. While I love walking on the sand, having sand everywhere else is not quite ideal :)

I would like to invent a shoe that gives the sensation of walking on sand. I think that would be totally awesome! Maybe one day you'll see Shoes by Stephanie or something like that and see my one-of-a-kind sand shoe. It'll be all the rage, I guarantee it :)

All in all, I really have no answers as to why I can walk on some surfaces and not others. Sometimes it frustrates me, but most of the time, I know now which surfaces I'm good on and which I am not, so I deal with them as they come up.

1 comment:

  1. Hi Stephanie,
    I have exactly the same thing. I walk normal on sand, grass and snow but my dystonia starts when I walk on concrete/tile/hard surfaces. I think walking on sand and soft surfaces relax your mind and muscles. Good luck. Izzy

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