Mobility

FSH Factoid: The rapidity and extent of muscle loss differ considerably among FSHD patients — even among members of the same family. Some report few difficulties throughout life, while others need a wheelchair as walking becomes too difficult or impossible (FSH Society, 2010).

An excellent blog entry about using a wheelchair can be found here. 

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Did I Mention I Love to Read?

I'm currently reading a fantastic book series. The series is "The Game" by Terry Schott. The premise is bizarre and really alters your way of thinking about life.  In short, Earth is a planet where avatars from another planet live several lives as a replacement for traditional schooling- youth gain much more knowledge by living and learning from real life experiences. 

What I really enjoy about the books is the emphasis on: 1.Life is just a game, and you receive more points for doing meaningful things, so don't "waste a play"; and 2. Anything is possible on earth- people just don't realize they can do anything.  In the book, very skilled individuals can even learn to fly. 

As one who suffers from a chronic, progressive muscle disorder, I am often perturbed by people who say "you can do anything you put your mind to."  Because sometimes, you physically cannot.  No matter how hard you try.  Recently however, even I have noticed small changes in my body's abilities.

I started practicing yoga last August... only 8 months ago.  And from time to time I will try something in class that I wasn't able to do when I first started.  I am getting better.  My body is getting stronger.  Maybe it's only a small change, and maybe it's not enough to affect the challenges of daily living, but how remarkable it is to notice those small progressions.

I've always thought that muscle strengthening, for me, was a lost cause.  You're constantly taking one step forward for every two steps back.  But my physical therapist will even say things like "I don't think you were able to do that 3 months ago..."  Our bodies are amazing machines, and we need to continually perform maintenance (healthy eating and regular exercise) in order to have the strongest machine possible.

Perhaps with a little extra effort we are able to achieve anything...

Book Review

"Great Read!

As a person who also suffers from FSHD, I greatly appreciate Ms. White's experiences with this disease. I believe that her book helps those dealing with this unfortunate affliction understand that they are not alone... It has always been very hard for me to ask for help, but I have realized that sometimes you have to swallow your pride and ask for help. I believe that when people understand the why's they are more compassionate. People in general just need to be given the chance to understand. This was a great read and I have passed it along to some friends in the hopes that they can understand this disease a little better."

~ A review on Amazon about The Graceful Art of Falling