Charcot-Marie-Tooth

I started this post way back in March 2013 but didn't know what to write.  I was inspired by a documentary we watched this week to go ahead and finish it.

Until I met K, the abbreviation "CMT" only meant 'country music television' to me.   It has another, much more important, meaning: Charcot-Marie-Tooth syndrome.   Its a terrible to remember name for a disease that is much more common than either of us realized.

Kevin has it and others on his side of our family also have it.   His is less advanced so you may not notice it about him, but it affects his everyday life.   After being together for almost a decade, I'm still learning what all it affects in his life - from difficulties buttoning items (I've learned not to buy things with buttons for him whenever avoidable), holding onto things and operating his ipod, to poor balance and the knowledge he'll likely need assistance walking one day.

 There are so many things it affects for him, and as I said his is less severe.  Some of the adjustments he's done for so long he couldn't even tell you it was an adjustment.   His aunt found some attachments to put on lamp knobs that changed his day!  They've also found magnetic connectors for necklaces (less used by him, but used by the women in the family with it).  I know that the things I'm mentioning sound trivial, and in many ways they are but they can be an everyday battle.   I'll do something with my fingers and he'll look at me astounded asking how I can do it, and I just can with no thought to it...things I find easy are out of reach for him.

I want to help raise awareness about this syndrome, as common as it seems to be we probably know others with it and don't realize it.  I was inspired by the documentary we watched this week, about a young woman who has a much more severe case and has become the face of CMT.    It is worth a watch ($4 on amazon prime, also available on hulu).   More info here: http://www.bernadettecmtmovie.com/   As they say its the most common disease you've never heard of.  

A while back, Kevin's aunt (who also has it) was featured in a magazine about her life with CMT and how she finally met a pen pal she me through that same magazine.

I hope you learned a little bit about it, I know that I still have a lot to learn about it!!