Thursday, October 7, 2010

So What Now?

So before I talk about all the other silly, crazy and often funny things I deal with in my life (and not all of them involve having a disability,) I figured I should give you even more background on CMT. It is after all a big part of my life, and likes to rear it's ugly head at the most inopportune moments, so I need to give credit where credit is due! I mentioned in my last posting that CMT often goes undiagnosed, which can be very frustrating. When you are experiencing multiple physical symptoms such as trouble walking, tripping and falling down--not to mention difficulty with the function of your hands, it can be disheartening to see doctors and neurologists and suffer through test after test, yet never get a name for your problems. And it happens quite often to people with CMT. I didn't know for many years what was actually wrong with me, only that something WAS wrong. Once it was discovered that I had CMT it was like a weight had been lifted! I have to admit, there was about 30 seconds of shock when I first heard the name (Charcot-Marie-Tooth syndrome?? What the heck is THAT???) followed by a sense of...well, peace. That probably sounds silly...Peace? Really?? But I swear to you, that's how it felt. It isn't that I found out I had this thingy with the weird name, and low and behold there's a of right now, there is no cure. It was just finally knowing what it was and having a name I could reference when I needed it, that felt so peaceful.

Though there are other frustrations. Okay...I have CMT. So, what now? Where are all the other people with this thing? I guess part of me expected that now it would all change...that I would walk into a room, and suddenly there would be all these people there who also had CMT and dealt with the same daily struggles I dealt with, and we could become a group. And I wouldn't be alone. But it didn't happen like that...mainly what happened is I kept living life as I had before; adjusting how I did things to improve how I functioned and dealing with things as they came. I had some changes, such as getting leg braces so there was no more tripping and falling. That was certainly an improvement! I continued to learn how to do things differently with my hands so that I would be more functional, and I found a great hand therapist who helped me to succeed. But part of me would keep looking around the next corner...where IS EVERYBODY??? I can't possibly be the only one who has this! I was finally diagnosed in 1997, though I didn't actually meet anyone else who had been diagnosed with CMT until June, 2010. So you can imagine how many years I have been feeling like I was a stranded alien who had been dumped on this planet.

I was very fortunate that a local CMT support group began in April of this year...finally I would meet someone else with the same issues! And it's been a wonderful thing--I've met so many new people that know what I've experienced, and when I say 'CMT' I don't have confused faces staring back at me...(CMT? What the heck is she TALKING about???) I highly recommend finding a support group to anyone who feels lost with a situation...whether you are living with a disability or some other form of stress. And if you cannot find one, consider starting one...and don't give up. I promise you...there is other life on this barren planet you've been living on, and they do speak your language!

So what happens next? Well, I am helping to raise awareness about CMT not only by starting this blog, but by going to meetings and sharing my experiences. September 19th--26th was recently designated as CMT awareness week across the country, and many things have been happening to raise money for research toward finding a cure. The wonderful woman who started our support group was able to get a local restaurant (TGIFriday's) to agree to host a fundraiser and donate money toward this research during awareness week, and we raised $885! The CMT association started the STAR program which is in charge of conducting this research, and the outlook is very good...we are getting closer and closer to finding that cure! If you would like to read more information on the CMTA website, log onto As for me? I'm still the same person I always was, though I have finally found my group...and life has gotten a little bit easier!

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