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Thursday, October 2, 2014

The Lucky One's


Team CMT members in Arizona for Para-triathlon National Championship


Everyone has a story, it’s what you make out of it. You can feel sorry for yourself or you can pick-up and use it as motivation.” – Esubalow Truneh


Whenever I travel I try to meet with those affected with CMT I've met through facebook or with Team CMT members.

When I was in Arizona a few weeks ago I got to meet and have dinner with several members of our team.  On the left in the photo is Dick Rogers, dad to Alyson O Connor, her husband Jim is next to Dick  and kids Brooke and Jake round out the picture.

Many people with CMT have never met anyone outside of their own family with CMT. So it's always great to meet someone else with the same condition.  Often we tell our story of living with CMT and how long we've know about our CMT. Many of us were not diagnosed until we were adults.

As I was talking with Dick he told me he felt he was "One of the lucky ones."  He said he felt so blessed to have met so many great people with CMT since he was diagnosed.  He was in his thirties when he was diagnosed.

I could not agree more. I've met so many tremendous people during my journey with CMT including the O Connor family. Alyson and I have talked back and forth about triathlon training and getting ready for this race in Tempe.  Alyson is a talented athlete and I expect to see great things from her in the future.  It is so nice to talk to an athlete like Alyson that understands the challenges CMT presents for us doing competitions.

Alyson and Jim seem to do an event almost every week wearing their Team CMT kit. They are great ambassadors for our cause.  They are great role models for their kids for being active. Jake and Brooke have both done kids triathlons and about about to do a bridge to bridge run in Oregon.

Both the kids proudly told me they had recently run 5 miles to get ready for the race.  Alyson and Jim often post pictures on Facebook of all their outdoor family adventures, hiking and camping.

Jake and Brooke were so friendly and engaging.   Brooke is already a media star. She did a TV interview from the race venue.  Great kids.

Dick also told me he wants to train to run a 5 K soon.    The whole family is just an inspiration.

It was great meeting all of them and hope I see them all again next year at para-triathlon Nationals.

I feel lucky not just to get to meet great people all over the country, but to be competing at races all over the country.

When I was diagnosed I knew I was lucky to be so active. That is not the case for many with CMT.
I want to swim, bike and run for those that can't. I am going to do what I can to raise awareness and funds for CMT research.

This Sunday  I will line up for my last triathlon related event of the season, a aquathon in Oklahoma.
I am not sure how long I will be able to complete, but as long as I am, I am going keep doing the work started with Team CMT and meeting other great folks around the country.
I really am one of the lucky ones!

*****************


Chris Wodke
Founder & Manager Team CMT
www.run4cmt.com

Chris is a triathlete and long distance runner. She is a three time participant of the Boston Marathon.  She was the 2012 National Champion Paratriathlon Open Division. In 2013 she qualified as a member of the Team USA Duathlon Team and was eligible to compete in 2014 at the Age Group World Duathlon Sprint Championship in Pontevedre Spain.  She chose instead to represent the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

You may visit her author page at:
http://www.amazon.com/Christine-Wodke/e/B00IJ02HX6


Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have 154 members in 30 states. We also have members in Australia, Scotland, Canada, Vietnam, Turkey, Finland and Iran. If you wish to join us visit our web site; www.run4cmt.com or www.hnf-cure.org


CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS).  It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.

Structural foot deformities such as high arches and hammer toes are common.

Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.

Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.

Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/

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