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Friday, December 27, 2013

One Last Gift

"Because of the gifts and opportunities I've been given, my running has a platform, a spotlight, a chance to affect other people. What it means to them, what they take from it I cannot control. But what I can do is strive to reach my full potential, giving my best effort each and every run."- Mike Cassidy American Elite Long Distance Runner

It was a really nice Christmas holiday with my family in Dallas.  It has been a good monthly actually. I have been on vacation most of the month. That gave me lots of time to workout and recover. I had lots of time to get ready for Christmas.

In addition to the fun of spending time with my brother sister in law and two nephews, the weather has been great for getting outside and working out. While the weather has been cold and snowy in Milwaukee, it has been sunny and in the 50's here in Dallas. Perfect outdoor running weather. I've started doing long runs to train for Boston. A 2 hour run outside is way better than a 2 hour run on a treadmill.

Still there is something missing.  I got some nice gifts for Christmas and the things I wanted still on my Amazon wish list I ordered right after Christmas. Lots of tri gear on it's way to the Milwaukee address.

There is one gift I couldn't buy, put on my Amazon wish list or be given by my family. I knew it would not be here in time for Christmas. The gift I am waiting for is due any time from the International Triathlon Union (ITU). The ITU has promised the new classification standards for para triathlon.  The new standards must be done because para triathlon will be a paralympic sport for the first time in Rio in 2016.

The current standards have 7 categories including one for neuromuscular conditions like CMT, MS and Cerebral Palsy.  Unfortunately assessors here in the U.S. have not really understood how to assess for CMT. The current standards really are tests for MS.  Most athletes with CMT continue to be screened out. Only those with very severe impairments have been allowed into competition and then can't complete with those with less severe impairment. So the system has been unfair in many ways.

Some athletes with CMT have chosen  not  to go to competition and fail the assessment process.

I hope the new standards include those of us with CMT. It is easier to assess CMT than some other neruomuscular conditions. Most types of CMT can be determined with genetic testing and impairment with EMG and nerve conduction tests.

Even though my CMT is mild, it does affect my athletic performance. I cannot be competitive with other athletes. Being classified would be great for me personally since I would be able to compete at the national and international level.

A classification system that accepts those affected by CMT benefits the wider community.  I 've seen the conversations change in facebook groups. Doctors used to warn against exercise. Members of the community used to warn against exercise. I think the success of CMT affected athletes from Team CMT has helped to change the attitudes about exercise. Now I see conversations about what type of exercise would be the right one. We fund the work of Dr. Robert Chetlin on the effects of exercise on CMT. His research has shown those with CMT can gain strength through exercise. Plus exercise has many positive benefits for overall health and pain control.

Some organizations like the Challenged Athletes Foundation (CAF) do not fully serve those with neuromuscular conditions.  Our conditions are not as visible as those with amputations or in wheelchairs. I am hoping from greater visibility groups like the CAF will help with developing more programs and adaptive equipment for those affected by conditions like MS, CMT and CP.

Athletes like myself competing at the highest levels, inspire the CMT community.  We all have challenges from CMT. Sometimes it is too easy to give into those challenges.  We can provide inspiration to the entire community and show that you can live a full and active life with CMT.

There is benefit also to making invisible conditions like CMT visible.  In my own family I have members that keep CMT a secret. We will never find a cure or treatments until this condition becomes more well known. We need strong and positive role models to lead the way.  Competing in high level events and getting media attention is huge step in raising awareness and making or invisible condition visible.

So I patiently wait for word from the ITU. Will they recognize those of us with CMT as para triathlete? Will they only make room for those with MS? Will they only allow the most severely impaired with CMT to compete? Will they make room in competition for all of us with CMT?

I hope when the new qualification standards are announced that those of us with CMT will find a place in competition.  We have over two dozen athletes on the team affected by CMT. I hope they have something to be excited about as well in mid January when the new standards are announced.

Chris Wodke
Founder & Manager Team CMT

Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 140 members in 27 states. If you wish to join us visit our web site.

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.

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