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Wednesday, December 24, 2014

Making Progress



"It's not about speed and gold medals, it's about refusing to be stopped."- Amby Burfoot


My latest project has been to learn to ski on my new roller skis.  I picked up a used pair about a month ago.

I've wanted a pair for a long time. Roller skis are used by Nordic skiers to do dry land training.  I would sometimes see them rolling along the lakefront in Milwaukee when I was out for a run or ride.

It looked like fun. Since I have a Nordic track at home and I do a bit of Nordic skiing I thought this would be a good skill to add to my fitness regime.

I never quite got around to getting a pair until this year.  The final incentive came when I signed up for the USAT Winter Triathlon National Championship in Boise in February.

Winter Triathlon is a 4K run, a 12 K bike and a 5K Nordic ski race. I signed up because I am looking to transition into other types of racing. My CMT is progressing. Many mornings I wake up with completely numb hands. My right ankle has an injury on both sides. The left one is starting to hurt as well all the time.

I was leaving for a run a few days ago and my left ankle rolled when I was about 3 steps out the door. My left ankle has never had a problem, another sign of CMT progress. I know my time to able able to run without aid may be limited.

I won't let a little thing like the progress of my CMT, keep me from competing.  When my CMT makes it too hard to run, I'll be ready to race by bike or cross country skis.  My first Nordic race will be a 5K event on January 17th.. Just a bit of prep for Nationals in February.

But I needed to train, We had no snow in Milwaukee. The roads have been full of salt and it has been too cold to use my roller skis. So I brought them to Dallas with me for the holidays.

I've been able to get out every other day. They are a little tricky to use and take a bit of balance, something that is a bit of a challenge with CMT.  I've learned a few tricks of using them like holding onto the mail box when I am putting them on so I don't fall.

They attract attention every time I go out, especially from runners. They all tell me they look fun.   I had a little fall the first day onto the tree lawn and a pick up stopped and asked if I was OK and if I could get up.

I'm getting pretty good at it. I've been doing classic style and my goal is to skate with them so I can skate in a race. I do a bit of that every workout.  So I'm making progress toward my goal of being ready to race.

I heard about some more progress last week. The HNF and Pharmax announced the successful trial of a treatment for CMT Type 1A.  They used a mix of existing drugs. I hope that means it will be on the market soon. It can't come too soon for those of us with CMT, even with a mild case like mine.

Now that is progress worth celebrating.

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

Chris Wodke at 2012 Boston Marathon

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.  In 2012 she finished 2nd at Boston in the Mobility Impaired Division. She was on the course in 2013 when the bombs exploded.

She has appeared three times at the Paratriathlon National Triathlon Sprint Championship. She was the 2012 and 2014 National Champion Paratriathlon Open Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She has qualified to represent Team USA at the Aquathon ITU World Championship in Chicago in 2015.  

 In 2014 she represented  the U.S. as a paratriathlete at the Pan-American Triathlon Championship in DallasTexas.

She travels around the country raising awareness of CMT.

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 159 members in 30 states. We also have members in AustraliaScotlandCanadaVietnamTurkeyFinland 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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