Bumpy Roads

 

                      "Often bumpy roads lead to beautiful places."- David Martinez, Baseball Manager

Today country Western singer Alan Jackson disclosed in an interview on the Today show that he was diagnosed with CMT 10 years ago. He said he had been reluctant to discuss it which is common in the CMT community. He decided to disclose his CMT now because he is at the point where it is becoming obvious when he performs. He has started to have issues with balance when walking and even while standing.

CMT is a disease that progresses slowly. He acknowledged the CMT may eventually disable him. That is a future most of us with CMT face.

He talked about several challenges he has faced from his wife's cancer to his son in law dying recently in an accident.  He has turned these challenges and others he has faced his life into beautiful music.  Perhaps we will hear a CMT based song from him someday.

Those of us in the CMT community are glad to have Alan join the fight. It is so important to raise awareness. It is so helpful to know put a name to symptoms.  Knowing you have CMT is important to avoid drugs that could accelerate CMT.  Finally it is important so that we have others to join us in this fight. It is very difficult to raise funds for research for a disease no one has ever heard of.  Alan helps put a face and name to CMT. This kind of awareness he brings cannot be purchased.  

The work of Team CMT has had the same mission. We wear our shirts and singlets to bring awareness. We participate in events to put a face and a name to CMT. We run, swim, bike and do other fitness activities for those who cannot and to keep ourselves strong.

I remember talking to one of our members one night over dinner before a race in Arizona. He told me we are the lucky ones. He meant that having CMT has taken us places and has helped us to meet people we would not have met. I could not agree more. I would not wish CMT on anyone, but it makes all of use the people we are. The bumpy road of CMT can indeed take us to beautiful places.

I welcome Alan Jackson as he shares in our journey.

Here is the link for the interview
https://www.today.com/health/country-star-alan-jackson-announces-cmt-diagnosis-today-t232178

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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 and at the Aqua bike National Championship in 2016. She represented Team USA at the Aquathon ITU World Championship in Chicago in 2015i, Cozumel in 2016 and Denmark in 2018. In 2018 finishing 5^th in the 60 to 64 age group.

 

 In 2014 she represented the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.  She has won state championships in cycling and triathlon as a senior Olympian. In 2017 she placed 2^nd in her age group at the Winter Triathlon National Championship, earning a spot on Team USA for the World Championship.

 

In 2020 she was named a National Ski Patrol Subaru Ambassador and a USA Triathlon Foundation Ambassador.

 

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 and the book “Soup Sundays, A Journey Toward Healthy Eating”.

http://www.henschelhausbooks.com/catalog/memoir-biography/215-running-for-my-life-winning-for-cmt-9781595982827.html

 

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 CMTWe currently have 233 athletes in 41 states. We also have members in Australia, Canada, England, Finland, Vietnam, Iran, Scotland, France, Turkey, Poland, Norway, Mexico, Wales, Ireland and Sweden!. 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.

 

 

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