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Tuesday, June 7, 2011

Welcome Joyce Kelly to Team CMT

Joyce Kelly of Dallas is one of the newest members of Team CMT. She recently completed in the Capitol Triathlon in Austin and is shown here with her husband Mike.  The event featured a 750 meter swim, 12 mile bike and 5 K run.

Joyce is one of 4 athletes on Team CMT with CMT. The day before the big event she twisted her ankle. That's a normal part of life for anyone with this condition.  Still she was able to compete, showing determination is also part of CMT. Joyce said the event was totally awesome and she felt good the whole way. 

Joyce found out several years ago she has CMT when she sprained her ankle and it stayed swollen for months. Her dad and grandmother had the disease and she had all the classic signs; high arched, hammer toes and difficulty doing athletic things.  Like most of us with CMT she was always “clumsy”.  She always wanted to be an athlete so she took up running in college.  She added biking when she met her husband Mike and swimming when she started doing triathlons last year.

Her story is the same for many of us with CMT. She used to run a 10:00 minute mile, but the CMT has slowed that to 12:00, sometimes 13 or 14 minutes for a long run.  Some days she feels fine, other days so tired it is tough to get out of bed.   Sometimes her nerves feel like she has just touched an electric fence.  The top of her feet burn all the time.  Still she feels lucky because she has a mild case. Her doctor told her recently her high level of activity has kept her out of leg braces. Other doctors have told her she is speeding the progress of her disease, so this was welcome news.

Her determination has paid off; she recently came in 3rd place in her age group for the King Tut Tri in McKinney Texas. Her favorite race is the Capitol 10 K in Austin. She runs with a social group every Wednesday night. She is also an avid biker doing the Hotter than Hell 100 in Wichita Falls, Texas in August. Anyone who has ever been to Texas in the summer knows the temperatures are normally in the high 90’s to over 100F.

Joyce is easily my most enthusiastic Team CMT member. She was so excited to hear about the team and join us.  Just finding someone else with CMT is a big event since most of us with this disease have never met anyone with CMT outside our own family.  One of the great things about starting Team CMT is connecting with other athletes like Joyce battling this disease.  Joyce told me she is never going to win a race, but she runs, bikes and swims because she can. She wants to raise awareness and money for CMT. She has raised money for years for charity and wondered why there was no team for CMT. A few years ago she asked the national CMTA about organizing a team and was told there were no athletes with CMT.  Well we have four athletes with CMT on the team. We now have 18 members in 7 states.  I have also been told people with CMT “can’t run”. Team CMT is here to prove them wrong. We don't just run to raise awareness, we run to challenge ourselves and inspire othes. We are athletes because despite the challeges it brings great joy and make us feel alive.

Joyce is married to Mike, a natural athlete and endurance runner.  Mike and his brothers own Cobblestone Quality Shoe Repair in Houston, Dallas and Austin.  Between them they have four kids’ Susan 27 headed to medical school this fall, William 23 an engineer, Derek 23 a golf pro and Natalie 17 headed to Louisiana Tech this fall.

Besides being an athlete, Joyce is a writer. She is currently working on a historical novel. She ran her own business Renaissance Designs for 14 years. I am hoping she now has lots of time to help Team CMT in our work.

Joyce has a new coach and will be competing in events throughout the summer. Her biggest event this season will be the White Rock Marathon in December in Dallas.  Joyce will be attempting to qualify for the mobility impaired division of the Boston Marathon. Good luck to Joyce. All of us on Team CMT are so proud to have you with us. We all admire your strength, determination and grace in the face of adversity. We are looking forward to great things from you! You make me proud to have you be a part of Team CMT.

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 100 members in 17 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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