|Team CMT members Alyson and Brooke Oconner|
" A hero is someone who has given his or her life to something bigger than one's self."- Joesph Campbell
Week 4 Boston Training
At the end of this week I'll have completed an entire month of Boston training. I can't believe I am actually running after being sidelined for 2 1/2 months with ankle injuries. I'll do 13 miles tomorrow and my coach says she can't believe I can run 13 miles. I realize how blessed I am to be running at all. What keeps me going is our cause to raise awareness and funds for research. I am inspired by what I call our unlikely hero's.
When I started this team I was told by a national CMT organization they did not know of any CMT affected athletes except for me and a triathlete in England. We now have 24 CMT affected athletes on Team CMT. I call them our 24 miracles. Medical professionals have told me people with CMT can't run. Well some of us do. We run, walk, bike and particpate in triathlons. We are changing the face of CMT. You all inspire me. I am so humbled to be a part of our effort. I am so in awe of family and friends that support us and participate with us. Words are not adequate to express how grateful I am for our mission and those who are with us in this fight. We are making a difference!
This week I had my annual check up with my neurologist. She knows I run marathons and do triathlons. Not only does she encourage me, she now tells all of her CMT affected patients to exercise. I am still strong, because I have been active my entire life. I am thrilled we are inspiring others to be active. Think about what a difference that is making in the lives of those affected by CMT. Think just by the fact we are exercising a doctor is going to tell another CMT patient to stay active. Staying active will help slow their progression. We make a difference in the life of every CMT patient taking the advise to stay active.
I belong to several Facebook CMT related groups. I have seen a real change in the conversation in the last two years. Members are talking about the things they do to stay active and enjoy life. We have come so far from the days when doctors told CMT patients to go home and rest.
The other change I see is those affected by CMT are wearing their braces uncovered. Some have talked about how they carry brochures to share when asked about their braces. Maybe they aren't athletes, but they are hero's to me. It takes so much courage to take the risk to be open about our condition. It is so important to get this condition out of the shadows. We have nothing to be ashamed of and nothing to hide. When they choose to be open about their condition they are hero's. I think the visibility of Team CMT has given them the courage to be open about their condition.
Our other hero's are the family who support us, like 7 year old Brook O'Connor who runs for her mom or Lincoln Stultz running for his sister Regan, Megan Seebeck running for his dad, Darell Wright running for his wife and other family members, Kim and Courtney who run for their sister Allison and countless others. Your support is so important to us. It is so wonderful to see the love you have for your CMT affected family members.
Then there are the friends on the team just because we asked. I think about my friends Ruth, Glyndis, Kevin, Robert, Kim, Cheryl, Tony, William and countless others asked to join by team members. Your willingness to give yourself to our cause is humbling. Thank you for caring about us. Your efforts to raise awareness are making a difference. Our efforts are beginning to attract the notice of sponsors. We hope to have some announcements soon.
My Computrainer class instructor shared with me she saw our Team CMT members at the RACC Race into the New Years run at State Fair park. So don't ever think your efforts go unnoticed. I had shared with her about my CMT because I was struggling to keep up with all the normal athletes in the class. Members have joined because they saw our athletes at an event or found us in a web search.
So to Team CMT members, you may think you are just running or biking, but you are all hero's to me. It has nothing to do with where your finish or how fast you run. If you have CMT it is a miracle you are an athlete. If you are a member of our team you are dedicating yourself to a cause bigger than yourself and that makes you a hero to me.
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.