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| Powerman Duathlon Frankenmuth May 2019 |
"Disability does not mean inability , it means ingenuity." " Just because you have a disability doesn't mean you can't do something, but it means you have to be a bit cleaver with how."- Joshua James, athlete with CP
Sometimes the most simple decision can change the course of your life. It happened to me on Father's day in 2000. It was a beautify and sunny Sunday, a perfect day for a bike ride. Little did I know the events of that day would change the course of my life and provide a mission I am still living.
I wasn't a triathlete yet, I was a long distance runner training for my 5th marathon. I swam and biked because my body could not take the pounding of running every day. I'd gotten a stress fracture training for my first triathlon. I'd gotten numerous running injuries over my years as a runner.
Every doctor and physical therapist that examined me told me that I did not have enough flexibility to walk decently much less run. The average person can bend their foot at the ankle about 6 degrees. My flexibility was -6 degrees. I also had curled toes and high arches. I thought this was normal since all five of my brothers and my sister are the same. I was the only athlete in the bunch.
I leaned that by running only three days a week and by cross training with swimming and biking that I could stay healthy and active. When training for a marathon, I would run in the pool to get in extra running time. I leaned to be cleaver to get it done. I ran my first marathon in 4 hours.
So that Father's day in June I was out of bed for a quick bike ride before I met my family for brunch.
I don't remember anything about the bike ride or anything else from my morning. The first memory I have after waking up was coming out of a CAT scanner at the local emergency room at 2 O'clock in the afternoon. The ER doc asked if I remembered him since I had talked to him when they brought me in. I told him I'd never seen him before.
On my bike ride someone had opened a car door into my path. I think I went over the handle bars because my bike helmet vents left an imprint on my head. In addition to a head injury I had a fractured collar bone. I spent three days in the hospital.
Because of the head injury I was assigned a neurologist for follow-up. He was puzzled not only by my amnesia, but by my lack of reflexes. I'd known about this my whole life. The doctors could never get them.
So he started testing me for all kinds of hideous neurological conditions like CP and ALS. I drew the line at the spinal tap. Everything came up negative. He missed the most common inherited neurological disease, Charcot Marie Tooth or CMT That is not unusual because it takes the average
CMT patient seven years to get a diagnosis.
I decided not to pursue a diagnosis with that Neurologist. I did not think much of him. He would always test my recovery from my brain injury by telling me three objects and asking me to repeat them. He always told me the same three dam objects; a ball, a flag and a Christmas tree. I still remember them almost 20 years later. I had a host of other problems from the brain injury but he was happy because I could remember those three stupid objects.
I had surgery a few months later to repair the shoulder and once I healed from that I started racing and training again. I have been a pretty good age group runner, able to keep a 7:30 pace in a 5K. After the accident, the best I could manage was a 10:30. My feet burned when I ran as well. I quit competing, puzzled by my loss of ability. The anesthesia given to me during surgery may have accelerated my CMT. Since I was unaware of my condition, I could not brief my doctor to take precautions.
Fast forward a few years and my dad was building a bedroom on the first floor of his house because he had lost all the feeling in his legs and could no longer do stairs. He told me his doctor told him he had an inherited neruomuscular condition and that his sister had the same symptoms. His doctor told him not to worry what it was called because there was not treatment. So now I had another piece of the puzzle. I knew that my dad had passed a condition to me. I wondered if I would progress the same way.
About a year later I got an email from my sister telling me that two of my nieces had been diagnosed with CMT The youngest had been genetically tested and it was confirmed.
So I got on the Internet and as I read about CMT, I knew I had it as well.
So my dad, my aunt, sister and two of my nieces shared CMT. I had a 50/50 chance of inheriting this from my dad. Over 160,000 Americans have this condition. It is very similar to MS. The coating on the nerves breaks down because in the type I have a gene over produces a protein.
The muscles don't get the electrical signals they need and they start to die. The muscles keep getting weaker. This causes tripping, ankles to turn which can break bones in the feet. Most people with CMT wear braces. Fine motor skills in the hands are affected so there can be problems with typing, handwriting, opening jars, and dressing. Anything that your nerves control can be affected. So breathing issues are common in my family and I am losing my hearing. Fatigue is a huge problem for me.
I got my own diagnosis in 2010, a long journey from my bike injury in 2000. What really shocked me is that I had never heard of this disease. It did not seem right to me It is bad enough to have a condition with no treatment, but lack of awareness feels like being victimized a second time.
Many families with CMT do not talk about it. It becomes a shameful secret. My own sister does not talk about her condition and keeps it a secret. I wanted to change that. I wanted to put a face and a name to this condition. I was born with CMT, I didn't do anything wrong and had nothing to be ashamed of. I decided I would be the face of CMT and raise awareness for the disease and funds for research.
Besides even when I was diagnosed it was common for doctors to tell patients to go home and live a quiet life. The thinking was that activity would speed progression and burn out muscles. I knew from my own expedience that was not true. I want to show people that while I had CMT it did not have me. I wanted to show that dreams are within reach. Even though I had not raced in years, it was time to come out of retirement
I set a goal to run the Boston Marathon to raise awareness, a goal I achieved with Boston Marathon runs in 2012.,2013, and 2014. I again used cross training to get me ready. Since I was swimming and biking already to cross train I decided it was time to give triathlon a try. I set aside my fear of the swim. I did a few sprint triathlons and in 2012 I lined up in Austin in the Physically Challenged Open Division of the Paratrithlon National Championship in Austin. I placed first to my surprise.
I've continued to do age group events and have qualified for World Championships in Winter Triathlon, Sprint Duathlon, Long Distance Duathlon, Aqua Bike, Long Distance Triathlon and Aquathlon. I am still not the fastest athlete, but I've been able to figure out events where I can quality for Team USA. I've leaned to be cleaver with my training to stay active and to treat the little injuries that are part of being an athlete with CMT. I focus on the next race instead of my CMT. Being a triathlete helps me to focus on what I still have, not what CMT has taken away.
Multi-sport has allowed me to raise awareness. I hope as more people hear about CMT they will get the diagnosis they deserve. We have a treatment coming to market this year so there is a reason now for doctors to provide a proper diagnosis.
It is also so important to stay active. Research funded by Team CMT efforts have shown we can gain strength. I have seen the community have hope where there used to be allot of anger and bitterness. Instead of keeping their condition a secret, many are being open about their condition, even letting their braces show.
My dad was not active. He spent the last three years of his life in a wheelchair and living in a nursing home. I know being active means I will have a different ending to my story. Being a triathlete has given me a purpose for my life and a path to follow to live a long and happy life. I've just had to be a little cleaver!
***************************
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 TeamUSA at the Aquathon ITU World Championship in Chicago in 2015i, Cozumel
in 2016 and Denmark in 2018. In 2018 finishing 5th in the 60 to 64
age group.
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
In 2014 she represented the U.S. as a paratriathlete at the Pan-American
Triathlon Championship in Dallas ,
Texas USA
for the World Championship.
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”.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a
cure for CMT. We have 218 members in 39 states. We also have members in Australia , England ,
Scotland , Canada , Vietnam ,
Turkey , Finland , France, Ireland, Poland , Iran ,
Norway 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.
Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
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