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| Team CMT at the Five Boro Bike Ride New York City |
"Everyone has a calling and your job is to figure out as soon as possible what that is, who you were born to be and begin to honor that in the best possible way for yourself. " - Oprah Winfrey
A few weeks ago I saw a posting on one of the CMT facebook sites about someone struggling to get a diagnosis. I see these posts so often. I once saw a statistic that it can take someon seven years on average to get a CMT diagnosis.
That mirrors my own story. As long as I can remember I had all the symptoms. I have type 1A which shows sysmptoms early in life unlike some of the other 22 types of CMT. It is also the most common affect as many as 75 to 80% of CMT patients.
I tripped all the time. I was slow. I had terrible handwriting. I was slow and not at all athletic. I fought fatigue for years. As a runner I would get injured often. I had high arches, hammer toughs and extremely tight calve muscles. None of the doctors or physical therapists ever mentioned CMT, but to be fair there was no family history.
It took a head injury from a bike accident to start me on the path to my diagnosis. I was assigned a neurologist as follow-up care. Because of some things about the accident, he started probing further.
He told me I had some kind of neuromuscular condition. He started testing me from some scary things like ALS. A nurse friend of mine asked if I really wanted to know, it the condition would not get bad until I was middle aged. I agreed with her and decided not to pursue it.
A few years later, my dad told me he was told by his doctor that he had a neuromuscular condition but not to worry what it was called. There was no treatment and no cure. His sister probably had the same condition.
I did not have to wait long to put a name to his condition and mine. My two yougest nieces were falling and breaking bones in their feet. A doctor at Childrens Hospital in Philadelphia gave my niece Caitlin a genetic test. She was diagnosed with CMT and soon after so was I.
I wanted to know the name of the enemy I was fighting. I think every patient deserves the dignity of a diagnosis. Because there are some common drugs that can accelerate CMT it is important to have a diagnosis.
I recently participated in a clinical trial for CMT. I could not have done that without a diagnosis. New trials will provide new opportinties for those for a proper diagnosis.
For me personally I wish I had known sooner. Many workplaces seem to want more than a 40 hour week out of their staff. I tried to meet those requirements as best I could. But with also wanting to workout after work, it was tough. I remember one really tough week when I was working a 3 pm to midnight shift as part of my supervisor job at a local utility. Three nights in a row, I ended up working until 3 am. One of those days I had to be back at 11 am for a meeting. I was exhausted. Usually that second shift is really very quiet after 9 pm. So I sent a not to my manager asking to go home at 9 pm if it was quiet. The ohter male managers did it all the time. They didn't tell the boss as he had asked, they just went.
He pulled me into a conference room and told me basically that the hours were what the job demanded. I pushed back out of exhaustioni and frustration. It seems silly to sit there when nothing was going on and I was so tired. He did not appreciate my fighting the hours because he put me on an performance improvement plan. If I had known my fatigue was from CMT, I could hopefully have shared that with him and gotten a different result.
Being in the working world with CMT can present unique challenges. I moved on to a manager job within the same utility. Without knowing it, I interrupted what I suspect was a Director on a phone conference call. I was in the process at the time of being fitted for hearing aids. My manager asked me to allow the much younger assistant to the Director to monitor my speech. You know, just to keep me from interrupting. I asked for a peer to do that instead. Another women my own age. She said she never saw me interrupt anyone. What is funny is it was common for the woman staff to be interrupted by men. There were only 94 women in the entire division, mostly administrative staff.
I shared with my manager,that I had hearing loss and was aboiut to get hearing aids. I was put on a performance improvement plan. The earler plan from the other manager was cited. So two strikes from CMT. My hearing doctor said it was to be expected that I might interrupt on a conference call. Most people with hearing loss read lips. That gets missed on a phone call.
As an employee with an impairment I was legally entitled to ask for resonable accomodations. I did disclose that I had CMT. Without a diagnosis I feel like my rights would have been limited.
I ended up leaving the company a short time later in a buy out when three plants were closed. If I had not had my diagnosis, I think I would have been forced out with no buy-out package.
CMT presents breathing difficulties for many. That puts us more at risk during this current pandemic. It is vital to know that we have CMT and the type so doctors can take the proper precautions to protect our breathing.
I hope the work I have done and the work of my Team CMT members has helped to raise awareness.
My goal has been to put a names and faces to CMT. We can't find a cure for a disease no one has ever heard of. We can't raise money for research and programs without wider public recognition.
With my diagnosis I found my life purpose and my mission. I became the person I was meant to be.
I ddon't do media, write books and blogs to promote myself. I live a private life before my diagmosis
My activities are in service to the CMT community both diagnosed and those searching for an answer to their invisible enemy.
My hope has been when someone reads my blog or book, or sees one of our Team CMT members racing that they will learn a bit about CMT. They may recognize like I did the symptoms that will lead to the disnity of their own diagnosis.
***************************
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.
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”.
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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#kneedeepinwork
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