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Friday, July 11, 2014

Disappointment in Chicago



It is better to be prepared for an opportunity and not have one, than to have an opportunity and not be prepared.” -  Whitney Young Jr. Civil Rights Leader

Did you ever have a performance review or a meeting with your boss that you knew was not going to go well?  Remember that awful sinking feeling in your gut as you made your way to the meeting?  That is how I felt as I walked to my ITU classification appointment in Chicago recently.

The classification system was finally ready. It was re-done in preparation for para-triathlon being an included sport in Rio in 2016. The last two years I was promised by USAT officials  the new system would improve the classification of athletes with neuromuscular conditions like CMT.

I had signed up to compete as an elite para-triathete for the ITU race in Chicago. Elite athletes and para-triatletes would race on Saturday. Age group athletes including a Physically Challenged (PC) Open division would race on Sunday.  Because I am a member of a Chicago based para-triathlon group, I knew most of the elite para-triathletes that would be racing in Chicago. My coach and a number of her athletes would be racing in the Age Group races on Sunday.

I had raced provisionally at PATCO in Dallas because they could not fit me on the classification schedule. So I knew what it was like to race for the U.S. Team as an elite para-triathlete. Although I was the slowest in the field I was looking forward to working hard to close the gap.

I was not hopeful as I made my way to the classification room. I had been turned down twice before at classification before the National Para-triathlon Championships. The assessments were both cursory and the assessors were not interested in any documentation to prove my CMT or my degree of impairment. It was all based on strength and the assessor used minimal strength to assess me. I walked away feeling discounted as a CMT impaired athlete. I was treated like a scammer.

I had offered experts to help with the new classification system. Both my neurologist Dr. Konersman at the MDA clinic here in Milwaukee and Dr. Robert Chetlin offered to work with ITU to assess those of us with neuromuscular conditions like CMT. Dr. Chetlin does research into the effect of exercise on CMT. Neither was contacted.

This assessment was not much different. It is still mostly a strength based test.  It is like any exam you get from a physical therapist if you are injured.  The assessor will ask you to push your foot or hand against their hand and the athlete is given a score from 1 to 5.  They tested range of motion.  What was different is they did watch me run and ride my bike. 

I was asked my age and I wonder what difference it makes. Am I being screened out due to age? They asked how long I had been doing the sport and how many races I did last year. They did not want to see my performance resume. So why even ask?  No chance to provide tests that show my impairment or prove my CMT.

I love it when they ask me how CMT affects the three disciplines in triathlon. I think you are the professionals don’t you know. I love it when I tell them I have CMT and they say is that all?  Believe me CMT provides plenty of challenges for not only being an athlete, but for daily living.

They tested range of motion but told me they believe it has no effect on performance. I doubt they have much experience with CMT impaired athletes.  My physical therapist told me you lose about 5% of performance for every degree of mobility (flexability) lost.   The average person can move their ankle about 6 degrees toward their leg. I am minus on both legs.

They made me go all the way back to my car to get my bike, running shoes and a compression sleeve I use for a brace. As I was walking back I wondered why they were making me do this because I already knew what the outcome would be.

After the tests, they dismissed me from the room so they could confer. I was brought back a short time later and told I had missed the cut off by ten points.

I got a chance to ask questions and I did. I asked how I can be too strong and why someone that can run a 21 minute 5K is not. They asked who I was talking about and I mentioned the current world champion. They told me she did not get in and I later found out 3 out of the 7 athletes on the start list did not get in.

I don’t cry easily, but I felt so dismissed and discounted, I was in tears by the time I left. I was offered the chance to race in the PC Open on Sunday and turned it down. I was too humiliated to face all my friends that would be racing with my failure. It seems the assessors still do not understand the basics of Charcot-Marie-Tooth and how it affects an athlete. I don't think they care about learning either.

Another athlete with CMT did get in which is a bit of progress. I shared with the assessors the reason I am so strong is I work out 2 hours a day under the direction of a coach. This is what I’ve had to do to be ready to compete at the elite level.

The athlete with CMT that got in, by her own admission barely worked out this winter. I worked hard to be ready and told them I felt like I was being punished for the things an elite athlete needs to do. If you don’t work out you lose strength and if you do work out you can get stronger. So the system rewards an athlete that does very little to prepare. At least this is the case for neuro-muscular conditions like CMT.

I think it is by design.  In order to make the U.S. team for funding or to make the Paralympic team for Rio, you have to accumulate points at ITU races like Chicago, PATCO or the National Championship. Top scoring athletes will be invited to the qualification race for Rio next year in Chicago. If you do not score within 5% of the time of the top finisher you get no points. So that means no access to funding or a spot on the U.S. Team.

The reason this matters is single leg amputee’s are now part of the PT4 class where those with neuromuscular conditions are placed. I knew I was in trouble when I saw Grace Norman’s name on the start list for Chicago. It meant she was now in our group.

Norman is a high school cross country runner from Ohio and a talented athlete. She is a lovely young woman with an awesome family. I spent quite a bit of time talking to her dad at two events last year.

Last year at the Pleasant Prairie Triathlon the para-triathletes were split into wheel chair and ambulatory. So I raced against Grace. Even though I took a wrong turn on the course that cost me several minutes I beat Grace by three minutes. Her time for a sprint triathlon was 1 hr 46 minutes.  Two months later Grace and I raced again in Chicago. This race had all six paratriathlon categories so under the old system we were in different classes. Grace now had a racing prosthesis and turned in a time of 1 hr 28 minutes. What difference equipment can make. Her time would have made her one of the top finishers in the race.

Grace is now setting American records on the track. If I was Grace I would use the equipment as well. There is nothing wrong with using the available tools. It puts her on even footing with other single leg amputees.  It just gives her an advantage over someone like me with a neuromuscular condition with 4 impaired limbs.

 Let me make really clear I admire Grace as an athlete, I think like any athlete she has worked very hard to succeed. I just think athlets that have neuromuscular issues should not be in the same category as single leg amputees. If it was not Grace it will be someone else. We can't compete with them, our impairments are different. The whole classification system is supposed to put those of like impairments together. That is not the case the way the current system stands.  

 That is true whether assessors recognize it or not. Racing braces for someone like me cost between $15 K to $20K.  If I wore braces I would probably get in. I don’t need them to walk, but the injuries from working out are getting tougher to manage. I wonder if braces would help, but have no idea how I would pay for them.  I am not even sure if braces would help me to the extent adaptive equipment have helped someone like Grace.

So no one with a condition like MS, CMT or CP will be competitive with any single leg amputee using allowed adaptions.  Last year the National Champion in the TRI 3 category won with a time of  1 hr 35 minutes and I through a lot of work this winter I had closed that gap and looked to be competitive at Nationals in September. 

Grace turned in a time of 1 hr 17 minutes at ITU in Chicago.  To qualify for points or U.S. Team funding an athlete would have to be within 5% of that time.  So someone with a condition like CMT would have to have a time of 1 hr 24 minutes.  I know of no American athlete with a neuro condition that can do that. That time would take many age group categories among able bodied women.  

If I could race a time like that I would qualify for the U.S. team as an age group athlete.  My condition prevents that. So even if I classified in and took second to Grace at Nationals I would get no points or opportunity for USAT funding.

So at least right now even if an athlete with a neuromuscular condition does classify in, it is impossible as the category is configured to be competitive.  I think this was done deliberately.

Last year after the Chicago Triathlon,a coordinator for the Chicago paratriathlon club asked if anyone had good pictures from the race for the web site. They were offering to pay the event photographer for them.  I e-mailed the founder and said I would purchase my pictures for them and they could use whatever they wanted. I got no reply back and it dawned on me that my pictures were not wanted. I don’t look disabled. I look perfectly normal in a photo. So I was not wanted. I get it we are not good PR, we are not good for fundraising.  In a race earlier in the year while I was in the water waiting for the start of the para-triathlon race, another para-triathlete turned to me and said this area is for para-triathletes only. Meaning “you don’t belong”. I believe the USAT and ITU are telling those like myself the same thing. They are trying to grow the sport and we don’t look impaired. So I think they do not want us at ITU events.  We don’t garner sympathy, we don’t look heroic. They think we are not inspiring.

A CMT affected athlete that competes in another para-sport has told me other athletes have come up to him and told him there is nothing wrong with him and he should not be competing as a para-athlete. So I know the attitude is out there for not just me but others as well.

Other organizations pay lip service to helping athetes with neuromuscular challenges. The Challenged Athletes Foundation holds clinics for paratriathletes. When I asked about going, I was told they help athletes except those with neuromuscular conditions.  They also hand out grants, but if you have CMT you pretty much don't get a grant unless you are an amputee. That is not just my observation, I've talked to other CMT affected athletes.  There was a clinic last year for paratriathletes, when I asked about going I was told it was sponsored by a prothesis maker and would not be able to attend. So it is not a stretch based on my experience to feel the decisions on classifcation by the ITU are meant to exclude those of use with neuromuscular conditions.

I also wonder about how even the standard of impairment is. In Dallas while I was waiting to enter the swim, I was standing next to a visually impaired Canadian athlete. She was texting on her cell phone.  I think she had a depth perception issue. I do not dispute her being visually impaired status or dispute her having challenges. I just wonder about the impairment standard. She can see well enough to text on a pretty small cell phone, but I am too strong? I don’t know where I belong anymore either. My coach is always bugging me to do group rides and workouts. It gets old getting lapped on the track by normal athletes or always being the slowest one on a ride. Among para-triathletes I was among the best. I think I belong.

So what now? I was recently reading a book by Lisa Nichols called “No Matter What”. She said you should always try to find the blessing in every situation. I have to admit I can’t see it, at least not right now. I  have a plaque at home on my wall that says “ When God closes a door, he opens a window.”  I am not sure what is next for me. I feel a bit like I have failed the CMT community.  I have to admit I am mad at God for continuing to give me the desire to do this and not providing the means. I’ve done my part and worked hard and feel let down. The USAT let me down. I was promised a more inclusive system and we got just the opposite.
I wanted to reach the elite levels for my own personal goals I will admit that.  I know to retain the ability to function fully I need to keep working out. I am trying to stay out of braces. Working for opportunity to be on the U.S. team and compete in Rio drove me. Maybe it was a silly dream, but it was my dream. I was ready and prepared to begin that journey in Chicago.

But there is a bigger issue here.  Those of us with invisible conditions need to be recognized as athletes too. I wanted to show people with CMT what is possible.  That you can live a full life even with this condition. That you can have CMT but it does not have to have you. I want people to set big goals and go after them.  I want them to be proud of who they are and not hide their CMT.   Exercise is so important and many with CMT still believe it is harmful. I want to continue to be a role model to show them the benefits of being active. I wanted to show them nothing is impossible, that even a 56 year old athlete with CMT had the chance to be in Rio in 2016.

The USAT and ITU are missing a big opportunity. There are over 300,000 Americans that have either MS or CMT. There are many Americans with invisible conditions. What a great thing it would be for athletes with CMT, MS, CP and other neurological conditions to compete at the highest levels.   A Team CMT member that ran Boston this year as a Mobility Impaired runner told me she did not know it was possible until she saw me do it.  That example is so important and it is an opportunity that is largely being missed.
I am not sure what my competitive future holds. I know I cannot continue to travel to races across the country without financial help. My first year competing at the National level cost me $12,000.  Funding from the USAT that will now be available to elite triathletes would make a huge difference. Under the current system there is no way we will qualify.

I will continue to compete as a runner and triathlete, just not sure whether it will be para-triathlon at some point or as an age group athlete.  Because of my CMT I am not competitive, but it may be my only option if the ITU does not change it's system.

Here is the summary of the very confusing new sport classes. I missed out on qualifying for PT4 by 10 points.

This is a summary of the International Triathlon (ITU) Classification Categories

  • PT1 - Wheelchair users. Includes athletes with comparable activity limitation and an impairment of, but not limited to:  muscle power, limb deficiency, hypertonia, ataxia, athetosis that prevent the ability to safely ride a conventional bike and run. Through classification assessment, athletes must have a score of up to 640,0 points. Athletes must use a recumbent handcycle on the bike course and a racing wheelchair on the run segment.

  • PT2 - Includes athletes with comparable activity limitation and an impairment of, but not limited to, limb deficiency, hypertonia, ataxia and or athetosis, impaired muscle power or range of movement that through classification assessment have a score of up to 454,9 points. In both bike and run segments, amputee athletes may use approved prosthesis or other supportive devices.

  • PT3 - Includes athletes with comparable activity limitation and an impairment of, but not limited to, limb deficiency, hypertonia, ataxia and or athetosis, impaired muscle power or range of movement that through classification assessment have a score from 455,0 to 494,9 points. In both bike and run segments, the athlete may use approved prosthesis or other supportive devices.

  • PT4 - Includes athletes with comparable activity limitation and an impairment of, but not limited to, limb deficiency, hypertonia, ataxia and or athetosis, impaired muscle power or range of movement that through classification assessment have a score from 495,0 to 557,0 points included. In both bike and run segments, the athlete may use approved prosthesis or other supportive devices.

  • PT5 - Total or Partial visual Impairment (IBSA/IPC defined sub-classes B1, B2, and B3): Includes athletes who are totally blind, from no light perception in either eye, to some light perception but unable to recognize the shape of a hand at any distance or in any direction (B1) and partially sighted athletes with a visual acuity of less than 6/60 vision or visual field less than 20 degrees with best corrective vision (B2-B3). A guide from the same nationality and gender is mandatory throughout the race. Must ride a tandem during the bike segment. 
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Author competing at PATCO Dallas 2014

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.  She was the 2012 National Champion Paratriathlon Open Division. In 2013 she qualified as a member of the Team USA Duathlon Team and was eligible to compete in 2014 at the Age Group World Duathlon Sprint Championship in Pontevedre Spain.  She chose instead to represent the U.S. as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She is the author of the book, “Running for My Life” that details her experience as a CMT affected athlete.

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 CMT. We have 151 members in 30 states. We also have members in Australia, Canada, Vietnam, Turkey, Finland and Iran. 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/

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