Note: This blog is the companion piece to the entry dated 7 December 2009 . The original posting on 7 December 2009 was revised after reaction received from British Triathlon and broken into two parts. The December entry details the paratriathlon assessment process, whereas this piece contains more of my feelings, reflections and thoughts on the process and how paratriathlon relates to me, and what I have done since December.
At the request of those who have contributed, I am maintaining their anonymity. The email extractions are copies of the responses I have received. The individuals who sent those emails are probably not aware that they were used in this blog – however, they were aware that I wrote a blog as at a minimum the URL is on the footer of my emails.
I would like to make it clear that in no way am I seeking to do a disservice to paratriathlon. Rather, I think it is important that the process is demystified and that everyone – athletes, those with impairments, and non-athletes alike – understands a bit more about the world of parasport so that its aims can be more widely embraced by our countries and colleagues. I would like to see more opportunities for challenged athletes. I welcome your comments, questions and feedback on this piece and its companion.
In December of 2009 I took a train to Leicester (in the UK) to see if I classified with paratriathlon status.
It seems kind of funny to say that I wanted paratriathlon status. But in 2009, I learned that paratriathlon classification existed, and finally, I thought, I would have the chance to compare myself with other similarly challenged people. Finally, instead of seeing myself last on the list of triathlon finishers, I would be able to have a category that fit and maybe I wouldn’t be on the bottom.
I wanted to be classified. I wanted the TRI3 “Les Autres” category, so that for once in my life I might not be the slowest in the game.
But sometimes life throws you a curveball and gives you something you didn’t expect.
In 2004 that curveball for me was getting a diagnosis of CMT. A diagnosis that I didn’t really process into my life until 2007. I guess hearing that you have a progressive degenerative nerve disease is something that can take a while to process. I didn’t decide to do something about it – taking control of my life and building my strength and physical condition – until 2009.
And on December 7th 2009 I was thrown another curveball – although not of the life changing variety, it was a curveball nonetheless. I walked away with a paratriathlon classification – but not a classification that would enable me to compare myself with other similarly challenged athletes.
Rather, I walked away with the TRI4 provisional classification.
TRI4 is a classification that recognises arm impairment.
Now, as readers of my blog or my tweetstream, you may know that my focus and biggest challenges with triathlon have been with running. With the objective testing criteria set out by the International Triathlon Union, it seems that my legs are “not impaired enough” to merit a full body paratriathlon classification.
In December I got a curveball, and I walked away dissatisfied and disillusioned. I questioned my motivation for doing triathlon, and wanted answers. I wanted to finish the classification process so that I could draw a line under it and move on.
It is now May, and it is still not complete.
But in the meantime I have asked for further information from my medical team at the National Hospital for Neurology, and in particular the physiotherapists I have worked with at the Institute for Neurology. I have considered my motivations for doing triathlon. And I have thought long and hard about why on earth I am doing what I am doing…
Q&A with the Centre for Neuromuscular Diseases
DD: The ITU paratriathlon assessment criteria uses the Oxford Scale to assess degree of impairment. It is important to note that the ITU is not seeking to make a medical diagnosis, but to establish degrees of impairment.
ION: I didn’t know much about the Oxford Scale except for what I had googled in December, so I asked my physiotherapists for more background and information – and in particular I wanted to know if they though the Oxford Scale would adequately establish the degree of impairment I have from CMT. Their responses follow (denoted ION).
DD: The paratriathlon assessment uses the Oxford Scale to assess impairment. What is the Oxford Scale?
ION: A 5 point clinical scale for measuring muscle strength.
DD: Are there limitations to the Oxford Scale?
ION: When different examiners assess the same person there can be some variability in scoring due to slight differences in testing technique and interpretation of the Scale. This can be reduced by training examiners and using strict protocols on testing positions and procedures.
DD: To use the Oxford Scale, does the practitioner also need to have understanding of the condition they are testing?
ION: Strictly, the answer is no. The Scale tests muscle strength and does not give an indication of the cause of muscle weakness if it is present.
DD: Can the tests assess the impact of a neuromuscular disease such as CMT accurately?
ION: The Scale tests only muscle strength, so gives no direct indication of function. It should be used as part of a battery of tests, which also includes functional activities, in order to assess both the impairments (muscle weakness, sensory loss, joint range of motion etc) and the activity and participation limitations that are a result of the condition.
DD: How would you say CMT would impact the three sports of triathlon – swim, bike and run?
ION: This is difficult to answer because everyone is affected differently by their CMT. For swimming there may be problems with the wrist/hand fatiguing during the pull phase of the stroke. For cycling, a weakened gastrocnemius will reduce efficiency of pedalling due to impaired transfer of power from the gluts and quads to the crank of the bike. Many adults with CMT have a lot of difficulty running. This can be due to how deformities of the foot affect the foot biomechanics but also because of weakness of the muscles that work hard to push us forward during running.
DD: In addition to CMT I also have hypermobility. What is hypermobility?
ION: A family of conditions where an individual has increased flexibility of their joints. Usually, a diagnosis of hypermobility syndrome would only be made if the increased flexibility has caused adverse symptoms such as pain or joint dislocations.
DD: How does this impact biomechanics of swimming? Biking? Running?
ION: Firstly, this question is very difficult to answer because the effects of hypermobility, and CMT, would impact differently in each individual so it is impossible to give a one size fits all answer. The effects of the two conditions would also interact to make the question even more difficult to answer.
There is anecdotal evidence that many top swimmers have hypermobile shoulder joints and it has been suggested that this trait might improve swimming performance by allowing a more efficient stroke. It would also allow the ankle to adopt a more streamlined flipper position by increasing the angle of plantar-flexion (pointing in line with the leg).
With regards to running cycling and swimming… if the knees are prone to hyperextending (straightening beyond straight) then prolonged running could cause knee pain. Also, any other excessively lax joints could develop pain syndromes because of altered biomechanics with any of the sports that you mentioned.
Many people with CMT benefit from an orthotics device at the foot and/or ankle to help with alignment, stability and address foot drop, if it is present. This would be particularly important for running and cycling.
Clearly the Oxford Scale is a good tool for assessment purposes, and from my Q&A with my physiotherapy team, it would seem that the functional observation (observation in competition) to finalise classification is an absolutely critical part of the paratriathlon classification process.
Getting observed in competition is not easy. In December, when I finalised my 2010 triathlon race plans, I chose races that I *wanted* to do. I chose Blenheim as an early season sprint triathlon, as a warm up race and a progress check point. And then, because I love the London Triathlon and have done the sprint event there since 2007, I chose it as my “A-race” and target for completing my first Olympic distance triathlon.
The opportunities for classification this year, for me, are the Dextro Hyde Park triathlon, and UK Nationals.
I am planning on volunteering anyway at Dextro, and even if not selected as a volunteer I wanted to watch the elite women on Saturday and elite men on Sunday. So I hope that I will be able to complete my assessment process there.
The assessors will not see me in competition there. I am not sure how that impacts the assessment process. And I am not sure how to handle my registrations at my events. Is it even worth it to register with a provisional classification, especially as the TRI4 category offers me none of the comparative advantages which I had hoped for (TRI4 athletes are arm impaired whereas my greatest difficulty is with the run).
I am still left with some unanswered questions. I have not yet been able to draw a line under this yet.
It leads me to wonder if I should just abandon the whole paratriathlon process.
At the end of March I went back to the US for a few weeks for holidays. As Florida is such a popular training destination, and also I knew the Nautica Miami Triathlon was being held just after we were leaving, I contacted USAT (USA Triathlon) to see if they had any assessors located in Florida who could complete/redo my paratriathlon assessment process. I had hoped to have my new orthotics by then which may influence the muscle strength test outcomes (for the record I still DO NOT have my orthotics… that appointment is finally on Wednesday May 26th!)
I have to thank USAT for being so accessible. Beginning in summer 2009 I started following them on Twitter, and their director of online communications has been a huge help in pointing me to the right folks to answer my questions.
And answer my question they did. Here is the response with regard to my question if it would be possible to schedule an assessment during my time in Florida:
“Just to be completely clear, there are currently no certified triathlon classifiers anywhere in the US.”
(did you hear that? it was the sound of my jaw hitting the floor!)
There are no certified triathlon classifiers anywhere in the US. None. Zero. Zip.
There are over 300 million people who live in the United States. And there is not one single paratriathlon assessor.
1 in 2500 people have CMT (my condition). That is a pool of 120,000 people that would not be able to be assessed for paratriathlon if they wanted to be… Not to mention other challenges that people face, like ALS, MS, spinal cord injuries…
What on earth does this say about our ability to embrace parasport? To offer equal footing and opportunity to challenged athletes?
I have no words.
Well I do… but I don’t think I should write them down.
Yet another observation…
And to add salt to the wound…
In April I was reading the online version of Triathlete Europe and an article about the extension of opportunities for paratriathletes within the WTC (World Triathlon Corporation) series of events. For those of you not familiar with the world of triathlon, there is the International Triathlon Union, which amongst other things is responsible for the World Championship Series of Olympic professional triathlon racing, and who developed the scale for paratriathlon classification for which I have been classified. And there is the WTC, which is the organisation responsible for Ironman and Ironman 70.3 racing (the body behind the Kona Ironman World Championships, seeing Julie Moss on NBC crawl across the finishing line is one of my earliest memories of triathlon…)
I noticed that in the WTC criteria there is no specific criteria for athletes with an “Other” impairment.
They do not even offer classification.
I sent them the following email:
“I read your announcement on the Ironman.com site, as well as Triathlete Europe.
I noticed the paratriathlon classifications that WTC uses do not include an “other” category – unlike ITU or the aspirational Olympic event.
I know it is difficult to have an “other” category as it requires assessment and verification. However, by not having an “other” category you miss out on any number of challenged athletes. You miss for example athletes with MS (there was the MS finisher at Ironman Canada last year, Jenny). You miss out on athletes with CMT (a neuromuscular disorder – I know an IMoo finisher with CMT). You miss out on athletes with spinal injuries (I know a CAT3 triathlete who competes on Xterra and ITU level who would not classify under the WTC system).
It is a blow for athletes like me who are seeking classification .
Thank you for your consideration for the inclusion of such a category.”
And their reply?
“Thank you for your email and your patience in waiting for my response. I will be sure to pass your email along to my colleagues regarding expanding the Paratriathlete qualifications and categories. We appreciate the feedback of our athletes and certainly will take your inquiry into consideration. For the most current information, please check http://www.ironman.com If yo.u have any further questions, please feel free to contact me.”
Hm… Do you think my email was read?
So, what next?
Now that I have vented my spleen, shown you my frustration, and chronicled my own journey with paratriathlon classification, I think it merits that question. So, what next?
And, why bother?
I am 100% proud to be doing triathlon. I firmly believe that it offers to me an opportunity to get strong, in a whole body way. It is not easy – but nothing good ever is (or at least that is what my father told me when I was growing up). I love the variety in training, seeing my progress, working to become strong… And I really truly believe that the hard work I am doing will, may, someday mean that any deterioration in muscle strength and function that I experience from my CMT will come from a base of strength, and maybe not impact me as much as others with CMT. That is my hope.
When I started to train seriously for triathlon, I did it for this reason – to get strong. The added benefit of obtaining paratriathlon classification was just that – an added plus, to enable me to for the first time ever to have a way to compare myself with other similarly able athletes.
But as time went on, paratriathlon classification also provided me fodder for daydreaming and fantasy – maybe I would classify and I could be “good” at something athletic. Maybe I could qualify for worlds. Maybe…
Enough of that daydreaming.
Back to reality
I am refocusing on my training, for training’s sake.
Why am I doing this? I TRI BECAUSE I CAN.
I’ll finish my paratriathlon classification journey. But it will no longer rule my heart, or my choices. It is just an add on… A nice to have NOT a need to have…
The reality is that opportunities are not there yet for challenged athletes.
Opportunities are abound for those who want to be a voice for the challenged.
I think there is room in the world for another agitator to ensure that challenged athletes have the chance to be heard.
(she says raising her hand shyly…)