Back in November I was completely blown away. Jocelyn Wong, one of my favourite professional triathletes (because of her blog, her “living the dream” spirit, her massive achievement of completing 18 ironmans already before the age of 30, and her drive to be the best), suggested me as a feature for her Team website. Team TBB is one of the top triathlon teams, behind athletes such as Rebeccah Keat and Jodie Swallow. The idea of having my story feature on their website was almost incomprehensible to me – I mean, I just get out there, do what I do because I can do it, and try to improve where I can and make the most of what I have.
What a fantastic honour, and I cannot thank Team TBB enough for letting me tell a little about myself, which will hopefully lead to a bit more awareness about CMT.
From the Team TBB website
Donna DeWick lives and trains with Charcot Marie Tooth disease. She is a negotiator for an oil company and an active fundraiser for the Charcot Marie Tooth Association STAR program, in search of a cure for CMT1A. Read her story and be inspired to set and follow your new year’s resolutions…
As we start 2011, what are you going to do, just because you can? What are you going to try, because you don’t know if you can until you do?
As the clock struck midnight in 2003, I decided that my challenge was going to be to walk a half marathon. A few friends and I decided to sign up for the Moonwalk – because we could, because it sounded like fun, and because it was for charity. As we neared the finish, my left foot was in a world of hurt. As someone who had never walked this far before I just assumed it was because I needed new shoes. But to be safe, I booked an appointment with the GP to just make sure that it was nothing serious.
Fast forward to 2004… I found myself at another doctor’s appointment – this time with a neurologist. After the GP, and a follow on visit to an orthopaedic doctor, I found myself having a needle poked into my toes – and to my surprise I had absolutely no clue that the pin had touched my big toe. It turns out that feet are one of the first indicators of nerve disease, and I was showing classic signs of peroneal atrophy and Charcot Marie Tooth disease.
I walked a marathon that year. My legs ached, but I knew that I had found something I enjoyed doing – training for hours at a time, training with a goal in mind, doing something just because I could. I also ended 2004 with a confirmed diagnosis of Charcot Marie Tooth disease – the most common neurological condition impacting 1 in 2500 people. Suddenly I wondered how long I would be able to do these types of challenges. With CMT, the nerves have problems transmitting signals to the muscles. And although everyone with CMT is impacted differently, a future using a wheelchair or walker or leg braces is quite common.
From 2005 until 2007, I hardly noticed any impact from having CMT. But I did notice a general decline in my fitness – maybe because my focus was on my job! So in 2007 I decided to enter my first triathlon – I figured triathlon would be a way to stay motivated with three sports to practice, and it would be something new for me.
But like so many plans, the unexpected often gets in the way. In June, I dislocated my elbow. I wondered if my first triathlon would happen – so after two subsequent dislocations within the span of two months, I made my way to another doctor’s office. In addition to a blessing to complete the triathlon, I also walked away with another diagnosis – of Ehlers Danlos Syndrome, or benign hypermobility – and arm surgery immediately after.
I really enjoyed my first sprint, so in 2008 signed up for another (a great way to rehab from arm surgery too I thought). And by 2009 I stepped up my challenge. I decided to learn to run again. As someone with a history of bad knees (due to EDS) I had always been told that running would be impossible for me. And 2009 almost convinced me of that, as I struggled with knee issues.
I started working with a coach in late 2009 after completing two sprints that year, and throughout 2010 we focused on improving my basic leg strength and stability so that I could run safely and with minimal risk of injury. 2010 would be my year – my year to run 10k, my year to step up to the Olympic distance. Because, with consistent training and focus, I knew that I could.
In August 2010, I did my first Olympic distance triathlon – smiling the whole time, doing what so many doctors had told me was impossible, and knowing that I was well and truly hooked on multisport.
Triathlon has been a way for me to stay focused on my fitness and wellbeing. I am absolutely convinced that with a constant, consistent and focused program of strength and endurance activity, I will be able to build and maintain my muscle strength. And from this base of strength, one day if I do decline due to my nerve disease, I will do so from a peak.
My father says that “nothing good comes easy” – so true for triathlon, especially doing triathlon with the challenges of nerve disease and hypermobile joints. But the reward of crossing the finish line, of testing and pushing past perceived limitations, of redefining and beating those same limitations through hard work and determination… Well to me, those rewards are worth the sore muscles, tight tendons, and early mornings that are a part of the multisport lifestyle!
Doing triathlon is now no longer just my goal – it is a way of life. Because I want to continue to do triathlons for a very long time, I pay attention to what my body needs. I take rest days when I need them (fatigue is a very real part of living with nerve disease). I eat well and make sure I have plenty of foods that are known to help fight muscle cramps (another regular problem for those with CMT).
I am lucky because I work with a great team of doctors, physiotherapists, a coach and a sports therapist who are all on my side when it comes to achieving my next goal – which for 2011 includes a few Olympic distance triathlons, participation in the British Triathlon Federation paratriathlon series, and some endurance single sport events including the Houston to Austin MS 150 300km cycle ride, and the Great Chesapeake Bay 7km Swim.
Because I can.