It is summer time, which means I embark on my yearly training regimen to prepare for the Bike MS here in New Mexico, the Pedal los Pueblos, a two day bike ride through the scenic high desert. I really love training season - a luxurious mix of some time to focus on my fitness, time to enjoy riding with some wonderful individuals from our team, and the some time to enjoy the beauty of New Mexico and do some meditation on two wheels. The ride itself is always one of the highlights of my year. I relish the fact that I can ride, and know that will not always be the case.
I was diagnosed with MS in 2007, at a very vulnerable time in my young career and family life (complete story here). This undeniably has greatly affected my life, but as they say, life goes on. Thanks to a supportive partner and family, I feel like I am where I always thought I would be at my age (I am not going to say middle, but hey, that is where I am). The main reason for this is that I have been very fortunate in that I have responded well to disease modifying therapy and have relapse free for almost 8 years. There is no cure for MS, and the weekly shots I take (and their infernal 6 hours of flu like symptoms) are something I will take until they stop working and I need to move to the next strongest treatment. But based on the estimated trajectory from the beginning of my diagnosis (hint: nowhere good), I am doing fantastic.
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| At the 2015 ride! |
This past year, however, I did have another scare that put this all in perspective again - as if I needed a reminder. Last September, my routine neurology exam (which to the untrained eye looks like a combination sobriety and strength test) revealed I was having difficulty lifting my right toes off the ground when my heel was planted. Not too surprising since this has been my gimpy side since my first bout long ago in 2006. A round of MRI yielded no conclusive reasons for the changes, so we had to do some more tests to eliminate some darker possibilities.
So I had another round of tests and MRIs to look for hallmarks of Devic's disease, a more horrifying and progressive disease than MS. While it turned out to also be not the case (thank goodness), I actually found myself for about a month thinking that things could be much worse than MS. (I would never have guessed I would be wishing everyday that I only had MS.) Add to this some recent very bad diagnoses for both a close family member and a colleague, and you can see where my head has been lately. When it comes down to it your health and those close to you are about all you have on this earth, and sadly these too are sometimes fleeting.
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| A wonderful conference! |
While that episode may have been the darkest of the last year, one of the best experiences I had was attending the National MS Leadership Conference in November in Fort Worth, Texas. I joined hundreds of other volunteers and Society staff to celebrate, motivate, educate, network, and share the mission of the MS Society. It was truly an inspiring experience as I got new ideas and sense of mission about this ride and the Society in general. The best part for me was to interact directly with research and medical students who were working on research projects that are directly funded by the MS Society. My most memorable discussions were about advanced MRI techniques focusing on being able to see onset of the disease earlier, so that disease modifying treatment can be stated early, and another research studying the link between the gut microbiome and autoimmune diseases (I think ultimately this will be found as one of the causes of this disease).
So, I embark on this years training ride with a very keen sense of my own health and mortality, and a renewed sense for the importance for this mission. This research that this society is enabling is directly impacting everyone with this disease. While my kids statistically do not have a greater chance of MS, I hate that there will undeniably be others who will soon get the diagnosis. I ride for them, I ride for those in the future that will be diagnosed, and I ride for myself and my family inspite of this currently incurable disease. Please support me in my mission by donating at my ride website here!
