EVERY STEP BEATS MS

International Guest Blog ::                                             Gene Caffrey, USA                         

I was diagnosed in February 2010, a mere 3 months after completing the Florida Ironman.  I experienced some issues throughout the race and came home with numb feet.  For the longest time I thought I had tied my shoes too tight for the race but when the numbness didn't go away and started to move up my legs, I decided to see a neurologist.  After meeting with the doctor, doing lots of research on transverse myelitis, and getting MRIs done, I was not at all prepared for the phone call informing me that the multiple brain and spinal cord lesions suggested multiple sclerosis.

The next several months involved starting MS treatments, searching for the best doctors, and doing a lot of research.  Surely I did not really have multiple sclerosis.  The internet outlines a lot of other diseases that mimic MS and my wife was determined to find the one I REALLY had.  There was no way she was going to believe that I had MS.

After meeting with a few doctors and even having a spinal tap to further confirm the diagnosis, reality started to set in.  I have multiple sclerosis.  Will these symptoms from my first identifiable attack get worse?  Will they eventually get better?  My feet are a mess; they feel like they are constantly on fire with a simultaneous pins and needles feeling, and my socks feel like they are made of sandpaper.  My legs feel numb, the MS hug is making it uncomfortable for my daughter to hug me, and I'm afraid of incontinence because everything feels numb down there, like I'm wearing a diaper.

Over time, my symptoms did improve but none of them completely went away, especially my feet.  My second attack involved my shoulder, and this further confirmed my Relapsing Remitting MS diagnosis.  The definition of relapsing remitting still confuses me 4 years in because I struggle on a daily basis with so many symptoms.  I guess I'm one of the unlucky people who will never go back to my "pre-attack" self.

I have to be careful to not refer to myself as being "unlucky" though because after stopping my intense physical activity and races for the first year after my diagnosis (out of fear of worsening my condition), I now use that training to stay ahead of my MS.  Working out daily, competing in races, and maintaining my diet are as much a part of my treatment as my medication.  My mantra of "Every Step Beats MS" is tattooed on my calf to keep myself motivated on the days when everything hurts.  I have also found it is a great conversation starter that enables me to share my personal story and provide support to other people affected by MS.  I am currently working with the MS Society to raise awareness and funds through a program called "Finish MS" (my website is www.everystepbeatsms.com ).   My hope is to inspire as many people as I can through my positive outlook.  "Every Step Beats MS" came to me during a challenging run when everything on my body hurt; the "step" however refers to any obstacle and/or frustrating turn of events associated with this unpredictable, complex disease.

Stay strong and remember that "Every Step Beats MS"!

Gene Caffrey

Gene Caffrey from Raleigh, North Carolina, USA has been inspiring all of us with his story since he started fighting back against the MS.  His motto "Every Step Beats MS", is a great philosophy and guide for all of the #MSFamily

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