I always wonder if I am doing enough today to have my best tomorrow. I was diagnosed with Multiple Sclerosis in July of 1999 at age 23. MS is an invisible disease where the cause and the course of the disease are unknown, and we seem light years away from a cure. Upon diagnosis all I heard from my doctor was a list of things I shouldn’t do: workout for more than 30 minutes, spend time sunning at the beach, take hot showers. I am happy to say that over 19 years later, I enjoy all three of those things.
My initial symptom, which lead to my diagnosis, was numbness in my leg that came on slowly and rescinded at the same pace leaving me feeling normal, albeit armed with the knowledge that I had lesions on my brain. The course of my MS was benign until 2015 when I began experiencing MS-related drop foot when I ran. Imagine running smoothly along a paved road when your foot decides not to dorsiflex, preventing it from completing the stride, and causing your toes to stub the ground. I stumbled a few times and took a nasty fall once. It was incredibly frustrating and a huge blow to my running confidence.
At the time I was a 14-time marathoner, training for number 15. I needed to find a way to run. I tried using cooling headbands to keep my body temperature down – FAIL. I tried taping my foot and shin to help my foot flex – FAIL. I tried acupuncture – FAIL. I visited a few orthopedic doctors – FAIL, FAIL and FAIL. I then changed my running strategy, threw the goal of running a PR out the window and began the run/walk. I played with a few combos and settled on running for 3 minutes, walking for 1, shifting to run 1, walk 1 later in the long run. It worked sometimes, but there were days when running a minute was difficult. I got through marathon number 15 by walking the last two miles of the Boston Marathon and crossing the finish line in a humiliating swift walk. It felt like defeat.
I was and remain convinced that running has been a huge factor in the relatively benign course of my disease. Working out provides so many benefits that I thrive on: the challenge, the competitiveness, the sweaty fatigue, the feeling of pushing yourself to physical limits.
It was clear I need to explore assistive devices if I wanted to continue to run. I was reluctant at first, I didn’t like the stigma of it but I could not give up. I needed to run. I needed to know that I was doing all I could do today to have my best tomorrow. So staying active was a priority.
My first two AFO braces (top pics) were bought on Amazon. Both were cloth and Velcro and neither provided me enough support while running. I then transitioned to carbon fiber braces (bottom pics) that I ordered through my orthotist with a prescription from my MS doc.
The carbon fiber brace that works best for me and is the one I currently train in (bottom right pic) is the Noodle Classic by Kinetic Research. It is custom so it fits my leg perfectly.
Re-learning to run in an AFO is a challenge. It requires more effort and alters my stride just a bit. I have been fortunate that my current AFO has me pretty close to my natural stride but it’s still been quite a journey to reclaim my running. In fact, I am still in the process of doing so which is the motivation behind this blog.
Physical therapy has become key to helping me reclaim my running. It helps me manage tightness and pain associated with the MS spasticity that causes drop foot. The battle with my healthcare insurance company has been incredibly frustrating and a huge demand of my time. I have been denied access to physical therapy the past two years. In fact, one time my insurer told me I could no longer be rehabbed and assigned me to occupational therapy. That was a serious blow to my pride. My health insurance plan entitles me to 60 physical therapy visits a year, so I do not know why I get cut off after 16 visits. And I am sure as a lot of you know, it is impossible to talk to the anonymous person who makes these medical decisions on your behalf at a healthcare insurance company. I want to do everything I can today, to make sure I have my best tomorrow, but it doesn’t feel like my healthcare insurer feels the same way.
So as I am closing in on my 20 year anniversary of my MS diagnosis, and I intend to celebrate my diagnosis by returning to where my marathon running began and complete the 2019 Dublin Marathon. Along the way I hope to motivate others to be active, even when there are physical and mental obstacles. I want people to be fearless and to take on the challenge of living an active lifestyle whether it is through walking, cycling, strength training, or my personal favorite, running.
I also intend to educate healthcare insurers and ultimately change the way insurers make medical decisions for patients. I want healthcare insurers to learn to value the role of physical fitness in long-term well-being, disease management, and mental wellness.
I am celebrating my 20 year anniversary of being diagnosed with MS by daring to reclaim my marathon runner status, by being determined to #OutRunMS, and by being dedicated to educating healthcare insurers on the benefits of physical activity for long-term disease management.
Follow my journey as I #OutRunMS