September 13, 2003, started great. I drove to Ohio to watch my beloved Ohio State Buckeyes – defending National Champions – play NC State. It was a classic, triple-overtime game – of course, the Buckeyes came out on top.
While that was a highlight of the weekend, the low light was a very uncomfortable and odd tingling sensation that referred down from my chest to the tips of my toes. It happened every time I put my head down. It was strange enough that I called a neurologist friend for some insight and advice. Two months and some tests later, I was diagnosed with Primary Progressive Multiple Sclerosis (MS).
Fast forward 19 years, and here we are amid National Multiple Sclerosis (MS) Awareness Month. When asked to consider sharing some thoughts on my journey with MS, I immediately started replaying some of the highs and lows of the last 19 years. Fortunately, the joys far outnumber the lows.
It hasn’t been until the last five years that I have experienced much decline in my physical state. I struggle today with balance, lower body strength, and occasional “squigglies” in my vision. I walk with assistance – first a homemade hickory cane (thank you, Uncle Marion), now the help of two hiking sticks (shout out to Cascade Mountain Tech), and wheelchair rides through airports. I have been through a handful of injectable and oral medications. I am now on an infusion therapy (OCREVUS) regimen twice a year.
The tricky thing (for me) about MS is that you can’t tell if the medicine is working. There is no getting better; there is striving for the status quo. So while I continue to decline, I am left to consider that without OCREVUS, maybe the decline would be faster.
As I look back over these years, it is easy to recognize a better antidote than Betaseron, Copaxone, Gilenya, or OCREVUS. That is surrounding myself with loving people. My wife is amazing. Our kids, family, and friends are so caring and compassionate, and without these people, I would undoubtedly have declined faster. And then there is my job at Captive Radiology, working with the best of the best.
Diagnostic imaging helps our hospital and physician partners diagnose and treat their patients daily. Their diseases and injuries, cancer, torn ACLs, or MS are critical, and everyone deserves access to care. I am grateful Captive provides this care in the manner it does. I am further appreciative to play a small role in it.
I don’t know where this journey with MS is heading for me. No one does. The progressive nature of MS is what it is. I need to keep moving. I will. I need to keep learning and open myself up to new ideas and new types of therapy and exercise. But, through it all, I am blessed. I am blessed by the people in my life – personally and professionally. Legendary Ohio State Football Coach Woody Hayes famously said, “You win with people. ” He was right – on and off the field.