Biography

Hello MS’ers!

It still sounds weird: “I have MS (RRMS).”

I’m the sort of person that rolls with what comes; an optimist yet a realist; tenacious; a learner; a sponge for knowledge; and, a person who faces new challenges with tenacity.  However…

Who woulda thunk it?!  Me?  A male, 53 years old, living a healthy lifestyle, and then BAM!…I was diagnosed with Multiple Sclerosis.  It still sounds weird, those words coming out of my mouth.   When diagnosis (October 23, 2017, with a spinal lesion and 4 on the brain) shook up my world, I embraced what lay ahead without self-pity.  In some ways, my wife was more upset with those words-Multiple Sclerosis-than I.  This reality snuck it’s way into our lives and we’re now fighting as one.  (We don’t have kids, so it’s easier to focus on each other’s wants and needs.)

We’re fortunate to have excellent healthcare. We’ve built a great team of doctors, all led by a neurologist whom we call Dr. Awesome (her real last name begins with the letter A.)  Luckily, with my early diagnosis and an aggressive approach, I started Ocrevus DMT immediately.  Incredibly, I’ve had no relapses and no new lesions!

Adjustment to this life has been interesting, learning about my new body and mind in the context of MS.   Truth is, I feel a little guilty (maybe not the perfect word) that my MS isn’t debilitating. And the prognosis looks really great if the Ocrevus remains effective. Thus, when I read about others’ MS, I don’t feel like I have the right to even say I have MS.  I know MS varies with each of us, but I don’t have things so bad.  Is that wrong?  Maybe it’s all too new for me to have proper perspective. I know my symptoms are real, but sometimes I wonder if it’s all in my head. I really believe I have no right to put myself in the same bucket as those with greater MS progression than my own.

Lastly, I’ve been placed on involuntary leave from my job (prior to Covid-19) and denied reasonable accommodations while they work on getting rid of me. This challenge has been enormous, but my tenacity has helped us meet this obstacle head-on.  We’re working with a certain government agency to fight back. With the pain, anger, exhaustion, cost, and time invested, a favorable outcome is likely, but the fight has been draining. Why is this has been important?  Because no one should go through what I’ve gone through. My background is a perfect fit to jump into the advocacy world, helping others who are facing similar situations.  I’m looking sooooo forward to applying my experience to help others enjoy the protections of the ADA and Human Rights.

For all the reasons above, and those not mentioned, I’ve decided it’s time to jump into a couple forums/support groups. So here I am, seeking new perspectives from those who  share this disease.  I seek (and hope I can offer) strength and resilience. So thanks for the opportunity to be here with all of you!

Live long and prosper!

Peace,

Fred