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Weekly Update: Embracing Life’s Journey with Humor and Grace

This week brought a touch of adventure and a sprinkle of excitement. On Friday, I ventured to the MS Center in Manhattan for a series of tests to determine if I qualify for a medicine trial. This trial is for a promising drug called Frexalimab. Over the course of six months, I’ll be visiting once a month for an infusion. Whether I receive the actual medication or a placebo will remain a mystery, but if I’m fortunate enough to be included, it could lead to a four-year commitment to the study.

The day was packed with tests—blood, urine, physical, ECG, mental health evaluations, and an MRI with and without contrast. By the end of our six-hour visit, my wife and I were running on fumes, our social batteries depleted to 10%. 

How do I feel about this journey? Well, let me start by saying that my current treatment, Ocrevus, hasn’t been the beacon of hope I envisioned. Limited to only two medications due to being JVC positive, this trial could be a game-changer for those of us with Secondary Progressive Multiple Sclerosis. I’ve been on the “O-juice” since 2022, and my symptoms continue to worsen. So, I’m more than willing to be a guinea pig for the greater good of the MS community. The risks? Blood clots and potential death, but I refuse to let fear dictate my life.

On a lighter note, my wife and I enjoyed a delightful date night, watching “Bad Boys” at the theater. It was an exciting outing, particularly because I got to show off my new wheelchair. The compliments it garnered made us feel our purchase was indeed a great one. However, we felt a bit out of touch with modern conveniences when we ordered our drinks and snacks through a kiosk instead of a human. It felt like navigating the self-checkout at the grocery store—we weren’t quite ready for it! And yes, I did manage to crash into the wall just once, but that’s progress, right?

I always say that when people see me cruising in my wheelchair, they react in one of three ways:

– They smile and look for ways to help.

– They stare, checking out my cool wheels.

– Or they see me walking with my hiking poles and can’t quite GET OUT THE WAY!!!

I’ll leave you with this thought: I often face hard days and nights, plagued by numerous health issues. But rather than being perpetually angry or frustrated, I wake up each day ready to see what new challenge wants to tango with me. I’m determined not to let MS ruin my day. Complaining is exhausting, and I choose to save my energy for better things. My complaints are often silent, with my beautiful wife being the only one who hears them. She would probably say I don’t complain much, and for that, I’m grateful.