Editor’s Note: Patient Worthy is honored to share this patient story, originally authored by Jeri Burtchell.
For the last month or so I’ve been trying to come to grips with my new reality. When insurance forced me to switch neurologists after 18 years, I was accepted into the Mayo Clinic MS program. While the treatment I received was stellar, sadly I came away from my first visit with a new diagnosis that has been confirmed with further testing.
I no longer have relapsing MS, but I have transitioned to SPMS or secondary progressive multiple sclerosis.
From what I’ve read it takes an average of 10-20 years for those with RMS to transition to SPMS—and not everyone will. What this means is I no longer have relapses but instead will have disability that progressively gets worse.
After 26 years of living with MS this should be easy for me to swallow. After all, I’m not new to MS. But the success I had in the fingolimod trial made me feel like I didn’t even have it anymore. I know that’s ridiculous because there isn’t a cure, but it’s just how I’ve dealt with it all this time.
Over the past 5 or 6 years I’ve fallen more, though, and gone from using one cane to two and now I use a rollator (wheeled walker) full time. All the while I was blaming my bad hip but even after the hip replacement in 2022, things kept getting worse instead of better.
As I continue to digest this news, I’m grieving, I guess. To realize things will never get better than they are right now, and most likely will get worse. My mind goes to places I don’t want to be, thinking about things like the struggles I already have with accessibility that able bodied people take for granted. And how that’s just going to get worse.
Simple things like living so close to the beach, yet not being able to get on it, send me to a dark place emotionally. And that’s not who I am. I like to think of myself as a happy person who has a positive attitude and doesn’t let my different abilities get in the way of living my life.
But a news story this morning that is so positive and exciting to share left me feeling very confused as my initial reaction was to cry —really bawl— about the fact that my favorite beach in St. Augustine is putting in an ADA-compliant wheelchair ramp.
So overcome with emotion about it that it took me off guard. Just the feeling of being seen and included instead of marginalized. I think that’s what it’s all about.
The ramp opens Memorial Day! Here’s the link to the story.
