I was diagnosed with Multiple Sclerosis at 25 years old. It was hard enough coming to terms with having a lifelong chronic illness at such a young age, let alone think about progression. But I was ready to fight; and with my wife and son by my side, I never missed a doctor’s appointment.
I progressed quickly; it started with weak, numb legs. Not long after, it took my left eye; and now I spend most of my days in my wheelchair. It’s hard to prepare for progression. How do you know what it will look like? One of the most interesting features of this disease is that it affects everyone differently. There is no standard progression. It’s only after years of failed treatments and MRIs that confirm it’s progressive.
Even though I dreaded the thought of having to use a wheelchair in the beginning, I now enjoy the freedom it gives me to still explore the Pacific Northwest (or just the grocery store) with my family. I wish I would’ve “stepped up” and used one sooner, although it’s been eye opening to experience the shortcomings of accessibility standards.
Progressive MS isn’t new to my family; I grew up hearing stories from my grandmother about her father, who had progressive MS in the 1950s. Like me, he struggled to find anything that could slow the effects of MS. Genetics, am I right? He did leave some letters that have some treasures though.
“One very tangible result of the trial which has attempted to get the better of me has been a bit of ‘soul searching’ that, in my opinion, has paid off in rather rich dividends – dividends of increased friendships, greater tolerance of people, and an almost total abstinence of self-pity.”
I get those words on some real levels. At the end of the day, I am still going to have progressive MS, so I want to focus on having as much fun as possible. Whether it’s adventuring outside, playing video games with my son, snuggling our dogs, or watching funny movies with my wife, life always has something good for me. And on the days my MS gets a little more out of hand, I’ll still be out here vibin’ and making friends, even if I have to do it on wheels.
My great grandfather’s sentiments still inspire me to keep the conversation going, we’ve come so far – we can’t stop now! Especially for the future generation. My grandmother watched both her father and her grandson battle MS, and I hope my son doesn’t have to do the same.
Title Photo by Kennedy Crissinger www.kennedycrissinger.com
3 thoughts on “Progressive MS – A Family Journey”
All sounds familiar. Dxed in 2004. Secondary Progressive MS since 2012. Walker, wheelchair and power scooter. Where in Pacific NW. do you live? I am in Kirkland WA.
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Always good to hear from local warriors. We are located on the Kitsap peninsula.
Thanks to Eliz for leading me to you. I also hAve progressive MS. I’m probably twice your age (diagnosed at 48, now 53). My progression has been so fast it’s left my head spinning. I’ve been in desperate need of a little optimism. Hope maybe? Anyway. I’m a new wheelchair user and I suck at it. You’ve made me want to get over my fear and get out there more. Maybe some day. 🙂