The best lessons on MS come from the experience of people with MS

In the not-too-distant past, a friend shared a video clip from a competitive event with a few of us. One of the competitors had a shock of gray hair and was slowed by a noticeable limp. “Watch how smooth this guy is,” he said. As we all expressed our amazement at what turned into a winning performance, my friend added, “Always watch and learn from people like him. If there’s a better, easier way to do things, he’s found it.”

This viewing was a few years before my diagnosis of multiple sclerosis (MS), but not before the start of symptoms. Right-sided foot drop was among my first, so I was particularly interested in watching someone else with a limp work around it. In much the same way, after MS, I began learning from others who had lived with it longer.

I have MS mentors here on Multiple Sclerosis News Today and on the other blogs and forums I read. I’m not sure they think of themselves that way, or even know that I regard them as such. They may just feel like they’re managing a disease they didn’t ask for. Regardless, I still find myself learning from the experiences of these unwilling heroes.

For example, I’ve gained tremendously from reading the writings of fellow columnists Ed Tobias and John Connor, both of whom are significantly ol—, er, more experienced than me. I should really put more effort into telling them so.

(The more experienced part — not the other.)

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You don’t have to go it alone

It wasn’t always like this. At the beginning, my ego — I mean, perfectly healthy excess of self-esteem — might have misled me. At times I acted like I was the first person to ever have multiple sclerosis. I’ll be the first to say that my MS isn’t your MS, but there’s plenty of common ground. In the years since my diagnosis, I’ve gone from “I’ll figure this out myself” to realizing that I don’t always have to. I just wish my pride had allowed me to realize it sooner.

Don’t forget about other disabling conditions when looking for workarounds. Multiple sclerosis has unique features, but it’s not the only thing that can cause certain issues. For instance, I use compression gloves for my hand weakness, which I first learned about via a website for rheumatoid arthritis. I picked up a number of wheelchair tips and tricks from the para and quadriplegic community. I also recently discovered the wonders of slow cooking from my friend Halsey Blocher of SMA News Today.

If you’ve been reading my column for the past year, you’ve probably noticed that with my MS, I tend to learn things the hard way — and not right away. I hope I’m giving back to the MS community by being an example. Even if it’s a bad one.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.