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

There's great value in learning from others, a columnist writes

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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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.

Comments

Tracy McCooey avatar

Tracy McCooey

Ben,
Just wanted to let you know how much I enjoy your column. I read you live in Anniston. My husband and I spent a good portion of our lives in Montgomery, Alabama. I was diagnosed with MS in 1992. I am a retired Circuit Court judge and we relocated to Spearfish, South Dakota. The cold weather is much better for me!

Tracy

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Tracy and for the kind comment. I actually went to elementary school near here and came to the Anniston museum on school field trips. Then we moved away and I figured I'd never see it again. Years later I was asked to come teach and be the medic for a SF training facility. I said yes and asked where. They told me it was at a small facility outside of Anniston, AL and did I know where that was? So almost 20 years later I found myself right back here. 16 years after that, and I'm still here---guess I'll stay.

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Ed Tobias avatar

Ed Tobias

Thanks for the mention, Ben. But I AM old...coming up on 75 in August. But, old is good. Been there...done that has its advantages. If any of my "there's" or "that's" have helped you, my day has been made. - Ed

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Been there, done that ---- and you never seem to forget to pass it on to others.

Thank you!

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Marybeth avatar

Marybeth

Thanks great perspective and one I needed to hear today…🥰

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You are so welcome Marybeth!

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MADELINE l NEWTON avatar

MADELINE l NEWTON

really enjoyed your post ,oh so true ...we do and will always enjoy the fun facts that others post on learning to live and enjoying life for it is still out there to enjoy despite having MS..can and will slow us but not stop ...thank you ...

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