Our approaches to managing MS may be different, and that’s OK

What works for me might not work for you, and vice versa

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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I spent a few of my years in the Army working as an instructor. It was never boring because I think I learned as much from teaching as my students did from being taught.

My students weren’t new to the Army. For the most part, they were my peers and teammates whom I’d be joining again once my teaching rotation was over. I also learned a lot from my fellow instructors, particularly, how to teach.

One lesson that has stayed with me occurred on a shooting range early in my tenure. I approached one of the more experienced instructors during a lull in the training to ask his advice about a student who, in my opinion, was doing a technique wrong. The instructor asked a few questions, including: “Is what he’s doing wrong because it’s unsafe or wrong because it’s not the way you do it?”

I had to admit it was the latter, and that exchange became a valuable life lesson. Today, I routinely ask myself the same question in situations that have nothing to do with Special Forces training. It certainly applies to multiple sclerosis (MS). In the 10 years since I was diagnosed, I have pondered it often.

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Multiple sclerosis is unique and requires personalized care

Different strokes for different folks

MS is an individualized disease. From the first symptom that’s noticed to where we are now, my MS isn’t the same as yours, and vice versa. That means that the ways we deal with our disease are different, too. Your method isn’t wrong just because it isn’t mine.

Quite a few prescription medications are available to manage MS. Ideally, the ones you and your doctor choose are the best choice for you. They may or may not be for me. This is also true for supplements, diets, and other things.

When it comes down to it, my opinion is that if it isn’t dangerous, if it makes you feel better, and if your doctor approves, then who am I to judge? If someone says that keeping a rock from their backyard in their pocket makes them feel more energetic, I might raise a skeptical eyebrow, but you do you.

Where I draw the line is when someone insists that only rocks from their backyard can cure MS and you can buy them and their accompanying rock book for only half your monthly income. If they don’t work, it’s because you need to buy more rocks or you just aren’t trying hard enough. To me, preying on desperation is a special kind of evil.

The other adaptations we use can be unique to each individual as well. For example, I use a long-handled dust pan to scoop up things I’ve dropped that are too flat or too small for my grabber tool. Don’t laugh, it works for me. It might or might not work for you, but that doesn’t make it wrong.

Our role as people with MS is much like my old role in the Army. We guide and support each other and realize that not everyone does things like us. Whether we’re older, younger, more experienced, or less experienced, we’re all peers and can learn from one another.


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

lj avatar

lj

long live long- handled dust pans, they have changed my life, thank you dear boy.

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Kathryn L Zerbi avatar

Kathryn L Zerbi

Thank you for this! it is one of the things that turns me off from group support. Especially when you have enough to deal with when it comes to normal people handing out ridiculous advice. My biggest struggle is weight and pain management and I recently had one of my dear friends tell me to just eat vegetable and tofu. His tone deaf one-size-fits-all approach is so destructive to anyone battling mutliple autoimmune issues at once and is just not helpful and just makes a person feel defeated like they can't meet anyone's expectations. Then to hear the snake-oil salespeeps and all the so called "experts" try to tell you they have the only cure can be so frustrating.

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Patricia Williams avatar

Patricia Williams

I feel you I have things I do that works for me. I try to make things easy for me I have ms and I tell people I do things my way because I know that it works well for me it may seem backwards to you but boo hoo it works.

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Debbi Spano avatar

Debbi Spano

Thank you for your comments. It is nice to hear someone be honest with their feelings. Please continue your column for this "older"MsS person needs the smile you put on my face. God bless and stay healthy.

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Tom A avatar

Tom A

My “style” has always been to dive into how bad or awful something might be, so as to try and avoid it, or at least not be taken unaware. (I’m talking about anything). I remember watching the videos mailed to me from the MS Society showing 3 cases of MS- one mild, one moderate, and one where the person dies in bed able only to move their pinky to communicate. This was 1994 a few years after my first symptom.

Yes Ben, we need to respect people’s differences. But if I were new to the MS game, I’d want to choose something for me that worked for you. That’s science. I’d want to feel confident about my choice, too.

As a former licensed Ph.D. psychologist trained with “normal” people, I can tell you one thing some people do is ignore bad info and avoid tough decisions. MS symptomology makes delay seem sometimes like a good idea. We try exercise and diet and climbing mountains and running marathons. However, MS is not the time for finding evidence that everything will be OK with little effort or risk and not to worry about it. Research is demonstrating that time is of the essence. What works today that may influence one’s future greatly, may not work tomorrow. So if you are a newbie, despite the many demands and time constraints of life in general, do take as much time as needed to figure this one out. This is not a bad case of the flu and it usually does not disappear permanently over time, even though it seems like it may. It comes back to haunt you particularly when you think that everything is OK. Your choice now might make all the difference in the world tomorrow. Read up and learn now. Watch out what you see on social media. Analyze what you read if you do look, particularly there. Ask your doctor questions. Switch quickly if her answers are insufficient. I say this as my leg fails to work well. I did what I could back in the day but am envious of the choices available now which are not available to me because I am NOT a newbie. Time IS of the essence.

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Dee Griffin avatar

Dee Griffin

Great learning, thanks!

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Merlene Cook avatar

Merlene Cook

Always enjoy your writings. After 55 years with MS, I have heard different advice. They mean well but sometimes you want to say "Enough". Out of despiration, I choose which advice I take. That is gives me back control. My experiences of their suggestions have lead to disappointment most times. You are very right that one size does not fit all when you journey with MS. All you can do is befriend it like a needy twin and respect the challenge of the day.

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