Multiple sclerosis is unique and requires personalized care

How to keep learning about MS with knowledge you already have

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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I’ve always liked the phrase “go with what you know.” I suppose I understood it to mean “stick to what you’re good at” or simply, “stay in your lane.” Recently, though, I stumbled on a slightly different meaning that I like even better.

“Use knowledge you already have as a means to learn and understand new things.”

Of course, that’s from a website that has nothing at all to do with multiple sclerosis (MS). Regardless, it inspires me to keep learning about and trying to understand MS through knowledge I already have. That’s why so many of my examples are from my years in the military. It’s what I know best.

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Different factors to consider

When I trained as a U.S. Army Special Forces medic, we learned early on the protocols taught to civilian paramedics. These methods are among the best trauma life support techniques in the world, but are designed for a certain environment.

In this environment, the scene is secured as well as possible, bright light is provided as needed, and there is generally a dedicated means of transportation. The injuries are mostly blunt trauma, but no matter what is encountered, supplies are usually plentiful. Time is still the most important factor, but the goal is to deliver the patient to a higher level of care within an hour.

Combat trauma is different. The scene may be very unsecured. Lighting of any kind may not be feasible because it attracts unwanted attention. Transportation is whatever is available, including being carried over someone’s shoulder or dragged behind cover. Supplies are limited to what can be carried, injuries are unique to the situation, and time is extremely variable.

With those factors in mind, a different set of protocols was developed and taught. Rather than the golden standard of civilian paramedic training, the military introduced Tactical Combat Casualty Care (TCCC).

One set of methods or standards isn’t better than the other, and they actually overlap in many areas. The idea was to employ different techniques and tactics for a different situation to lead to a better outcome.

Have you guessed where I’m going with all of this rambling?

Multiple sclerosis is different. It’s different from any other disease and unique to the individual. The environment, wounds encountered, timeline, and scene are not the norm and can’t be addressed in a standard way.

No two diagnosis stories start or end the same. The symptoms that drove me to look for an answer are different than yours, as was the time it took to get an answer. Each of us has wounds (lesions) unique to this disease and in size and location. Our treatments and the providers who treat us are generally specific to MS. Even our various therapies — physical, occupational, speech, and others — must be tailored to the disease.

I’m at a loss as to a perfect set of protocols to care for our very imperfect disease. I don’t like being unique in this case, but it’s plain to see that we need unique tactics. Until a cure is found, we need variable protocols to care for our consistently inconsistent disease.

I tried to come up with an abbreviation like TCCC for multiple sclerosis care. Unfortunately, all my ideas either didn’t roll off the tongue well or spelled something vulgar. If you have an idea, please share in the comments below.


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

Stephsnie McIntyre avatar

Stephsnie McIntyre

Individualized Total Person Care. Unique Whole Person Care. Individualized Mind and Body Care. Individualized Disease, Mind and Body Care.
ITPC; UWPC; IMBC. IDMBC. But where would you use it?

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Benjamin Hofmeister avatar

Benjamin Hofmeister

All good, although IMBC made me think of imbecile and I'm trying really hard to not give that impression.

No idea where I'd use them. Maybe I was having a too severe case of the clevers.

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Betty Stoddard avatar

Betty Stoddard

First acronym that came to my mind was CT2MS, or Care Tailored to MS. Alternate could be CTMS, still Care Tailored to MS.

As I quickly paged down to offer this semi-clever, or maybe not-so-good, acronym, I had to wait. Drat & Phooey. I couldn't even recall the brain-storm I'd had a few inches above this comment section! We MSers are familiar with that "oh-my-word, what was I going to say", syndrome. Next step: Check for any duplicates or tasteless meanings in interest of accuracy.

Thanks for your articles, Ben. Read them regularly. I replied to one several week ago...and suddenly all I'd written was gone. Vanished. Maybe I'll respond again to that particular one. More thanks, Betty Stoddard, Raleigh, NC

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading Betty! I'm finding more and more that I have to write things down so I can recall them later. The problem is I have to predict what future me will understand. For instance, I keep notes for future columns on my phone. One entry was made at the grocery store and just reads "lady, getting jar off high shelf". I don't remember a lady. Was she reaching something for me? Being unhelpful? Did I ask for help. I don't have any bruises...did I overextend and drop something on me? Did I drop it on a lady? Past me needs to take better notes.

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Sue Pye avatar

Sue Pye

What a very interesting perspective. Without realising it, I think many of us are in Combat Care mode; in dealing with our issues and looking for solutions to achieve our goals. (I'm looking at you, pelvic floor exercises!) Whether it's attitude, diet, fitness, support, aids, etc., even with a challenging illness there are ways (protocols) to feel that we have some control. I'll call it TMSC - Tactical MS Care. Thanks! Sue

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Spot on Sue. I was diagnosed 9 years ago and retired from the Army 6 years ago and it only recently occurred to me.TMSC sounds good I actually do feel like I have to be tactical sometimes in order to get the best care possible.

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