Tag: green beret

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Background Life with multiple sclerosis

Pride & Practicality

I have literally texted this photo across the house to my wife when I needed help in the shower.

I have been struggling to write this for months. I know what I want to say, but I can’t get it down in writing in a way that makes sense…..not even to me. It’s not an uncomfortable, or even embarrassing topic. It’s not difficult for me to talk about, but it is difficult for me to put into words. Does that ever happen to anybody else?

I’m pretty sure I’ve mentioned before that I use a wheelchair. “Use” a wheelchair…….that somehow sounds better than, “confined to” a wheelchair, or even, “in” a wheelchair for some reason. Semantics aside, I do “use” one, because I can’t walk. I can stand for very short amounts of time if I have something sturdy to hold onto and I do have limited movement in my feet and legs, but I cannot take a single step. My hands and arms, torso, eyes……….ok, everything from head to toe, is affected to some degree by multiple sclerosis and I need help, both mechanical and personal, in order to get through every day.

I’m not telling you that to depress you, or (gag!) elicit pity, but to make a somewhat confusing (to me anyway), amateurish point about pride, dignity, and practicality.

Back when I was a student at the Special Forces medic course, we often joked that having to constantly be a “patient” for each other erased whatever sense of pride and dignity we might have had before. If you were in a more senior class and happened to see a newer class walking down one of the hallways, staring at the floor, not speaking to, or looking at each other, you knew that they had just passed the hurdle of prostate check day, testicular exam day, etc, and that their senses of pride/dignity had taken an abrupt jolt. You get over it, of course. Eventually, you have cut the clothes off all of your fellow classmates, have poked each of them with needles, gloved fingers, and all manner of uncomfortable tubes, and vice versa and what you once considered undignified, isn’t anymore. So what, if anything changed?

Here are the “book” definitions of pride and dignity.

pride/prīd/noun

1.a feeling of deep pleasure or satisfaction derived from one’s own achievements, the achievements of those with whom one is closely associated, or from qualities or possessions that are widely admired.

dig·ni·ty/ˈdiɡnədē/noun

1.the state or quality of being worthy of honor or respect.”a man of dignity and unbending principle”

By those definitions, I actually left the medic course with more of each than I started with. Did my concept, or definition of these things change, did I realize that my personal list of things that I once thought were beneath me, weren’t, or was it just my practical side showing through?

prac·ti·cal·i·ty/ˌpraktəˈkalədē/noun

1.the quality or state of being practical.

2.the aspects of a situation that involve the actual doing or experience of something rather than theories or ideas.

If that’s the case, does that mean that I’ve decided that something is undignified, but the practical thing is to do it anyway, or does my practicality decide certain things don’t belong in the undignified category and removes them from the list? The short answer is, I don’t know. If you do, chime in with a comment.

What I do know is that my pride and dignity feel intact, but………different(?) than they were before multiple sclerosis. Did they change, or did I change because of practicality?

For example, I can put my own shoes on, but it takes me 5-10 minutes and expends energy that I need for transfering to my wheelchair, the car, and so on. My wife can slip both shoes on in well under a minute, so especially when we have places to be, this is, by far, the practical thing to do. It’s not undignified, but having someone do something for me that I had done since childhood was tough at first. Since I snapped the words, “I can do it myself!”, more than once, it was probably my pride that needed to shift rather than dignity. Maybe that means pride changes while dignity doesn’t. Do I just confuse the two and practicality is what eventually separates them?

More often than not, I need help in the shower. Again, I can wash myself, but it’s way more practical, goes faster, uses less energy, etc, if I have help. My wife is my caregiver and takes great care of me. We’ve been married almost 13 years and have three kids together, so it’s a cinch to say that she’s seen me naked and/or vulnerable before. Why then is this still a difficult area to ask for, or accept help with? Is it that, “I can do it myself!”, pride rearing its head again, or is it dignity this time? Is that why being practical about it doesn’t negate it all the way? Does practicality only work on pride? Is it that I feel like there’s a big difference between asking for the 30 seconds it takes to put shoes on and a 30 minute shower, or because I (and/or my dignity) want to keep the difference between wife and caregiver in place?

Hmm, I got some of it down in writing, but feel like I barely scratched the surface. I feel like I understand a little more, but still don’t know anything. If you thought this column was going to have all the answers, get used to disappointment. I thought learning about the physiology of MS was going to be the hard part. Turns out, an “I don’t know” answer there is a lot easier to handle.

Categories
Life with multiple sclerosis

New Kitchen Appliances

Not my kitchen.
Image courtesy of geappliances.com

We had a small leak under the house that managed to spray a thin stream of water upward in just the right spot to soak a section of subfloor and buckle the overlying hardwood floor in our kitchen. This led to our kitchen floor being replaced, which meant that all the cabinets and appliances had to come out of the kitchen. That would have been bad enough, but since the majority of the bottom floor in our house is hardwood, nearly everything had to be moved out, including us, when they sanded and restained/finished all the hardwood for a nice uniform repair. The silver lining is, we got to make some changes to the kitchen, including improving accessibility. Among other things, these changes involved replacing our aging appliances and for the first time in our lives, we found ourselves researching and considering handicapped friendly appliance options.

Didn’t know there were such things? Don’t be ashamed. Until a month ago, neither did I. Many countries have laws and/or guidelines in place for something to be labled accessible. In the US, it’s the Americans With Disabilities Act, or ADA and apparently there are criteria that make appliances ADA compliant. Most of the criteria are things that I hadn’t considered and found myself saying things like, “Wow, that makes sense.” and, “Hmm, I never would have thought about that.” over and over when I looked up ADA compliant appliances.

I won’t try to copy verbatim the handicapped criteria or endorse any particular brand, since I’m too new at this to really have a valid opinion, but I will provide a link to the website that I found most useful when looking for what exactly makes an appliance handicapped accessible/ADA compliant.

(Full disclosure, none of my new appliances are this particular brand, but their site does a really good job explaining the criteria .)

https://www.geappliances.com/ge/ada-compliant/

I use a wheelchair full time and have significant arm and hand weakness. I’ve learned two things so far that are specific to my situation that I’ll pass on to anyone in a similar one. First, use the seatbelt, etc if your chair has one. An accessible oven/range minimizes any reaching you have to do, but there is still some bending and extending involved and being secured to your chair is super helpful, especially if you have balance issues. No, I haven’t fallen into the oven or burned myself yet and I don’t intend to either.

Second, consider your angles. My wheelchair elevates, so I can rise to the height needed so I don’t have to reach overhead and risk dropping things on myself. That may not be an option for you, but consider which angle you approach the stove, refrigerator, etc. For example, my strong side is my left, so I tend to angle that side into the appliance, rather than approach it head on, or from the right. There’s a little trial and error to get this right for the individual appliance or task.

I have always liked being in the kitchen, cooking and especially baking and, in all modesty, I was pretty good at it before multiple sclerosis started taking my abilities. I know my limitations and I grudgingly accept them, I guess, but that doesn’t mean I like them, or that I’m not constantly looking for ways around them. It’s nice that there are appliance options that make it easier to get around some of these limitations.

Categories
Background Life with multiple sclerosis

The Best Laid Plans

Photo from: https://www.southcom.mil/MEDIA/IMAGERY/igphoto/2001633599/

You may remember last August when I wrote a post about a multiple sclerosis lesson learned from an exercise with the 160th SOAR. Well, it turns out that there were at least two other lessons learned on a different night during that same multi-day exercise. In the interest of time, rather than rehashing all the links to the military specific terms, I’ll simply link back to the original post.

On this particular evening, my team, along with the others in the company would fast rope into a site on Santa Rosa Island, Florida. For those that don’t know, fast roping is where you lower a thick, polyester, rope from a hovering helicopter and slide down it like a fireman’s pole. Well, maybe not exactly like a fireman’s pole. The rope isn’t smooth and you pinch it between your feet rather than between your thighs, since the friction and resulting heat is better managed with the soles of your boots than with your crotch. I would think it would be obvious, but you also grab it tightly with your hands and that same friction and heat makes sturdy gloves an absolute necessity.

Photo from: https://www.marlowropes.com/product/marlow-fast-roping-gloves

Like all things that might get you broken, or worse, it is army doctrine to rehearse it before you do it live. For fast roping, this means 2 daylight and 2 night reheasals, each consisting of 1 iteration without equipment and 1 with. The plan was to hover and fast rope from about 10 feet, so that’s what we rehearshed.

I always wear gloves anyway and the oversized pair of thick leather ones over them made anything close to fine motor skills impossible. Besides that, they were a pain to strip off and stow quickly once I was on the ground, so I decided to do without them. My rationale was this; my regular working gloves had a nice thick palm of synthetic leather and it was only going to be a 10 foot slide, so the heat couldn’t possibly build up that much. I tested my theory twice during the rehearsals and though some heat got through, the thinner gloves seemed to work well. I congratulated myself on such a well thought out and tested plan and when it was time for the actual mission, I left the thick, clumsy gloves behind.

I was the fast rope master that night and when we got to our spot, the crew chief on the helicopter signalled me not to kick the rope out the door because something wasn’t right with our planned insertion point and we were heading to the alternate. When we were there, he gave me the go ahead to lower the rope out and start sending guys out. We were using a 60 foot rope and it seemed like there was a lot less of it on the white, gulf coast, sand below than there had been during rehearsals. No matter, I sent the guys, then grabbed the rope and went out last. Very quickly…..probably right after the 10 foot point of the slide, I realized we were a bit higher, (4 times higher as it turned out), and that the heat from sliding on the rope increased exponentially with each foot past 10 feet.

What I found out later was that the alternate insertion point was over loose sand rather than the paved intersection of the primary and the increase in height was to keep us all from getting completely engulfed by blowing sand. I didn’t know that then, but what I did discover quickly was that synthetic leather doesn’t protect like real leather, burned hands have less dexterity than those encumbered by thick, awkward gloves, and my thinner, cool guy, gloves were completely destroyed by the flaws in my best laid plan.

Multiple sclerosis, because of it’s inconsistent nature, defies even the most careful, (subjective…I know), plans too. The plans I made for an annoying limp didn’t work out for walking with a cane and likewise, the plans for life with a cane, or walker didn’t work out for a wheelchair. Like the example in my tale of woe above, the problems increase exponentially as the effects of MS get worse. Something as routine as going to the grocery store becomes multiple times more difficult to do with each new link in the worsening mobility chain. This is just one example. Others include getting dressed, taking a shower, making a meal, and on and on and on.

The other big lesson for those with MS is that I didn’t seek out the advice of more senior people. At the time of the incident above, I was considered a senior person (mostly by myself) and it was assumed that I knew what I was doing, so I didn’t ask and no one volunteered that I was about to make a really stupid mistake.

I’ve known I had MS for almost 8 years now. It’s progressed very quickly, but that’s still just a drop in the bucket for others out there and I should have asked them early on about my best laid plans. I’d like to think I know a lot about it, but there’s still so much to learn and sometimes I need other, wiser, people to tell me that I’m about to make a dumb mistake.

I hope I listen.

Categories
Life with multiple sclerosis

Walking Dreams

Photo: harshvardhanroy/Getty Images/iStockphoto

Multiple sclerosis is not very conducive to a good night’s sleep. Spacticity was my biggest problem until the baclofen pump relaxed my spasms, rigid muscles, and hyper-reflexivity. I was essentially a limp dishrag immediately after the pump implant, but the relief from spacticity and actually being able to sleep through the night was so amazing that even if I’d never improved after, (I did), it still would be worth it. 

I don’t mean to imply that spacticity was the only obstacle, just the biggest. I still have an MS bladder that defies even the best planning and occasionally, whatever the opposite of fatigue is, wakes me up at odd hours and keeps me awake.If MS could just be a little more considerate and schedule fatigue during evening hours only, that would be great. It is, however, anything but considerate and accommodating.  

There are a lot of perks of being able to sleep soundly again but the one I want to talk about today is dreaming. I dreamed when spacticity was at its worst, but very inconsistently and I rarely had a complete, undisturbed dream, or could remember my dreams in any sort of detail. Usually, when I dream now, (or pre-MS), I’m aware that I’m dreaming, but I can’t direct the action or otherwise control it………..so lucid? Not lucid? Lucid…ish? Meh, it doesn’t really matter. What does matter (to me, anyway) is that I sometimes dream about myself with MS. Do you?

Most of my dreams are of the…..normal(?) variety. Being late for school (even though I haven’t been to school in decades), being unprepared for a test, or a recurring dream of having an apartment in another city with important things in it that I’ve forgotten to pay the rent on, etc, etc. Like I said, most of the time I’m aware I’m dreaming but it’s like I’m watching it as a member of the audience, shouting out advice, or insisting that the main character would never do that, or let that happen. 

My multiple sclerosis dreams seem to come in three flavors. Sometimes I’m surprised by my disability, (what I was once). I’ll be behaving normally in the dream, walking, running, that sort of pre-MS stuff, when I’m somehow reminded that I shouldn’t be able to do that (maybe I hear myself shouting from the audience) and like Cinderella at the ball, I struggle back to my wheelchair before the clock strikes midnight. It’s a little odd that my wheelchair is even there in a walking dream, but such is the nature of my, “Surprise!!, you’re crippled.” dreams.

Sometimes I dream about myself having MS and being aware that I have it, (what I am now). I dream about myself in a wheelchair, being fatigued, or dealing with uncooperative limbs. I even dreamed recently about being in a small fishing boat in my wheelchair and yelling from the audience, “What a load of crap. How did you even get the chair on that boat? Is it even strapped down? Just wake up! This is completely unrealistic!”.

Occasionally, I dream of getting better, (what I want to happen). One dream that sticks in my mind is of me walking on a trail in the woods using two trekking poles. In the dream, I’m aware that I have MS, but am recovering somehow, (the dream is a little vague about the “how” part). I stumble on the trail and run a few steps to keep from falling and then keep running slowly and awkwardly, laughing almost hysterically at the return of an ability that had once been taken for granted. 

I know they’re just dreams and I treat them as such. Walking, much less running, may never be in the cards for me. As long as they keep it reasonably realistic most of the time, I’m ok with my dreams hoping for the future too. I mean, it’s my unspoken, subconscious hope after all, right?

Categories
Life with multiple sclerosis

MS Ego

© Stocklib / prazis

A couple posts ago I mentioned that, I had taught a little in the past, had learned a lot from teaching (mostly how much I didn’t know), and introduced you to the 33% rule. This week, I will try (in my clumsy, rambling way) to pass on another important lesson that I picked up as an instructor of elite soldiers; dealing with egos. That’s egos with an “s”, not just because there was more than one student, but because I have one to manage as well.

There are probably entire volumes devoted to ego, pride, arrogance, dignity, etc, the similarities and differences between them, and the fine line(s) that separate one from another. I won’t get into all that here since I doubt I understand it all myself and my opinions on the matter are exactly that. I will opine that there is a difference between being justifiably proud of an accomplishment and being egotistical. In my opinion, pride can be questioned, (I know what I know, but I don’t know everything and can always learn something new), while ego can’t.

The acronyms, (yes, I know the difference between an acronym and an abbreviation), for all the courses I helped teach began with the letter “S”, which stood for “Special”……..(there’s a crude joke there somewhere, but I’m going to be the bigger person). Special, or elite people tend to have pride in their accomplishments, but sometimes even the most justifiable pride, and/or self confidence can drift into ego territory.

Early on in my days as an instructor I went to the same senior instructor who introduced me to the 33% rule to ask his advice on how to convince a student that he wasn’t doing something the “right” way. He observed the student for a moment and then commented to me, “That guy is both fast and accurate, which is the end goal here. Is the way he reaches that goal unsafe, or is it just not the way you do it?”.

On the opposite side of the coin, I’d sometimes get a student who was putting rounds everywhere on the target except the middle and I’d make what I thought was a helpful suggestion, only to be met with, “I know what I’m doing! I’ve been shooting this way for longer than you’ve been in the Army!”.

This is where you want to say something like, “Well, it looks like you’ve been doing it wrong all those years, because you suck.”, but you don’t. Instead, you get another instructor to drop the same casual hint that you just did, but maybe in a different way, or you just say something along the lines of, “Chuck Norris does it like this.”.

This is the part of the post where I switch gears back to multiple sclerosis. I really do try to make it a smooth transition, but it’s hard sometimes and probably looks like I’m shifting without a clutch. In this post, what I’m trying to transition to is that while I wouldn’t lump it into the elite category (rare, sure, but not elite) it’s very possible to have an MS ego too……I know I do.

You’d think I’d know better, but apparently I don’t. I’ve known I had MS since 2014, but in that short time, I still sometimes think that the way I do things is the only way and I’m not open to alternate suggestions. For example, I’ve only been transferring myself from wheelchair to recliner, to car seat, and so on, for 10, or so months. There is only the slimmest of possibilities that I have the technique mastered, but I’ll be the first to say that this is the way I’ve always done it.

My ability changes by the hour, day, temperature, my temperment, etc, and it is never the same as someone else’s, so I can neither demand that someone do things my way, nor think that their way is going to work for me. I do tend to give more weight to the advice of other people with MS, but I have learned that if anyone insists that their way is the only way, then they’re probably selling something.

Sticking with the teaching theme; on the opposite side, our “instructors”, i.e. loved ones, caregivers, therapists, healthcare providers, etc, also have to recognize that we can both have MS egos. Is what I’m doing wrong because it’s unsafe, or because it’s not the way you’d do it? Sometimes, just having a different “instructor” tell you the same thing at a different time really does make a difference. I respect my neurologist because he never acts like he knows everything (he knows way more than I do) and he never pretends that MS is a one size fits all disease. I respect my physical therapists for the same reasons. And yes, my darling wife and caregiver I respect you too. I’m probably going to regret this, but there is a chance that you also know more than I do.

Oh, and to the lady at the grocery store who used to know someone with MS just like me and offered the unsolicted advice about “trying harder” and “mind over matter”. My “mind” is full of holes, so it does matter and in this case, I can safely say that no matter how long you’ve been doing it, your technique is wrong because you suck at it.

If you are looking for practical, realistic (but not always sunny and happy…because MS isn’t) talk about MS, join us over at Kurmudgeon’s Korner.

http://mskurmudgeonskorner.com/

It’s the greatest group you never wanted to join.

Categories
Background Life with multiple sclerosis

Two Sides

Image from defense.gov

A few years back…..(sigh)..ok, nearly two decades back, I was a student at the Special Forces medic course at Fort Bragg, North Carolina. As luck (well, my luck anyway) would have it, the field trauma portion took place during the winter months. In this section of the course, we were divided into small groups, and during each iteration, someone was the casualty, someone was the medic, someone was the medic’s helper and everyone else kind of stood around watching. You would stabilize the casualty at the scene then package and move him to a “field hospital”, where there was lots more equipment available and it was a whole ten degrees warmer than outside.

One fine day, there was a few inches of nice wet snow on the ground, with more falling. I was the medic and had treated my casualty under fire and moved him back to a covered position for more definitive care. I handed my helper a pair of shears and had him cut nearly all the casualty’s clothes off then rolled him onto a litter, covered him with a blanket (because I’m thoughtful like that), and continued to treat him in preparation for evac back to the tent.

When the first scoop of snow went down the back of my collar, it made me jump, but I figured it had fallen from a tree, so I ignored it and went on treating my patient, who was so into his role, he was even pretending to shiver. When the second scoop of snow started to slide down to the small of my back, I turned to see our instructor, holding a small shovel and glaring at me. He didn’t say anything, so I assumed he was just throwing a little added stress into the scenario and went back to work. In case you were wondering, a lump of snow sliding slowly down your spine to the top of your butt crack is a bit stressful. 

The third scoop of snow hit me in the back of the neck with such force that for a second I thought he’d thrown the shovel along with it. When I turned, he was right there. “You still don’t get it.”, he growled. He pointed at the other guys, including the casualty, “All of you, get to the tent and warm up. You!”, he poked me in the chest with the shovel, “take off everything but your boots”.

When I was standing there in the snow, wearing just my boots, he said, “You put your mostly naked patient on a mesh litter, three inches above the snow and only bothered to cover the top half of him with a blanket. If this was real, he’d have slipped into hypothermia and you’d have lost the fight before you even started. Now to help you remember, here’s what’s going to happen”.

It was a pretty good lesson. Almost twenty years later, I can distinctly remember running naked in the snow, weaving through the trees past each of the other small groups, shouting, “Two sides!! My patient has two sides”!!

 I may not have been known for my tender bedside manner, but none of my surviving patients can say that I ever let them get too cold.

The takeaway here, other than a cheap laugh at my humiliation, is that you and your multiple sclerosis have more than one side. You and your health care team (which you should be the head of, by the way) can’t neglect all your other sides to solely focus on MS. For example, I have high blood pressure and even though my MS making me more sedentary definitely contributes, I have to remember to look after that side of me. Likewise I can’t devote my complete focus to any one symptom, or aspect of my MS. Yes spacticity is my biggest and most annoying problem, but weak breathing muscles plus difficulty swallowing are sides of MS that shouldn’t be neglected.  

My patient is me and I have more than one side. You do too. I don’t suggest hiring someone to shovel snow down your back, but try not to forget it.

Categories
Life with multiple sclerosis

MSbidextrous

“Drawing Hands”, Litograph by M.C. Escher, 1948.

I am, by nature, right handed, or right hand dominant would be the better term, I guess, since I’ve almost always used both hands. At some point in my childhood, it occured to me that it was a bit odd for people to have one hand that did everything and one that just sort of hung around like an awkward kid waiting to get picked for a team.“Let’s see, we need another hand to balance out the body. We’ve already got one that writes, draws, throws, holds the silverware, swings a hammer, and so on. (Sigh) Come on over here kid. Welcome to the team, just stay over there out of the way and we’ll call you if we need a nail held or something”.

That’s not to imply that I ever used both hands equally; just that I made a conscious effort to employ my non-dominant one. For example, I never took the time to learn to write legibly with my left hand, (some would say I never did with my right one either), but I regularly ate, drank, opened doors, etc with it so as to keep it useful.

This came in handy (pun 100% intended) in the SFAUC instructor job I talked about last week. All the instructors had to know how to competently use their non-dominant hand because we regularly made students perform tasks with theirs. Should your dominant hand/arm be out of action, the time to figure out how to shoot, reload, put on a tourniquet, etc with your other one is not the moment when your life depends on it.

Since there were almost always a few left handed students in every class, all military weapons are made for right handers, and we were usually short on left handed instructors, I put some extra effort into learning to shoot (somewhat naturally and competently), left handed so that I could demonstrate for the lefties as well as the righties. I must have faked it pretty well, because a visiting instructor from another group pulled me aside one day and remarked, “You can shoot with either hand? I didn’t know you were amphibious.”.

Really, in the grand scheme of things, that wasn’t so bad. Over the years, I’ve been called ambiguous, ambivalent, and even androgenous by people impressed by the fact that I use my left hand for something other than a wedding ring holder, but the truth is, I am not ambidextrous.  

I would like to be. Multiple sclerosis hit my right side first and even though it eventually affected both sides, the right is definitely the most impaired. I am now MSbidextrous. Yes, I just made that up. No, I’m not going to try to copyright or trademark it. What I mean is….what I needed a new word for is MS forcing my non-dominant hand into a dominant role. Maybe dominant isn’t the right word. If my left hand wasn’t impaired at all and if I were truly ambidextrous, then “dominant” would fit the bill. Since neither of those is the case and instead, I’m forced by MS to primarily use the hand it impairs the least, I needed a more fitting word.

 The shoe’s on the other foot…….well actually, the glove’s on the other hand now. I’m mostly typing this left handed and having to make myself occasionally use what was once my dominant hand. I suppose I can’t really call it that anymore, but I guess I still think of myself as right handed even if MS has made me an awkward, unwilling lefty.                                                                               

Categories
Background Life with multiple sclerosis

The 33% Rule

I think I’ve mentioned before that I taught a little between trips overseas. Each Special Forces Group has a training detachment and I was assigned to my Group’s for a couple years, first as the detachment medic and later as an instructor for the various courses. If reality is the great humbler, then for me, anyway, teaching is a close second. This is probably because the most important thing I learned from being an instructor was how much I didn’t know. I learned a lot of other things by teaching, but the lesson I want to pass on to you today is what we called the 33% rule.

SFAUC was one of the courses I taught and one of the first blocks of instruction was a deliberate load process for both carbine and pistol. This is the slow and…….deliberate set of steps you’d take to not only ready your equipment, but check its functionality. When your life depends on it, is not the time to discover that something is loose, needs new batteries, etc. Even though it’s separate from the fast reload you’d do in the heat of the moment, all the motions are the same, giving you one last muscle memory rehearsal before showtime. 

I usually gave the safety brief first thing in the morning and since it was short and the deliberate load sequence was next, it was only natural that I continue straight to it. I would talk through the steps, giving a reason for each, because SF guys always seem to want to know why they’re doing something. Then I would demonstrate the process slowly, talking through each step again. Finally, I would demonstrate it at normal speed while just saying the steps. After that, we’d walk over to the firing line, the head instructor, over a PA system, would give the command to perform a deliberate load and begin calling out the steps, ……….and Every. Single. Student. Would. Do. Most. Of. It. Wrong.

The first time I observed this, I shook my head in utter confoundment and remarked to a more senior instructor, “I don’t understand. I just went over this five minutes ago. That guy did steps 1-3 right, but none of the rest, that one only got the last 3 right, and that one screwed up everything but the middle ”.

“Oh yeah”, he told me. “That’s the 33% rule. See, only 33% of the class is paying attention to you at any one time and it’s never the same 33% at the same time. Some only hear the first part, some only hear the last part and some only catch the middle ”.

“Wait, that’s only 99%”.

“Ah, yes, that 1% that’s left…….they weren’t listening to a word you said”.

Unbeknownst to me, training elite soldiers helped prepare me for a particularly frustrating part of MS; explaining it to others. No, my past experiences don’t help me explain it any better, but it’s some comfort to understand why a given person only absorbed 33% of my explanation. 

Come to think of it, it’s flattering, actually. I’ve only known I had MS since 2014 and I don’t begin to know or understand 100% of it. Throw in the individual variability of it; my MS is not the same as yours, as her’s…etc and it’s downright impressive that someone who asked, grasped even 33% of my rambling explanation. 

As for the remaining 1%, I’ve reached a point where I think I can gauge whether someone’s actually interested, or if they’re just conforming to the societal norm of saying something polite. I get why you feel that you should say something, or feel like it would be rude not to ask a question. Please understand though, if you ask a 1% question, you will get a 1% answer. 

“I’m fine”, “It’s fine”, “Oh, can’t complain”, etc, etc, etc

Categories
Life with multiple sclerosis

Over It

The crap gap……I’m over it…….the gap, I mean……because I just got my Ocrevus infusion. (Sigh) It’s not a very clever title, is it? Maybe there’s an MS lesion on the clever title comeupwither region of my cerebellum.

I had sort of planned to have a thrilling follow up to last week’s post, but Friday’s infusion, blood work, baclofen pump refill plus dosage increase, and flu shot was a smoother process than I could have imagined, or dared to hope for. There was about an hour Saturday evening when I thought to myself, “Mr. Hofmeister, (I’m very polite when I talk to myself), you might have overdone it.”, but I was wrong…..well, about what I’d overdone anyway. Looking back, that brief unwell feeling might have more to do with the amount of Halloween candy I stole from my children than from Friday’s events. Don’t misunderstand, it wasn’t guilt gnawing at me for claiming my rightful “daddy tax” on the kid’s loot. What gnawed on me was probably the sheer amount of it I consumed.

OK, back to Friday. After my wife drove me to the hospital, I went straight to the lab for the blood draw and per my suggestion, they started an IV (since I would need one for my infusion anyway), drew blood, flushed the line and sent me on my way. I’m going to pause here to note that most of the hospital staff were wearing Halloween costumes and the phlebotomists in the lab, with one exception, were all dressed as vampires because…..well, you get it. I got the exception, a sparkly blue unicorn who whisked me in and out of the lab and coordinated everything with the infusion clinic. Hindsight being what it is, I should have taken this as a sign for the rest of the day.

My neurologist, (who was dressed as a doctor), was waiting for me at the entrance to the infusion clinic and whisked me, (there was a lot of efficient whisking Friday), to a procedure room and refilled my baclofen pump so quickly that I didn’t get my phone out in time to take a dramatic needle in the belly picture for this post like I had planned on. Here’s a very non-dramatic, bandage on the belly picture instead.

He assessed my spacticity, checked my muscle tone, inquired about physical therapy, and upped my baclofen dosage by 10%. We chatted about recent MS research, my recent bout with Covid, and etc and then I was off to infusion.

Once there, I transferred to a recliner, wrapped up in my infusion afghan, was premedicated and then infused. I was cleared for the fast rate prior to the last infusion, so including the observation time after, I was done in about 3 1/2 hours. I got my flu shot at the clinic right beside the parking deck and we went home.

Having my arm hair pulled out when they removed the Tegaderm dressing over the IV site was literally the worst part of the entire day. So much for a thrilling, “here’s what happened to me”, post. I guess there’s always next time.

P.S. I’m not dissapointed in the least.

Categories
Life with multiple sclerosis

The Crappiest Gap

Photograph: RichSTOCK/Alamy

I’m having my 9th dose of Ocrevus this coming Friday (29 October) and since I’m a glutton for punishment, I’m having my baclofen pump refilled, the baclofen dose rate turned up a bit, a flu vaccination, and all my yearly bloodwork done. I figure that even though I’m cleared for the faster infusion rate, I’m still going to be sitting in the clinic for the better part of my day, so I might as well be efficient and get it all knocked out at once. I mean, I’m already getting one needle poke, what’s a couple more? OK, not my best logic and I may be singing a different tune after, but at least I’ll have some good material for next week’s post.

I’m actually looking forward to all this. Getting the bloodwork done ahead of my December GP appointment will save time then. The flu shot may not be 100% effective, but after my bout with Covid in early September, I’ll take even a 10% chance of not getting the flu. It’s past time for a baclofen pump adjustment. The goal has been to find a dose that tames the spacticity while still leaving enough muscle tone for my legs and lower torso to be useful. I let it go this time until the spacticity started to become a problem, so I’ll be glad for the relaxation. Finally, I’ve been on Ocrevus since it was approved by the FDA in 2017 and it seems to have my progression stabilized (no new brain or spinal lesions and no active demyelination), so naturally, I’d look forward to the continuation of therapy based on that assumption alone. However, there’s another reason and that reason is because this time around, I’m having an extra rough time with the “crap gap”.

Ocrevus is a twice yearly infusion that specifically targets the B cells in the immune system that the developers determined were responsible for demyelination. The “crap gap” is a space of time just before an infusion when the effects of the last one are wearing off and you start having a return of your old, pre-Ocrevus symptoms……ie, you feel like crap. I have no idea how medically/scientifically factual this is, but patients on both Ocrevus and its sister drug Rituxan report a period of increased symptoms 2-4 weeks prior to an infusion.

Experiences seem to vary, both in duration and intensity. Some of my gaps have been worse than others, but all have been noticeable. I usually start to feel a little extra fatigued about 2 weeks before an infusion. My last infusion in April was delayed by 2 weeks so as to not interfere with my 2 rounds of Covid vaccine, but even with 4 total weeks of gap, I don’t recall it being particularly noteworthy when compared to others. My pet theory (which is just that) is that my immune system was too busy reacting to the vaccine and building antibodies to put a lot of effort into pestering me for being late with my infusion.

This infusion has also been delayed by 2 weeks due to scheduling conflicts, but this time, I’m really feeling the gap. Extra fatigue, brain fog, uncooperative hands, arms, and legs, foggy, double vision, and just overall crappiness. If I had the wherewithal, my pet theory this time would be that the extra spacticity resulting from not having high enough baclofen levels was a big contributor. (hmm, it appears I have the wherewithal)

Regardless, this is my most memorable “crap gap” to date. Maybe I’ll start referring to it by a title worthy of it; the “crap gully”, the “crap ravine”, the “crap canyon”…….Ok, now I’m just being over dramatic.

I’ll have a good infusion/pump refill/blood draw/flu vaccine report next week. Stay tuned.