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.
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.
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.
In last week’s post, I talked about a new magazine being a fresh reminder of my disability and how it was something of a minor reset of the grief cycle. Fortunately it was pretty minor and I recovered quickly. My recovery probably had very little to do with my own sense of mental fortitude and more to do with a mind occupying family trip to Legoland Florida and Disney World. It was fall break for the kids and after a character building, 8 hour, family road trip, we arrived at the Legoland hotel/resort. Since I might have been a little over dramatic about the magazine thing and because God has a sense of humor, this is what was waiting for me in the pirate ship display outside the hotel.
That nearly life-size buccaneer fosters a sense of inclusivity and reassures visitors with all sorts of disabilities as to the accessibility of both park and hotel, but after 2 days of rolling around and transferring on and off rides, I decided that he is a multiple sclerosis icon. The wheelchair for his mobility issues is obvious, so I won’t dwell on it, but follow my head to toe review of the MS pirate and see if you agree with my assessment.
First, he has his trusty hat because a little shade goes a long way in the battle against heat. It also helps shield light sensitive eyes and when hands are too clumsy and uncooperative for any proper brushing and styling of your hair, hiding it under a hat is the next best thing.
Next, he’s opted for an eye patch to deal with double vision rather than the close one eye method. “Yarrrr, I’m not winkin’ at ye. I’m just makin’ sure ya ain’t twins”.
Keeping one eye tightly closed can pull your mouth into the classic MS snarl….or sneer, but since he’s probably got his eye open under the patch, his snarl is either due to a facial muscle spasm, or some good old MS attitude.
He’s unshaven because some days MS and a razor just don’t mix. You can have a little scruff, or you can look like you lost a fight with a wildcat, your choice. That goes for whatever body part you shave. The MS pirate might have had stubbly legs, but I didn’t check because I respect his privacy.
Moving on, he’s wearing a gait belt over his clothes. We found this to be almost indispensable for transfers in the park and when we weren’t using it to help move me on and off rides, we secured it around my legs to keep them together when fatigue and baclofen caused me to do the MS spread.
Speaking of clothes, his are scrunched up because sitting and shifting in a wheelchair for several hours does that. We can’t see it, but I bet there’s a bare patch of lower back/butt showing where he’s either shifted down and hiked up his shirt, or scooted back and moved his pants down.
One of his hands is curled by spacticity into a semi useful hook while the other, more capable one is wielding an item not intended for it, as a reacher, back scratcher, shoe horn, etc. The proper tool is elsewhere because it’s a wheelchair, not a Swiss army knife and while necessity may be the mother of invention, disability is its irresponsible uncle.
Finally, even though they’re not my thing, his knee high boots are practical slip ons so he doesn’t use a quarter of the day’s energy trying to put on real footwear. I’ll bet there’s knee high compression socks under them too. Those, unfortunately, are my thing.
Here’s my theme park ensemble.
In hindsight, it is October so I could have gotten away with dressing like a pirate. I think he might have a better sense of MS fashion than I do anyway.
Electric wheelchair convenience, illustration on chalkboard
I recently joined a new (to me) disabled veteran’s organization, and received an issue of their quarterly magazine in the mail last week. As I probably should have seen coming, the magazine is full of disabled veterans. There are pictures of disabled vets in wheelchairs involved in a variety of sports, there are pictures of vets in wheelchairs working at different jobs, or lobbying to change or update laws regarding people with disabilities. There’s even advertising geared towards the handicapped with ads for adaptive clothing, exercise gear, and wheelchair accessories, some of which, I have to admit, are pretty cool. Still, something about getting a disabled magazine was bothersome; no…. depressing really.
Don’t get me wrong, it’s not as though I was unaware I was disabled until this magazine brought it to my attention. I may be far too grumpy to be one of the smiling people in the pictures, but I am very aware that I also use a wheelchair. I actually have 3 wheelchairs to be aware of; my primary, power chair, a manual, and a pretty awesome, all terrain one with tank tracks instead of wheels. The power chair is parked right beside the recliner I’m sitting in at this exact moment. If I wanted to go anywhere, I’d have to transfer into it. Even if I were to sit here for the rest of the day, I would have to move it in order to see the entire TV screen, so I can’t be in denial as to its existence and/or depressed by my dependency on it………..,or can I ?
Image from psycom.net
Have you ever heard of the Kubler-Ross 5 stages of grief; Denial, Anger, Bargaining, Depression, and Acceptance? You probably have, but did you know that the stages are a nonlinear cycle? As many times as I learned about this process in college, etc, I apparently didn’t grasp that part. I guess I always thought of it as an orderly checklist, “Ok, I’m done with denial. What’s next? Oh, it’s time to be angry now.”, or, ”Whew! I’ve finally gone from depression to acceptance. Depression sucks and I am so glad I won’t have to do that again”.
Yeah, yeah, you already knew the stages don’t necessarily have to be in that order, although, if they weren’t, they wouldn’t make the cool acronym DABDA. You probably already knew that you can be in multiple stages at one time, and that nothing says you can’t go through a stage more than once, right? Well, I didn’t, or I did and forgot it, or maybe I’m just now grasping the core concept of “nonlinear”, but this is my lightbulb moment, so let me have it.
I’ve denied (how many times do you have to fall before you admit somethings wrong?) I’ve been angry (…um…a lot?…I don’t have anything witty for this), I’ve bargained (If I can just get back to using my rollator, I’m going to do….), I’ve been depressed (also a lot, because multiple sclerosis is depressing), and I’ve accepted (so, so many things that I didn’t want to and never thought I’d have to). I’ve repeated the cycle so many times since I was diagnosed that you’d think a little melancholy over a disabled magazine taking the place of the abled magazines that used to occupy my side table wouldn’t faze me, but it does. Apparently, getting a magazine for disabled veterans was a fresh reminder that I am one and it tossed me right back into the denial and depression steps of the cycle.
I suppose, when I’m ready, I’ll move to the step of accepting this “new normal”, just like I eventually accepted all the “new normals” each time the goal posts moved. It helps to know that accepting doesn’t mean liking, finding the “silver lining”, embracing, or otherwise being happy about. It might be the final step in the cycle, but accepting is still part of grieving.
Please don’t misunderstand. I am genuinely happy to be loved and taken care of by my family. We are so blessed that all our needs are met and I am very fortunate to be home with them instead of the alternative. I am grateful to have the tools available that allow me to participate in my own life, so I guess I’m grateful for and accepting of my wheelchair, but I refuse to be grateful or happy that MS put me in one.
I guess that’s another example of a multiple sclerosis paradox. I’m grateful that there’s an alternative to crawling across the floor, but I’m not grateful that MS took away my ability to walk.
Maybe I should publish my own magazine. I wonder if the name, “Grudgingly Disabled”, is already taken?
“Be sure to pick up your copy of next month’s “Grudgingly Disabled”. Articles include: 10 things to say to people who tell you that ‘you don’t look sick’ and MS support groups; how to love the camaraderie while hating that you were ever qualified to join one”.
Then again, it probably wouldn’t attract (m)any advertisers so it would be really expensive to publish, not to mention, a lot of hard work. I don’t really care for either of those things, so maybe I should just start a snarky, lazily written blog instead.
Still from: Verbinski, G. (2002). The Ring. DreamWorks Distribution.
Last week, I wrote about nicknames and it brought someone to mind. I try not to use anyone’s real name here out of respect and also because I might be telling about an event they’d just as soon not be associated with, but in this case, I’m pretty sure this person’s first name was Ted. He was one of the cadre at a sub-course within the long and involved Special Forces Qualification Course and was simply known as “Evil Ted”. If the other cadre introduced him as Sergeant so and so, I don’t recall, because I think they referred to him as Evil Ted too, as in, “Go change into your PT (physical training) clothes gentlemen. Evil Ted will be waiting for you at the combatives pit for hand to hand training and character building.”, (nothing builds character quite like having your head in another man’s armpit for an hour.)
Now, there are probably different degrees, but Ted wasn’t actually evil. Even the one occasion that comes to mind now could be better described as…… playfully cruel. It happened like this…..
Evenings at that particular part of the Qualification Course were pretty laid back. There were four or five small barracks with a group of students, a sleeping area, and a classroom in each one. Between dinner and lights out, you could pretty much do as you pleased, including watching movies on the TV in the classroom section. Each building had its own set of cadre for the day’s activity with one assigned to stay in the compound each night. Evil Ted was an instructor for the small group in the building next to mine and on the night he stayed, he brought in a recently released on video, copy of “The Ring” for his guys to watch. For reasons that can best be described as “mean spirited”, he didn’t start it until after lights out and by the time they finished the movie, it was a very dark and slightly foggy, midnight. He then told his guys that since they were all wide awake from adrenaline, they should all go outside and work it out of their system in order to sleep that night. They did lunges and the like in the compound’s parking lot for a few minutes and then moved over to the obstacle course right next to the compound where he put his guys in the tunnel.
A quick bit of background is necessary here. The obstacle course I’m referring to is the one used for Special Forces selection and has a number of high obstacles to weed out candidates with a fear of heights and the longest, darkest, narrowest, tunnel system in existence, to weed out candidates who are…….normal and sane. It has sections big enough to crawl on hands and knees, sections where you have to crawl on your belly, twists, turns, and chimneys, and can be configured with different exit points, one of which was through a manhole in our compound’s parking lot, which was the one Ted set up for his guys. Ok back to the story….
From start to finish would take about 10-15 minutes, so after the last of his students entered the tunnel, Evil Ted raced to the building I was in, woke us all up, and filled us in on what was happening. He quickly picked one guy, had him strip to just his shorts, wet him down with a hose outside, and had him crawl down into the exit and lay in the tunnel while the rest of us stood in the parking lot, waiting in…..well, I guess “horrified fascination” sums it up nicely.
Now, I’m prone to exaggeration and perhaps a little embellishment from time to time, but in the seconds after the first man in that tunnel, (no doubt already seeing the dim circle of light from the exit), stretched out his hand and touched that cold wet body, it felt like the earth shook a little. There was an eerie moan from the tunnel, sort of like the muffled shriek of a distant train and guys began to pop out of exits all over the obstacle course. Two even popped out at the entrance point which might be the most incredible feat of the night since they not only covered the entire distance in about 30 seconds, but they either did it in reverse, or were somehow able to turn themselves around in the narrow confines of the tunnel.
Verbinski, G. (2002). The Ring. DreamWorks Distribution.
That was the only borderline evil thing Ted did. He was probably harder on us than any of the other cadre, but it seemed very important to him to let us know he was one of us. For example, if he dropped the class for pushups, etc, he did them with everyone. It’s hard to call someone “Evil” for having you do lunges around the compound if he’s leading the lunge parade.
In the MS community, people say, “You have to get it to ‘get’ it”, and as much as I don’t like cutesy sayings and cliches, I tend to agree. My neurologist is an amazing MS specialist and professor at a teaching hospital. He, no doubt, has forgotten more about it than I’ll ever learn, but he doesn’t have multiple sclerosis. He can describe, in as much detail as I can handle, the physiological, biochemical, and biomechanical processes behind nearly every one of my symptoms and can even sympathize with my difficulties, but he can’t empathize because he isn’t one of us. Harsh? Maybe, but I think he’d agree.
In an interview with a combat veteran regarding the difficulty of talking about his experiences, Dr. David Grossman quotes him as saying something along the lines of; it’s like going to a nursing home and asking a resident if they’ve ever wet their pants. Maybe they have, maybe they don’t even mind talking about it, but only with someone else who has wet their pants too. Someone who can empathize.
I think that’s why I’m still a little bitter at my first support groups. I had hard questions and only wanted answers from someone in the same situation. Maybe I’m being too hard on them. After all, as I’m fond of saying, MS isn’t a one size fits all disease, but I’m also fond of asking, “Why didn’t anyone tell me ______?”.
Be your own advocate and maybe just as importantly, find someone, or several someones, who don’t mind talking about the hard stuff because they’re going through it with you.
Don’t traumatize them, but be someone’s “Evil Ted” of multiple sclerosis.
I met my wife while I was teaching at the Group operations detachment and one night, early in our relationship, we were at a party full of……well, I guess “my kind” is the best way to put it. We had mingled separately for a bit and when we found ourselves together again, she had questions.
“See that guy over there…the stocky one? What’s his real name? The other guys called him ‘Lunchbox’ and come to think of it, he may have even introduced himself that way”.
“Oh that’s Paul*. ‘Lunchbox’ is his callsign on his team’s internal radio network and also his nickname. He’s been called it so often by the guys here, it probably didn’t occur to him to introduce himself by his actual name”.
“Ok, how about that guy he’s talking to right now? Everyone calls him ‘Dirty Steve*’. That seems kind of mean. Why do they call him that”?
“Oh, because he’s dirty”.
“Like unwashed, or corrupt”?
“Hmmm, it could actually be a bit of both, but more the unwashed part I guess. He looks all groomed and clean cut now, but you have to imagine him with a horribly unkempt beard and a lip full of Copenhagen snuff. Half the guys here are dipping tobacco, but you wouldn’t know it unless you actually saw them pull out a can in front of you and put a pinch in their mouth. When Steve does it, it looks like he grabbed half the can and threw it at himself from arms length. He also can’t seem to aim or project when he spits, so there was usually tobacco juice dripping from his mustache and/or radio microphone”.
“Ok, stop (gag), I get it”.
“Did you meet ‘Crazy Bill*’? We call him that because……”.
“I did and I figured that one out by myself. What about that guy”?
“Hmm, he’s been drinking, so this probably isn’t a good time to introduce you to ‘Sleazy’”.
“What’s your callsign”?
“Oh, who remembers? I’m sure it was something awesome though”.
Odds are you didn’t choose your own (real) name. Initially, anyway, someone else decided what noises people should make to get your attention. You can, however, legally change it, or insist on going by your middle name, etc. Nicknames and especially team callsigns are also not chosen by you and in general, are nothing you’d ever choose. The difference is, they can’t be changed, just exchanged for something that may or may not be an upgrade.
I didn’t choose to get multiple sclerosis and wouldn’t have chosen it if I’d been given the option. Like a callsign/nickname, I may have done something that contributed to being stuck with it, but who knows? I do know that I can’t change it. Time and innovation will tell if I get to upgrade it.
*I didn’t use anyone’s real name, so as to protect the innocent.
From the US Dept of Defense https://www.defense.gov/Explore/Inside-DOD/Blog/Article/2062418/airborne-school-what-its-really-like-learning-to-jump/
Given that I have primary progressive multiple sclerosis, my genetics probably aren’t all that great, but there are a few perks, one of which is my bone density. I sink like a rock in water but have never broken anything, despite all my clumsiness and mishaps. Well, I have broken my nose 3 times but that hardly counts. I wish I had a good story or 3 to go along with those incidents, but when I say, “I” broke my nose, I mean that I was the responsible party each time. I should probably make up something involving a fight, a daring rescue, or something of that sort, but there are just too many witnesses to dispute my claims.
Actually, come to think of it, my good bone density is a mixed blessing at best. I like the water and enjoy being in it, but it might be nice to be able to float. I am proud to have never broken a bone, but something’s got to give, so instead, I ended up with 2 knee surgeries, an ankle reconstruction, have a bulging disc in my neck, and have dislocated both shoulders, the right one, several times. Even though my left shoulder was only dislocated once, it is the more memorable experience because of how it happened.
When I was a young Ranger, we were doing an airfield seizure exercise at Cecil Field in Florida and while jumping in late one night my enormous watch (I like big, dumb, gadgety watches*) became tangled in the suspension lines of my parachute. When I landed, my attention went to my trapped left arm and instead of activating a canopy release assembly and deflating my chute, I started to unwrap the lines from my wrist. Unfortunately, the wind picked that moment to gust and instead of dragging me across the ground by my harness, my parachute stretched out the suspension lines wrapped around my wrist, extended my arm, and slowly pulled my shoulder out of socket.
For years, that was my 10 when asked to describe my pain on a scale from 1 to 10 with 10 being the worst pain I’d ever felt. Later on when I first dislocated my other shoulder, it happened quickly and before it popped back into place, there was a moment when I marveled at how little it hurt compared to that other incident. I suppose there’s a lot of differing factors that went into these two experiences but the general mechanism of injury was the same, something tugging me by the wrist until my shoulder dislocated, so why the big difference in the pain levels? My personal theory is that it was the mental aspect that made the difference. In one situation, I was surprised, with no time to react or resist and in the other, I knew what was about to happen, tried to stop it from happening, but had to watch it slowly happen anyway. Now that I think of it, that would have hurt me if I’d watched it happen to someone else, so I’m sure the mental factor made up a lot of, if not the majority of the difference.
MS is like that………..What, too abrupt of a segue? This is a multiple sclerosis blog, so you knew I’d eventually make some sort of comparison, right?
Like I was saying, MS is like that. Don’t misunderstand, it would still be bad (not to mention, really confusing) if I suddenly woke up like this one day, but having it slowly happen while I watch, knowing what’s happening, but powerless to stop it, feels worse somehow. For me, the parachute isn’t pulling anymore. No new lesions and no active ones in 5 years (Ocrevus?), but with no way to heal the damage (remyelinate), those demyelinated areas eventually die, and the disability continues to progress, even if the disease doesn’t.
The parachute isn’t pulling anymore, but the shoulder won’t pop back in. Great….now I’ve depressed myself.
Come on remyelination therapy.
*My home page picture was taken about 12 years after the events of this story. Note the big, gadgety watch. Joke’s on you parachute, I didn’t learn anything.
I learned an important lesson from a Marine once. No, it wasn’t which color crayon tasted the best, or whether or not one should take the paper off before eating said crayon, it was a simple acronym, a set of principles by which he lived his life. It impressed me to the point that I commited it to memory, adopted it as my own, and will now share it with you.
It’s S K A T E:
S tay out of the limelight
K eep a low profile
A void volunteering
T ake your time
E ntertain yourself
If you’re in the military and find yourself at that in-between rank, where you’re not responsible for, or in charge of anyone or anything, that’s not a bad philosophy to have and as much as I hate to give credit to a Marine’s philosophy (sigh), it’s a pretty good one for MS too.
S taying out of the limelight can be tough when you’re disabled, but you’re still you and don’t have to be upstaged by it. Friends and family will treat you like you, but you have to let them know that it’s ok…… and sometimes, how.
K eeping a low profile can be difficult for the handicapped. Especially when you’re using a wheelchair or another mobility aid, or parked in a handicapped spot. This may seem the opposite of keeping a low profile, but the trick is getting people to see you and not the handicap. When you figure out how to do that with strangers, please let me know, because I haven’t.
A voiding volunteering is crucial to conserving your ration of energy for the day. Mine isn’t really, but if your MS is invisible, I realize that this can be awkward for you and hard to understand for those who wonder why. Some will never understand and it’s not like you can wear a sign or go through the exhausting process of explaining every time, why you can’t commit to Monday what you don’t know you’ll have the energy to do on Friday.
T aking your time was never as important as it is with MS. You can still do a lot of the same things you once did, but if you actually want to complete them then you have to pace yourself. Do one task in stages, or do two things you once did in one day, on separate days.
E ntertaining yourself is vital to your mental and physical well being. No, really. Your “outlets” might have to change with your disability (mine sure have), but you still need them, even if you have to learn new ones.
In an earlier post, I mentioned that I had a baclofen pump, so I thought I’d tell you a bit about it. A word of warning, this is going to be a long one. I’ll try to condense it as best I can, but there’s no way to tell you about the pump without telling you why I made the decision to have one implanted in the first place.
Of all the symptoms of MS that I’ve ever dealt with, spacticity was the worst. The National Multiple Sclerosis Society has this to say:
Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs. Spasticity may also produce feelings of pain or tightness in and around joints, and can cause low back pain. Although spasticity can occur in any limb, it is much more common in the legs.
Mine was pretty severe. I know this is an old depiction of the effects of tetanus and I’m not trying to compare the two, but it’s a fairly accurate depiction of what a bad moment with spacticity was like.
I took baclofen (a muscle relaxer) in pill form for a few years, but apparently I’m a lightweight and eventually I reached a point where the largest dose I could handle without falling asleep or staring at the wall and drooling wasn’t having an effect on my spacticity. After talking it over with my neurologist and a successful trial, I had an intrathecal baclofen pump implanted. This hockey puck size pump is implanted under the skin about 6 inches right of my belly button, and has a small catheter that goes around under my skin and is inserted into my spine between the L3-L4 vertebrae. From there it goes up to about the T-10 level and delivers a dose of baclofen straight to my spinal canal. Right now the daily dose is set at 64 micrograms whereas my highest oral dose was 50 milligrams. After absorption through my digestive system and crossing the blood brain barrier, who knows how much was even getting to my central nervous system? ( I’m sure there’s a way to figure that out, but I’m far too lazy) With only about a 100th of that dose going directly where it’s needed, I have all the desired effects, with no noticeable side effects.
At its worst, something would trigger it, a stretch, clothing brushing against me, a drop of water, or puff of wind, etc and I would involuntarily extend my legs, feet crossed over each other, joints at the painfull point of hyperextension, back and neck arched, and hands curled into fists with arms pulled in tight. If I was in a chair and not reclined, this would send me sliding out like an uncomfortable burial at sea. That was most common, but sometimes the opposite muscle group would dominate and my legs would draw up and I’d be thrown forward by clenched abdominal muscles. Sometimes my arms and hands would lock out straight and sometimes if it happened mid yawn, my jaw would spasm shut on my tongue or lip. If I could only have one phrase to describe the most frustrating part of MS for me, that phrase would be, “consistently inconsistent”.
In the years leading up to the pump, I became unknowingly (well maybe tacitly acceptingly) more and more dependent on the spacticity to “walk” and hold me upright. Imagine tottering around on stilts to get an idea what that was like. I would lever myself upright and swing my stiff legs out in little semi circles rather than flex them at the hip and knee to go forward, or pivot and “moonwalk” backwards into a desired position. My constantly rigid abdomen made going to the bathroom……interesting. The constant clenching affected both the act itself and the motility of my digestive and urinary tracts, resulting in a variety of incontinence issues.
I’ve got to pick on the VA for a second. They provided adult diapers and shipped them to my house in discrete, large, boxes, wrapped in black plastic……….10 at a time. The delivery driver had to make 2 trips with a hand truck to get them all in a giant tower on my front porch. There are only a couple things that are shipped “discreetly” like that, so I’m sure my neighbors either thought I was soiling myself 10 times a day, every day, for 6 months at a time, or had entered the adult toy industry in a big way.
(Experiences with the VA vary. I’m poking a little fun at them, but I’ve had a mainly positive experience. That’s another post for another time)
When the pump took effect, all the stiffness in my legs and abdomen (everything below T-10 level) was gone and without it, I went completely limp. Keep in mind, this is my experience and might have been different if I’d had the pump put in sooner, my spacticity hadn’t been so severe, I hadn’t been willing to rely on the spacticity instead of looking for an alternate solution, etc. Regardless, I spent close to a month in bed, having to rely completely on my wife to pull me to a sitting position and slide me to my wheelchair or a toilet/shower chair with a slide board. If she wasn’t a nurse with lots of experience moving patients, we would have needed help with my post op care. My first trip to the VA after the surgery had to be via ambulance because without being strapped to it, I couldn’t sit in my wheelchair very long and couldn’t begin to transfer into a vehicle.
Everything above T-10, arms, hands, and so on, is unaffected, but putting the catheter high enough to relax them wasn’t an option. The way it was explained to me was that it would have to be a cervical placement to relax my arms and there are other nerves that exit the cervical spine that are important for things like breathing, so relaxing them is less than ideal. Also, the dose to relax my legs and torso is higher than for arms, so if the pump was programmed for a dose high enough for those muscle groups, my arms would be completely limp.
I’m still experiencing incontinence but it’s different. Now instead of clenched muscles being the problem, they’re relaxed and instead of urgency because of too much pressure, there’s urgency because I have to relearn what to flex to hold it. The good news is I’m a guy so keeping a portable urinal by my recliner or bed is a convenient option.
With effort and therapy, I am slowly trying to activate muscles that haven’t been used (voluntarily) in years. Short of forming new neural pathways (neuroplasticity) to replace any that are gone, I may never. I’m being as realistic as I dare. My goal right now is to eventually stand and be able to take a shuffling step with my old walker/rollator. When and if I get there, I’ll set a new goal. If I never reach that goal, just the relaxation, comfort, and ability to sleep through the night that the baclofen pump gives me is worth it.
That was the good; now for the bad. I have a hockey puck sized metal pump inside me with a catheter that goes inside and up my spinal canal. In case you missed it, there’s a surgery involved, so there’s risks involved. Here’s mine (yes my intestines were full of gas, etc that day).
See that port in the middle? Every so often the pump has to be refilled via a needle, like this.
It looks intimidating, but really it’s not a big deal. The pump is right under the skin so the needle just breaks it and clicks into the port. In the picture, the needle looks like it’s standing up in me…but it’s not in “me”. If you absolutely can’t stand needles, you need to consider this. The battery has a certain lifespan and when it’s up, the whole pump has to be replaced, so this is a lifetime commitment to regular surgeries if you decide to continue the therapy. The pump also has to be programmed until the correct therapeutic dose is reached. You need enough tone for your muscles to be useful, but not so much for the spacticity to return. It’s been about 10 months since I had mine put in and we’re still fine tuning. Programming is done with a tablet and an attached sensor that is placed on your skin over the pump. None of this is really bad, I’m just trying to make the point that there’s a lot to consider and it’s not right for everyone.
Finally, I feel like I need to make the point that this isn’t a cure for MS. This isn’t going to give me the ability to walk back. If I ever get back on my feet and take a step again, it will be because the ability was there and being blocked by spacticity. All the pump does is remove an obstacle to something that is either there or isn’t. I don’t know if mine is there, but I intend to find out.
There’s a lot more than this overview provides. I am apparently sensitive to intrathecal baclofen too and what should have been a 1 night stay in a regular room after surgery, turned into 4 nights in intensive care, but that’s another story (I keep saying that, don’t I?). If you want to know anything specific, just ask.
