Month: July 2021

Categories
Life with multiple sclerosis

What’d I Do!?

I was diagnosed with multiple sclerosis almost 4 months before my middle child was born, so all 3 of our kids have never really known me without it. Nothing drives home the fact that you have a disability quite like a kindergartener’s crayon drawing of you in a wheelchair.  As they grow, their awareness of “daddy’s sickness” is growing too and they’re starting to ask questions. They know it’s in my brain and given the electronic world they’re growing up in, they seem to readily accept problems with connections (wiring) between my brain and the rest of me. They also understand that it’s not like a cold and or an infection that can be caught or given to someone else. Someday they’ll learn about genetics and heredity and I’ll have to bite the bullet and explain that because I have it, their chances of getting MS are a little higher than average.

The kids were all born within 5 years of my medical retirement from the army, so they only have a few memories of me actually being in. However, there are pictures and stories of various shenanigans so it shouldn’t be surprising that after a talk the other day about me being to blame for some………ok, most of my scars, one of the kids asked if I had done something to cause my multiple sclerosis too. How do I answer something that I’ve asked myself countless times? Why and how did this happen? Admittedly, I’m more concerned with what we do now but I do realize the importance of unraveling the how and why. 

A local neurologist diagnosed me. He’s an excellent neurologist and has a few other multiple sclerosis patients, but he’s a headache specialist, so, soon after the diagnosis, I started seeing an MS specialist. At our initial visit, she asked a ton of questions and at one point remarked that even though MS isn’t inherited per se, it does tend to run in families and I had no family history of MS whatsoever. At this first point, she had no idea about my army background and said that minus a family history, there were a couple of theories being floated around as to how this happened to me and that they both surmised a genetic predisposition and some sort of environmental factor or event that triggered the immune response. She then asked if there was a chance I could have been “over” vaccinated and therefore had an overstimulated immune system. Hmmm, I’ve had a few over the years. All the normal ones, plus smallpox, yellow fever, rabies, anthrax, and plague. She then asked if I had been exposed to anything else, another illness perhaps, that could have put my immune system intohigh gear, so I had to share that I’d caught Q-fever in Afghanistan 6 years prior and had just finished an 18 month, 2 drug regimen for the chronic version when it came back to haunt me.

On top of those two possibilities, a year or so back, I read an article about a possible connection between head injuries and MS. As luck would have it, an old SF buddy was in town and over dinner reminisced about a time when I was the tail gunner in a truck and had been knocked out when a tree branch hit me in the back of the head just under my helmet edge and slammed me forward into the gun. My wife laughed and said that she was surprised I’d never mentioned it before. When he told the story, I instantly remembered the event, but had forgotten it entirely up to that point…….almost 16 years. I’m no expert, but no recollection about being knocked out can’t be good. I remember my other concussions (that was 3 of 4) so that probably makes it worse. The jury’s still out as far as a connection with MS goes, but I seem to be maxing out on possible contributing events. 

So I guess the answer to the question of whether or not I brought this on myself is……..who knows? If there is a way, or ways, to contribute to developing MS, I’m guilty of a few I suppose, but what about everyone else? Some have a family history, but many don’t. Are there a huge variety of triggering events (ex.Epstein Barr Virus), or is it completely random? Remember consistently inconsistent? Maybe MS is also randomly random. Everyone who had EBV or even shares my experiences doesn’t have MS, so it’s either random, there’s many, many triggers, or there’s something completely different waiting to be discovered. 

My kids are way past the point of thinking I know everything, so I guess it’ll be OK if I just say “I don’t know.”, when asked this question. I may never know how it happened, but it’ll be OK with me if they find the answer to “what do we do now”, before they unravel the mystery of “why”.

Categories
Life with multiple sclerosis

Fatigue

In an earlier post, I wrote about being tased and how it’s a near perfect way to describe my worst moments with MS. I also noted that the description only makes sense to a person who has been tased before, so it’s of limited value. At the end,I mentioned that I’d talk about fatigue later, but after thinking about it some more, I guess what I was trying to describe with the taser example is, in fact, my MS fatigue. 

           We really should have another word for it because describing it to someone as “fatigue” really doesn’t do it justice and can be confusing for people.

“Oh you’re fatigued? I get tired too sometimes.” 

“No, it’s more than that.”

“Haha, don’t worry, I get it. Every once in a while I feel like taking an afternoon nap.

“No, you don’t ‘get it’, but I have a way to help you understand.”

“Is that a taser?”

I better make a quick disclaimer here. I am in no way, shape, or form suggesting that you use a taser on someone, no matter how much you want them to understand or how satisfying it would be for you. 

I know like all things multiple sclerosis, my MS is not your MS, so my fatigue may not be the same as your fatigue, but there are probably some similarities. Chime in, in the comments section  with your experiences and any suggestions for a better, more appropriate word for it.

With my progressive MS, there are no remissions, instead there are good days and bad days, good hours and bad hours. The bad times are when fatigue is in full swing. My fatigue is not the same as being sleepy although I suppose being sleepy could be a part of it sometimes. My fatigue is not the same as being tired, ie “worn out” either. When I’m fatigued, I’m tired…..so very tired, but I can be tired without being fatigued, if that makes any sense. What I mean is, I can come back from an intense session at physical therapy and feel tired from the effort and need to rest,  but that’s not the same to me as when I’m in the throes of fatigue which seems to blindside me at random times on random days. (there’s that consistently inconsistent thing that drives me crazy).  My fatigue comes on rapidly and just about makes me immobile. Did you know you can feel a loss of balance while sitting in a recliner? Apparently you can. It doesn’t increase spacticity but makes my limbs feel like they weigh 100 times more than usual. My extremities, especially my right hand (my right side is the more affected side), become cold and stiff. My eyes want to close, not in sleep, but because holding them open is an effort. When they are open, I have unfocused, sometimes double, vision. I have hearing loss and tinnitus, but when fatigued, I seem to be almost sensitive to and even annoyed by, noises. This is when my cognitive function is at its lowest. If thoughts had weight….(do they?) they’d feel 100 times heavier too and hard to move around and organize. Just getting a thought to go from brain to mouth, or fingers (typing) becomes extra difficult. I tend to talk slower than normal, my voice gets quiet and hoarse sounding and occasionally I even slur. Sometimes, it has an effect on my emotions too, mainly exaggerating them to levels outside my norm. Are you starting to see why I consider this to be beyond tired or sleepy, or how slightly irrational thoughts like using a taser to explain it to people who think it’s just being sleepy or tired suddenly seem rational?

 Like so many with MS, letting myself become overheated can also give me all of those fatigue symptoms (Uhthoff’s phenomenon) but it seems to fade as I cool down to a normal temperature and just leaves me feeling weak and tired. For me, getting hot can bring on a bout of (somewhat) reversible fatigue, while my nearly everyday, random fatigue seems to have no rhyme or reason and no means                  

If I were to describe it to people from a background similar to mine, I’d tell them to remember being in a high adrenaline situation, when the sympathetic nervous system (fight or flight) dominates and then when it’s over, feeling the effects of the parasympathetic backlash. The levels of parasympathetic hormones rise to balance the sympathetic ones and when the stimuli for the sympathetic response is past and those sympathetic levels drop, you are left with high levels of the parasympathetic hormones, etc and suddenly feel utterly exhausted and……well…..fatigued. 

I’m spitballing here, but I have lesions in and around my brainstem and sometimes wonder if any are having an effect on my hypothalamus and/or amygdala and are responsible for both my temperature regulation problems and random fatigue symptoms? If that’s the case, until there’s a remyelinating, or lesion repair therapy, there’s not much I can do about it. However, could counter therapy, i.e. something to balance the parasympathetic response reduce fatigue? I think I’ll bring it up with my neurologist next time I see him. I can tell by the way he sighs and how his eye twitches that he loves it when I ask things like that.*

*I’m joking. We only see each other every 6 months and he knows I have nothing better to do than sit around thinking up stuff like this, so he doesn’t expect me to ask yes or no questions.

Categories
Background

Intrathecal Baclofen Pump

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.

No, I do not have any bionic super powers………yet.

Categories
Life with multiple sclerosis

Ambush

Ranger Handbook SH 21-76

“There’s a fine line between being treated differently out of necessity and being treated differently out of pity.”

Me, about an hour ago.

The sun was well over the horizon when I came through the door. It was quiet…..dare I say, too quiet. As I turned my rollator to scoot myself backwards and sit in my wheelchair, I suddenly realized that no one had shouted a customary morning insult/greeting. Concerned, but not yet really alert to any danger, I turned my chair on and attempted to drive towards the conference room. Nothing. I glanced down at the drive motors on either side and my heart sank as I realized that both levers were in the disabled position. One side could be an accident, but both sides could only mean…… I flipped one to the drive position and was reaching for the other when the ambush started.     

As rounds began to impact, I flipped the other switch and again attempted to drive away, but discovered too late that the quick detach cable between the controller and drive motors had been unplugged as an extra measure to keep me from escaping. I was impressed at the planning and foresight that went into this, although I’d have expected nothing less from my Green Beret and Marine Corps coworkers. It also impressed me because I guess I had always assumed that we’d have outgrown this sort of thing by our 40s.

During my next checkup at the VA, I was asked if I was still working and if I was being treated with dignity and respect at work. “Umm, well, they disabled my wheelchair and shot me with NerfTM   guns the other day”. 

The nurse collecting data wasn’t sure how to categorize that and finally asked, “Do you consider that to be dignified and respectful?”.

I had to think about it for a second before I answered that yes, I do. 

When I medically retired from the army, I went to work with a couple other retirees who accommodated me in every way and told me that the job was mine as long as I wanted it. I probably stayed 6 months longer than I really should have, and I think it was because it never occurred to my friends to treat me like I was handicapped. Somehow, it matters to me that it was my actual disability that caused me to stop working and not anyone’s reactions to that disability.  

Later that day, at lunch, my friends checked with me to make sure I wasn’t offended or hurt over being ambushed. Quite the opposite. A lot of planning and logistics went into that ambush; weapons and ammunition had to be procured, communications established, routes planned, escape routes cut off, command and control set up, etc all followed by a sort of after action review over lunch. I realize that many of the readers of this blog may not be from that background, but please understand how much people have to care about you to go through that much effort.

 I’m sure there will be many, many more, but this post has been the hardest for me to write so far. I have erased multiple paragraphs and reworded others more times than I care to count.  It’s not an uncomfortable subject, it’s just been really hard to put into words and opens up so many other potential discussions that it’s been really hard to stay on topic. Let me try to sum it up as best I can and keep in mind that I’m only speaking for myself here. My friends’ acceptance of my limitations makes it exponentially easier for me to accept them. My disability has to be treated differently…..accommodated. That’s just an inconvenient fact of life, but if “I” am treated differently, that hurts. I am well aware that my friends and I might be a little outside the norm. Rough and tumble life equals rough and tumble attitude and humor, so substitute afternoon tea and crumpets for the ambush if that makes the scenario work for you. The point is, true friends accommodated my disability (they must have looked up the manual online to accommodate properly disabling my wheelchair), but didn’t treat “me” like I was disabled. My abilities have changed, but I’m still me and real friends know that.

Oh, right, let me pass this on too. You bear some, if not all of the responsibility to let your friends and family know that it’s ok to treat you like……. .you.

Categories
Life with multiple sclerosis

Survivor’s Envy

“Oh my friends, my friends forgive me

That I live and you are gone.

There’s a grief that can’t be spoken.

There’s a pain goes on and on…”

Marius, “Empty Chairs at Empty Tables”, Les Misérables

    I guess I look pretty good on my DD214. Well, halfway decent anyway. Truth be told, I was only ever in a couple scrapes and overall, never experienced any trauma I wasn’t prepared for mentally. I was very, very fortunate and I know it. Not everyone was. 

    If it’s even a real thing, I have an almost photographic memory. My favorite instructor in the SF medic course caught on quickly that I had the grading algorithms for the trauma lanes memorized and was getting cocky. The patient does this and I do that and problem solved and I pass.  So, he started killing my patients (all pretend, in case you were worried) even when I did everything by the book and after one such incident, I threw a handful of gauze, said a very bad word, and stormed out of the tent. He followed me out, grabbed my arm, and led me to the woodline where he told me:

       “You’re not God! You don’t get to say who lives and who dies. You can do everything right, everything by the book and people are still going to die on you. In this line of work, you are going to lose sometimes and if you can’t handle that then you need to find something else to do. When it’s all said and done, when all the inevitable second guessing is past, if you can look in the mirror and say that you did your best, then sleep well”.

I think that this is why I never had to deal with too much survivor’s guilt. You know, “Why him and not me?  I should have done more, or done…X and he’d still be alive, etc, etc”, but what about survivor’s envy?

I cropped him out of the picture out of respect, but the guy whose blood is on the road in front of me did not make it.* I don’t believe in any “blaze of glory” nonsense, but if I’d known then what I know now, would I rather it had been me cut down in the prime of my life instead of a future of implanted devices, prescriptions, diplopia, wheelchairs, incontinence, dysphagia, and so on? 

This is just idle speculation brought to a mind by a phone conversation with an old acquaintance not long ago. I told him about my MS (he asked) and he remarked that if he had to deal with those sorts of disabilities, he’d put a gun in his mouth. That sort of brutal honesty is the norm with most of my circle, but it rubbed me the wrong way and I guess it showed in my voice. He backtracked by reminding me that I had a wife and kids, “good reasons to keep going”, he said, while he was single and couldn’t abide the thought of living in a home or having a stranger look after him.

I guess I get it. The year after diagnosis was the hardest on me depression wise. I could still walk and drive then, but the reality that this wasn’t going to get better….or at least not get any worse had set in. I was never suicidal (I like me way too much to harm myself), but there was a point where if a semi had swerved into my lane on the highway, I don’t know if I’d have tried to avoid it. I’m better now and I’d like to think I’d have plenty of reasons to keep going even if I didn’t have my beloved family. But what about that 31 year old medic in the picture? He was single and proud to the point of being arrogant. If I could go back and tell him what the future held in store, would he have taken more chances, or deliberately exposed himself to enemy fire? I can’t say with certainty what past me would do, I can only tell you what I’m doing now and that’s doing what I can, while I can.

Who knows what the future holds? It’s comforting to think that maybe future me is thinking that if he could go back, he’d tell me to suck it up a little longer because something good is just around the corner.

*Mr. Scheuermann, you were right. I did my best and still lost, but I can look at myself in the mirror because of your hard lesson.

Categories
Life with multiple sclerosis

Don’t Tase Me

“Don’t tase me bro!”

Unnamed UF student 2007(?).

    Epiphany. That word was once the bane of my existence. Back when I was a SOTIC instructor, I was at the range every morning an hour or two before the students, setting up the steel targets and repainting them as needed. It never failed. About 20 minutes before the students began to arrive, the senior instructor would take a sip of coffee, look out over the range, and announce, “I have an epiphany! Followed by something like, “let’s move all the targets and paint every other one with evenly spaced stripes.”. The other junior instructors would challenge me to put a sedative or something that caused explosive diarrhea in his coffee, but eventually, we’d either do it, talk him out of it, or threaten a mutiny. I have tried not to use that tainted word since then, but recently I’ve had an epiiiiiii……an epiiiiii…….a bright idea of my own, so I’ll share it. 

    I was tased once. Most people that know me are not surprised by this. Just by the “once” part and even more surprised when I tell them it was voluntary. I went to a sort of driving course that tased and pepper sprayed students to expose them to the sensations of…….. getting tased and pepper sprayed. I would have refused, but the opportunity to drive fast, crash, and otherwise abuse cars that weren’t mine was too good to pass up and so, midway through the course, I found myself shirtless, held up by one fellow student and shot in the back with a taser by another. It’s not like touching an electric fence, or grabbing the wrong 2 wires under the hood of a car. Every muscle in your body locks up and you stand there, back arched, and make vowel sounds; mostly eeeeeeee and oooooooo, as I recall. You’d probably shout them out, but you’re limited to whatever air you had in your lungs before the barbs hit you, so you make do. When it ends, you collapse to the ground numb, not really feeling it when they pull the barbs out. It takes a second to collect your thoughts, see clearly, and get your muscles to respond to your will. 

    And…..that’s what my worst moments with MS are like. Fuzzy, non-linear thoughts and vision, muscles that don’t respond, numb body parts, and having to concentrate to get enough air in to complete anything more than a 5 word sentence. 

    It’s not a great example. Only people who have been tased get it and I don’t/can’t recommend tasing people even if you really, really want them to understand.  MS is really hard to describe to people, so I was glad to have this epiphany to share, even if the audience is small. Fatigue deserves a post all it’s own, so we’ll cover it later on.

Categories
Life with multiple sclerosis

Bingo

A few years ago I was at an event talking to the outgoing group surgeon about multiple sclerosis and a friend I hadn’t seen in years overheard us.

           “What do you have?”

           “Multiple sclerosis.”

           “Oh no! I’m so sorry. How long are they giving you?”

           It took me a second to get what he was asking. “What? I’m not going to die.”

           “Oh, ok, I know what you’re talking about now. That’s the stuff Michael J. Fox has.”

           “No, that’s Parkinson’s. It affects the central nervous system too, but other than that, they really have nothing in common.”

    “I got you. So are you going to try that bee sting therapy?”

    “Five minutes ago you didn’t even know what we were talking about, but now you feel confident enough to recommend a cure that involves getting stung by bees?”

    Or, right before I retired, during a morning meeting, a friend announced, “Hey Ben, you know who else has MS? Carlos Hathcock.” (famous Marine Corps sniper).

“Thanks, but that’s not a great example. He’s dead.”

“What!? When did that happen?”

“About 10 years ago.”

Desperate to salvage this: “But what did he die of?”

“Complications from his multiple sclerosis. Stop trying to cheer me up. You suck at it.”

 And the list goes on and on. See the chronic illness bingo above? I’ve heard all those and then some. Yes, the latest mouse study is fascinating. I’ll keep up with it during the 20 years it takes to get to human trials. I’m thrilled that your brother’s best friend’s cousin knows a guy that read an article about a guy with MS who is climbing Mt. Everest this year. Maybe I’m just not that motivated, but there’s also a chance he and I don’t have the same symptoms. Yes, I’ve heard about that diet. It’s good to know that organic kale grown only in Patagonia will cure this and I’ll take it under consideration.

I’m being cynical and probably a tad bit sarcastic. I know they mean well (most of them anyway) and I know people naturally  feel like they ought to say something. Yes, we can talk about this. Please don’t feel like you have to tiptoe around it.  I might even bore you to tears because you could say I have a vested interest in MS, coupled with a lot of time to read, so I know quite a bit.

That’s not to imply I know everything. I don’t and I really am grateful for new and “helpful” information, or kind (not pitying….please. We’re not at a funeral) words. In the meantime, I’d rather not win another round of chronic illness bingo and guess what? It’s ok for me to not always be grateful that it’s not worse.

Categories
Life with multiple sclerosis

Not Like This

“Not like this…..Not like this”

Switch, (The Matrix) 1999. 

    It was probably more luck than anything else, but I take great pride in the fact that I’ve never been shot or blown up. My grandfather was awarded two purple hearts in WW2 and when I was a child, he told me that they meant that he was smart enough to think of something to do, stupid enough to try it, and lucky enough not to get killed.

    I’ve had a couple close calls, but all my disability is from injury or disease, the latter of which is almost comically difficult for guys in my former profession to come to terms with. The career field has its own risks and everyone accepts them as part of the job, even the ones who think it could never happen to them. Death and injury are understood as being par for the course and therefore acceptable while anything else is a foreign concept and difficult to comprehend. They that live by the sword…. and so forth. 

    I told my supervisor (S3 SGM) the day after my diagnosis. While I certainly wouldn’t call him “crusty”, this was a guy who’d been around the block, so to speak. I’d known him for quite some time and we’d even deployed together. When I told him I had been diagnosed with multiple sclerosis, he stood up with an odd look on his face. It occurred to me that the Sergeant Major was either going to cry, or come around the desk and hug me and I didn’t know how to handle either scenario any more than he knew how to react to something outside the norm of our profession.

    Later, while I was still in the same staff job before retirement, a fellow medic (18D) had been badly wounded and I called him at Walter Reed one day to check on him and see if he needed anything. During the conversation, he told me he had heard about my MS diagnosis and how sorry for me he felt. A double amputee with multiple other serious injuries is sorry for me? I thanked him, but in my head, I was thinking, “No, you don’t get to feel sorry for me”. Is it because we volunteered for combat that combat injuries make sense while a random disease doesn’t? 

    In my own way, I suppose I do it too. I recently caught myself telling someone about my service and I remarked that in all this time, I’d never gotten a scratch from combat. Instead, multiple sclerosis had gotten me in the end. Maybe a tangible enemy or accident is acceptable somehow while an invisible disease is not. I never expected that I would get shot, blown up, the parachute wouldn’t open, and so on, but I wasn’t naive enough to think it wasn’t possible. Maybe that means it was expected in a round about way and since MS wasn’t, that makes it different and frightening.  

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Background

Save Your Pity

“… I’m not a tragic figure, no matter how hard you try to make me into one. I’m delighted with myself…”

John D. MacDonald, (The Deep Blue Good-by)

    A little more about multiple sclerosis and my experience with it. Although this is written from the perspective of a retired SF guy, this is for everyone with an interest. Former Green Beret medics with MS are an audience of……about…..I don’t know…..2?. Given that the VA has a network of MS centers of excellence, former military with MS is a bigger audience, but I don’t want to leave out anyone who was just diagnosed, family members, caregivers, etc. 

    I won’t bore you with any medical or physiological details since you can look those up easily enough. Here’s one such link if you’re so inclined: 

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

    Key takeaways from the first paragraphs of the article include:

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body.

Signs and symptoms of MS vary widely and depend on the amount of nerve damage and which nerves are affected.

There’s no cure for multiple sclerosis. However, treatments can help speed recovery from attacks, modify the course of the disease and manage symptoms.

    See that part in the second excerpt about varying widely? That’s an important thing (maybe the most important thing) that I didn’t understand until a couple years in. There’s several recognized variants, relapsing remitting, secondary progressive, primary progressive, and so on, but my MS is different from your MS even if we both have the same variant. As I wrote previously, I have primary progressive MS. As luck would have it, the first person with MS I met had PPMS too, had been diagnosed 20 years ago and used a cane to walk. I breathed a sigh of relief after our encounter. If a limp that requires a cane is as bad as it gets, then this isn’t so bad. 

It’s been 7 years since that encounter. I could run then. Not far or fast, but I could run. Now, I can’t stand without support, can’t walk, and have lots of other issues that we’ll get to eventually. The point of this particular bit is not to have a pity party, but to hopefully spare you from the problems I encountered early on when I thought MS was a one size fits all disease and tried to compare myself to others who had it.  

In the grand scheme of things, I’ve got it pretty good. It didn’t really hit me until my late 30s while so many are diagnosed before they ever get to really live without it. My medical retirement from the army went relatively smoothly, (it doesn’t for a lot of people). Overall my experience with the VA, while aggravating at times, has been positive. I am married to a nurse who looks after me when I need it. I was still able to carry my kids upstairs when they were babies, and while I have a lot of disabilities, I am finding ways around them.  

The kind of readers I intend to attract probably don’t need to be told this, but please save your pity for someone who deserves it. I’ve had a great life and it isn’t even close to being over. Don’t get me wrong, I’ve felt sorry for myself and doubtless will again, but there’s nothing tragic about my situation.

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Background

Background

“The details of my life are quite inconsequential…….Very well, where do I begin?”

Dr. Evil, (Austin Powers International Man of Mystery) 1997.

    For my first post, I suppose I had better give a bit of background. 

I joined the army in September 1995 and did basic training and 13F AIT at Ft. Sill, Ok. From there I went to airborne training at Ft. Benning, Ga, followed by RIP (Ranger Indoctrination Program…..called RASP now). After I surviv……um, completed that I was assigned as a forward observer to A/1/75 Ranger Regiment at Hunter Army Airfield, Ga. I went back to Ft. Benning for Ranger school in the late fall of 1997 and after a couple recycles (I was a private from one of the Ranger Battalions and was too dumb and stubborn to quit), I finally graduated in class 6-98. I got out in January 2000 at the rank of sergeant, went back to school and figured I’d never be back.

About 18 months later, however, I found myself missing the……..well, I’m not sure if it was any one thing, or even if I could put a name to it if it was. Regardless, right around the events of 9/11, I found myself joining the 20th Special Forces Group with the intention of being an 18D (Special Forces Medical Sergeant). I passed selection in the spring of 2002 and finished the qualification course in 2004. Deployments to Afghanistan and Iraq followed, as well as a teaching stint at the operations detachment. It was there in 2009 that I felt the first symptoms of MS which I wrote off to various (ignored) injuries.

After returning from a tour in Iraq in 2011, I was aware something was wrong, took a staff position at 1/20 SFG(A), and started to address all the problems I’d been ignoring over the years. I had a second knee surgery that December (the first was between selection and the start of the SFQC) and an ankle reconstruction in July 2012. Still, the limping, foot drop, and balance issues were getting worse and were now complicated with heat intolerance and occasional double vision. In 2013, on a whim and because I remembered being sick in 2006 in Afghanistan with a mysterious, self limiting fever, I had my titers for Q-fever checked. Sure enough the results were positive and the antibody ratio high enough to warrant treatment for chronic Q-fever. Near the end of that 18 month treatment when the titers improved, but the symptoms didn’t, the infectious disease doctor sent me to a neurologist who diagnosed me with multiple sclerosis on Valentine’s day 2014, after an MRI that showed lesions even I could see.

I started on 3 injections of Copaxone a week and started seeing an MS specialist. Sometime the following year, given my history and steady, unrelenting progression, the diagnosis was changed to primary progressive multiple sclerosis. I discontinued Copaxone and started taking Aubagio once daily. Both are for the relapsing form of MS, so neither was a help, but it was thought that Aubagio showed some promise of staving off long term disability, so the plan was to take it until a treatment for ppms came out. The Aubagio was apparently too tough on my liver, so it too was discontinued and other than medication for symptom relief, I took nothing for ms until Ocrevus came out. I was medically retired from the Army in November 2017 with 22 years all told and 19 years 2 months of active duty. The Ocrevus seems to have me stable for now and I’ll have my 9th infusion this coming October. That means the disease isn’t progressing, but the disability is, so I have an implanted, intrathecal baclofen pump to deal with the severe spacticity, and am in a wheelchair, with a goal of getting back on a rollator in the near future. 

This is a quick(ish) overview, with more details to follow on various topics.