I’m throwing out an old pair of shoes. I realize that isn’t very remarkable sounding, in and of itself, but they’re running shoes. They are, in fact, the last pair of running shoes I ever bought and the last ones I actually ran in.
I was never fast, but for most of my life, I enjoyed running for long distances. The army sucked some of the fun out of it, as it is wont to do, but I liked it enough to make it an activity that I regularly did, unforced. In the months before selection (SFAS), I even got 3rd place in my age group for a half marathon. It took place in January, was called the “Frostbite Half Marathon”, and there were only 2 other fool….I mean, runners in my age group, but I’m still proud.
I came back from my last trip overseas in the fall of 2011, knowing something was definitely wrong with me and started knocking out the things I knew about but had been ignoring. I had knee surgery before in 2002 but had torn a few things since then and had a kneecap that would occasionally end up dislocating to the outside of my leg, so I had a second knee surgery that December. After rehab, this was followed by an ankle reconstruction (modified Brostrom Gould) in the summer of 2012. You know you’ve let it go too long when the foot and ankle specialist at the teaching hospital asks if he can let some residents see this and one of the 5 who come in to see a positive ankle drawer sign asks if you were in a car wreck. After recovery and rehab, I figured I had that annoying foot drop problem fixed and was ready to get back to the way things were. To celebrate getting back to normal, I treated myself to new running shoes.
By “treating myself”, I mean I went to one of those places where they make you walk on paper with wet feet and stand on a special panel that scans your foot alignment, weight distribution, pressure points, stock portfolio, personal hygiene, etc, and recommends the right shoes for all your problems. Fortunately, lots of people had my exact foot issues because my shoes were in stock right there on the shelf and were less than twice what they would cost at a store where I just walked in and picked them out myself without expert assistance.
I got to run in them a few times, but not nearly enough to wear them out and commit them to lawn mowing duty, which is the last step, (pun 100% intended), of a shoe’s life. Instead, I kept them around wearing down the side of the toe where my foot dragged, rather than the tread and soles.
They’ve been good shoes, but they’re just an old worn out pair of shoes. It’s time….actually it’s past time to let them go, so why the mixed feelings, you ask? Ok…nobody asked, but I’ll tell you my thoughts anyway. After all, if you’ve read this far, you’re sort of obligated to finish this post.
It’s not the shoes. It’s a link, (maybe a desperate little lifeline) to the pre-disabled past. I’m in a wheelchair wearing running shoes that I’ve actually run in before. Mrs. Havisham was right, it’s perfectly fine and normal to leave out the cake and decorations til they rot.
It’s time to go on to the next chapter. I don’t have to like it, I don’t have to “embrace” it, (whatever people mean when they say that), but it’s time. Really, I’m already there, I’ve just been hanging on to the little things that make the book of my life sometimes fall open to those pages. It’s good to look back on fond moments in the story. In fact, I’m pretty sure that’s normal, but the next chapter is waiting, and the next, and the next, until the book is done.
I’m getting new shoes. They’re slip on with laces for adjusting the fit…..and for show. They’re supposed to be easy for me to just slide into without the back part folding in. We’ll see when they arrive, but I have great expectations for this next step.
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.
“… 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:
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.
“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.
