Tag: multiple sclerosis

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Life with multiple sclerosis

Quack Magnets

Is there anything that can’t be cured with snake oil?

The term quack originates from quacksalver, or kwakzalver, a Dutch word for those who claim to have knowledge and skill that they do not possess, particularly in medicine. The quack makes exaggerated claims about his or her ability to heal a disease or condition, generally for financial gain.

As best I can determine, the term “quack magnet” is from ‘Science Based Medicine’ by Harriet Hall, MD. It describes those who, for a variety of reasons, are the primary target of “quacks” selling all sorts of devices, diets, supplements, etc that claim to cure a disease or condition.

This one even claims to be an alternative to quack medicines

Multiple sclerosis is a life altering disease that has no cure. Maybe I should say that again. Multiple. Sclerosis. Has. No. Cure. (yet). All the positive attitude in the world cannot completely overcome the misery of being sick with nothing available except various forms of symptom relief and this makes us….yes, I’m part of us…., desperate and vulnerable. That desperation for a solution makes us a magnet for people who want to profit off of it. We are quack magnets (get it?). Don’t like that? You shouldn’t like it. Feeling suddenly defensive? Don’t worry, I’ll soften the blow a little, in a later paragraph.

I bet the results were unbelievable.
I can’t date this ad, but I imagine those prices would be significant in today’s money. The desperate can almost always be counted on to pay for a “cure”.

See the word “Cure”? That’s the key word. That’s what we, (desperate people), want. For legal reasons, quacks don’t use that word anymore. These days, it’s “Beat”, “Overcome”, and so on. Also note the phrases, “Secret Formula”, “No Other”, “Beware of Imitations”, etc. If a quack is to take advantage of you, their solution has to be the only one that works and can only be obtained from them.

See, if only their product, solution, method, or plan works, then obviously, if it didn’t work for you, you did it wrong, didn’t try hard, or long enough, or didn’t spend enough to get the genuine article. If you really want this to work, if you really want to be cured,…..oops..I meant, really want to beat this, you’ll buy my second book, the next ancient moon rock, etc.

An unamed “medical specialist” compiled that SCIENTIFIC data. Glad it wasn’t just anyone, because that might make it suspect.
In case you were were on the fence because a doctor in a genuine lab coat wasn’t willing to take some money to endorse something dubious, you can relax. If you’re still not convinced, did we mention that he’s also a scientist, diplomat, and a friendly, sympathetic human being?

But Ben, those are old advertisements from the dark ages or something. People are so much smarter, more informed, and less gullible now. Really, put “doctor”, “specialist”, and/or “science” in your ad today and see how many people blindly accept it as fact. Legitimate advertisers do it because it works so well. The difference is, they can usually back it up.

Because of my background, I am unimpressed when something is touted as “military grade”. A little digging will show you that the term basically means, “good enough”. Similarly, if you see, “studies show”, “experts say”, “science says”, etc, you owe it to yourself to not be automatically impressed and just take it on blind faith. Look at the images above again if you need to be reminded of those kinds of words used as endorsements.

I said I would soften the blow. If losing weight and exercising makes you feel better (it should, by the way), you should absolutely do it. A particular diet may ease some symptoms for you, but MS is different for all it’s sufferers, so what works (not cures) for one may not work for another. The same applies to supplements and even the various DMTs* available. Remember, if someone implies that MS is a one size fits all disease and that their solution is the only one, that’s a dead giveaway that they’re a quack out to separate you from your money.

Look, really, if it makes you feel better, happier, and doesn’t hurt you, or anyone else, then who am I to tell you what to do with your money? Just come to terms with the idea we’re quack magnets and make your decisions accordingly.

*Disease Modifying, Treatments

Categories
Background Life with multiple sclerosis

Creative Advocacy

Image from Medicus Health https://www.medicus-health.com/hardside-cooler-small-13-qt.html

What does this have to do with advocacy, or creativity? I promise there’s a reason for my image choice….other than being a pretty good attention grabber.

Some time back……I’ve learned that if I actually think about how far back it really was, it will unnecessarily depress me, so, like I was saying, some time back, I found myself with my team in Kandahar, Afghanistan trying to catch a flight back to Bagram. It was unscheduled and we kept getting told that everything going that evening was full and to check back later.

“Later” kept turning into even later and was on the verge of turning into never. This was probably because when the bored Airman at the desk told us that, “The Airforce is not a taxi service.”, a less than diplomatic teammate replied that that was exactly what it was. It was decided that he would no longer be sent into the terminal to inquire about flight availability and that I would perform the next “check back later”.

As luck would have it, I bumped into the Group veterinarian while waiting. He asked if I was going to Bagram, and when I said yes, he asked if I would carry a package there for him so it could be sent back to the states via courier. The package turned out to be a cooler, sealed and marked with a biohazard symbol, and contained tissue samples that were to be tested for anthrax. I was nothing if not helpul, so of course I was happy to carry a cooler full of what could be samples containing a potentially fatal disease. Months later, I would catch Q-fever while helping that same veterinarian vaccinate livestock as part of a civil affairs project and after that, I was way less inclined to be so helpful, but that’s another story.

No matter, it was soon my turn to go to the terminal desk and ask if there was any space available on a flight to Bagram. I absentmindedly set the cooler on the desk and after the Airman gave his automatic reply of “everything’s full”, he looked up, saw it in all of it’s sealed, stickered, glory and asked, “What’s that?”.

I was beyond tired at this point and forgot to add words like, “potential”, or “to be tested for” to my reply of, “anthrax samples”.

We got several rows to ourselves that had just, that moment, become available on a C-17. I even had an empty seat next to me to set the cooler on and sprawl into as I snoozed.

That story is an example of creative, albeit, accidental advocacy and I don’t recommend that particular method for either a real airport or a healthcare visit. In both cases, not only will you not get what you were after, but you will very possibly be tased and/or pepper sprayed, handcuffed, and arrested…..not necessarily in that order. The point is, sometimes you have to go the extra mile when advocating for yourself or someone who is unable to.

I am able to advocate for myself…..most of the time. My wife accompanies me to appointments whenever she can, to fill in things that I’ve forgotten*, or (maybe more importantly) to ask questions and add to the discussion from the perspective of a caregiver. I realize my situation may not be your situation, but there are things a caregiver, physical therapist, occupational therapist, etc, etc, could add to your next neurology visit. They may not be coming with you, but believe me, it’s worth asking them for their input.

I mentioned it in my last post, but if you haven’t already, take the time to learn about multiple sclerosis and whatever medication, treatment, therapy, device, and so on, that you’re asking about. It’s not about sounding smart, or using big words, although if you lead off with, “I saw on Facebook”, or “I googled______”, you should probably immediately follow it with something that shows you’ve looked a little deeper into it. It’s about sounding like you care enough about the answer to have put some effort into the question. If you don’t like the answer, be prepared to ask why that answer was given. If your provider can’t, or won’t explain the answer, it might be time to get a second opinion.

Yes, I’m aware there might not be options when it comes to providers. I get most of my care from the department of Veteran’s Affairs and like many taxpayer funded healthcare systems, you get what you get (my kids would add, “and you don’t pitch a fit”). I know I have been extremely fortunate in my neurology care, but I would like to think it’s at least partially due to my being a successful advocate for myself.

I don’t bully (I don’t even think I’m that assertive), I don’t manipulate, coerce, or even pitch a fit and I don’t suggest you do either. I do, however, suggest that you be your own advocate and that you advocate creatively if need be.

If MS is ever cured, it will be the result of someone asking the right question.

*There is some debate as to why I forget things. I say it’s because I have MS. My wife’s theory is that I’m getting ol……you know, it’s so far fetched and harmful to my pride, that I won’t mention it here.

Categories
Life with multiple sclerosis

Skin In The Game

Just in case that was too much of an American idiom

When I was getting ready to leave Fort Bragg after 2 years of the qualification course, I had a few days of idle time before my various appointments in the clearing process began, so I decided to be proactive for once. I started by paying a visit to the personnel (think human resources) section to let them know I had an appointment in a few days time and to ask what I should do, or bring to make it as smooth as possible. They congratulated me on my foresight and went to pull my file so they could see if everything was in order and if anything was missing. The clerk returned after a moment with a nearly empty folder. It turned out that almost everything was missing and after asking, hopefully, if I was just starting instead of clearing, they said there was going to be a delay as they tried to piece my records together.

Fortunately, years before, on a wiser person’s advice, I had started an “I Love Me Book” and happened to have it with me that day. It’s simply a large 3 ring binder with dividers and document protectors that contains a mostly, chronological record of everything I’ve ever done in the military, including my time there at Ft. Bragg. Because of it, I was able to provide copies (no way I was giving up my originals) of every set of orders, every course completion document, every evaluation, and so on.

Proactive, because I’d been in the army for more than a day and knew things, especially paperwork, got lost, or misplaced? That too, but more importantly because it was my record, my documents and I had a huge personal interest in them being accurate, much less, actually being there. I’ve crossed paths with some amazing people in my time in the military, but no one cares about me like……me. You could say I have skin (quite a bit of it, in fact) in this game.

Something else, another “game”, that I do, quite literally, have all my skin in, is my healthcare. Even if I didn’t have multiple sclerosis, no one should be more involved with, or care more about my well being than me. It bothers me to hear someone tell me that their doctor, etc is the head of their healthcare team. Wrong! You should be the head of your healthcare team.

I see 2 neurologists, both MS specialists. There is no doubt in my mind that either one knows way more about MS than I do. That’s why I see them. Otherwise, what would be the point? They know me, know my history, abilities, progress, and lack thereof. It would not be stretch to say they care about my health,……..but not as much as I do.

I hate to use cheesy motivational phrases, or sound cliche, but, I’m more than my MS. The neurologists are very high up on the list of my healthcare team members, but certainly not the only ones. They know more about MS than I do and that’s how it should be. My orthopaedic doctor is aware that I have MS and vaguely remembers a lecture on it in medical school, but has forgotten more about shoulder anatomy than I’ll ever know and that is exactly what I need/want. The list goes on and includes, my GP, physical therapists, ENT, and so on. The point is that each one knows and is an expert on, a part of me, but I know me.

With my progressive MS and level of disability, there is never a waking moment when I forget that I have this disease. You might say that it has my undivided attention. I’ll be the first to say that your MS isn’t my MS. Experiences, disease types, disability levels, etc, vary greatly, but if you have it in whatever way, shape, or form, you are sort of obligated to learn as much as you can about it. Not thinking about it, or bothering to learn about it, are not good options.

You are your own best advocate. So advocate.

Categories
Life with multiple sclerosis

Shouldering The Burden

It’s mine. So no copyright disclaimer needed.

So, I haven’t written in a couple weeks.

I started a Valentine’s Day post, but couldn’t make it work. I was trying to be funny about being diagnosed 8 years ago on Valentine’s Day, but it ended up as kind of a dark post and that wasn’t what I wanted. I’m sure there will be plenty of those, but I didn’t want to go that route on the 14th.

Next, I had a swallowing study and a visit with the speech therapist. Yeah, multiple sclerosis doesn’t stop with arm and leg muscles, so I’ve been choking more and more and having a weak cough doesn’t help clear my airway when I aspirate stuff. Of course I didn’t choke once during the barium swallow, so other than the barium drinks and coated snacks, including half of a cookie, it wasn’t a super productive experience. I did get a little device to strengthen my expiratory muscles so I can cough, etc forcefully. It’s a nifty little exhalation resistance device and seems to be working well. If it made trumpet, slide whistle, or whoopee cushion sounds (I have 3 little boys), it would be just about perfect.

A couple days later it was MRI time. My annual brain one (no new or active lesions) and both shoulders (not great reports, but I’ll get to that). I’m not claustrophobic and my hearing isn’t great, so as long as I have well placed ear plugs, I just go to sleep in there. I had planned on one long scan (and nap), but for a variety of reasons, they treated each body part as if it belonged to a different person and I had 3 scans with about 30 minutes in between.

My implanted baclofen pump is MRI safe and shuts itself off when it detects the magnetic field, then back on 10 minutes after it no longer detects it. Between MRI 1 and 2, I stayed in the MRI suite and apparently didn’t get far enough away, so the pump stayed off long enough to set off the alarm. It was the 2 tone, critical alarm, which sounds a bit like a European ambulance, and coincidentally, like any number of hospital alarms, so I didn’t even notice until I left to grab lunch before MRI 3. I was actually in the restroom when I realized that the beeping was coming from me. I noted the time and sure enough, it went off again 10 minutes later and 10 minutes after that and so on.

One of those times was in an elevator and the other passengers started to look around for the source of what was obviously an alarm before all turning to look at me. No one said anything, but you know it was just the embarrassment of having to ask if I was beeping that stopped them. I felt like a person compelled by shame to confess to farting on an elevator, “OK, it was me! That awful sound came out of me!!”.

None of us said anything, but I probably looked guilty enough that everyone knew it anyway. The perfect scenario would have been if someone had worked up the courage to ask and I had the wherewithal to stare back,wide eyed, and hoarsely whisper/croak, “Oh no!! Run!! Save yourselves!!”.

Then again, I bet the penalty for causing a panic on a Veteran’s Affairs hospital elevator is pretty stiff.

I haven’t completely lost my touch. The MRI techs were a little nervous about my pump anyway, so when I told them the alarm was going off, there was a little hand wringing and they wanted to know if they should do something, or call someone. I kept a nice, straight face and told them I was meeting the pump rep after the 3rd MRI anyway (standard procedure) and probably wouldn’t explode for an hour at least. This didn’t ease their minds at all, but my smirk was probably big enough to be seen on my head/brain scan.

Both are MRI images of my right shoulder

OK, I’ve digressed enough. My shoulders are not good….well the right one in particular. Both have been dislocated in the past, the left, just once, in the parachute incident I wrote about before and the right about 3 times, in way less exciting incidents. I knew the right one was getting worse but ignored it and had my bad knee and ankle fixed instead because they were my more important, weight bearing, joints…..right?

MS, thy name is irony,……or maybe mean spirited coincidence? I’m not sure how that works, but I am sure that turning my arms into my weight bearing, wheelchair using, transferring, etc, limbs, is just making my shoulder problems worse. I’ll post the MRI report at the end of this post, but the impression I get is that we’re past the point of more rehab and probably past the point of steroid injections too.

I’m afraid of what the ortho doc is going to say, but I guess it’s because I know what he, or she is going to say. I really can’t afford to let this get much worse, but I dread being down to one fully functional limb while I recover from whatever the “fix” is. I’m hoping it’s a minimally invasive arthroscopic clean out, debridment, cartilage shaving/planing surgery with no weeks of immobilization. One that I can move and rehab as much as I can stand after. I know “hope” isn’t a course of action, but I’m daring to hope anyway.

Here’s the report. Maybe I’m worried about nothing, but it doesn’t sound very cheery to me.

Findings:


Marrow: There is no bone contusion or fracture.


Acromioclavicular joint: There are severe degenerative
hypertrophic changes at the acromioclavicular joint with cystic change in the distal clavicle at the joint and bulky osteophytes extending inferiorly from the joint.


Subacromial and subdeltoid space: No significant collection of fluid in the subacromial or subdeltoid space.


Rotator cuff tendons: Tendinopathy supraspinatus tendon with low grade undersurface partial tear at the insertion site
posteriorly. Mild tendinopathy infraspinatus tendon. The
subscapularis tendon and teres minor tendon are unremarkable.


Rotator cuff muscles: Unremarkable. No atrophy or edema.


Glenoid labrum: There is a 0.6 x 0.7 x 0.9 cm para labral cyst
associated with the posterior superior glenoid labrum consistent with underlying labral tear. Possible labral tear at the junction of the anterior inferior labrum at the site of a probable small full-thickness cartilage defect.


Long head biceps tendon: Intact. Small amount of fluid within the extra-articular tendon sheath which could represent mild tenosynovitis or physiologic medication with small glenohumeral joint effusion present. Additionally, there small loose bodies/debris within the tendon sheath of the extra-articular long head biceps tendon.


Glenohumeral joint: There is mild thinning and irregularity of the glenoid cartilage with small full-thickness cartilage defect suspected at the anterior inferior glenoid labral junction. Additionally, there is full-thickness cartilage loss
anterior-inferior glenoid. There are multiple loose bodies within the inferior glenohumeral recess, the largest measuring roughly 1.2 x 0.8 x 0.6 cm. Small loose bodies are seen anterior to the glenoid, posterior to the subscapularis tendon. Additionally, there is a loose body within the subscapular recess measuring roughly 1 x 0.7 x 0.7 cm in diameter.


Incidental findings: None.

Categories
Background Life with multiple sclerosis

Pride & Practicality

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

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

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

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

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

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

pride/prīd/noun

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

dig·ni·ty/ˈdiɡnədē/noun

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

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

prac·ti·cal·i·ty/ˌpraktəˈkalədē/noun

1.the quality or state of being practical.

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

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

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

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

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

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

Categories
Life with multiple sclerosis

New Kitchen Appliances

Not my kitchen.
Image courtesy of geappliances.com

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

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

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

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

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

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

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

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

Categories
Background Life with multiple sclerosis

The Best Laid Plans

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

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

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

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

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

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

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

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

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

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

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

I hope I listen.

Categories
Life with multiple sclerosis

Friends And Enemies

“Pogo”, by Walt Kelly, 1971.

One of the worst mistakes you can make if you have MS, (so, of course, I make it a lot), is to compare your MS to someone else’s. Everybody’s experience is so different that sometimes I wonder if it’s even the same disease. Yes, I used “experience” deliberately, because I don’t just mean symptoms, or ability. I’m including how you’re perceived, treated, talked to, and so on.

I have an aggressive form of progressive multiple sclerosis, so it’s kind of hard to ever refer to myself as “fortunate”. In many ways, though, I suppose I am……….(far too lazy to search a thesaurus for an alternative word apparently)….so…..not unfortunate?

I don’t have an invisible illness, well not anymore and if I did, it wasn’t for long, because my time between a barely noticeable limp and a wheelchair was pretty short. It is very obvious that something is wrong with me, so I don’t get questioned for using a handicapped parking space, etc. Besides the handicapped placard, I have disabled veteran license plates, so usually, the only thing I find myself explaining is that I am not wounded, I just have a disabling disease.

I don’t really deal with questioning looks, or second guesses either; not the way other people with MS do and not from people that matter. That sounded harsh, but you know what I mean, right? Strangers may occasionaly look at me and wonder if I gave up too easily, or am not trying hard enough, but because of my background in Special Forces and the Rangers, family, friends, or aquaintances assume that I’m giving it my all. For the record, they’d be wrong sometimes, but still, they normally give me the benefit of the doubt. Really, the only person who second guesses me, or acts like I’m an inconvenience…….is…..me. I am my own worst enemy.

This past holiday season really drove the point home. At two Thanksgiving gatherings, family stepped in and made it possible for me to enter their homes in my wheelchair and be included. Later, right before Christmas, with the help of several friends, I got to go to a party that I seriously considered not going to because I was afraid of being a burden.

Am I a burden? In the sense that extra things had to be done to accomodate my disability…..yes, I suppose I am, but I’m starting to realize that I’m the only one who is afraid of being a burden, or inconvenience. At this point, anyone who didn’t want to be around me is long gone and I need to stop reflexively apologizing and show genuine gratitude for the people who want my company enough to go the extra mile to have it.

I don’t like being disabled by multiple sclerosis, but I am. I don’t like being treated like I’m disabled either. Maybe it’s just semantics, but my friends and family don’t. They somehow, accomodate my disabilities while treating me like……me. Or, to put it another way, they treat me like a loved one with a disability, but not like a disabled person. Hmm, I suppose I am fortunate after all.

I’m the one who treats me like I’m disabled and for some reason, the hardest one to convince to stop doing so.

I have met the enemy and he is me.

Categories
Life with multiple sclerosis

Walking Dreams

Photo: harshvardhanroy/Getty Images/iStockphoto

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

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

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

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

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

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

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

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

Categories
Background Life with multiple sclerosis

Hitting The Trees

“See those trees over there? That’s where I’m going”. (Photo Credit: U.S. Army)

Going to airborne school was the first step, the initial price of admission, to everything else I wanted to do in the Army. I went toward the end of my first 6 months in and did it for almost 20 years, but I never liked jumping (parachuting). I’m not phobic, but I’ve always been a little scared of heights and falling and falling from heights and hitting the ground after falling from heights. You’d think I’d have gotten used to, if not outright comfortable with it, but you’d be wrong. For me, the 100th jump was the same as the 1st. I looked out the open door of the aircraft and thought, “This is insane!!! Don’t do it you fool!!”, and then did it anyway, cursing my arms and legs for taking me out the door instead of obeying my rational, common sense, (ok…maybe a little hysterical), brain. 

They even sent me to jumpmaster school later on, where I learned to set up a drop zone, check other people’s parachutes before a jump, and send them out the door at the right time. They said it would make me more comfortable with jumping if I saw everything that went on behind the scenes. Instead, I learned everything that could go wrong, including some things that I’d never even considered before.

“Good news Ben, we’re sending you to jumpmaster school”.

“What?!, I hate jumping”.

“This will make you more comfortable with it”.

“No it won’t! This is a stupid idea, I don’t want to do it”.

“Too bad. You have to”.

(You know, come to think of it, that actually sums up a lot of my experience in the Army.)

All in all, the total of my experience was really pretty blase’. Aside from a few bruises, scrapes, and sore spots, the shoulder dislocation I wrote about a couple months ago was my only real  parachuting injury. I only ever had one malfunction, but it happened at night, so other than thinking it was taking my chute an awful long time to open and hitting the ground before I lowered my rucksack, I didn’t even know about it until someone else told me and obviously it worked itself out, so it hardly counts. The only other thing that sticks out in my mind is the one and only time I landed in the trees.

There’s some solid math that goes into setting up a drop zone, but that math is based on a number of factors that can change, like aircraft speed, wind speed, etc, so you plan the release point as best you can and then, if necessary, make a real world adjustment off of the first group of jumpers. On this particular occasion, I was in that first group of test dummie…..I mean jumpers. Actually, the whole group didn’t even get out of the plane. It was pretty obvious that we were exiting too close to the treeline on Luzon drop zone, so the jumpmaster stopped our little procession out the door right after the guy behind me. Five of us got out the door. The first three landed at the edge of the trees and the last two, of which I was one, landed in them. 

Photo from Google Maps 2021

I was already over the trees when my chute opened and I got control of my canopy. This was a round chute, but steerable….well, turnable anyway, and I steered hard for the grass. I may have even churned my legs like a cartoon character trying to run through the air back to the top of a cliff, but after a very short amount of time, it was very obvious what was about to happen, so I started to prepare for a tree landing. 

Mom, I know you’re reading this and I’d like to say that I handled the inevitable with all the grace and poise you taught me as a child, but the shameful truth is, your little boy cursed a blue streak going into those trees. The good news, if there is any, is that my vile language was said/shrieked in a very rapid and high pitched voice, so if anyone heard it on the ground, all they heard was something along the lines of, “Eeeeeeeeeeeeeeeeeeeeeeeeeesheeeheeeee!!!!” 

Despite my level of concern and even though I’d never used it before, I fell right back on the training we rehearsed before every jump. I kept my feet and knees tightly together, (on a scale of good to bad, straddling a tree branch is way down on the bad end) and rotated my hands and arms in front of my face just as my feet made contact with the trees. I took the top off of a small oak, where my canopy remained, then crashed into the side of a nearby pine and slid down its trunk to the ground. I got out of my harness and went to the edge of the treeline where I met a 1st Sergeant who asked if I was ok and helped me pull my parachute out of the tree.

“Was that you we heard from the other side of the drop zone?”

“Oh…..you heard my….war cry?”

“Well, we heard a cry, yes.”

In my customary, clumsy, fashion, I will now attempt to make a comparison to multiple sclerosis. When I was first diagnosed, I stood in the doorway, thought about how much I didn’t want to go through it and cursed my arms, legs, eyes, hands, etc for obeying the disease instead of my will. Once in the air, I tried to turn away and even did some desperate, comical antics to try to avoid what was coming. For the record, you do you. If it makes you feel better and it’s not dangerous, then who am I to criticize? You might be able to pedal your way through the air to a nice soft landing in the grass, I was not. Do me the same courtesy of not being critical please. My MS isn’t your MS. What works for you may not work for me and vice versa. Fortunately there are lessons from the MS community to fall back on and prepare you for crashing into the trees. If you know where to look, there may even be a sarcastic person or two to help you pull your chute out…..and hopefully not be too hard on you for cursing your uncontrollable misfortune as it happens.* 

Aside from maybe a neurology residency, there is no MSmaster school, except the schooling that each of us puts ourselves through in our quest to understand this disease. MS education can be a two edged sword. Like the jumpmaster course, it has certainly let me know everything that can go wrong. It also gives me hope that things can go right. Hope may not be a course of action, or something to base planning on for most things, but for MS, it’s sometimes all we have.    

*https://mskurmudgeonskorner.com/