February, 2022 - 18Disabled

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.

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.