Wednesday, May 31, 2017

Arms, and Other Inconsequential Ramblings of a Condemned Man

Let’s try an experiment. Trust me, I know what I’m doing. I write a blog.
Take 30-pound weight and hold it in one hand, using only the tips of your fingers. With your arm hanging by the side, your fingers are curled slightly, unable to fully extend (or you will drop the weight), yet you can’t quite curl them into a fist.
The test here is not to accomplish this feat, although it is tricky, but rather what can you do with your encumbered limb.
Try to live. Take a shot that getting out of bed, donning your slippers, walking the dog (heck, clip the leash to her collar), taking a shower, washing your hair, brushing your teeth, combing your hair, dressing (including buttoning your pants and zipping your zipper), putting on socks, tying your shoes. Do this all with your dominant arm, the one you have feeling and sensation in, not the arm you can move easily but have limited sense and control with.
This is the best experiment I have found to replicate my dilemma. The size of the added weight is a bit cumbersome, I’ll admit. A bulky weight can make tasks more difficult and dangerous; I bonked myself in the head trying to comb my hair…
Aside from the awkwardness introduced, this is the level of function, and difficulty, I have with my left arm. The eyesore hangs limp most of the time; my fingers can’t ball up but will not extend fully; everything I attempt feels as if I am fighting a 30-pound weight hanging by my fingertips; it is weak all the time, tires quickly, and continues to worsen. Because my nerves to not ‘fire’ in my arm, I cannot move it well; because I cannot move my arm well, I don’t use it as much; because I didn’t use my arm as much, it continues to weaken; because my arm continues to weaken, I cannot move it well; and so on.
No, I don’t get ‘credit’ for build the muscle with the extra weight, my arm just gets weaker with no weight at all.
Well, that just sucks.
I try my best to use my arm in normal activities as much as possible. Just today, I picked up a piece of paper from the floor all by myself, although I needed my right arm to pat myself on the back afterward.
My options are fairly limited right now. It’s bad, getting worse by the day as atrophy sets in. Best I can hope for is to maintain as much of the muscle tone and overall flexibility.
Use it or lose it…
My physical therapist shared an exercise regimen with that specific goal in mind, upper-body exercises using resistance bands or cable pulling machines in the gym. It’s a pretty good workout for my right side, pushing limits of my strength and range of motion. With the left, my body whimpers with the slightest amount of weight, down to and including zero. The looks I get are interesting. Sometimes, while standing in front of the exercise machine, performing a ‘split-stance single-arm cable chest press’ without any cable or weight, I just want to yell out, “What’s the matter? Have you never seen a man pumping air before?”
Nevertheless, my workouts continue, trying to reduce the rate of decay on my left side while strengthening my core and right side. I notice big changes for both. My dwindling, 12.5-inch left bicep versus my uncontrollable gorilla strength 15-inch right.
I need my left arm, I just wouldn’t feel right without it.

Weakness in MS, which results from deconditioning of unused muscles or damage to nerves that stimulate muscles, can be managed with rehabilitation strategies and the use of mobility aids and other assistive devices. (To this statement, I will add: sometimes the damage cannot be managed, and therefore must be compensated for with alternative options.)

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Tuesday, May 30, 2017

Memory, and Other Inconsequential Ramblings of a Condemned Man

One of the greatest elements of Bike MS is the opportunity to gather every year with the army of Team Amulet riders, acquaintances from the past joined with some new faces.
A few years ago, I met one of our new faces on the first day. If I had to guess, I figured she was one of the riders recruited by Brie. So, being the Mr. Outgoing Personality I am, I hopped over to introduce myself.
“High! Welcome to the team. I’m Kevin, Brie’s husband.”
Mr. Outgoing Personality shrunk to about 2’ 5” with her gentle response.
“Kevin, I’ve ridden on your team for the past three years. If you introduce yourself one more time, I’m going to smack you.” Points noted: we’ve met before; I’ve done this before; never forget your name is (I can’t remember).
Cognitive issues are prevalent in MS patients. I’m fortunate, in a sense, as my memory remains strong in most areas. I’m on the board of directors for three nonprofits, my financial analysis acumen rivals Warren Buffett. In fact, we differ in only two areas: $50 billion and the ability to remember the name of people we met five minutes prior.
Damn, I’m so close…
I am married to an outgoing ‘gotta meet new people’ person. My daughter is a social butterfly, who already has more close friends than I’ve accumulated in my lifetime. Once my dog gets a sniff of you, and she likes it, you are forever in her heart and mind. Then there’s me, the recluse who hates social gatherings. We went to a fundraiser for Eleanor’s school the other week, there were over 100 people at the event; I should have known 30, or more; at least 35 - 40 knew me; I met another 10 - 15; when I got there, I could name maybe 6 or 7; I think I forgot 1 or 2 names during the event, and left slightly more ignorant than when I arrived.
It’s not, “Yeah, I have trouble remembering people’s names.” It’s a therapist level, neurologist level condition. My regular doctors (I kind of remember their names) cannot pinpoint a specific cause/treatment. I have undergone a variety of tests with several Dr. WhatTheHellAreTheirNames; my retention and recall are superb, except for those gaps.
It’s terrifying, to stand in a familiar room and feel so disconnected. When we go out in my social circles (gatherings where innocent folk are damned to be classified in the same circle as I) Brie is never introduced to others by her rude, inconsiderate, jerk of a husband. She’s forced to announce herself and become acquainted with them on her own. I merely agree I’m rude while I scold myself, “Aaaah, that’s their name. Dammit, I should’ve remembered that. I’ll remember now,” which lasts, of course, about five minutes.
There is no pattern. Old friends, new friends, no matter. Coworkers, family members, neighbors, are all fair game. Long-term memory is better than short-term, so if you have known me for 45 years, hopefully, I’ll give you more than a, “Hey, ’Sup!” Unfortunately, that’s not a given. There are pockets in that broken pattern, some good, some bad.
I’m trapped in life on the peripheral, an unwanted man looking into a world only slightly familiar. There are days when it’s scary as hell to run into someone, a person I may know or should know, and have no clue what my relation is to the figure standing before me. Hopefully, I have an idea where we know each other (Eleanor’s school, old work, neighborhood), but just cannot recall your name.
So, the next time we run into each other (social event, the workplace, gathering of close family members), and I give you the, “Hey!!!... How’s it going?” please be kind. I'm not rude (intentionally), I'm not an ass (this time), I don’t think I’m above you (at the least not until I get my $50 billion). There is a good chance I just don’t remember who you are.

Cognitive Changes
Refers to a range of high-level brain functions affected in more than 50% of people with MS, including the ability to process incoming information, learn and remember new information, organize and problem-solve, focus attention and accurately perceive the environment.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Friday, May 26, 2017

Incontinence, and Other Inconsequential Ramblings of a Condemned Man

Once again, just the other day, I was Eleanor’s hero.
SUPER DADDY to the rescue; able to rescue a scared little girl in a single bound!
The poor kid had an accident overnight. She was distressed the next morning, trying to explain how she didn’t do anything wrong. I figured it was time to ‘fess up.
“Hey, Sweetie, it’s OK. It was just an accident; it happened to everyone when they’re growing up. I’ve had accidents, too.”
“Yep. I’ve had accidents outside, just walking around and I peed in my pants. It just happened sometimes.”
“Wow! How old were you when that happened?”
I really hope my daughter doesn’t have a poop accident. I don’t want to tell that story.

Bladder dysfunction, which occurs in at least 80% of people with MS, can usually be managed quite successfully with medications, fluid management, and intermittent self-catheterization.
Constipation is a particular concern among people with MS, as is loss of control of the bowels. Bowel issues can typically be managed through diet, adequate fluid intake, physical activity and medication.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Thursday, May 25, 2017

Numbness, and Other Inconsequential Ramblings of a Condemned Man

I lost my keys the other day. If they’re not in one of three pre-defined locations, my nightstand, the kitchen island, or my gym bag, a scavenger hunt is sure to ensue.
Brie gave me a handy Tile® chip for my key ring. Great concept.
Lost your keys?
Press locate on your phone app, a ring will alert you to the presence of your misplaced keys.
The problem is I only receive alerts when leaving the house, keys and phone both in hand, and I accidentally press the button on my Tile. My friendly phone rings, alerting me of its presence in my right hand. I can't feel it there, but, since I am staring at the damn phone, I’m already well aware of that fact.
 Why can't I just have a regular place to put my keys every time… like a nightstand, a kitchen island, or, maybe, a gym bag? Brie put my keys on the key-hook in our kitchen one time; I couldn’t find them for four hours.
This time, however, I need my keys immediately. With a halfhearted commitment to a fruitless effort, I activate the app on my phone. No beep, no chirp. This adventure begins… [cue slapstick music]
 Nightstand? Nope. Kitchen island? Sorry. Gym bag? Strike three!
Laundry hamper, gym bag, (yesterday's) pant pockets, dog bed, living room cushions, kitchen island, pant pockets (currently wearing), Ellie's room, nightstand, hallway, driveway, car (unlocked, still no keys), gym bag, nightstand. I surrender.
“They'll show up.”
The most optimistic justification for failure in the English language. I decide to pass the time with frivolous activities, hoping my keys will materialize. After cleaning up clutter for about 10 minutes, I grabbed my gym bag for relocation to its probably designated location on the floor.
My keys fell out.
I found them in the second to last place I looked.
And the third.
And the fifth.
 I'm still learning how to be disabled, hanging on to a former life in hopes my body will remember what the mind finds normal. “Stick my hand in the bag’s pocket and fish around for the keys.” Why wouldn't that work? I have three jingly keys, three rings, and a square Tile paperweight attached.
It doesn't work because I can't feel anything with my right hand. I adhere to routines nevertheless. Maybe I'll hear keys jingle; maybe those random spots on my hand, where sensations are occasionally detected, will appear and feel the cold metal. I'd prefer those two options over dumping junk and grime out, in desperate hopes of seeing keys atop the pile.
Great, more clutter.
I should get a Tile.

Numbness of the face, body, or extremities (arms and legs) is often the first symptom experienced by those eventually diagnosed as having MS.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Wednesday, May 24, 2017

Inconsequential Ramblings of a Condemned Man

“This is not going to end well for me, is it?” *Deadpool

As I face this incessant onslaught from my MS, there are but a few choices regarding my next move:
  • Roll over and give up.
  • Maintain a blind, nothing but rosy outlook.\
  • Keep fighting in the best way I know how, by telling a series of anecdotal stories, describing my shortcomings while battling MS, in a tone which best captures my pain and loss in such a way that I can maintain my loose grip on sanity: satire.

I like the last option, so that’s what I’ll do.

“You can make fun of disability! It’s not funny.”
“Bull, I think it’s hysterical, and I can prove it.” *Channeling my best George Carlin

So, join me in my adventure as I attempt to describe the suck, the pain, the loss, and the hilarity of life with MS.

You can follow my blog submitting your email on the main page, or you can subscribe to my blog feed here:
This way, you’ll be sure to get updates as they are posted.

Disclaimer: the pessimistic sarcasm presented in this “xxxx, and Other Inconsequential Ramblings of a Condemned Man” series is solely my own. Everyone’s experience is unique to their specific circumstances; not everyone finds this funny. Right now, for the preservation of my last few snippets of sanity, I don’t have any other option. Also, please don’t be mad at Brie because her husband is an ass.

♪♫♬ ‘Just like my mama said…’ ♩ ♬♫♪
*Drivin N Cryin

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR