Sunday, November 17, 2013

What's it like to have MS?

Perhaps a better title is ‘What’s it like right now for me to have MS?’  My MS symptoms change from week to week (or more lately, from minute to minute) as the disease presents itself differently.  Sometimes it’s hard for my friends and family to appreciate the full impact of my MS.  Do I need assistance with something?  Maybe just a little extra time?  Should they ignore my struggles and let me deal with it on my own?  Is this something that has nothing at all to do with MS (a cold dragging me down, a few drinks, or my charming personality)?  In the past, I grew frustrated when they couldn’t understand.  Now, I realize how difficult it is for me to know what this disease is doing to my body at the moment.  Just like I have no idea what my peers with MS are experiencing, I can’t imagine someone else trying to understand what is going on.  Sure, some of our symptoms are the same but it’s that special combination of effect, severity, timing and duration that makes every situation different.

With those disclaimers out of the way…what’s it like right now for me to have MS?  Many of my symptoms are unfamiliar ground, as I learn to live in a new body.  The truth, however, is that I’ve experienced most of these symptoms before.  Many of you have as well.  The issues I’ve experienced before are now the physical demonstrations of what MS is doing to my body.

Some of these may sound familiar to you:

·         My left arm sometimes doesn’t work very well (or at all).  I remember the same thing happening  when I was a younger man.  Back then it was a sort of tough guy pride from when I would go to the gym with my pals.  In the gym everything was a competition. The only way to “win” in the weight room was by lifting more weight for more reps.  If you did more, you won.  There weren’t physical prizes but that smug pride was worth more than gold.  Maybe a quick comment thrown into the conversation later that night when we all went out for some chicken wings and beer!  The problem came when you couldn’t even lift a chicken wing up to your mouth.  Your arms felt fine but they seemed to have a 400# weight holding them down.  That was the point when your win faded and your pals realized that you were spent.  Like any loving 22-year old male buddies would do, they laughed, flicked your sore bicep and threw fries at you!  They knew you’ll be back soon, but for the moment they were relishing in their “win”.  When this happens to me these days, my pal is Eleanor.  My 3-year old daughter watches me struggle to lift my fork to my face.  When I can’t, she asks “are you not feeling OK today, Daddy?”  “I’m OK, Ellie,” I tell her, “I just need a minute.”

·         My legs (mostly the left) have all sorts of challenges.  Foot drop, knee hyperextension and muscle spasms are all side effects of the damage to my nervous system and its ability to maintain coordinated control.  I experienced all of these, in one fashion or another, in my active pre-MS days.  Damage on the football field, the rugby pitch or the boxing ring was swift, violent and had many of the same side effects that I feel now.  Along with the injuries were sore muscles and painful leg cramps.  These issues came and went, maybe they slowed me for a bit, but I would work through the pain and get myself back into the game as soon as possible.  I’m still doing that, working through the pain and getting myself back into life.  The only difference now is that these ailments are a constant companion.  Time and rest don’t make them go away.
·         My right arm works fine, but I can’t really feel it.  I remember when I would lay on the sofa while watching TV or sleeping.  My arm would ‘fall asleep’ as I remained still.  After a while I would get up and move but my arm was still numb.  I could move it but couldn’t really feel what it was doing; I’d poke at it but still couldn’t feel anything.  As the blood started to better circulate in my arm I would start to get that pins-and-needles stinging sensation.  It was still numb and I couldn’t really feel outside touches but that awful, intense stinging was there!  There was nothing that you could do until it finally went away.  Mine hasn’t gone away in 14 years.

·         My speech pattern tends to slur, sometimes worse than others.  There is also the annoying habit of a stream of drool developing on the side of my mouth and sometimes I don’t notice it in time.  This classy scene is reminiscent of the late night condition that same group of young guys were in after one of those long nights of wings and beer (not me, of course).

·         When I was a kid, food “going down the wrong pipe“ was often a result of eating too fast at the table.  It tended to lead to a lecture on proper table manners.  These days aspiration of food into my lungs has an awkward, uncomfortable and potentially dangerous result.

·         Weakness in my left hand and arm is similar to my childhood memories of the first big snowfall of the year.  All the neighborhood kids would go out to play, building forts, having snowball fights, making snow angels and creating a good ol’ Frosty the Snowman!  Hours and hours out in the snow and ice was worth the price we would pay when we came back in with cold, wet gloves (if we cared to wear gloves at all).  It was a challenge to do anything, like grasping the door handle or unbuttoning your jacket.  I don’t think I ever tried it but sitting down and writing with frozen hands would have been pointless.  The hands would warm.  When they did that pins-and-needles stinging came on in full force!  Again…14 years and running.

·         Blurred vision is nothing new.  When I was a kid it was one of those magic pictures: stare at a photo of seemingly random dots and relax your eyes.  Your vision blurs but suddenly, a 3D image of a flower or cat would jump out at you.  Pretty cool, especially when no one else could see it.  It’s called an autostereogram, described as “the visual illusion of a three-dimensional scene within the human brain from an external two-dimensional image. In order to perceive 3D shapes in these autostereograms, one must overcome the normally automatic coordination between accommodation (focus) and vergence (angle of one's eyes).” (Wikipedia, the free encyclopedia,, November 2013).  I no longer have ‘automatic coordination’.  I’m just the opposite.  Now I have relaxed, blurred vision all the time.  I spend a lot of energy pulling those images together into crisp and clear 20/20 vision.  With a little bit of effort, I can do it most of the time.  The real challenge starts when my body can no longer hold that normally single three-dimensional scene.

So, you ask me what’s it like to have MS?  The answer is simple:
It’s like being a weight lifting, boxing, rugby playing athlete in my prime who sleeps a lot on the couch, parties like a rock star, wolfs his food down, builds snow forts and is the neighborhood champion at autostereograms.

So…you know…that’s cool!

Kevin Byrne - Portland, OR