Monday, November 14, 2011

I Drool (and other quirks of my MS)

Multiple Sclerosis affects my central nervous system, the system that controls everything my body does.  It can impact any part, though there are more commonly affected areas.  It’s pretty basic to see that my MS can impact just about anything I do. 

Some of the effects of my MS are severe:  vision symptoms like nystagmus (jerky eye movements) & internuclear ophthalmoplegia (lack of coordination between the two eyes) are some of the “sexier” symptoms I’ve battled.  Sexy may not be the word, maybe I should say they are some of the symptoms that are easier to talk about to people who aren’t familiar with MS.  More often, the symptoms most people associate with my MS are the motor symptoms.  The sensory loss in my hands and feet, with the occasional spasm.  The footdrop, stumbling or falling.  These are the things that leave obvious signs like bandages, patches or scars.

Then there are the other symptoms of my MS.  The symptoms where, if you see them, often the reaction is not
·         “I wonder what is wrong with his arm/hand/leg/eye”, or
·         “his MS is acting up” or
·         “he’s not doing well” 
Instead, these are the symptoms where the reaction to the casual observer is more of shock, humor, or disgust.

So, let me clear the air for anyone who has experienced some of these moments around me. 
I drool sometimes.  Often I don’t notice it until I have been drooling for a bit, and usually by that time there is a string of drool on my chin or shirt.  My daughter is now 18 months old and I am proud to say that (most of the time) she drools more than I do.  She’s getting better; I seem to be getting worse.
I slur.  In the middle of the day at work this can often go unnoticed, or brushed off.  There is the occasional look of “what the heck is the matter with him?”  Later at night, at a restaurant, or at any social activity the thought is usually different.  “He’s drunk” is a common reaction.  Mix the drool with a little slurring and most people think “I am plastered.”
I have bladder control problems.  I run to the bathroom…a lot .  I have a continuous fear of peeing my pants.  This may be the most embarrassing symptom and it is definitely the one that I try hardest to control.  Sometimes I succeed and other times I fail.  We’re going to start potty training for our daughter next week – I’m jealous that she’ll get it under control whereas I probably will not. 
The worst time can be the perfect storm of these symptoms.  So if you see me out somewhere and I am slurring a bit, with a little drool stain on my shirt and a slight pee-stain on my slacks, let me apologize and explain in advance:
I’m not drunk.  I have MS.

I do these silly things often.  Some days are better than others.  It is more than a little inconvenient and often embarrassing.  I try to manage these symptoms but if I fail at times, my options are pretty limited.  I just move on.  I don’t expect much sympathy and I rarely apologize.  I just want people to know and maybe understand a little bit better.
…if you see me just remember that a little humor is still appreciated (“Hey, Kevin!  You and your daughter are both drooling again….I think you got her beat this round!”).

Kevin Byrne - Portland, OR

Tuesday, November 1, 2011

Spa Day at the VA

November 1st.  Today started out much like every day seems to start lately. 
·         4 AM was the first wakeup thanks to Eleanor, 18 months old and with little concern for Dad getting his beauty sleep.  Fortunately I was able to fall back asleep..
·         5 AM was the next wakeup.  This time let’s blame my MS, my recovering broken leg, my pending 40th birthday and every other reason my body tingles and hurts all the time.  Now that I’m awake my brain starts thinking about everything that needs to happen to start out my day.
·         I managed to stay in bed until 6 AM.  That was barely enough time to get everything done in time: prepare Ellie’s breakfast (Brie has wakeup and dress today), prepare my breakfast, walk and feed our loyal pup Monte!  Once all my chores are done for the day I dash out of the house for my car and the quick trip to work.
·         7 AM and I am already two cups of coffee into the day perusing my work emails and forming a plan for the day.  9 open contract negotiations, 32 open and active purchasing contracts, 2 new-hires still under training and a few, well, let’s call them “problems”.  It is going to definitely be one of those days!

Yep, this seems like every other day.  It can get rather monotonous sometimes; lately it has grown close to overwhelming.  Nothing better to do now than just put my head down and work.  I definitely need to make headway on some of these projects.

A few hours later and I’m really in a groove.  It’s a good thing that I love my job, and coffee (5 cups down now).  10 AM and my computer calendar pops up with an appointment reminder.  These days everything in my hectic world outside of “standard workday chaos” is carefully planned and scheduled on my calendar.  Synced with my computer and my cell phone, if it isn’t on the calendar then it probably won’t happen.  That calendar is my lifeline…

I look at the appointment reminder, 11:00 AM: VA Hospital.  Crap.  Now is not the time.  I have spent way too much time lately in hospitals lately, at the VA and elsewhere.  I broke my leg in June and that caused a flurry of ER visits, surgeries and follow ups.  I would up in the ER again in September, this time from a leg infection possibly due to my MS drug injections.  Multiple hospital visits for this one finally brought the infection under control without surgery.  After 12 years and two threatening leg infections I am at a crossroads; evaluations and test to see if I am a candidate for a new drug treatment.  Blood tests, eye tests, doctor visits upon doctor visits.  I don’t even remember what they all are anymore (thank goodness they are on my calendar).  I open the reminder to see what is scheduled.
MRI – 2nd Floor Imaging

Woo Hoo!  My topsy-turvy, hectic day just took a turn for the better.  Relaxation and spa-like pampering awaits me.

Let me explain myself a bit.  I love MRIs.  The humming of the imaging machine is perfect for me.  It’s so soothing to listen to the rhythmic pounding that I actually lose every other thought as I enjoy that beat, at the same time trying to imagine what the next sequence will sound like.  At that point, there are no worries in the world; just that beautiful beat.

Now for those of you who have never experienced and MRI (Magnetic Resonance Imaging) let me explain.  An MRI uses a magnetic field and radio frequencies to align the atoms in the body.  The machine reads and measures these alignments to form the images that are your body.  MS and MRIs go together.  It’s one of the best ways to see ‘activity’, better known as the damaging effects of this disease on my nervous system.  That’s where my technical understanding of the machine stops.  Beyond that, it’s just so wonderful!

Now there are many who dislike MRIs for various reasons.  Let me explain why it is like a day at the spa for me:
First, the noise.  It’s loud, too loud for some.  For me the sequential cracking, clicking and beeping are just so soothing.  To ease the noise a bit you do wear ear protection, but it’s still loud enough for an old helicopter maintenance officer who tends to think “if it’s not making a lot of noise, it’s broken.”

Now the small enclosed space inside the MRI machine can be claustrophobic to some.  Add the little cage that demobilizes your head and it can be overwhelming to some.  .  Not me though.  All they have done is taken away every bit of visual stimulation.  There’s nothing at all out there to look at so just close your eyes and lose yourself in those rhythmic harmonics…

The Imaging Floor of the VA truly is a day spa.  Most every patient in the waiting area is there for a scheduled one-on-one appointment.  The machines are expensive and in strong demand.  There’s not a lot of waiting around; get ‘em in and get ‘em through!  With the typical professional care I see throughout the VA, my paperwork is processed quickly.  I didn’t even have time to find an interesting magazine to read before I was called back.

A quick change into some comfy pajamas and I am whisked into the imaging room.  The room is sparsely decorated, except for the big magnet over the table I need to lay on.  Any angst that I may feel is immediately diffused by the imaging technician who talks me through everything that I need to do.
·         “Lay down here and put your head up this way.  Scoot your head up a bit.  That’s prefect.” (I love the praise!)
·         “Here are some ear plugs and ear protection.” (I love the concern for my safety)
·         “It’s kept a little chilly in here.  Would you like a blanket?” (They offer me a blanket…then tucked me in, all; comfy and cozy!!!)

After this is 45 minutes of sheer bliss and relaxation.  Granted, I could do without the needle injection of contrast halfway through.  That, however, is a small price to pay for the most relaxing spa treatment that I could think of.  At the end of the session, when they awaken me by sliding my bed out from the MRI, my only wish is that they would slide me back in for another round.

But alas, the spa treatment is over.  I follow up my wonderful VA experience with a delicious meal at the 1st Floor Canteen (their pizza is my other hospital decadence…but that’s another story).  After that I am back to work.  Every hectic issue is still there waiting for me, plus a few more.  Not a problem today!  I am calm, relaxed and clear headed.  After a morning like that I am ready and able to tackle anything that comes my way.

All the time I will be looking forward to my next treatment!  Nothing beats Spa Day at the VA!

Kevin Byrne - Portland, OR