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

www.brieandkevin.com

Spa Day at the VA

November 1^st.  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 40^th 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 – 2^nd 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 1^st 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

www.brieandkevin.com

Decisions

When I was diagnosed with Multiple Sclerosis in 1999 I had to scour literature to find the answer to my biggest questions: what the heck is Multiple Sclerosis and what is in store for me now/next/tomorrow/later on?  The internet and advocacy groups online became the greatest resources for this scared Captain serving in Wonju, Korea.  I had to understand what was happening to my body and I had to make decisions about what to do next.

I stumbled along.  I was lost and felt alone and afraid.  I had some support but most of my decisions felt like I was throwing a dart while blindfolded: where it will go was anyone’s guess.  Sure, there were some setbacks but overall everything somehow progressed.

Fast forward 12 years later.  I have the most amazing care and support network that I could ever ask for.  I have a loving wife who knows more about MS and its effect on me than I do most of the time.  My providers at the VA hospital know every detail of my progression and take the time to ensure the best care possible.  Advocacy groups like the National MS Society have become such a close knit group that they, along with my other friends and family, provide the strength and support I need every day.  All that plus a beautiful baby daughter and a kick-ass dog give me every reason I need to get up every day and keep moving.

Where does that leave me today?  Feeling alone and afraid.  I have a ton of support but some of my decisions still feel like I am throwing a dart while blindfolded: where it will go is anyone’s guess.

The tough decisions never get any easier.

I have been on Avonex for close to 12 years now.  A good run by any medical standard, amazing by MS standards.  For the most part my body has dealt with the medication well.  Some sleepless nights…a few tough injections (I still hate needles!)…some occasional concerns (what is bilirubin and why is that an issue in my liver?).  Oh yeah, then there was the infection that developed in my leg back in 2007 and I almost lost my leg.  That was a rough year but fortunately it was a long time ago.  All that remains from that battle are a few deep scars running up my left leg.  A one-in-a-million infection that developed from taking my Avonex.

Make that two-in-a-million.  I am sitting here three weeks into the exact same issue in the other leg.  .  The only difference now is that the VA team is trying to jump on it before everything gets out of hand.  I’m currently taking 25 pills a day (on top of my weekly injections!) in hopes of preventing the leg filleting that occurred four years ago. 

So the obvious issue that comes to light is now my injection.  The first deep muscle infection is a fluke, the second is a pattern.  My neurology team wants to consider changing my medication.  It may be time to move on from my old friend Avonex.

The viable option to consider: Tysabri.  Once a month infusion, that’s nice.  Strong improvement on fighting the disease progression, another plus.  The drawback?  PML: progressive multifocal leukoencephalopathy.  What is it?  Besides being impossible for me to pronounce it’s a viral infection of the brain that usually leads to death or severe disability.   According to the latest figures, the overall risk of PML is estimated to be 1.66 per 1000 patients.

Great. 

It will take close to two months to fully evaluate me and determine if I am a viable candidate for Tysabri.  During that time I will have blood tests, MRIs and numerous consultations at the VA.  During this whole time, I sit here and contemplate me next glorious decision:

• Switch to Tysabri – and run the gamble of PML
• Remain on Avonex – and run the gamble of a 3^rd deep muscle infection
• Stop the treatment altogether – and run every MS risk imaginable (including incurring my wife’s wrath). 

The tough decisions never get any easier.

                To Be Continued…..

Kevin Byrne - Portland, OR

www.brieandkevin.com

Fate, Circumstance and MS

On a cold September day in Korea in 1999 I was diagnosed with Multiple Sclerosis.  From that day on, absolutely everything in my life changed forever.  First there was the toll on my body.  Sometimes the damage comes and goes, some damage is always there and some damage just gets worse.  Regardless of what those damaging effects are at the moment, my MS is always there: my hands, arms, legs, eyes….  What I have “gained” from MS is always there with me, one way or another.

Quickly following what I gained from MS was what I lost.  The first loss was immediate: I would never fly again.  That was certain.  Slowly, more certainties would unfold.  My time in command was cut short and by June 2000 I was evacuated back to the States.  Feeling dazed and confused ,I said one final goodbye to the soldiers of Delta Troop, 1/6 Cavalry (Darkhorse!).

 “Don’t you get angry at what MS has done to you?”

I have never answered that question

 “Don’t you miss the Army?”

Nor have I answered that one

 “Don’t you miss flying?”

I especially haven’t answered that one

I don’t think of myself as a superstitious man.  I do not believe in fate and I surely don’t think that things are destined to happen in any one certain way.  Everyone I know and everything I have in my life is in my life because of some series of events in my past.  Maybe I caused those events; maybe I am just an ‘effect’ of other circumstances.  Regardless, I am here today because of what happened in the past.

Someday we will know more about those circumstances and events that cause Multiple Sclerosis.  We’ll learn more about the cause and develop ways to defeat the disease or prevent it outright.  In the meantime, we’ll work on ways to treat the disease and its effects on our bodies.  Regardless, I will forever have the effects that MS caused on my life.

In 2000 I returned to the United States to build my new life with MS.  This was only somewhat successful and it often felt like one step forward, two steps back.    Many of those steps were damaging both physically and emotionally.  By 2003, my MS had gotten the better of my physical and emotional self and I landed in Delaware for treatment at the Wilmington VA Medical Center.  Slowly but surely my body regained its strength and stability; the rest of me soon followed.

I met Brie in 2004; we married in 2006 and moved out west to build a home in Portland, Oregon, the following year.  Eleanor Rogue was born in 2010.  A strange series of events, circumstances and actions have molded the three of us into the perfect family.

There is no was that these events would have ever occurred had I not been diagnosed with Multiple Sclerosis on a cold September day in Korea in 1999.

“Don’t you get angry at what MS has done to you?”

Yes, I get angry sometimes.  Yes, I miss my Army days.  Yes, I do miss flying. 

I never answered these questions before now, mostly for fear of how I would react if I ever admitted that I missed the things I was forced out of because of my MS.  That’s a foolish fear on my part.  So, yes, I do miss it. 

I have a beautiful, strong woman who loves me and will be standing by my side supporting me every step of the way.  I have a beautiful little girl just 16 months old who wins my heart over and over every time she looks at me.  There is no way I would be in this exact place without every step taken before.

Do I wish that anything was different?

Not at all.

Kevin Byrne - Portland, OR

www.brieandkevin.com

Limitations

Limitations

Oh, how I hate being told that I cannot do something!

Maybe it’s the snotty little kid in me who hasn’t quite grown up yet and probably never will.  Maybe it’s the old Air Cav pilot in me (who hasn’t quite grown up yet and probably never will!). 

·         “You can’t do that because of your MS”

·         “You shouldn’t do that because of your MS”

·         “Because of your MS, it would be best if you didn’t do that”

One of my biggest frustrations with MS is often the reaction of others. Well intended, and usually quite warranted, the reactions are just not what I want to hear under any circumstance.  I have ignored restrictions, pleaded for reconsideration, even snapped back a little when I was told that I could not or should not do something because of this disease.  No one is safe from my stubborn push back when they try to place limitations on me. 

In fact, there is only one who can come close to convincing me to accept some of those eventual limits of Multiple Sclerosis….my MS.  My MS doesn’t tell me I should not do something.  My MS ‘gently but sternly’ reminds me that I should not do something.  If I continue or push back or go too hard, my MS will show me that I cannot do something.  It is a constant game that we play, my MS and me.  Every day I push to show myself and my MS I can go further without issue.  Every day my MS is following me and reminding me that it’s still there ready to push back. 

My MS will convince me of some of my limitations, but only after hard fought battles.  Sometimes I win and gain freedom, dexterity and mobility.  Sometimes my MS wins and sets me back a bit.  There are no alternatives (yet) to this dance back and forth.  Without a cure for MS my only other choice would be to sit back and never push my body beyond the pain and limitation.  That’s not an option in my book.

And so go again and again!

We danced back in June on Mount Rainier.  I pushed my MS up to Disappointment Cleaver before finally conceding that my balance and gait issues were too much to go further.  My MS may have won the battle of the last 2,111 feet but I won the first 12,300!

A few days later we were at it again for a charity MS Mud Run.  10K of muddy obstacles to climb over, under and through.  I won that round and celebrated with a smug victory grin!

I know that I will have to constantly battle my MS.  I accept that.  In some sense I even look forward to the next battle; again that old Air Cav pilot in me!  I definitely don’t win them all but every victory, whether on the mountain, in the mud or walking down the street, will give me the energy to fight through the next loss….

MS gained the upper hand in our latest round.  I now accept my limitation that because of my MS, and the issues with balance and gait, I should never again go roller skating.  I fell, broke my leg and will need a while to rehab back to health.  You win, MS.  You can have roller skating.  I’ll keep the mountain, the mud and walking down the street!

Kevin Byrne - Portland, OR

www.brieandkevin.com

It will never stop…nor will we

It will never quit…nor will we

This is why we fight!

Tools for Rewiring My Body

In 2010 I witnessed the first ‘medical miracle’ in my battle with Multiple Sclerosis!  My 8-month old daughter did what no other treatment or drug could accomplish: Eleanor forced my body to overcome some of the permanent nerve damage caused by MS.  My realization was pretty low-keyed, but for the first time absolutely everything in my life changed…again.

That was then…

Let me start from the beginning.  When I was first diagnosed with this disease in 1999, my symptoms followed a path that is all-too-familiar to the MS community:

• Spotty vision loss/blurriness
• Numbness and pain in the hands, feet, arms and legs
• Coordination, control and balance issues

Most of the major symptoms come and go on random cues.  Sometimes they are better than average, sometimes worse.  The random nature of the disease is often its defining characteristic.  “What will happen to my body when I wake up tomorrow?”  That question has been answered for me in some frightening ways over the last 12 years.

                                                                                  

There are some effects that never go away.  The numbness and tingling mixed with the loss of feeling and control are always there on my right side.  When I retired from the Army, I was classified with “a 60% loss in my right chest and arm.”  I can’t really quantify a “60% loss.”  I have the strength, but the coordination, feeling and control isn’t there so I just cannot make my arm do the things that I want it to do.  Simple tasks like holding on to keys, books or Monte’s dog leash can frustrate me beyond belief.  My inability to perform some other tasks can be a bit more personally heartbreaking.  Riding a bicycle any long distance became hazardous when I lost the ability to hold on to the handlebars the whole time!  Holding on to the handle bars ‘most of the time’ is not a good option…  Other tasks are hampered by ‘sudden’ reactions that I can’t control, like crushing a glass cup in my hand or grabbing a frying pan (without reacting to the fact that it had been on a hot burner!). 

My silly medical summary…

I generally don’t know what I can’t do because just how much I can’t do is always a question.

• I can’t feel it but I can hold something in my hand…usually…as long as I watch my hand.
• I can ride a bicycle…usually…as long as I focus and concentrate on holding on.
• I can type, use hand tools and drive…usually…as long as I concentrate and watch what my hand is doing.

My challenge comes when I don’t focus on my hand for that split second.  That’s when I drop, break or lose whatever it was that used to be in my hand.

How much use have I lost?  I don’t know for sure.  A lot seems like a rather unscientific measuring stick.  When I go to see my neurologists they will test me and measure my disability.  How to they capture and quantify the results?  Again, I don’t know for sure.  Mostly my tests are the standard battery to evaluate my motor, sensory, coordination and gait (and the make me feel like I’m having a field sobriety test!):

• Pinpricks are used to test the response to pain and compare the response in different parts or opposite sides of my body.
• A cold or warm object may be used to test the sensation of temperature.
• I also may be asked to identify objects by grasping them with my eyes closed or identify numbers or letters traced on my body.

• The neurologist may ask me to move my finger from my nose to the neurologist's finger, going back and forth from nose to finger, touching the tip of each.
• I may be asked to tap my fingers together quickly in a coordinated fashion or move my hands one on top of the other, back and forth, as smoothly as I can.
• …and there are many more, but my favorite ‘field sobriety test’ is the Finger Dexterity Exam
• Touch the thumb of my selected hand to each finger tip starting with the index finger and moving toward the pinkie.  As soon as I touch the pinkie I must immediately execute the test in reverse, doing this over and over until the doctor is satisfied.

I guess they evaluate my 60% loss when I horribly fail my Finger Dexterity Exam or poke myself in the eye while trying to touch my nose!  These tests continue to be a source of discouragement as I’ve watched my performance degrade year after year.

This is now…

Picture the scene: a late night relaxing after a busy day this past December.  Brie and I had put Eleanor down for the night; Brie was headed off to bed herself.  I wasn’t quite ready to go to sleep so I thought I’d unwind in front of the TV down in the basement den.  A quiet evening for all!

Shortly after settling down Brie was startled by my yelling for her!  She bolted down the two flights of stairs to see what was wrong, only to find me sitting on the sofa staring at my hand wide-eyed.  “Look at this” was all that I could mutter as I demonstrated the Finger Dexterity Exam for my wife.

1, 2, 3, 4.  4, 3, 2, 1.  1, 2, 3, 4.  4, 3, 2, 1.  1, 2, 3, 4.  4, 3, 2, 1. 

Flawless

I sat there in amazement watching my hands dance around.  It was if I learned to do this for the very first time.  In truth, I had these talents for the first 27 years of my life.  It was just the last 12 where I lost the ability touch my thumb to fingertips smoothly, if at all.

“Look at this”

“That is great, hon.  Are you OK?”

“Yeah, I’m fine….but look at this!”

“I’m going back to bed”

I guess Brie was right.  Finger tapping isn’t necessarily the most exciting spectator sport to watch.  I just couldn’t stop tapping in amazement.  For the next hour and a half I sat downstairs and stared in amazement as my fingers bumped against my thumb over and over and over (a marathon I would regret when I awoke the next morning with another new sensation – sore muscles!).

Rerouting signals along the neural highway

So what happened to my hand that night?  Much like the rest of my MS experiences, I generally don’t know what happened.  What I do know is that I have new found mobility and coordination in my hand.  Why?

                                                                                                                     

My search for answers over the last month led me to numerous medical journal articles about how the brain overcomes damage.  One great article summarizing these studies was written by Matt Ford for Ars Technica titled “Rerouting signals along the neural highway.”  Matt summarized research that “found that neural pathways will re-organize themselves to find a way for motor control signals to reach their destinations, even when an injury in the spinal cord—which represents the most direct route—blocks the most efficient path.”  In my case, the damage on my body from Multiple Sclerosis destroyed my ability to execute commands like ‘move my right pinkie.’  In response to that, my body built a new ‘move my right pinkie’ command that pretty much works with the same result as the old one.

Pretty much the same, but not quite.  It really is an odd sensation.  I cannot feel my hand and fingers any more than I could before.  When I tap the fingers in my right (bad) hand and mirror the action in my left (good) hand, the motions are identical but the efforts that go into making these motions are completely different between the two sides.  ‘Move my right pinky’ is not the same command as ‘Move my left pinky’ anymore.  Nevertheless, it works!  I have spent the last month trying to learn skills that have been long since forgotten on my right side.  I’m a 39 year old man learning how to dribble a basketball, use scissors and tap out tunes on our piano.  I won’t win any talent competitions any time soon but the mere fact that I can do these tasks amazes me.  It has been so long since I have had this coordination that I have completely forgotten what some of those sensations are like.  I don’t really miss it when I see someone play notes on a piano with both hands.  It is hard to miss something when you can’t remember what it was ever like in the first place.  I just look on in amazement at a skill that couldn’t even imaging accomplishing. 

~Besides, I never could play the piano in the first place!  This new found talent was my catalyst for learning “Chopsticks” to play for Eleanor.

Eleanor.

She is the reason for rerouting signals along my neural highway.  Her birth on April 28, 2010, changed everything in our lives in more ways than I could have ever imagined.  I don’t have the option to be clumsy with my daughter.  Every time I am around Ellie, words like dropping, breaking, crushing fill my head with fear; fear that I will do the same to her that I have done countless other times to objects, other people and myself.  The only other option would be to avoid those everyday tasks; to avoid a full life with my daughter.  That can’t happen either.  To miss out on holding, bathing, dressing, feeding and playing with my daughter would be my worst loss yet.  With none of the available ‘options’ really options at all my brain did the only thing that it could.  It remapped.

My fears and concerns are still there every time I hold Ellie.  I am always cautious but I am always there. 

• For the first time, my future is looking brighter!
• For the first time, my changes are moving in a positive direction…improvement! 

All of this is happening for the first time since I first woke up with numbness and pain that quickly led to three words that changed my life forever: you have MS. 

• For the first time, I am excited to wonder what will happen to my body when I wake up tomorrow?

Thank you, Ellie!

Love,

Daddy

Kevin Byrne - Portland, OR

www.brieandkevin.com