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
