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.
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.
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!
Kevin Byrne - Portland, OR