Rethinking A.L.S.

Yankee Slugger Lou Gehrig

At first I didn’t notice the jelly feeling about my legs.  They were wobbly, like I had been skiing downhill without stopping, only I hadn’t been skiing I was only sitting down.

Then my skin felt crawly in places.  I swatted the ant that wasn’t an ant after all.  My skin was crawling on its own.  But it was the feeling my legs might not continue to support me that sent me to the doctor for an explanation I was certain would be simple and benign.   Side effects of a virus?  A household cleaning product I should stop using?  A little too many paint fumes?  Once I knew the source I also knew I could avoid it and these odd symptoms would go away.

It’s always a bad sign when the doctor is very chatty at the beginning of an exam and silent at the end.  The neurologist hammered away at all the pathways and found nothing particularly noteworthy.  We talked about the weather, friends we had in common and the news business.  It was only after he pulled out a machine which stuck blunt metal pins into my muscles that his demeanor changed.  With the first plunge of the needle into my left leg the machine emitted a crackling sound, like a geiger counter finding metal in the ground.  Did I injure my back, he asked.  The answer was no.  He stuck me again.  Same thing.  More crackling noise.  That test, called an EMG, is supposed to be silent.   The sound of static means nerves are dying.  When nerves can’t power muscles, the muscles waste away.  Paralysis eventually follows.

Isolated nerve damage such as a back injury will sound noisy in one place on the body.  When the noise occurs everywhere the diagnosis is often A.L.S. and that’s what we heard in the doctor’s office that day, the noise in me was everywhere.  The neurologist seemed so sad.  I on the other hand remained upbeat and confident.  At least it wasn’t cancer.   And then I went home and started reading about A.L.S.  I would have preferred the cancer.

There is no cure for A.L.S.  Its victims become weaker and weaker until they cannot move.  Eventually the muscles that power the lungs stop working and patients suffocate to death.  The cruelest part of the disease is the brain remains active and strong.  An A.L.S. patient is aware right till the end what is happening to him.

For the next year I went through a catalog of testing; MRI’s, blood work, more EMGs.  I enrolled in the A.L.S. clinic in Syracuse, one of only two in the entire state at the time.  People in Buffalo or the Adiondacks must drive hours for their appointments here or in New York City.  I only drove five minutes from my home in the Syracuse University neighborhood which helped me to care for my four young children and to hold down my job.  I never missed a day of work trying to figure this thing out, nor a bedtime story for the kids, though for many months I was highly distracted from everything.

I’d like to tell you they made the wrong diagnosis and what I had was some other, more acceptable disease, or they offered up some treatment that worked.  In truth, as the year progressed, my symptoms got no worse and with A.L.S. the  symptoms always do.  At every appointment at the A.L.S. clinic in Syracuse I seemed to be getting a little stronger.  I eventually stopped going, mystery unsolved. That was nine years ago.

This week there is stunning new information about A.L.S..  Scientists now believe some of the cases aren’t A.L.S. at all.  In fact, the most famous A.L.S. patient, Yankee Great Lou Gehrig, might not have had the disease to which he gave his name.  Researchers now say that repeated concussions can prompt a disease of the brain that mimics amytropic lateral sclerosis, which explains why a disproportionate number of military veterans and athletes develop A.L.S. later in life.   Gehrig himself had several concussions, and his 2,130-game run remains the benchmark for playing hurt.  Today athletes are forced to recover from concussion before resuming play.

This does not explain all A.L.S. cases but it is the first time that some patients can point to a catalyst.  Once a cause is identified, the search for a treatment can begin.

On my last appointment with Dr. Burk Jubelt, the upstate expert on A.L.S., I was told I probably have some slow-progressing neurological something or other.  So much about the way nerves power the muscles is still unknown to science and there are thousands, perhaps millions of little afflictions like mine that become bothersome but not life-threatening.   I attributed my “recovery” to willing the disease away, or at least, willing it at bay.  I was quite accepting of my fate but I didn’t believe God would do that to my children.  Life expectancy with A.L.S. is three to five years.  Christian would have been 13 when he lost his mother.

Lucky for him I’m still around to nag him to take out the trash and empty the dishwasher.

Tagged as: A.L.S. Syracuse, Lou Gehrig