ALS* Symptoms Manifest:

Swallowing and Talking are a Challenge

“I have something to tell you.” photo by Mary B

10

2004

The first sign that there is cause for concern about Fred’s health creeps up on the family, but most likely not on Fred. Fred first mentions that he has trouble swallowing when we stop at a little diner for lunch with our daughter, Clare. We are celebrating Clare’s senior year of high school and our morning visit to the college she will attend in the fall.

We tell Clare how proud we are and raise our iced teas to the home stretch and Clare’s future. While we’re eating, Fred chokes on his steak and casually mentions that he is having a bit of trouble swallowing. Much later, Clare remembers this incident. Several weeks later, our son, just home from a tour of duty with the US Army–asks me if his father has started drinking while he was gone.

Thankfully, I can reply — “No that’s a habit your dad has never acquired or cultivated, why?” I query.

“He’s slurring his words.”

Drinking would have been a preferable cause for Fred’s slurred words and choking.

Finally, Fred confesses that he is having trouble calling out directions at work. As the foreman for a local tree company, he has to call out to men in trees, in trucks, and on the ground. He is struggling to form words and call out.

So, there it is — Amyotrophic Lateral Sclerosis (ALS). It has hovered in the wings — like the vultures gliding and swooping above the already dead, reminding us of our mortality — since Fred’s father’s death from ALS 18 years before.

Identifying ALS 2004

At this time — the only way to identify ALS is to rule out stroke, Lyme’s disease, tumors, and various other afflictions whose symptoms may mimic ALS. There is a bone marrow test that is very painful and not one hundred percent accurate. Fred’s mother counsels us against this; she recalls Fred’s father’s pain and the outcome, which did not change the course of events way back when.

All of the diseases and afflictions whose symptoms mimic ALS are perversely preferable because there are cures and medications that offer hope for almost all of them. Not so with ALS — at the time, there is no cure, operation, medication, meditation that will cure this strange and insidious disease, but off we go for brain scans, blood work, and x-rays to rule out anything else that might be causing Fred’s more frequent choking and slurred speech — acts of faith and hope. After the cat scan of Fred’s brain, the doctor tells us that there are no visible tumors. He says it as if we should be relieved.

Fred with his usual humor says “Are you sure there isn’t some small tumor hiding out and causing all of this” — a tumor — yes! So much better. But there is no tumor and as my son would say to me frequently throughout this ordeal — “Soldier on,” and we did. Putting one foot in front of the other for as long as we could, gathering a retinue of machinery and technology along the way.

Beware the Jabberwock, my son! / The jaws that bite the claws that catch!

*Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s disease, is a fatal, progressive neurological disorder that attacks nerve cells (motor neurons) controlling voluntary muscles, causing weakness, twitching, and eventual paralysis, as the brain loses the ability to initiate movement, leading to difficulties with walking, speaking, swallowing, and breathing, with no cure, though treatments manage symptoms and prolong life, often with respiratory support.