Coping With Physical vs. Mental Health Conditions: Which is More Difficult?

My father has late-stage Lou Gehrig's disease. Actually, he's technically not my father since my stepfather legally became my father in an adult adoption a few years ago. But Stephen was my father for the first two years of my life, and I look a lot like him. One reason we moved from Connecticut to California was to be near him at the end of his life.


When he was first diagnosed with ALS about two and a half years ago, the only symptoms were some trouble walking and difficulty holding things. The doctors gave him only a few months to live before his lungs succumbed to the disease and stopped working.

In the beginning, I said, “Welcome to my world,” a lot, if only in my head, because many of his problems were similar to my Multiple Sclerosis. He stumbled; I stumbled. He dropped things; I dropped things. Etc. But since then I've stayed the same, probably due to the interferon medicine I've been taking since the onset of my MS.  Meanwhile his ALS has marched inexorably on, as it always does.

He always was a very active man, so I can only guess that having this particular disease is doubly difficult for him. He does, however, credit his decades of surfing and running with prolonging his life far beyond the few months the doctors expected.


The computer has kept him connected with other people and the world. There was a gap of time in between the loss of most of his fine motor ability and gaining an assistive computer that has a clickable keyboard on screen during which he could not even type his own emails. That was a rough period for him, as he already had lost the power of speech and was relying on email to communicate a great deal of the time.

I visit him as often as I can, on the Sausalito houseboat that he built virtually from the hull up. He has hospice care, so he's rarely in the nursing home. We communicate by the use of a laser pointer strapped to his eyeglasses and a chart on the wall that lists the alphabet and common words and word endings. It's emotionally difficult for me to visit him, but I think about how much harder it is for him and for my stepmother and half-brother.

I remember, about a year ago, coming back from our first visit to the houseboat since moving to California, I was depressed. (Not the clinical kind, but the temporary kind.) Stephen no longer could speak, not even in a whisper. His loss of the ability to communicate was a blow.

As we were walking down the dock to the parking lot, my husband and I had that conversation you always have when you find out that someone you know has a terminal disease.

“God, that's a terrible way to go,” he said.

“I know, “ I answered.

“How terrible to have your body betray you like that bit by bit,” he said.