Inheriting ALS: An Intimate Look At The Reality Of Familial ALS

By: Emma Comery, SimpliHere

My parents have this small blue throw pillow sitting on their living room couch. It reads, My family tree is full of nuts. A gift from a cousin — a charming, self-deprecating little novelty. My mind flashes back to that pillow again and again while I’m talking to Catherine Kettner, ALS patient, caregiver, and advocate.

Because if Catherine Kettner had that pillow on her couch, it would read, My family tree is full of ALS.

While most of us share things like eye color, height, and hand-me-downs with our relatives, the Kettners also share ALS, or amyotrophic lateral sclerosis, a progressive neurodegenerative disease affects nerve cells in the brain and spinal cord, shutting down muscle strength and control. Patients lose mobility from the tip of their pinky finger to the muscles they use the swallow. Verbal communication becomes a thing of the past, and many patients rely on alternative and augmentative communication devices. And yet, throughout the agonizing, demoralizing breakdown of the body, the mind stays completely intact. Patients can’t speak, but they can think, feel, observe…essentially trapped inside their bodies. For some it happens quickly; for others it can take up to ten years. For everyone, it is fatal.

“The hereditary chart of our family would boggle your mind,” Catherine told me over the phone. “It’s filled with heartache and pain and sorrow. But there’s also support. And there’s good parts of the story, too.”

That story began in 1997 when Cathy’s father was diagnosed with ALS. He passed away two years later. Naturally, his diagnosis inspired his family towards ALS research and reflection, and the family later determined that two of his aunts also had ALS, though neither had ever been diagnosed. Bizarre, but for sure, since a cornerstone of general ALS perception is that it’s a disease without a known common denominator, that it attacks randomly, sporadically. But one day when Cathy and her sister Peggy were lounging on the beach, an indisputable pattern reared its fatal head.

Peggy pointed to the muscles jumping under her skin and said, “No one’s going to diagnose it yet, but I have ALS.” She was right. Peggy was diagnosed in 2002. Ten years later…