Healthy Kids    

What ALS means to my family

Hudson Valley Parent's editor describes her father-in-law's heart-breaking experience with the debilitating disease

Katy Weber's daughter, Anna, with her grandfather the last time they saw him alive.

This past summer, the world of social media was flooded with the ALS Ice Bucket Challenge. In case you’ve been living under a rock for the past few months, the challenge was meant to raise awareness for amyotrophic lateral sclerosis, an incurable neurodegenerative disorder, also known as “Lou Gehrig’s disease.” Participants in the challenge were dared to film themselves having a bucket of ice water poured on their heads and then nominating others to do the same within 24 hours. If they chose not to accept the challenge, they could instead donate to a charitable ALS foundation (although many people simply chose to do both).

Within a month, millions of videos had been posted in America and worldwide, and participants included celebrities, politicians, professional athletes, and everyday people, including myself.

According to the ALS Association, donations by end of August had topped $100 million, compared to the $2.8 million donated in the same period the previous year. Just as importantly, public awareness of ALS has soared. While some complained that the videos were just a stunt, “slacktivism” or a waste of water, I was grateful that finally more people might understand how terrible this one disease can be to its victims and their families.

My father-in-law’s story

My husband Matthew's father was officially diagnosed with ALS when we were pregnant with our first child. When I first met Matt, Dude (everyone called him this, even his wife) owned a hardware store in Wallkill. When Matt and I bought our first house in New Paltz — an old money pit we really couldn't afford — Dude made it livable. He updated the wiring. He moved radiators. He sweat the pipes! He was that kind of handy.

He was what you'd call a “man’s man.” He was a Vietnam veteran, a guy who did everything, built everything, repaired everything, knew everything. Just don't ask him to get on a plane (long story).

When he was younger, he broke his neck in a diving accident. He spent an entire year in traction and a body cast while Matt's mother cared for their 1-year-old and a newborn baby. Doctors told them he would never walk again, but Dude didn't agree. He went home, fashioned his own physical therapy devices out of household tools, and eventually made a FULL recovery. He was that kind of stubborn.

Dude worked hard every day of his life and at age 62, he and Ma sold the hardware store to move to Florida. By that time, Dude was already feeling weak and losing the mobility in his arms. Local doctors chalked it up to his old neck injury, and he had an invasive surgery that left him in a wheelchair. They moved to Florida anyway (taking the train, of course).

Retirement lost

Within a year of moving there to start a brand new chapter in their lives, Florida doctors diagnosed Dude with ALS. They said he had about a year to live.

For that next year, we watched his body betray him. This man, who was strong and determined and wise and hilarious, was now trapped in a body that wouldn't work. This man — the provider, the strong father and grandfather who moved his kids into countless new homes, built his own home from scratch, fixed everything and preferred duct tape to bandages when he got hurt, helped EVERYONE else with everything — was now a quadriplegic confined to a wheelchair. He now required help to do absolutely everything.

After our daughter, Anna, was born, we flew down to visit as often as we could. The photo of them was taken the last time Anna and I saw Dude alive. We were celebrating Anna's first birthday. Dude was feeling depressed. By this point he had lost all muscle control in his body except for the one finger on his right hand that he used to move himself around in his electric wheelchair, and he was starting to lose control of that finger. He could only take fluids by a straw. He was cold all the time. He was having real trouble speaking.

Saying goodbye

Shortly after that last trip, Matt’s mom called to tell us that Dude's lungs had collapsed. The muscles had finally given way. He was hospitalized and put on a respirator. Because of his breathing tube, he could only blink to communicate. His kids all flew down to be with him and to say goodbye. Up to the last day, his mind was alert and his brain was fully functional. He still had his sense of humor and still somehow managed to boss everyone around from his bed.

Doctors said Dude could probably survive indefinitely on life support, but Dude didn’t agree. He chose to go off life support.

Raising awareness

This disease needs more research. It needs a cure. It robs too many people. ALS robbed Dude of his much-deserved retirement. It robbed him of his strong, healthy body that had already conquered more hardships than I'll ever know. I can't think of a crueler way for Dude to leave this world.

Anna of course doesn't remember Dude, but she LOVES looking at pictures of them together. She asks about him often. She asks us to tell her all about him. We tell her everything we know. Every story, every laugh, every detail of this amazing man's life.?

Katy Weber is the editor of Hudson Valley Parent. She lives in Rosendale with her husband and two children.