Todd Neva describes the day a neurologist told him he was showing early signs of ALS as uneventful, as he sat in disbelief that he really had the disease. He first noticed possible symptoms of ALS in 2010 when he struggled to lift his daughter out of her carseat. Just a few months later, he was diagnosed.
Amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, is a neurological condition in which the voluntary muscles in the body progressively lose their ability to function. It has no cure, no known cause, and the end result is sadly death. Todd and his wife, Kristin, struggled to come to terms with their new reality.
“It was devastating,” said Kristin. “We had two young kids. Isaac was nine months old, and we thought there was a great likelihood that he would never even remember Todd.”
“I remember the first time that I couldn’t swing a golf club, and I thought, ‘Well, that’s ok. I can do without golf,’” recalled Todd. “But then the first time I couldn’t squeeze a mustard bottle, I cried. It was hard.”
Todd now uses a powerchair to move around and voice control software on his computer to write emails. Everyday tasks, like putting on clothes or reading a book to his kids, Sara, now 8, and Isaac, now 4, are a challenge.
“Now I’m sitting in the passenger seat and she’s driving, and that’s hard. It’s hard for a guy to have your wife drive!” he laughed. “But it takes a little bit of time to adapt to it, and I’ve surrendered and I’ve relaxed.”
They have since published a book titled "Heavy" cataloging their journey and how they came to find joy in the midst of suffering by taking life one day at a time.
“We can’t go for a bike ride as a family anymore, but today I can be thankful that Todd can still watch a movie with us, or go to the fair. We just went to the fair last night,” said Kristin. “So there’s still joy that we can find in life and things that we can be thankful for.”
Todd and Kristin said they’ve also found some comfort in the thousands of videos of the ice bucket challenge, which, according to the ALS Association, is credited for raising over $53 million. Kristin, Sara, and Isaac, even took the challenge themselves Friday.
The Nevas said they hope their story will serve as an encouragement to others suffering through any hardship and that the ice bucket challenge will teach people how to be compassionate.
“Soon enough, their newsfeeds will go back to cat videos and covers of ‘Let It Go,’ but right now ALS has the spotlight,” said Todd. “I think what’s wonderful about that is somewhere in there, somebody’s heart will be changed.”
The Nevas’ book, "Heavy," can be purchased on Amazon here. For more information about ALS and the ALS Association, visit their website.