By Alicia Neaves
While thousands have taken the famous Ice Bucket Challenge, many people are still unfamiliar with the disease and the toll it takes on families involved. For one member of our NewsWest 9 team, ALS is personal.
ALS, also known as Lou Gehrig's is personal for me, as my great-grandfather fell victim to complications caused by the disease in 1969. But one of my family members said it perfectly: Never have they seen something as lighthearted and fun try to bring attention to something so serious. Sometimes, they say, that's what it takes.
"He would call me every Saturday morning to bet on the baseball game of the week. Back in those days, you got to watch one game and it was always the New York Yankees and whoever they were playing. Back then 50 cents was a lot of money, so we bet 50 cents a game, every week," Grandson, Roland Neaves, said.
Roland Neaves spent time with his grandfather, Joe Salvador Neaves, every weekend. Joe, also known as "Grandpa Toto" lived an active lifestyle.
"He would spend all day doing shoplifting detective work. He noticed that he was starting to have trouble walking. He was starting to have trouble moving from place to place and getting around. A lot of the shop and store managers noticed that he wasn't his usual self," Roland said.
The doctor told Neaves the disease would gradually move from his legs to the rest of his body.
Joe's daughter-in-law, Elvia, remembers his will to work.
"[The doctor] says, 'What kind of work do you do,' and [Joe] said, 'I'm a policeman. I have to be on my feet because I'm a shoplifting detective,' and the doctor said, 'Well pretty soon you're not gonna be able to do it.' He started to drop a lot of things, then it affected his arms and his hands really bad. So he did have to retire, all within a few months." Daughter-in-law, Elvia Neaves, said.
From the first day living with ALS to the last, just eight months later, Joe showed no pain.
"Even though he was sick, he said, 'I can handle it, I can take it.' He wanted to do things for himself but he couldn't," Elvia said.
"He was a strong man. Culture was different back then. I was 12 years old and I think he wanted to set an example for how to deal with very, very tough circumstances. To some extent, I would babysit for him to give my grandmother a chance to just get regular things done. I'm sure a lot of those challenges are the same that families face today," Roland said.
The night before he passed away, Joe asked to see his grandson, Roland.
"'I want you to come back and bring Roland with you,' Because his birthday was gonna be the next day, and I said, 'No, his birthday is tomorrow and we're gonna bring a cake to celebrate here at the hospital,' and he says, 'Nope, you bring him tonight,'" Elvia said.
His gift waiting for his grandson was a 1969 transistor radio.
As for the famous Ice Bucket Challenge taking our world by storm, the Neaves family is hopeful the money being raised will eventually find a cure.
"There are fewer and fewer diseases that we can't deal with. So it's nice to find focus to make that list even shorter," Roland said.
Shortly before he died, Joe contracted pneumonia, which doctors told the family, took his life faster.