There's so much Nikole Cummings' family had to figure out on their own, she said, when her father was diagnosed with Lou Gehrig's disease.
Like when to pursue home nursing care as his muscles slowly gave out, affecting his ability to walk, then speak, then swallow. And when to put him on life-support machines.
"It affects everyone differently," said Cummings, whose father, Jason Felton, was Hayden police chief before Lou Gehrig's disease, or ALS, consumed him. "It was definitely a learning process and adapting to his rapidly changing condition."
The Hayden family had one constant, however.
The ALS Association was there to help, with pointers on how to address her father's unique issues, and with supplying home health care equipment that would have otherwise posed exorbitant costs.
"It provides equipment for people who can't afford it, devices to get in and out of the shower, to move people who can't move themselves," Cummings said. "We had to rely on it, and other people living with ALS. We had to rely on them to get through different things."
Her father has been gone since 2008, after a devastating deterioration in two short years after his diagnosis.
But so many in the region are still battling the enigmatic neuromuscular disease, Cummings said, facing the same decisions her family had to make.
Now, she considers it her turn to help.
Cummings is asking others to help raise dollars for ALS treatment and research at the Walk to Defeat ALS on Oct. 8, the third annual event she has organized in the area.
"I think it's very important to raise the awareness of ALS in general. Not a lot of people know what it is, or how many people are affected in the area," she said. "The only thing they have going for them is to pull together and deal with an incurable and unfathomable disease as a family. We should show them support is here and we'll help them get through it as much as we can."
ALS, which stands for amyotrophic lateral sclerosis, affects nerve cells that control voluntary muscle movement. As motor neurons die, the brain loses ability to control muscle movement.
"ALS affects all your muscles, but it never ever affects your mind," Cummings said. "It's almost like being buried from the neck down, really."
A difficult transition for independent individuals like her father, she added.
"He definitely had a lot of pride," she said. "It's hard to watch somebody who you know what they're going through, that he has to let that pride go and accept help."
Including treatment costs and home health care, the average family pays $250,000 caring for an individual with ALS, she said.
"It's a very expensive disease," she said. "So all the money we raise we like to keep local."
Registration for the fundraiser is at 10 a.m. at Riverstone Park. The 2.5 mile walk begins at 11 a.m.
Only donations are requested, Cummings said. Some participate as teams and collect as much as they're able, she said.
Folks who register online at www.alsa.org can also track their fundraising progress, she added.
All proceeds will go toward local families living with ALS, she said, and to the ALS Association.
For more information, contact Cummings at: 660-7514.
The cause of ALS is unknown, though there are contrasting theories about the contributions of genetics and environmental factors, Cummings said.
All the more reason to spur donations for research, she added.
"The information that is lacking is outrageous," she said. "That's why we're doing this."