Tony Chisholm didn’t challenge friends or family, pop stars or presidents after the Campbellsburg man dumped buckets of ice water on his head as part of raising awareness about ALS. He challenged researchers to focus on a cure for the deadly disease.
After losing Alicia, his wife of seven years, to the disorder that eventually causes the nervous system to fail and the muscles to stop moving, Chisholm saw an opportunity to send a message to the pharmaceutical industry.
“Your muscles progressively shut down until they reach some vital organ that results in death,” Chisholm explained on the video. “Alicia, before she left, lost the use of feet and legs, hands and arms and ultimately succumbed to collapsed lungs.”
ALS is always fatal, Chisholm said. But ALS usually gets overlooked by medical researchers because few people contract the disease.
The viral challenge involves people getting doused with ice water on video, posting it to social media and naming others to do the same in an effort to raise ALS awareness, as officials with The ALS Association noted. People can accept the challenge, make a donation to an ALS charity instead or both.
His intent in the challenge involved getting viewers to share his video to try to bring more attention to the need for a cure.
“Because the goal is to get some pharmaceutical executive or their spouse or some high powered researcher to understand that this is a deadly disease and it needs more work,” he explained in his public Facebook post. “If you can do the challenge, that’s great. If you can donate that’s better, but please at least share videos so that we can get the word out about how deadly ALS is.”
Named by Alicia’s daughter, Ariel, Chisholm poured four buckets — one for each year that Alicia survived the disease — and then jumped backwards into an above ground pool to complete the soaking.
The ice bucket challenge generated an outpouring of support for The ALS Association with $94.3 million in donations coming from July 29 to Aug. 27 — the same period during 2013 saw $2.7 million, according to a news release from the foundation. The challenge has inspired 2.1 million new donors to The ALS Association since the end of July.
“While the monetary donations are absolutely incredible, the visibility that this disease is getting as a result of the challenge is truly invaluable,” said Barbara Newhouse, president and CEO of The ALS Association. “People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS.”
With countless others taking the challenge, Chisholm wanted to make his video different — one reaction he’s heard is that many viewers found Chisholm’s accidental co-star extremely cute.
Ariel’s half-husky, half-heeler, Freya, kind of stole the show by dipping her paws and her mouth into the buckets prior to the big splash.
“She likes ice and she was trying to get the ice out of the bucket to play with it,” Chisholm said. “I really didn’t know the dog was there. I was concentrating on trying to get my words out.”
The dog sprinted off the deck in the background when Chisholm tipped the buckets up and threw them down in succession.
While millions have donated to the fight against ALS through the ice bucket challenge, only about 30,000 people in the United States suffer from the neurodegenerative disease that first robs them of their freedom of movement and eventually takes their lives.
Chisholm compared the chances of contracting ALS as about the same to that of a person getting hit by lightning or getting bit by a shark.
“Many of the doctors we went to, they said they’d never thought they’d even meet anybody who had ALS, much less treat one, it’s so uncommonly rare,” he said.
Finding the truth
Her diagnosis was made more difficult by Alicia needing back surgery to treat her “sliding vertebra,” which had symptoms like loss of feeling in her legs, just like ALS does, Chisholm said.
A tremendous amount of medical tests followed, until doctors could eliminate all other possibilities, he said.
From watching the difficulty that doctors had pinpointing ALS as Alicia’s medical issue, Chisholm witnessed her undergoing test after test for months.
As several other medical problems, like a bulging disk or muscular dystrophy, can cause similar symptoms to ALS, doctors often resort to testing for many more common diseases and eliminating those.
That led to multiple batteries of cat scans, MRIs, around 70 kinds of blood work and more over months from a neurologist in Louisville to researchers at the Mayo Clinic before Alicia’s diagnosis was confirmed, Chisholm said.
Doctors discovered the truth only after successful surgery to correct her back problem.
Alicia got back some feeling and some mass in her legs, but her muscles continued not to work correctly, Chisholm recalled. When she returned to the surgeon for a follow-up while depending on a walker, her doctor seemed at his wit’s end.
“He pretty much just threw up his hands and said, ‘We don’t know what’s wrong with you. We don’t know why you can’t walk,’” Chisholm said. “Had she not had ALS, she would have been up running in a couple months. She just continued to get worse.”
Running their business, Castle Court Tax, Chisholm and Alicia stayed together practically all the time, tax season and beyond.
Though only married for seven years, they remained “in high gear all the time.” He called Alicia his soulmate.
Alicia became more dependent on her loved ones for help as ALS slowly and increasingly robbed her of the ability to move.
“She couldn’t get out of the wheelchair,” Chisholm said. “She couldn’t move her hands. She couldn’t cook, she couldn’t hold onto things.”
Because Alicia was a small person, Chisholm could pick her up in his arms, carry her to the bed, to the couch or to the wheelchair, he said. That meant he could take care of her at home and never had to admit her to a nursing home or hospital for the long term or need to put her on a respirator or a colostomy bag.
“It bothered her terribly that I or anybody else would have to do things for her — Alicia was an independent little rascal,” Chisholm said. “She loved taking care of the flowers, keeping the house looking nice, cooking — she couldn’t do any of that stuff.”
One activity Alicia could do on her own involved researching family genealogies at ancestry.com with a touch screen computer. She loved it and did it for hours at a time and amassed huge amounts of data for her and his family trees.
Her mind remained sharp even as the disease atrophied her muscles, he said.
“They say the ice bucket is what an ALS person feels like — that’s not true, not that that’s important,” Chisholm said. “ALS, in and of itself, there’s no pain — your muscles just quit working.”
“Alicia knew her feet didn’t work, her hands wouldn’t work,” Chisolm said. “She knew she couldn’t feed herself… she could see all those things happening, which is why it’s such a cruel disease.”
Chisholm thinks about Alicia about a dozen times a day and expects to for the rest of his life.
The first thing he used to do in the morning involved walking around their bed to pick her up to help her get ready for the day. Chisholm said it hurts when he wakes up in the morning and Alicia is not there.
“The ice bucket challenge is nice, but it doesn’t make up for what you’ve lost,” he said. “We knew that the end was coming for her, and you can do all the planning you want, but it doesn’t make it any easier.
“Nobody should live without hope and with ALS there just isn’t any. It’s cruel not only for her but for the family members, too.”
• To watch Chisholm’s video go to https://www.youtube.com/watch?v=2mqdBMEpjig
For more information about ALS and The ALS Foundation, go to its webpage at http://www.alsa.org/.