Similar to many others and their families battling the rare disease, Dawson County spouses Joe and Alisa Cain were shocked when he received a diagnosis of ALS two years ago.
The disorder, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease, is often fatal within two to five years of diagnosis.
While the reality of ALS can certainly be discouraging at times, the Cain family have still managed to have faith and keep smiling with the support of a whole Dawson-area community and beyond.
This story continues below.
For their efforts encouraging others with their journey, Joe and Alisa will be the honorees at next spring’s 16th annual Night of Hope Gala, hosted by the Muscular Dystrophy Association (MDA).
The MDA advocates for more research, advancing care and supporting patients and their families who are living with muscular dystrophy, ALS and related neuromuscular diseases, according to their website, www.mda.org.
The upcoming Night of Hope Gala will be hosted on March 25, 2023, at the InterContinental Buckhead Hotel in Atlanta. Joe and Alisa will also receive the Steve Ennis award from the MDA.
The money raised from the gala will directly support ALS research. Since the event’s inception, over $10.5 million has been raised for ALS research efforts, with local funds going to the Emory ALS Clinic.
What is ALS?
More people have learned about ALS in recent years because of fundraising efforts like ice bucket challenges.
At least one to three new cases of ALS per 100,000 people are diagnosed in the United States each year, according to MDA’s webpage about the disease.
ALS impacts parts of the nervous system by causing a loss of motor neurons that control voluntary muscle movement. This makes the muscles those neurons control become weak and later not able to function, which can lead to muscle weakness, disability and eventually death in a person.
The most common cause of death for ALS patients is respiratory failure.
It is the most common form of motor neuron disease and typically affects middle-aged or older individuals, though it can also develop in younger or very elderly people. Men before the ages of 65-70 are slightly more likely to develop it as compared to women in that age range, MDA’s ALS webpage stated.
With the disease, a person’s muscles can atrophy and weaken or become stiff and spastic, with muscle twitches and cramps being common symptoms. Other symptoms include difficulty speaking and swallowing and partial paralysis that evolves into full paralysis of most voluntary muscles in later stages of ALS. The senses of vision, hearing and touch as well as involuntary muscles controlling heartbeat and a person’s digestive or reproductive systems aren’t directly impacted by ALS.
While it’s been proposed that some people may have a genetic predisposition to developing the disease but only do so after interacting with an environmental trigger, MDA’s webpage stated.
About 90 percent of ALS cases are sporadic, with no family history of the disease.
“Both familial and sporadic ALS can stem from genetic causes, and some people who have a diagnosis of sporadic ALS may carry ALS-causing genetic mutations that can be passed onto offspring,” the webpage said.
Sharing their story
Alisa and Joe have a blended family of four children from previous marriages and four children-in-law, as well as two grandchildren, according to MDA’s biography of them.
Alisa previously worked as a hairstylist, while Joe pursued a career as an engineer in the Johns Creek area.
The Cain family’s first encounter with ALS came several years ago after a good friend and coworker of Joe’s was diagnosed with the disease. Joe and Alisa became actively involved with advocacy efforts, attending two prior Night of Hope galas and four Fiesta 5K walks, which benefited the Emory ALS Center.
As they continued their advocacy efforts, another co-worker's spouse received the ALS diagnosis.
Then, after a late summer day of water recreation at Lake Lanier, Joe and Alisa knew something wasn’t quite right with him. What started out as general concerns about not being in shape, possible back issues and limping grew after an orthopedic doctor wasn’t able to give them answers and referred Joe to a neurologist.
Alisa said that despite their previous awareness endeavors, they were “still kind of blindsided” by an Emory doctor’s diagnosis of ALS in October 2020.
In her husband’s case, Joe’s ALS has progressed rather quickly since that time, Alisa said.
As his main caregiver, she’s had to consider everything from getting, equipping and retrofitting a handicap van to transition away from using sheets and buying a towel warmer.
She has also learned how to move her husband with different lift slings and helped with his cleaning and hygiene needs.
They had to be very careful going out to restaurants during the COVID-19 pandemic, although now Joe gets his nutrition from using a feeding tube because of concerns over aspiration pneumonia.
Joe also uses a breathing trilogy machine to give and take air for his lungs.
Counting their blessings
Cumming resident Amy Spivia co-chairs the 2023 Night of Hope Gala Executive Committee and has been Alisa’s friend for over 20 years. The two met while taking care of another friend who sadly succumbed to ALS. Since that time, Spivia has kept up with Joe and Alisa through past galas and as a hair client.
Spivia, who’s been involved with the committee for 15 years, asked Deanna Dickinson to co-chair it with her.
Five years ago, Dickinson moved to her home in southern Dawson County, right before Joe and Alisa came to the neighborhood. She subsequently became good friends with them. When Joe was diagnosed, Dickinson said she thought she “had to do something.”
When Spivia reached out, Dickinson was still in the race for District 3 Commissioner.
“I wanted to give 110% [to the committee],” Dickinson said. “I gave it a couple days…and after a day, I think, I reached out and said, ‘I don’t care. One way or the other, I'm going to do this.’”
And so it was that she joined the growing group of family members, friends and neighbors that have stepped up in one way or another to help Joe and Alisa.
“We’ve seen love and kindness from people that, until you do go through something like this, you may never see it in your life…that is one of the blessings."Alisa Cain
In true support system fashion, loved ones set up a meal train for Alisa, particularly when she was first learning how to navigate being Joe’s caregiver.
Joe’s also enrolled in a hospice program, so an aide can come and assist with cleaning and other related care. Joe and Alisa also have a social worker, who she says helps by encouraging them and allowing her to take breaks from caregiving.
Through the past two years, Alisa said she and Joe have maintained their gratitude for food and shelter and their Christian faiths.
“We have faith and without our faith, we absolutely wouldn't be sitting here, because our faith is very strong,” Alisa said. “Definitely on the bad days, when it’s hard to get up…it helps to know there’s other people (friends) praying for us.”
That includes 60 of their neighbors and area community members gathering regularly in their front yard, like this past Monday, and praying over them.
“They gave him a prayer blanket that they all prayed over and passed around in a Ziploc bag so it was fresh,” Alisa said.
“We’ve seen love and kindness from people that, until you do go through something like this, you may never see it in your life…that is one of the blessings,” she added.
Even with Joe’s diagnosis, Alisa exclaimed her husband “has a lot more living to do.”
“No matter what, you notice that through this entire process, their attitudes and his (Joe’s) smile has been wonderful."Deanna Dickinson
“We do still laugh a lot, because he’s a really funny person,” Alisa said. “And we still have our inside jokes and laugh at stuff. We even laugh at certain stuff with ALS, like, ‘Oh my gosh, who thought we’d be doing this?’”
“No matter what, you notice that through this entire process, their attitudes and his (Joe’s) smile has been wonderful,” Dickinson said.
During her and Joe’s advocacy efforts, Alisa said they’ve considered all the people who suffered with the disease 50-100 years ago, before there were the mobility means and knowledge about the disease that there is now.
Organizations like the Steve Gleason foundation will pay for lifts that insurance doesn’t cover, she said.
Various medications have been developed to address ALS symptoms, thereby helping improve quality of life and potentially lengthening life, the MDA webpage stated.
“We want to see it cured with no one having ALS,” said Alisa, “but we also want to see when people are facing it, that they get everything they need.”
Organizations like the ALS Association and MDA have been aggressively fundraising research into the disease because those efforts, as with other rare disorders, are underfunded.
MDA is pursuing research to get to the root of ALS causes and how to develop treatments for the disease. Those research efforts have been boosted by the discovery of ALS-causing genes.
“If they didn’t raise the money they raised, they would definitely not be as far along as they are,” Alisa said.
Joy Stafford, MDA’s National Manager of Fundraising and Community Engagement, added that her organization has supported spreading awareness of ALS, advocating for families affected by it and ultimately fundraising
“That’s the only way we can get to the next place is [by] putting money toward the research,” Stafford said.
Spivia added that there’s been “so much love and support” as Joe and Alisa and others in Dawson County and surrounding areas cope with the disease.
“They’ve been a blessing to everybody,” Dickinson said of the Cain family, “even though they’re going through this.”