ALS robs patients of so much, but loved ones are fighting to make sure they don’t lose quality of life

ALS is a rare disease ― only about 5 in 100,000 people will develop it. Long-term healthcare can prove challenging.
Published: Jun. 29, 2022 at 5:05 PM HST|Updated: Jun. 30, 2022 at 6:28 PM HST
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HONOLULU (HawaiiNewsNow) - Divina Robillard was 29 when she got married to the love of her life.

And that life was good. Until Britt Robillard’s diagnosis, just two years into their marriage.

The doctors said the strange symptoms he’d been exhibiting, including weakness in his hands, were consistent with ALS ― a progressive disease that often renders people incapable of moving and eventually makes them a prisoner inside their own bodies.

ALS has no cure, and Divina and Britt knew that.

As the disease progressed, Divina became not only a wife and a mother but a caregiver. “He lost his ability to speak,” she said. “Imagine that kind of restriction on a person who was very articulate. He loved to socially engage. His illness just progressed.”

Despite Britt’s inability to move, he kept working as a sociology professor at UH. He wrote several books on being disabled.

And Divina helped him every step of the way until his death, six years ago.

Their story underscores the struggles of an ALS diagnosis on patients, but it also highlights the broader burdens that a chronic illness like ALS ― also known as Lou Gehrig’s disease ― puts on families.

Samie Solina joins Dillon Ancheta to expand on her 3-part series on ALS and the growing call for expanded care options in Hawaii.

ALS is a rare disease ― only about 5 in 100,000 people will develop it ― but to many families in Hawaii dealing with other chronic illnesses, what patients with ALS are grappling with is familiar and includes the same healthcare and long-term care hurdles.

For many, caregiving for a loved one with ALS becomes a full-time responsibility, disrupting jobs and depleting life savings.

They often struggle to navigate the maze of government and health insurance benefits, and encounter a system overwhelmed and under-resourced. Patients with ALS can also face unique challenges, not least of which because the disease often strikes when people are still working age. It’s why some are fighting for a specialized, long-term care facility for ALS patients.

The facility would offer some respite to struggling families and provide the special care ALS patients need.

But making it a reality will require a lot of work ― and funding support.

The hope for an ALS facility

A college friend helped Divina and Britt renovate their home to accommodate new gear and special equipment. They put in a ceiling lift. And Divina took her husband to work every day while taking care of their young son, born after Britt was diagnosed.

Despite the illness, they had a rhythm to their lives. Until it skipped a beat.

“I had breast cancer when my son was 10 years old,” said Divina, who now runs the ALS Foundation of Hawaii. “And during that time, I did not know how to take care of myself. I always had that in mind ― what’s going to happen to me and Britt?”

That terrifying moment, when she didn’t know who would care for her family if something happened to her, is why she’s advocating for a full-time ALS care facility. “This is not the kind of facility that will create just vegetables of them,” she said.

Katherine O’Connor helped Divina start the foundation to advocate for the facility.

She’s in this fight because of her little brother, Brian Burke.

“He had the biggest smile. You know, his smile would just light up the room. He had a twinkle in his eyes,” she said.

‘He didn’t last long enough’

After Brian was diagnosed with ALS, he found himself homeless after being unable to keep up with his moving business.

Learning about his brother’s struggles, Katherine scrambled to find space for him at a long-term care facility and visited him daily.

She grew increasingly concerned, though, about the care he received there.

Her brother developed bedsores and usually seemed uncomfortable. “I feel that with an ALS residence he would still be alive,” she said, “because certain things that happened wouldn’t have happened.”

She added, “I think what was the most difficult for me was seeing his quality of life or lack thereof, and knowing that there was something better out there that was not available for him here and for other ALS patients here.”

Katherine and Divina point to an ALS facility in Massachusetts as a model, and have had preliminary conversations with St. Francis Healthcare System. The organization said while they’d love to help, a facility would require federal, legislative and nonprofit support. They’d also need additional staff, a tough ask nowadays. But the obstacles don’t deter Divina and Katherine.

Their hope for a place for their family members has been replaced by a dream for others.

“The hope was that maybe he could be our first resident,” Katherine said, of her brother. “But it’s taking us longer to get off the ground. And he didn’t last long enough.”

NEXT IN THE SERIES: Fighting for care

On Thursday, HNN’s Samie Solina will continue her three-part series on ALS by looking at the challenges patients and their loved ones face in filling the gaps in the health care and social service systems meant to help them.

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