When Fort Myers, Fla., mom of four Tia Willin first heard about Bruce Willis’s recent diagnosis of frontotemporal dementia (FTD), she was angry. While she felt deeply for the family — more than most others could — nobody had cared much about the rare and deadly dementia that often strikes in middle age while her husband was dying from it. Now everyone seemed to be googling what FTD meant for the beloved Die Hard actor’s fate.
She calls the illness the “Stephen King version of the movie 50 First Dates,” pointing to the alarming behavioral changes and memory loss the sufferer experiences. Her husband, Ryan Willin, a Navy veteran, father of their children, and her “best friend,” died from FTD at the age of 39 — just five years after he first experienced symptoms.
It’s been 14 years since Ryan’s death, but Tia, now a grandma, is still on a mission to educate others about FTD, which impacts more than 50,000 Americans each year and accounts for 10% to 20% of dementia cases, according to the Association for Frontotemporal Degeneration.
“The frontotemporal dementias are a subtype of dementias that are due to a loss of neurons in the frontal or temporal lobes or both,” neuropsychologist Karen Sullivan, who also works to educate people about the brain through her YouTube channel, tells Yahoo Life. “Over time, this loss of neuronal networks causes the lobes to shrink or atrophy. It involves changes in behavior, language and everyday function.”
The first signs of life unraveling
When Ryan would arrive home from work at his job with the sheriff’s department, neighborhood kids would knock on their door and ask if “the daddy could come out and play,” and he’d end up on the trampoline with them all, Tia recalls. “He was just one of them,” she tells Yahoo Life. “He absolutely adored his children. His last words he ever spoke were ‘the kids.’”
But at one point this carefree dad started acting erratically and out of character. “Instead of sitting down at the table with the rest of us to eat dinner, he would just pick up his plate and go to the bedroom and close the door to eat,” she says. As “best friends,” she found it bizarre that he stopped asking about her day and sharing about his own. Tia took the family to Disney World to see if a vacation would help. But Ryan lost two of the kids, ages 8 and 9, one of whom had autism, in the park. But strangely, he wasn’t panicked about it. “He just sat down like, ‘I don’t know where they are,’” she says.
Ryan had no awareness of his behavioral changes. This is typical of FTD, according to Clifford Segil, a neurologist at Providence Saint John’s Health Center in Santa Monica, Calif. “Sometimes patients present with memory loss first or language problems first or disinhibition first,” he tells Yahoo Life.
However, Ryan started to become violent and had a short fuse. The couple had previously always followed a “gentle parenting” approach, but suddenly Tia found herself dodging smashed plates and random angry outbursts, fists through walls and more. Even small things could set Ryan off, such as one of their young children asking how to spell a word on a birthday card they were making. When he started moving toward physical violence against the kids, Tia knew it was time. Ryan moved out of their house and in with his parents.
“Never in a million years did I think that I was kicking a dying man out of his home,” Tia says, remembering a regret that would haunt her later.
The arduous journey to diagnosis
The couple was at the beginning of a long and difficult journey to not only figure out what was wrong with Ryan, but also get him settled in at a facility that could care for him. He’d lost his job and therefore his health insurance after failing a “fit for duty” exam, as he no longer had any orientation to time and place.
At first, doctors thought Ryan had schizophrenia, followed by depression with psychosis — all while he began speaking less and less, and even forgetting who his children were. Tia knew they hadn’t found the right answer yet.
Her struggle is common for this illness. Sullivan says that FTD has the highest rate of misdiagnosis of all dementias and is commonly mistaken for Alzheimer’s, or, as in Ryan’s case, for depression, mania or psychosis.
But Tia had an epiphany while reading “The Mermaid Chair,” by Sue Monk Kidd, which details a character living with a type of FTD — she was shocked to see the book referring to his exact issues as a “terminal illness.” Tia sold her home to pay for Ryan’s medical tests. When a PET scan with a neurologist didn’t result in a diagnosis, she sought help from FTD specialists doing research on the disorder.
“The average delay for a patient in getting an FTD diagnosis is 4.4 years, which jeopardizes targeted education, treatment and management of these patients and their families,” Sullivan says. “This delay causes a lot of unnecessary pain and suffering and nonevidence-based treatments.”
Two years after he experienced his first symptom, Ryan was finally diagnosed with FTD.
“At first it was confirmation. Validation,” Tia says. “In the next second, it was completely crushing. It was a death sentence” — one without even a goodbye, as Ryan’s language and awareness were gone. He could only say “yep.”
Tia turned her attention to finding Ryan a facility that could help him and to raising their children “in the shadow of a dying father” for an ambiguous amount of time: FTD patients live six to eight years on average with the condition, according to the National Institute on Aging. Segil adds that an accurate diagnosis is essential, though, as other, reversible causes of memory loss — such as an abnormal thyroid or brain tumors — need to be ruled out.
‘Keep at least one of your feet firmly planted in the land of the living’
Tia says her veteran husband was denied care by their VA nursing facility, despite Tia contacting their senator and 35 facilities after that. Nobody is interested in taking in a potentially violent middle-aged dementia patient, she says. Finally, a local reporter covered Ryan’s story, and he was admitted to a nursing home.
Ryan spent his last two years in hospice, which Tia calls his saving grace. She’d put up signs in his room at the nursing home, such as “My favorite beer is Bud Light,” trying to humanize Ryan. “I’m trying to convince the people caring for him at the nursing home that he’s a human.”
People questioned why she visited so frequently. Tia had lost her entire community of support, including church friends who turned their backs when Ryan’s behavior changed and family who opted out of caring for him for the long haul. However, the hospice worker at the nursing home taught her a good lesson about grief: “‘Ryan’s not going to survive this, but you and the kids are. You must do more than survive. You must live,’” she recalls.
For others enduring life with a loved one who has dementia, Tia recommends to “keep at least one of your feet firmly planted in the land of the living, and to remember to look around to the present and stay in the moment.” Instead of getting mired in the thousands of regrets, “always move forward,” she says.
Tia says she chooses to release the anger she felt over a health care system that “100 percent” failed her and her children as they tried to care for Ryan. “I can’t carry that with me the rest of my life,” she says.
But what she can do — and the reason she wants to tell her story — is to help others become aware of FTD and dementia-related illnesses. Tia hopes that as a result of sharing what she and Ryan went through, more people will learn about FTD and donate to research-based causes, such as the Association for Frontotemporal Degeneration.
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