When Fort Myers, Florida mother-of-four Tia Willin first heard about Bruce Willis’ recent diagnosis of frontotemporal dementia (FTD), she was angry. While she felt deeply for the family – more than most – no one had cared much about the rare and deadly dementia that often strikes in middle age as her husband is dying of it. Now everyone seemed to google what FTD meant for the beloved die hard the fate of the actor.
She calls the disease the “Stephen King version of the movie 50 first dates,highlighting the alarming behavioral changes and memory loss the victim experiences. Her husband, Ryan Willin, a Navy veteran, father of their children, and her “best friend”, died of FTD at the age of 39 – just five years after first experiencing symptoms.
It’s been 14 years since Ryan’s death, but Tia, now a grandmother, is still on a mission to educate others about FTD, which affects more than 50,000 Americans each year and accounts for 10-20% of dementia cases. , according to the Association. for frontotemporal degeneration.
“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, told Yahoo Life. through his YouTube channel. “Over time, this loss of neural networks causes the lobes to shrink or atrophy. It involves changes in behavior, language, and daily functioning.
The first signs of life unraveling
When Ryan came home from work at his job with the sheriff’s department, neighborhood kids would knock on their doors and ask if “daddy could come out and play,” and he’d end up on the trampoline with them all, Tia recalled. “He was just one of them,” she told Yahoo Life. “He absolutely adored his children. His last words he ever said were ‘the children’.
But at some point, this carefree dad started acting erratically and out of character. “Instead of sitting at the table with all of us for dinner, he would just pick up his plate, go into the bedroom and close the door to eat,” she says. As “best friends”, she thought it odd that he stopped asking about his day and talking about his. Tia took the family to Disney World to see if a vacation would help. But Ryan lost two of the children, aged 8 and 9, one of whom had autism, in the park. But strangely, he wasn’t panicked. “He just sat like, ‘I don’t know where they are,'” she said.
Ryan had no awareness of his behavioral changes. It’s typical of FTD, according to Clifford Segil, a neurologist at Providence Saint John’s Health Center in Santa Monica, Calif.
However, Ryan started getting violent and had a short fuse. The couple had previously always followed a “gentle parenting” approach, but Tia suddenly found herself avoiding smashed plates and random outbursts of anger, fists through walls and more. Even little things could trigger Ryan, like one of their young children asking how to spell a word on a birthday card they were making. When he started moving towards physical abuse against children, Tia knew it was time. Ryan left their home to live with his parents.
“Never in a million years did I think I was chasing a dying man from his home,” Tia says, remembering a regret that would later haunt her.
The difficult road to diagnosis
The couple were at the start of a long and difficult journey to not only figure out what was wrong with Ryan, but to get him settled in a facility that could take care of him. He had lost his job and therefore his health insurance after failing a “fit for work” exam, because he no longer had any temporal and geographical orientation.
At first, doctors thought Ryan suffered from schizophrenia, followed by depression with psychosis – while starting to talk less and less, and even forgetting who his children were. He was sent to a public psychiatric hospital, where he spent months. Tia knew they hadn’t found the right answer yet.
His fight is common for this disease. Sullivan says FTD has the highest rate of misdiagnosis of any dementia and is often mistaken for Alzheimer’s disease or, as in Ryan’s case, depression, mania or psychosis.
But Tia had an epiphany while reading Sue Monk Kidd’s ‘The Mermaid Chair’, which details a character living with a type of FTD – she was shocked to see the book refer to her exact issues as a ‘phased disease’. terminal”. Tia sold her house to pay for Ryan’s medical tests. When a PET scan with a neurologist did not result in a diagnosis, she sought help from FTD specialists researching the disorder.
“The average time for a patient to be diagnosed with FTD is 4.4 years, which compromises the targeted education, treatment, and management of these patients and their families,” Sullivan says. “This delay is causing a lot of unnecessary pain and suffering and treatments not based on evidence.”
Barely a year after experiencing his first symptom, Ryan was finally diagnosed with TFD.
“At the beginning, it was a confirmation. Validation,” says Tia. “In the second that followed, it was completely overwhelming. It was a death sentence” – one without even a goodbye, as Ryan’s language and conscience were gone. He could only say “yeah”.
Tia focused on finding a facility for Ryan that could help her, and raising their children “in the shadow of a dying father” for an ambiguous length of time: FTD patients live in average six to eight years with the disease, according to the National Institute on Aging. Segil adds that an accurate diagnosis is essential, but that other reversible causes of memory loss — such as an abnormal thyroid or brain tumors — must 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, though Tia contacted their senator and 35 facilities afterward. No one is interested in taking in a potentially violent middle-aged dementia patient, she says. Eventually, a local reporter covered Ryan’s story and he was admitted to a nursing home.
Ryan spent his last two years in hospice, what Tia calls his saving grace. She had put up signs in her 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 human.”
People wondered why she came so often. Tia had lost her entire community of support, including friends from church who turned away when Ryan’s behavior changed and her family who chose not to care for him long-term. However, the hospice worker at the nursing home taught him a good lesson about grief: “’Ryan isn’t going to survive this, but you and the kids are. You must do more than survive. You have to live,” she recalls.
For others enduring life with a loved one with dementia, Tia recommends “keeping at least one of your feet firmly planted in the land of the living, and remembering to look around and stay in the moment. “. Instead of getting bogged down in a thousand regrets, “always move forward,” she says.
Tia says she chose to release the anger she felt about a healthcare system that “100%” failed her and her children as they tried to care for Ryan. “I can’t take this with me for the rest of my life,” she said.
But what she can do — and why 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 have been through, more people will learn about the FTD and donate to research-based causes, such as the Frontotemporal Degeneration Association.
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