Healthy Mind
Frontotemporal Dementia is a Sneak Thief:
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By Carol Lippert Gray
Actor Bruce Willis’s recent diagnosis of frontotemporal dementia (FTD) – the most common cause of dementia in people under 60 and third most common form of dementia in people over 65 – created a media frenzy that has helped to raise public awareness of this cruel disease. But Tia Singer Willin’s husband developed Pick’s disease, a variant of frontotemporal dementia, in 2004, when very little was known about the condition. She shares their story in the hope that it can help others.
When he was 37, Ryan Willin began to change. A recently promoted police officer, he became distracted, disheveled, uncommunicative, and occasionally violent. His language skills and inhibitions eroded. This is when Tia and Ryan’s medical odyssey began.
Actor Bruce Willis’s recent diagnosis of frontotemporal dementia (FTD) – the most common cause of dementia in people under 60 and third most common form of dementia in people over 65 – created a media frenzy that has helped to raise public awareness of this cruel disease. But Tia Singer Willin’s husband developed Pick’s disease, a variant of frontotemporal dementia, in 2004, when very little was known about the condition. She shares their story in the hope that it can help others.
When he was 37, Ryan Willin began to change. A recently promoted police officer, he became distracted, disheveled, uncommunicative, and occasionally violent. His language skills and inhibitions eroded. This is when Tia and Ryan’s medical odyssey began.
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Today, it’s estimated that between 50,000 and 60,000 people in the U.S. have it. But at that time, medical professionals “just called it a brain illness,” Tia says. “The neurologist had never diagnosed a single case [of FTD] after practicing for decades. I had to do a total education of our healthcare providers just to have tests done. Now 60 to 70 percent of doctors know what it is.” It was tough on the couple and their four young children. “Ryan was acting weird. [Our children] were used to a peaceful home. We didn’t yell or strike them. All that changed. Ryan became very abrupt with the children. We loved being together with the family and, suddenly, it changed.” It was an adjustment for the neighborhood children, too. Tia says they would ask, “Can your daddy come out and play?” Now, though, “He didn’t speak much, didn’t care what was going on. Our son’s cat was killed, and Ryan acted like it was nothing. It happened gradually, like the 'boiling a frog' metaphor. But when he started to become violent and yelling, that was a huge wakeup. Suddenly, the children were afraid of him. “I urged him to see a counselor. I thought it was stress related to his promotion. He said, ‘There’s nothing wrong.’ I was constantly questioning my own perception of what was going on.” |
What is Pick's Disease?
Pick’s disease is a neurological condition characterized by a slowly progressive deterioration of behavior, personality, or language. People with Pick's disease have abnormal substances (called Pick bodies) inside nerve cells in the damaged areas of the brain. Pick bodies contain an abnormal form of a protein called tau. This protein is found in all nerve cells, but people with Pick's disease have an abnormal amount or type of this protein. Symptoms often present sometime in the 50s, though it can occur as early as age 20 or as late as age 80. The course of the disease varies from person to person. The underlying cause of Pick's disease is unknown. In some cases, the disease runs in families. ~ National Institutes of Health |
The condition affected the family’s finances, too. “I found out he spent our entire savings – $35,000 for a new home – and had no idea what he spent it on. It was scary. Was he having an affair or was online gambling going on?”
Finally, Tia says, “I told him you can’t come home until you get help. I was positive he’d see a counselor within a week, and he’d get back to where we were. But he had no ability to follow through. He wasn’t just being stubborn. He also was having problems at work. It was confusing for them as well because he had been a rising star at the Sheriff’s Department.”
Ryan lost his job. The family lost its health insurance. Tia says, “I asked him to move out. He was staying with his parents. They were so concerned that they took him to a doctor, who referred them to mental health care. That was the first time I realized something was seriously wrong. He was disoriented to time, space, and couldn’t tell you his full name.”
Ryan’s odyssey through the healthcare system began. His original admission diagnosis was psychosis. Tia says, “Then he began not speaking, or saying very few things; although, when I visited, he always asked, ‘How are the kids?’ He’d nod, then repeat it in a circular conversation. Then his speech became slurred, and then he stopped speaking.”
She had read the novel The Mermaid Chair by Sue Monk Kidd. The illness of one of the characters sounded to Tia like what Ryan had. “Then,” she says, the book “named the disease. I looked it up and found the Society for Frontotemporal Dementia. I immediately reached out to them, and they suggested tests that could be done.”
Finally, Tia says, “I told him you can’t come home until you get help. I was positive he’d see a counselor within a week, and he’d get back to where we were. But he had no ability to follow through. He wasn’t just being stubborn. He also was having problems at work. It was confusing for them as well because he had been a rising star at the Sheriff’s Department.”
Ryan lost his job. The family lost its health insurance. Tia says, “I asked him to move out. He was staying with his parents. They were so concerned that they took him to a doctor, who referred them to mental health care. That was the first time I realized something was seriously wrong. He was disoriented to time, space, and couldn’t tell you his full name.”
Ryan’s odyssey through the healthcare system began. His original admission diagnosis was psychosis. Tia says, “Then he began not speaking, or saying very few things; although, when I visited, he always asked, ‘How are the kids?’ He’d nod, then repeat it in a circular conversation. Then his speech became slurred, and then he stopped speaking.”
She had read the novel The Mermaid Chair by Sue Monk Kidd. The illness of one of the characters sounded to Tia like what Ryan had. “Then,” she says, the book “named the disease. I looked it up and found the Society for Frontotemporal Dementia. I immediately reached out to them, and they suggested tests that could be done.”
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“There’s no treatment, no cure, no opportunities for a last vacation, letters, or the other beautiful ways people get to say goodbye. But FTD takes the person. By the time they’re dying, they’re already gone.” ~ Tia Singer Willin |
She sold their home to raise money for testing. She encountered a local pastor who told her Ryan was suffering from demonic possession. She told the mental health center where he was living about FTD, but they’d never heard of it.
They finally saw a neuropsychologist whose father had FTD and acquired a diagnosis. “It was the worst prize I’d ever received in my life,” Tia says. “There’s no treatment, no cure, no opportunities for a last vacation, letters, or the other beautiful ways people get to say goodbye. But FTD takes the person. By the time they’re dying, they’re already gone.” |
Other collateral damage included the loss of longtime friendships. “When we see someone else’s trauma, there’s a tendency to distance and depersonalize,” Tia says. “What we were going through was so scary, and we lost most of our friends.”
Even the nursing home where Ryan lived (after being rejected by over 30 others) didn’t see him as a person. “With FTD patients, it’s dehumanizing to a level you don’t hear about with other kinds of patients. You have to get through to them that he’s a person, not just another patient. That was painful. But Ryan’s last words to me were ‘the kids.’ That reminded me to prioritize what we always prioritized in this family.”
FTD’s newly heightened visibility may now attract more research funding, because currently there’s nothing available to arrest, treat, or cure it. Tia says, “It would be wonderful to say to the Willis family or any other family, ‘You can try this.’ But there’s nothing, and everybody wants a little hope.”
Ryan died in 2009, just shy of his 40th birthday.
Tia and her children carry on. Tia lives in Ft. Meyers, Florida. She’s a writer and editor currently working on a financial guide for 20-somethings who need practical advice. To find sanctuary, she writes dystopian fiction because, she says, “I’ve already survived the end of the world.”
Even the nursing home where Ryan lived (after being rejected by over 30 others) didn’t see him as a person. “With FTD patients, it’s dehumanizing to a level you don’t hear about with other kinds of patients. You have to get through to them that he’s a person, not just another patient. That was painful. But Ryan’s last words to me were ‘the kids.’ That reminded me to prioritize what we always prioritized in this family.”
FTD’s newly heightened visibility may now attract more research funding, because currently there’s nothing available to arrest, treat, or cure it. Tia says, “It would be wonderful to say to the Willis family or any other family, ‘You can try this.’ But there’s nothing, and everybody wants a little hope.”
Ryan died in 2009, just shy of his 40th birthday.
Tia and her children carry on. Tia lives in Ft. Meyers, Florida. She’s a writer and editor currently working on a financial guide for 20-somethings who need practical advice. To find sanctuary, she writes dystopian fiction because, she says, “I’ve already survived the end of the world.”
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ADDITIONAL RESOURCES:
All About Frontotemperal Dementia (Mayo Clinic) About Pick's Disease (Cleveland Clinic) All About Pick's Disease (National Institutes Health) Early History of Pick’s Disease (National Library of Medicine) Story of Monty Python’s Terry Jones, who also has Frontotemporal Dementia Carol Lippert Gray is an award-winning public relations professional and longtime freelance writer and editor. Her career has spanned books, newspapers, magazines, broadcast and online media in fields as diverse as crafts and corporate finance, parenting and philanthropy. She is Co-Associate Editor for Sanctuary.
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