By Sue Tiffin

At the end of September, Amanda Dawson reached out to the community of Minden through a public group Facebook page, looking to see if anyone might remember her dad, Stephen, who worked in Minden as a full-time and then part-time doctor from 1986 to 1994.

The responses were numerous – from his neighbours on Mountain Lake at that time, from his patients who reported his attention to care and from his fellow coworkers, including nurses and an x-ray technician who noted his empathy, compassion and strength through traumatic emergencies – and they brought Amanda, who now lives in Portland, to tears.

“That response was just overwhelming to me, to hear about the man he was when he started out his career,” she said. “It’s consistent with things I’ve heard from friends I know in Toronto who knew him when he was young.”

Amanda said her dad, who was from Scarborough, always loved rural Ontario and started out his practice in Wawa, Ontario – a message she posted on a public group in that area elicited similar fond memories of her dad – prior to moving to Minden.

“He loved serving remote communities and rural communities, and just really loved the exposure, as a general practitioner,” she told the Times. “He got to treat so many kinds of diseases and see everything and it was a great experience but he also just loved the sense of community.”

With their four kids, Amanda – a mom now herself – wonders how he and her mom, Barbara, a nurse, managed, but said she has fond memories of childhood alongside her parents and brothers.

“I remember the early years with my dad,” she said. “He was very very passionate about medicine and helping people and I remember wanting to follow in his footsteps and be exactly like him and become a doctor. He was very excited about that and very supportive of that. He said it’s not a job, it’s a calling.”

One of Stephen’s friends told Amanda of a time that Stephen cared for his father, who had a glioblastoma brain tumour.

“He called my dad because his step-mother was having a really hard time with some of his symptoms, and she was panicking,” recalled Amanda. “He said, ‘why don’t we just call Steve, and maybe he can offer some help.’ So my dad’s friend called my dad and my dad said to him, ‘I’m just going to blow out the candles on my birthday cake, and I’ll be right over.’ And in true form, he left his own birthday party, raced over, made the hour-long drive to get there and comforted his mother and cared for his father, and that’s the kind of person he was.”

It’s the kind of memory that clashes with what Amanda and her family experienced later in his life, when she wrote on the Facebook group that his “personality started changing, he was blamed for his behaviour, and he eventually lost everything – career, relationships, life savings, and who he was as a person.”

The changes were subtle at first, said Amanda, but when he was about 40, she said her mom noticed he started to become obsessed with religion, at first becoming interested in praying, then later writing a book about salvation, a message he became intent on sharing. The details of his fixation, which led to unprofessional and inappropriate behaviour and the loss of his licence to practice medicine, are well-documented in news reports from that time.

“We had a hard relationship with my dad because of what happened,” she said. “At the time, because it was such an insidious progression of changes and symptoms, it was like the boiling frog phenomenon, where, over so many years, he changed.”

It was difficult for the family to persuade Stephen to see a doctor about what might be causing the personality change, until they became concerned about his dangerous driving and were able to have him seen.

“[The doctors] saw enough to understand that this had been going on for a long time, and we’ve been kind of dealing with this and struggling with this as a family for a long time, but it was clear to them that something else was going on,” said Amanda. “They ended up finding a brain tumour … The brain tumour was eventually the acute condition that took his life, but while he was in the hospital getting treated, they were wondering if [he had] frontotemporal degeneration because of the symptoms, the history.”

Dawson was diagnosed with bvFTD, or behavioural variant frontotemporal degeneration.

“He had a genetic mutation that causes FTD, which was diagnosed through a blood test,” Amanda told the Times. “We were able to connect the dots once we got the diagnosis that this was the same disease that both his sister and father had.”

She quotes Dr. Bruce Miller at the University of California, San Francisco, a leading expert in FTD, to explain:

“Unlike Alzheimer’s disease, where memory is the problem, classic frontotemporal dementia strips people of their humanness. Patients lose empathy for others, they become disinhibited, they lose their ability to make rational judgments, they become addiction-prone and I think in general, by the time I see a patient, with frontotemporal dementia, the whole social network around the patient has been destroyed … This disease for me became in-road a mirror into understanding what is uniquely human. Constructs of the sense of self – the very things that we like in a human being – begin to disappear … The frontotemporal dementia patient is the ultimate underdog. And I’ve wanted to take away the blame for their disease, and explain to families that it is the specific circuit in the brain that degenerates in frontotemporal dementia that changes the person, that changes who they were.”

Amanda, who works in public speaking, notes the Steve Jobs quote that states the dots are easier to connect in hindsight.

“People were quick to judge his behaviour, and I was the first in line,” she said. “I didn’t understand why he was acting out and turning into someone we didn’t recognize; why religion became a compulsive addiction to him; why he became erratic, sometimes violent, and detached from reality. I was upset that he let his new religious beliefs interfere with his work and his family, and was very upset at the thought of him hurting anyone. This was not the man I remembered from my childhood: my dad who was larger-than-life, who loved and encouraged us, painted beautiful landscapes, loved children and animals and people of all backgrounds, took us out sailing on Mountain Lake, and dedicated his life to caring for his patients. His extreme ideology and behaviours became a wedge between him and the rest of the world.”

Though some close friends stuck by him, Amanda said those years were very difficult for everyone who knew her father, as he experienced extreme, violent outbursts, extreme religious ideology and repetitive behaviour.

“What no one understood at the time was that the wedge between us was actually frontotemporal degeneration. Not religion, not poor judgment, not my dad abandoning us, but a neurodegenerative brain disease. It took us 20 years to understand that none of this was his fault.”

Frontotemporal degeneration, according to The Association for Frontotemporal Degeneration, is the most common form of dementia for people under age 60, representing a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. The ATFD site notes that “FTD brings a gradual, progressive decline in behaviour, language or movement, with memory usually relatively preserved,” has an onset that ranges in age from 21 to 80 but typically between 45 and 64; has a length of progression varying from two to over 20 years and is considered less common and far less known than Alzheimer’s Disease, often being misdiagnosed as Alzheimer’s, depression, Parkinson’s disease or a psychiatric condition. It can be genetic or sporadic.

The diagnosis meant that the family had some answers for Stephen’s uncharacteristic and hurtful behaviour.

“The impact of this disease has a ripple effect far beyond the patient,” said Amanda. “In my dad’s case, he lost everything: his career, his reputation, precious relationships and years with his kids, friends and family members, life savings, health… everything. But we all lost out on my dad. My family, our friends, and all of his patients who graciously responded to my Facebook post to tell me what a gift he was to the community…. we all lost a great man and a contributor who started out with the most noble and heroic intentions, and then became the ultimate underdog. In the final year of his life, fences were mended and we were able to be a happy family again, the way it was when my brothers and I were small children. He was peaceful and full of joy. It was a gift from the universe.”

Though the positive memories she heard about her dad were meaningful, Amanda had reached out to the Facebook groups to share details of a grassroots fundraising effort she hoped would go viral, in memory of Stephen, who died in 2016. Becoming connected with the AFTD, she has worked with them for a volunteer for four years now.

“I’ve met so many other families who are currently on this journey and I can tell you that the impact on caregivers is enormous,” she said. “There are so many factors playing into the fact that FTD is the most common young dementia in the world, and yet, most people have never heard of it. It’s not very well-understood in the medical community, either.”

Inspired by the ALS ice bucket challenge, which went viral in 2014 raising over $220 million for amyotrophic lateral sclerosis, or Lou Gehrig’s disease, Amanda shared a message in private Facebook groups serving the FTD community, asking if they thought they might be able to do something similar.

“I was overwhelmed by the response to that and had 50 people sign up to volunteer,” said Amanda.

Together, they launched the #FTDhotshotchallenge during World FTD Awareness week, which happens from Sept. 27 to Oct. 4, asking participants to film themselves taking a shot of hot sauce, tag friends on social media and challenge them, and donate to the AFTD.

“We have all been through hell with this disease, but we are rising up from the ashes, stronger because of all that we all have in common: a deep love for our families and a drive to make life better for the next generation of people with, and touched by, FTD,” said Amanda. “We are breaking the cycle of stigma, trauma, violence, and other issues that often come hand-in-hand with this disease.”

Within two weeks of the launch of the campaign, Amanda said the group has exceeded their $100,000 goal, with donations ranging from $10 to $20,000.

“People all around the world, including in the Netherlands, Italy and the UK, are doing the #FTDhotshotchallenge, saying the words ‘frontotemporal degeneration,’ and telling the world about what it means to be affected by this cruel disease,” she said. “Many are telling their stories for the first time, bravely sharing what in the previous generation was misunderstood or kept secret. I am grateful to this community of people who have been through so much, and raise from the ashes with courage and strength.”

Amanda applauds those who have been able to share their story, acknowledging that for too many years there has been stigma around the disease, that “families suffer privately, quietly, in shame and in the dark.”

The online presence of the #FTDhotshotchallenge, money raised for research toward treatment and a potential cure, and awareness being shared could change that.

“I do feel like there’s a little bit of, just even shining the light on this is bringing some dignity to people who have suffered, and I think it’s a hard year for people whose parents who in LTC facilities right now, who can’t see their parents or loved ones. This is offering some hope to our community, which we really, really need, in a dark time. This is shining a light.”

Amanda said she is involved because of the love for her family, including her son, who she hopes can live in a future without the disease, and to help other families who are experiencing what she did.

“And if there’s just some little morsel of hope out there, I want to help connect people to that hope,” she said. “I’m doing that for my family and all these other amazing families in the FTD community who, we need a cure, we need more people to know about this disease, and we need hope. It’s not a job, this is like a calling…you know, much like how my dad felt about about serving the community in Minden.”

For more information about the #FTDhotshotchallenge or the AFTD visit https://www.theaftd.org/.