Fighting against FTD
Family details 20-year battle against early form of dementia
In recognition of World FTD Awareness Week, Sept. 25-Oct. 2, the family of Peter Johnson, who passed away June 10, 2021, after a 20-year battle with frontotemporal dementia, shares their story to shed some light on the impact of this rare brain disease.
NORWAY — When Peter Johnson began to act differently, his family at first thought he was just going through a “midlife crisis.”
Eldest daughter Erin Walla recalls noticing slight personality changes in the late 1990s, when her father was in his 50s. He seemed to grow more distant, disconnected.
“Just kind of cold — really no emotions,” Walla said.
In 1997, Johnson became superintendent of Breitung Township School District after serving as principal for four years and science teacher for 32 years.
“Being a superintendent and principal — that is a whole other skill set. He really missed the classroom and students,” said Walla, so the behavior changes and signs of stress seemed to make sense at that time.
“I also believe he was probably a little depressed,” she added. “Looking back, I think he knew something wasn’t right.”
The family wasn’t expecting what came next. In 2000, he was accused of home invasion.
“What? No, this is Pete Johnson — the superintendent of school, someone who was so well-respected in the community. Why the hell is he going into people’s houses?” Walla said.
His wife, Sunny, remembers sitting outside the Michigan State Police Post in disbelief as he was being questioned. “I thought it was a mistake or misunderstanding,” she said.
Peter was able to “talk his way out” of the incident, as he had created a story that made perfect sense because of who he was.
“He was a genius at hiding and covering his actions up at that time,” Sunny said.
“Even at this stage, we were still kind of just chalking it up to that middle age thing,” Walla added.
After the accusation, Johnson resigned from his position at the school. His coworkers were in shock, as he was able to continue to do his job and showed no unusual signs. He decided to seek a mental health evaluation.
Peter also started drinking heavily — they think it was to cover up what was going on in his head.
For the next couple years, in addition to regular doctor visits, he went through counseling.
Sunny became aware he had been making frequent “visits” to friend’s homes. “My pastor approached me about Pete. He told me, ‘He walked in and had a funny, glazed look on his face, and when they asked him what they could do for him, he just turned and walked out,'” Sunny said.
Sunny believes she only heard some of the stories, as friends were trying to protect her.
In 2002, Peter again faced home invasion charges. This time he was convicted and ordered to serve jail time, as well as probation.
This was a pretty big red flag for the family — they knew something was off, Walla said.
Each week, Sunny drove her husband to a Christian Counseling Center in Green Bay, Wis., hoping to undercover the “root” for why he was doing these things.
Peter was still unable to express a reason for his abnormal actions.
“We were coming up with all kinds of different scenarios — maybe something from his childhood,” Walla said.
He even tried hypnotism, Sunny said.
“I wish someone would have then said, ‘We need to check his brain,'” she added.
“She knew him better than anyone and knew this wasn’t a mental illness — something physically was wrong,” Walla said.
During the next six years, Peter’s anxiety and stress triggered more problems in his brain. “He began to act more bizarre and weird,” Walla said, although he was so intelligent he was able to hide a lot as well.
He had been to neuropsychologist in Green Bay, as well as many other therapists and doctors, trying to find answers. “I didn’t care what it cost,” Sunny said.
In 2008, with Sunny’s persistance, he was able to get a Positron Emission Tomography, or PET, scan of the brain. These scans are expensive, Walla said, so doctors don’t order them frequently.
When his specialists received the results, they knew exactly what it was. At age 68, Peter Johnson finally got a diagnosis — frontotemporal dementia.
“The doctors came in and said, ‘We have some good news and some bad news,'” Walla recalled. “‘The good is we know what is causing his behavior, and the bad is there is absolutely nothing we can do to treat it or slow down the symptoms.'”
Although devastating to hear, the family also found the diagnosis a huge relief, just to know it wasn’t him.
His neuropsychologist couldn’t believe she missed the diagnosis, Walla added.
Frontotemporal dementia, unlike Alzheimer’s or other dementias, typically show symptoms as early as age 45 and is most common in people younger than 65. In some rare cases, people can be diagnosed as early as their 20s.
FTD is one type of dementia that affects a person’s personality, language, movement, and decision-making. It mostly affects the frontal lobes of the brain, which are crucial in certain functions such as keeping information together and regulating emotion and behavior.
The disease begins to shrink portions of the frontal and temporal lobes of the brain. “Tau proteins collect on the brain and they form protein clumps or tangles. These then form big clumps on the brain, causing it to deteriorate,” Walla explained.
With these missing pieces of the brain, those with the disease suddenly find they have no self control.
“In a majority of the cases, these people have been arrested for something,” Walla said. “It usually rips apart a family before they even have a diagnosis.”
This is different from Alzheimer’s disease, which damages the hippocampal region of the brain and is mostly associated with memory.
The disease typically hits a person in the prime of their life and careers, which was the case with Pete.
Unfortunately with FTD, there is no single test in a living person, as the only way to get an official diagnosis is an autopsy of the brain.
An early physical symptom some patients show is the thinning of the inner retina of the eye.
People with frontotemporal disorders can live for up to 10 years, sometimes longer, but it’s difficult to predict for an individual. One of the problems of this disease is not knowing how long a person has had it before being diagnosed.
In Pete’s case, he battled the disease for 20 years. “Doctors gave him about six years. It didn’t work out that way,” Sunny said with a laugh. “He was so brilliant and he powered through it.”
“We got extra empathy from supporters because he lived for so long,” Walla said. “It’s a very mysterious illness.”
As for Pete, he decided he was going to fight it and pretend nothing was wrong. “He didn’t want to accept it — total denial,” his wife said.
Immediately after his diagnosis, Walla began to educate herself as much as she could about the younger-onset dementia. She started with the AFTD website www.theaftd.org; from there she also found an online support group.
One of the most important pieces of information these caregivers passed on was their knowledge of proper medications. “We learned what he should or shouldn’t be taking,” Walla said. “Most of the drugs, which is used to help someone with depression, have the opposite effect on the FTD brain.”
For years, she continued to research in hopes of finding some combination that would help, as typical Alzheimer’s medication didn’t work.
One of the most effective was THC, the main active ingredient in cannabis. “This worked for a few months until Pete forgot how to smoke,” Walla said, adding this was very unfortunate, as it was helping.
There is scientific evidence that shows THC promotes the removal of toxic clumps of the protein on the brain that start the progression of the disease, she said.
“The fact of the matter is, the families of the people who suffer from the disease know more than the doctors do, as they are witnessing it first-hand,” said Walla, noting they would educate every doctor they came in contact with about FTD. His primary care doctor was also learning about FTD along the way.
Pete remained a “happy camper” once he got past the depression in his early stages, Sunny recalled.
He continued to be very physically active, include playing golf. “His friends were great, taking him weekly — I can’t say enough how thankful I am they never walked out of his life,” Sunny said.
He was still able to perform the wedding ceremony for Walla and her husband, Mike, after his diagnosis. “He lost his words a few times, started rambling and took it to another level, but it was all good,” Walla said with a laugh.
As his disease progressed, so did his filters. “I would take him to Flivver football games, which he loved, giving him the perfect opportunity for him to say something inappropriate,” Walla said. She admits she thought it was funny, as her dad had been so perfect all her life.
He also once started a sing-a-long with other dementia patients. “We can look back and laugh at the stories,” she said.
Look for the second part of this story in Saturday’s Daily News.