Fighting FTD: Norway man, family deal with rare 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. This is the second part; the first was published in Friday’s Daily News.
NORWAY — As Peter Johnson’s form of dementia began to advance, his family made some adjustments to explain his changes in behavior.
His daughter, Erin Walla, had business cards made that stated, “Greetings! Peter has Frontotemporal Dementia. We thank you for your patience and understanding.” They also listed the AFTD website for those wanting to know more about the disease.
“Having these cards was a huge help, especially if he said something inappropriate,” said his wife, Sunny Johnson.
In 2008, at age 68, Peter was diagnosed with frontotemporal dementia, or FTD, though his family is certain he’d been dealing with the disease long before doctors determined what was wrong. Unlike Alzheimer’s or other dementias, those with FTD typically show symptoms as early as age 45 and it 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.
The former science teacher, principal and superintendent of Breitung Township School District still had a full vocabulary up until the last few years, when he struggled to find the right words. “Even then, he was very good at diverting the conversation,” Walla said.
Pete was great for telling stories about growing up on the farm with his parents, Fred and Lila Johnson, and his childhood friends, they said.
But FTD eventually takes its toll. One day the person has that brain cell for a specific function and overnight it dies and the person is different the next day, they said.
Peter’s anxiety and obsessive-compulsive disorder — OCD — tendencies also went into overdrive. “We just had to let him go,” Walla said.
After he was no longer socially active and got used to being at home, Pete got very uncomfortable going out. “He would obsess about it all day,” Walla said.
They both pointed out he never lost his vanity — he would be very upset if he didn’t look good.
Everybody who suffers from FTD is different but in many ways similar, Walla said.
In the summer of 2014, Erin and her husband, then living in Colorado, came back to visit the Johnson family farm in Norway. By this point, Peter was no longer allowed to be left alone.
It was then decided she or her sister, Jennifer, who also lives in Colorado, needed to move back, as an assisted living facility or nursing home wasn’t an option.
“Mom was so focused on keeping him safe and taking care of him, her health was suffering,” Walla said. “She was in fight or flight mode until we got here.”
Sunny noted she wasn’t getting much sleep, as she needed to keep an eye on him around the clock. She also struggled to find help — there was a lack of home health aides or they were unqualified.
They went from being wife of 53 years and daughter to Pete’s caregivers.
Walla said she was able to separate the two personalities. “This is not my dad, this is frontotemporal dementia. My mom, on the other hand, it was difficult, as he was taking this out on her and she had to absorb it,” she said.
“I appreciated how much the kids helped me,” Sunny said. “As I was finally able to deal with my own health issues.”
Sunny shared the caregiver journey with one of her best friends, whose husband also had dementia. “Although it wasn’t the same type, we got to walk this walk together — it helped me so much,” she said.
It wasn’t until the last five years, as the disease advanced, that he became difficult.“He would get very creative with words when he was angry,” Sunny said, adding they learned to carefully handle each situation with him.
Physically, Pete was “lucky,” as he was in relatively good shape for so long, Walla said.
But he experienced unusual symptoms, such as his body temperature was off. “He could wear a jacket in the middle of a hot day, didn’t sweat or be uncomfortable, or if it was 20 below, he wanted to take his shirt off,” Walla explained. “Just weird stuff like that.”
Pete would say if he shook his head it felt “sloshy” and he could hear and feel things moving. He would also pass out if he bent over too far.
It was trying at times to figure out if he was OK or in any pain when unable to communicate.
In the last months before his passing, he struggled with swallowing, which can cause aspiration pneumonia — a common cause of death for those with FTD, they said.
Pete had taken a fall in his backyard in early June 2021. He had developed another infection and they knew at this point it wasn’t good.
“We were able to take him home and get hospice care,” Walla said.
The family was grateful for those final few days, as they were all together and able to say “goodbye.”
Research shows that there are four different genes that can lead to frontotemporal disorders.
Walla, her sister, as well as her cousin, are concerned they have inherited these genes. Pete’s brother had Lewy body dementia.
“I have already done the testing with the same neuropsychologist my dad had, just so I had a base line,” Walla said. “I did well — the interesting thing is that I struggled with the same stuff my dad did.”
She added her sister is thinking about having the genetic testing done.
The Johnson family stressed that when you know something isn’t right with a loved one, get to a doctor and keep pushing for answers. They suggest getting a test done that would indicate a cognitive decline and looking for a facility that specializes in neurological issues.
“FTD can have a huge stigma attached to dementia — especially when they do crazy stuff,” Walla said.
Because his illness went so long undiagnosed, it became a financial burden, Sunny noted. Many of the expenses — lawyer fees, court costs and therapists — trying to address his behavior could have been prevented with an early diagnosis. She also advises those who have a loved one going through a similar situation get their legal documents, such as power of attorney, prepared right away.
As of today, there is no treatments or cures to stop the progression of FTD. However, research is improving awareness with the hopes of opening more doors to better diagnosis, improved care and eventually new treatments.
In the past 10 years, Walla has raised $25,000 to help fund research. To donate to the Association for Frontotemporal Degeneration, go online to https://www.classy.org/give/381228/#!/donation/checkout.
“I wish my dad had Alzheimer’s, as there is so much more awareness and funding,” Walla said.
She is working to put together packets of FTD information for local medical facilities, as well as law enforcement agencies, on how to deal with FTD patients.
They hope to reach other families in the Upper Peninsula and surrounding areas who have a loved one with FTD.
“I have no idea how many people there are,” Walla said, “but I know I can be of some help.”