The Johnson family of Norway, Michigan, shared their 20-year journey with FTD in a two-part article published by Iron Mountain Daily News during World FTD Awareness Week.

Peter Johnson began to show symptoms as early as the late 1990s; according to Johnson’s daughter, Erin Walla, he became distant and “cold.” It was initially thought that Johnson was depressed after becoming superintendent of the local school district; a veteran science teacher of over 30 years and former principal, Johnson missed being in school alongside students.

In 2000, Johnson was accused of home invasion, taking the family by surprise.

“What? No, this is Pete Johnson — the superintendent of school, someone who was so well-respected in the community,” Erin Walla, Johnson’s daughter, recalled thinking. “Why the hell is he going into people’s houses?”

While Johnson was able to avoid trouble, he resigned from his position with the school district, and sought mental-health counseling.

Johnson’s wife Sunny eventually learned that he had begun to visit the homes of friends and acquaintances in their community.

“My pastor approached me about Pete,” Sunny said. “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.’”

After a home invasion incident resulting in jail time, Johnson and his family began to visit medical professionals to find answers. In 2008, Johnson went in for a PET scan which resulted in a diagnosis of FTD. According to Walla, the family’s neuropsychologist couldn’t believe they missed the diagnosis.

Walla began to research FTD after Johnson’s diagnosis, starting on AFTD’s website, where she found an online support group. Walla gleaned invaluable insights from other care partners, including medications that would help alleviate symptoms (and that wouldn’t exacerbate Johnson’s condition.) Walla also started using awareness cards that helped others in her community learn about Johnson’s condition.

Johnson stayed active and in good spirits; his friends regularly took him golfing, he attended football games at the school he used to teach at, and he officiated Walla’s wedding (albeit with the occasional lost word). However, as FTD progressed, his stress and anxiety increased to the point where he stopped leaving home.

The stresses of being a care partner took a toll on Sunny, who was struggling to find a qualified care professional. With help from Walla and her sister, Jennifer, Sunny was eventually able to look after her own health issues. Sunny also began to share her experiences with a close friend, who was also a care partner for her husband, who had dementia.

“Although it wasn’t the same type [of dementia], we got to walk this walk together — it helped me so much,” Sunny said.

In the last years of Johnson’s journey, his behavior changes became more intense. He began to experience falls, and eventually had difficulty swallowing. After a fall in June 2021, Peter developed an infection, and was taken to hospice care, where the family eventually gathered to say goodbye.

After Johnson’s passing, the family has continued to raise awareness of FTD in their community. Walla works to create informational packets for local medical facilities and law enforcement agencies and hopes to reach out to other families affected by FTD.

“I have no idea how many people there are, but I know I can be of some help,” said Walla.

The Johnsons emphasize going to a doctor when you notice something wrong, and getting a diagnosis as early as possible.

You can read part 1 and part 2 of the article on the Iron Mountain Daily News website.

If you are having trouble getting a diagnosis for FTD, reach out to the AFTD HelpLine 1-866-507-7222 or info@theaftd.org for help locating resources. If you are in the U.S., AFTD’s website can help you find resources in your state. Click here for resources in Canada, or click here for a list of resources available around the world.