A Minnesota couple struggles with ‘the cruelest disease you’ve never heard of’

Heartbreaking, doesn’t do justice to the story of a Minnesota family who were included in last night’s CBS’ 60 Minutes broadcast, which focused on a little known brand of dementia called frontotemporal dementia.

It’s not Alzheimer’s; it focuses on a different part of the brain. It strikes people under 60. It steals their humanity, the thing that makes people who they are.

Amy Johnson and her husband Mark settled in Windom, Minn., after they were married in 2006. They have four young children — three boys and a girl.

Three years ago, Mark started showing one of the symptoms of the disease: he stopped caring.

Amy recalls a day when she left Mark in charge of their sons, then three and two, only to come home and find the boys playing outside, alone by a busy street, while Mark sat inside watching TV, oblivious. On other days, he began to display compulsive behavior she had never seen before.

Amy Johnson: He couldn’t stop eating. I started locking the food up. He would walk down to the grocery store and buy more. I took his credit card. He’d walk down to the grocery store and steal food.

Bill Whitaker: And these changes that you saw, did you ask him, “What’s going on?”

Amy Johnson: Yeah. And he just said, “Oh, I don’t think anything’s different, is it?”

It was. Mark began making inappropriate remarks to a female co-worker at the company where he worked as a manufacturing engineer.

Bill Whitaker: He was fired?

Amy Johnson: Uh-huh (AFFIRM). And his reaction was, “Oh— oh, I guess okay. So what’s for supper tonight?”

Bill Whitaker: What was your reaction?

Amy Johnson: I was just devastated. I was seven months pregnant at the time with our daughter.

Mark now lives in a facility an hour away from Windom. It costs $7,000 a month to care for him. Out of pocket.

“He would be devastated to know that that’s where his retirement savings are going and that they’re not going to his family,” his wife says.

“You have a partner who is no longer a partner,” reporter Bill Whitaker said in an interview. “Amy, for one, is so compassionate and so involved and so determined to give him everything she has that she’ll never give up on him.”

He’s been given two to five years to live.

Mark is 40.

Related: From Bizarre Behavior to Dementia Diagnosis (Next Avenue)

  • Gary F

    Jim Thuente, St Paul, died at age 57 in 2011, a friend of mine.

    Not sure if its the cruelest, but its pretty damn close if it isn’t.

  • Keith P.

    Wow. Never even heard of this before. That’s terrifying.

  • Brian Simon

    Sudden onset of mental illness in the self or a close friend or family member is right up there with fears about injuries to my kids.

    A friend was recently admitted for sudden paranoid & delusional behavior. Young kids at home, but fortunately a supportive spouse, family & friends. They’re back home & at work, but it was extremely scary for everyone, with no real diagnosis or explanation. Was it a one time thing? A sign of things to come?

  • maamamar

    Long term care people, families and professionals, deserve a special place in heaven.

  • Guest

    “I really miss talking with my spouse, and here they are sitting in front of me” Said regarding Alzheimer’s, but still reality for many.

  • Guest

    Quote from the show: “The part of his brain that says this is a bad idea, doesn’t work anymore.”

  • bjnord

    Thanks for sharing this, Bob. Heartbreaking.