Her mother gave her the genes for a rare form of dementia, but a Minnesota woman is fighting back

By Susan-Elizabeth Littlefield

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    MINNEAPOLIS (WCCO) — In the United States, one in three people face memory loss or dementia.

In life, you never know what cards you’ll be dealt. Linde Jacobs lost her mother in 2022, which makes being a mother to two young daughters tough.

She’s struggled with how to properly grieve and cope. She’s struggling with making sure her daughters see strength and resilience.

There’s also the fear. Unlike most people, Jacobs knows what cards are in her own future.

“I was speechless in that appointment,” Jacobs recalled. “I had never been delivered news like that before. It was something so shocking that I really didn’t know how to grasp it and internalize it.”

Aside from years of love, Jacobs’ mother had also given her a cruel gene that causes a condition nearly impossible to diagnose.

“She was boundary-less”

Alison Lee was a proud mother of three girls, a successful physical therapist and a doting grandmother. But when she turned 50, life turned upside down.

“Some of her impulses would be to touch people in public, so if she saw someone, she would go pull some guy’s pants up because she said, ‘I can see your underwear.’ She was boundary-less, she didn’t realize the social norms we place on what is appropriate,” Jacobs said.

Jacobs, a nurse herself, pounded doctors for information. She was told it was depression but she knew there was more.

Meanwhile Lee’s bizarre behavior continued. She started shoplifting, and after dodging a traffic stop she ended up in jail.

Jacobs’ sister received a letter from a fellow inmate saying, “your mom doesn’t belong here, I think she has dementia.”

“It was affirmation, first time we had somebody look into this from a third party perspective and say this is dementia,” Jacobs said.

It was a diagnosis no doctor had given. Lee hadn’t lost her memory but she had lost the mind she once had, and something clicked with Jacobs.

Turns out, that inmate known only as “Angie” was right. That was 2018, and Jacobs still marvels at the gesture.

“The incredible kindness of a stranger to know that not only did she recognize this, but she recognized my mom as being vulnerable and then kept her sane,” Jacobs said.

Jacobs now had a clear path thanks to a to a stranger she’d never be able to thank.

But with the context of dementia, Jacobs was able to figure out a lot. She recalled that her grandmother had similar impulsive behaviors.

It was genetic — it was the mapT mutation of frontal dementia known as FTD. It’s a disease that hits at 50, and instead of losing memories, patients often lose impulse control and self-awareness.

“Honestly, I had a lot of guilt that I was so intolerant to those symptoms when my mom would display them,” said Jacobs.

Jacobs watched her mom progress; one day Lee fell and hit her head. Because of the FTD, her brain couldn’t take the swelling and she died at 62, leaving devastation and frustration.

“I had that understanding level while she was alive, this is not her, she is not doing this to me, this is happening because this disease is causing this symptom,” Jacobs said.

But she says it was hard to separate her mom from those symptoms. Amidst the grief, she learned that she and her two sisters had the gene, too. Jacobs said immediately, her mind went to her little girls.

“Truly, that I passed it on to my daughters,” she said.

Jacobs realized that there was very little information about MapT. She could barely Google the condition that she was most certainly going to have.

Then, she and her husband happened to see a documentary on gene editing.

“And so he just Google searched “FTD, CRISPR,” and then we came across a physician that’s based out of San Francisco, Dr. Claire Clelland,” said Jacobs.

“It’s just a matter of time”:

In a busy laboratory on the other side of the country, Clelland received an email.

“I get contacted from patients, particularly gene carriers from around the world, but I remember just replying that I would try to help in the best way that I could,” she said.

That was the start of a powerful friendship.

Jacobs set out on an advocacy journey across the nation, speaking to the nation’s top neurologists and making them better understand this tricky and brutal disease that effects 40,000 Americans, essentially putting FTD on the map.

Clelland said Jacobs’ personal touch has fueled the process.

“And if you look at new therapies that make it through the pipeline and actually get to patients, often, they have patient supporters and champions that don’t give up even when the work gets really hard,” Clelland said.

And that hard work landed Jacobs on the front page of the New York Times. From her frustration, to her grief, to that inmate’s letter, she laid out her story for the world to see, giving her even more opportunity for revelations like the one she had in February inside a University of Minnesota research lab.

It’s there she saw a mouse with the frontal temporal dementia mutation she has. That mouse is a symbol of hope. It’s part of promising research at the University of Minnesota.

“Linde sent me an email, she’s actually the first FTD patient I’ve ever met,” said Dr. Michael Koob, who is leading a team of researchers.

Koob and his students are getting promising results for a treatment for people who know they have the gene.

“So, so for her, it’s just a matter of time. This is going to happen. You know, at this point, I’m fairly confident that there will be an intervention that is going to work,” said Koob.

From the mice to the microscopes, things are looking up.

WCCO followed Jacobs and her pursuit for two months. During that time, she had another breakthrough. It came at a coffee shop in River Falls, Wisconsin.

A reunion:

After years, Jacobs finally found the inmate who had sent her the initial letter about her mom. She messaged her on Facebook, and the two set up a time to meet.

When Jacobs met Angela Olson, the tears welled.

“I have no idea what the Lord is doing. I think it’s amazing that he brought our lives together. I never realized, even writing that letter, what it was doing, right? I just knew that your mom was a really great person and needed help,” said Olson.

As they marveled at the letter, they marveled at the moment.

“I think there’s so many times in life that, like, people are brought into our lives, right, for a poor purpose, right, and a bigger purpose,” said Jacobs.

“Yeah, she’s actually the beginning of my journey with sobriety,” said Olson.

Olson knew the ropes when it came to jail; she was 20 years into her addiction.

“Never, all these years, my whole life, I never understood how to have, actually, emotions. It’s like I was rejected in my life, betrayed by people, but yet understand how to have love or emotion, and just was so suppressed. And so then I ended up coming to Teen Challenge,” Olson said.

Now she’s seven years sober and thriving as a manager at Minnesota Adult and Teen Challenge Recovery program. She spends her days sharing her story.

Olson recalled that Lee “just kept repeating herself.” As a nurse herself, she had some experience with dementia.

She marveled at the New York Times article with her letter in it.

“Just reading how Linde said, you know, she was easily diagnosed by inmates before any doctor diagnosed this condition. And I was just, thank you, Lord,” Olson said. “Thank you that something that I did would help this woman.”

Now, Jacobs has another partner in her fight to honor her mother and protect her daughters. She recently was invited to a gala in New York, with Anna Wintour of Vogue helping to lead fundraising.

They raised $1.9 million dollars for frontal temporal lobe dementia.

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