The FTD journey can be an isolating experience; it can often feel like nobody knows what you are going through. For Swedish author Elisabet O. Klint, whose late husband Mats was diagnosed with ALS with FTD, the journey was isolating because Mats’ FTD wasn’t properly addressed.

“The ALS was really well looked after medically,” said Klint. “The FTD, to be frank, was almost completely ignored. It was quite a frightening and unnecessarily upsetting ordeal for us and our children.”

Klint shares the story of hers and Mats’ FTD journey in Until We Knew, Twice: Life with MND/ALS and FTD. While she originally began writing the book as a private diary for her to articulate her emotions after Mats’ passing, Klint would eventually get her manuscript published to share her journey with the world.

“I shared my journey because I felt so lonely, and unnecessarily so,” Klint said. “I wanted to change things by being loud about what I went through. I wanted people who were unaware of FTD to know that it exists and be aware that they can help families being affected by it.”

AFTD talked with Klint about her journey, how it impacted her, and any insights she had to offer as a care partner.

The FTD Journey

The first sign that Klint and Mats had that something was wrong was a growing difficulty with speech. Mats began to have trouble getting words out, but according to Klint, he didn’t think much of it at first.

“I remember so clearly the first time I brought it up to Mats, I told him ‘You’re struggling sometimes with your speech,’ and he said ‘yes I’m aware of that.’” said Klint. “He put it down to stress and ignored it for some time.”

It wasn’t until years after the family moved from Sweden to the UK that Mats would seek medical attention for his speech difficulties. Klint recalls that his general practitioner also wrote the speech difficulties up to stress.

However, Klint was concerned that it could be something worse. At first, she believed that it could have been a tumor, or a stroke that had gone unnoticed.

“I eventually contacted a neurologist, and we had an MRI scan done.” Klint said. “The scan didn’t show anything at all. Mats was relieved of course, but I still worried about what was causing his speech difficulties because they got worse and worse.”

At some point after his MRI, Mats abruptly decided that he wanted to live apart from Klint. After moving away, Mats also began to go to medical appointments alone, keeping Klint out of the loop.

It was only in hindsight that Klint realized that this behavior was caused by Mats’ FTD. “At the time though, I was really struggling with what was going on.” Klint said. “It was a strange time; I worried so much that something was wrong with him.”

Mats’ symptoms only continued to get worse. Eventually, he was referred to an ear, nose, and throat doctor who noticed something that prompted a referral to a second neurologist. Mats would finally receive a diagnosis of ALS.

“Three months later, he was diagnosed with FTD as well.” Klint said. “A professor who looked after Mats for his ALS suspected that he had FTD fairly soon after meeting him, likely from the information that I shared with him. Mats was referred to a clinical psychologist who conducted a screening, and later confirmed the professor’s suspicions.”

Despite the conflicting feelings she had, when Mats turned to Klint for support, she provided him with all the love and care she could muster. In the book, Klint writes that being at Mats’ side until his final breath was “natural, and even a privilege – a means for me to find peace and happiness in a life that I know is fragile.”

What Could Have Been Different?

Like so many others, Klint notes that she faced a lack of resources and information for FTD, and that help was relatively limited.

Something that Klint feels could benefit families affected by FTD is assistance creating a care team, such as introducing families to potential team members. She notes that this could alleviate the difficulty involved with trying to seek assistance from a diverse field of professionals.

Klint also feels that a personalized approach could go far in helping families feel more comfortable. Near the end of their journey with ALS with FTD, Klint notes that the professional caregivers that came to their home took such an approach, and it made her and Mats feel more secure.

“They respected us, they made Mats the focus of their day.” Klint said. “Every time they came, they joked with Mats, they looked after him, they were so warm. Mats related extremely well to them. We could have met someone like this much earlier if we had been introduced to them and knew about this kind of personalized care.”

Physical copies of Until We Knew, Twice: Life with MND/ALS and FTD are available through Barnes & Noble, as well as through the book’s publisher, Black Spring Press Group. Digital copies are available through Apple Books.

If you’re interested in reading more about the lived experience with FTD, be sure to check out AFTD’s recommendations for reading and viewing.