The Lived Experience on Brain Donation and Guest Feature: Until We Knew...

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The Lived FTD Experience: Brain Donation

By Cindy Odell

I was diagnosed with bvFTD more than ten years ago. My immediate reaction was one of shock even after considering that two of my relatives were currently dealing with dementia, and many had already died from it. The second reaction, the one that has stayed with me was, “this has to end! How can I use my diagnosis to make a difference so my generation is the last to be afflicted with FTD?”

Having that determination has somewhat (mentally anyway) eased the realities of my progression. Maybe, just maybe, I really can help make a difference in the search for a cure!

I never worried about how my family would feel about my donating my brain to research. There was no question in my mind. When I explained my wishes, my family readily accepted my decision.

I explained the necessity of learning if my FTD diagnosis is correct. If it was, I felt that other family members needed to be made aware so they could prepare for the future. I even suggested they invest in long-term care insurance and additional life insurance. Some were shocked and offended by this. I explained I was not suggesting that they have FTD, just that even the remote chance is worth preparing for now, because after diagnosis, it is too late. Besides, what could it hurt?

Learning if my FTD diagnosis is correct was just the first of my reasons. Beyond that, I knew that research was the only way to find a means of treating FTD and, eventually, I hope, curing it.

My FTD diagnosis came from a neuropsychologist my family doctor had referred me to, located at a medical center with a dementia research department. There my diagnosis was confirmed, and I was re-evaluated on a regular basis in conjunction with their research. During my initial evaluation, I was given information about brain donation along with cards to give to family members, friends, and my other physicians. I have one taped to the top of my desk, right in the middle, where no one can miss it. I carry one in my wallet next to my state ID card.

In the meantime, before anyone can have my brain, I still use it, along with my mouth and my writing skills, to spread the word. Friends and family have told me that, since my diagnosis, I am boring. I suppose I may seem that way, but I can ignore their eye rolls.

There are things I can no longer join in on and I willingly admit to talking too often. But to me, at this point, that is the most important thing I can do… because I love them. I won’t stop advocating, and since Brain Awareness Week takes place this month, they will be hearing it one more time.

Guest Feature: "Until We Knew, Twice: Life with MND/ALS and FTD"

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.

Advancing Hope: Participate in FTD Research - Apathy Study

AFTD does not “endorse” or “approve” any study or take funding to publicize research opportunities. We provide information and encourage you to consider whether this study seeking participants is a good fit for you. To stay informed about research opportunities, sign up for the FTD Disorders Registry by clicking here.

Cerevel Therapeutics is studying CVL-871 as a new experimental drug for apathy across dementias, including frontotemporal dementia (FTD). Apathy is a loss of interest in everyday life and lack of motivation. Apathy is often a forgotten symptom of dementia, although it is very common in people with dementia. There is currently no cure or approved medications for dementia-related apathy.

This study aims to find out:
•   How safe the study drug is
•   How well it is tolerated
•   How it may how it may work in the body

You, or someone you care for, may be able to take part if you/they:
•   Are 50–85 years of age
•   Have been diagnosed with dementia (including FTD)
•   Have dementia-related apathy (loss of interest in everyday life and/or lack of motivation)

For more information about the study and research sites participating in the study, visit ClinicalTrials.gov.

CVL-871 has not been approved by the FDA or any other health authority.

Learn how to get involved in additional FTD studies by visiting the Studies Seeking Participants page on our website.

Studies Seeking Participants

DON'T MISS OUT ON...

Watch our recent webinar recording: Brain Donations -- Who, What, Where, When, and Why? This Perspectives in FTD Research webinar was made possible with the generous support of Alector.

A recent overview of AFTD staff, Board members, medical advisors, and volunteers who have been featured in both domestic and international news stories following the news of Bruce Willis' diagnosis.

A recent study by researchers at the Paris Brain Institute that highlights the importance of differentiating between different forms of disinhibition in bvFTD.

A new book that explores FTD and other atypical neurodegenerative diseases through the lived experiences of families affected by dementia, and the researchers that study such diseases.

An opportunity to connect, learn, and engage at AFTD's 2023 Education Conference in St. Louis, MO. Click here to learn more.

Your chance to join AFTD at an upcoming race in 2023:

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* Limited number of guaranteed entries available. Please contact fundraising@theaftd.org to secure a spot.

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