Linde Jacobs has used her lifelong encounters with FTD, along with her deep love for her family, as sources of strength and inspiration in her role as an advocate.
Linde's grandmother began hoarding random items as her FTD symptoms progressed, leading to her relocation to a care facility due to aggressive behavior towards Linde's grandfather. Following her grandmother's passing in 2006, Linde pushed for an autopsy to confirm the FTD diagnosis. The report indicated a "tauopathy causing FTD," but the genetic link remained unidentified.
By 2010, Linde's mother began displaying FTD symptoms, starting with sleep problems, followed by personality and mood changes, and eventually, by 2012, behavioral symptoms such as making inappropriate comments and unprofessional conduct at work. In 2015, Linde and her sisters, concerned about their mother's worsening behavior, insisted she see a neurologist before babysitting her grandchildren. The neurologist found no signs of dementia and attributed her symptoms to recent divorce-related trauma. Her behaviors persisted and caused ongoing problems at work and home. In desperation, Linde sought help from various sources, but they all provided the same answer: no diagnosis, nothing they could do.
In 2018, Linde's mother was arrested and sent to jail after a minor traffic infraction and then failing to stop for a police officer. Linde and her sisters received a letter from their mother's cellmate, who outlined her suspicions of dementia. After her release, Linde's mother finally received a bvFTD diagnosis from a neurologist in 2019, and genetic testing revealed the presence of the MAPT genetic mutation, a common cause of inherited FTD. Despite the diagnosis, support services were limited, and her mother developed additional problematic behaviors like hoarding.
Linde, who is a nurse, emphasized that family members can advocate for their loved ones in various ways, whether by persistently seeking a diagnosis or helping care facility staff understand their loved one better. She recalled how her mother advocated for her grandmother's dignity when she moved to a group home. "My mom was her power of attorney, and I watched her take care of my grandmother. My mom was a fierce advocate as her mother became wheelchair ridden, incontinent, and nonverbal. She made accessible clothing for her, restocked hygiene supplies, and brought us to visit her often."
Linde's mother passed away in 2021 due to complications from a fall, and Linde learned her own genetic status four weeks later, discovering that she, too, carried the MAPT mutation. After allowing herself time to grieve, Linde found motivation to work towards a more tolerant and accepting world for FTD patients, sparing her husband and daughters from the shame and guilt she had experienced.
Linde's journey as an advocate began with an email to a researcher about a CRISPR study, leading to numerous conversations with researchers. She delivered the keynote speech at the Tau Consortium's 2023 conference and represented MAPT families at the National Institutes of Health. Linde is now a founding member of Cure MAPT FTD and leads our Research Advocacy team.
Linde shared her story on the Remember Me podcast, and closed the episode with a touching letter to her daughters:
To my beautiful girls,
I'm so sorry about the future that lies ahead of us. If I could, I would give anything to prevent and protect you both from the same hurt, loss, and anguish I endured because of FTD. It seems so unfair that we had to lose my mom, and your Gaga, only to be facing the same potential loss of myself.
Please know that I'm fighting so so hard for our future to be different. To change our story. So if there isn't a cure or treatment or answer by the time my mind decides to change, I hope that the life we lived until then will be enough. When you can, look back and feel the deepest love and support, and that those memories provide you the comfort you need. Girls, we have but one life to live, and I promise that we're going to fully do so together until we can't. I'm so sorry for what you will have to endure. I wouldn't wish it upon anyone. But I know you both have hearts as big as the sky, so I know you will make it through. I've done everything in my power to make this easier for you logistically, but I can't ease the emotional pain of losing a mom.
So...we will live as a family to the fullest, creating all the memories, going on adventures, and living with passion, purpose, and positivity. The life we create now, I hope to be so full, bursting at the seams, that it will sustain you during the moments that are hard. That you will always be able to remember me as I am right now.
You are all my yesterdays, todays and tomorrows, for always. I love you both.
Mom
Listen to Linde's full story here, on the Remember Me podcast.
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