Erin's Story

Our family’s journey with FTD may be in its infancy. A genetic test in 2022 revealed that my husband has a MAPT gene mutation. Neither of his parents have the mutation. 

My husband’s initial symptom was slower movement in his right hand in 2019. He had been working desk jobs in the legal field since 2005, so naturally, he thought it was carpal tunnel. Less than a year later, he complained of significant cramping in his right foot, and in the summer of 2020, his affect, ability to feed himself, and speech became impaired. 

The neurologist diagnosed my husband with Young Onset Parkinson’s Disease (YOPD) in October 2020. We developed the mindset that while our lives may be different than expected, we would get through the challenges as a team. 

With that team approach, we made it through the COVID years but during this time, my husband had anincrease in paranoia and compulsivity. He installed more and more security cameras, purchased a gun “to protect our COVID supplies” and wanted to buy everything that was the color orange.   

Late summer of 2021, my husband’s cognitive difficulties became more prominent. We started preparing for the likelihood that my husband, a senior corporate counsel for a major bank, wasn’t going to be able to work much longer.

He started losing his executive function, ability to type, and ability to speak clearly. He couldn’t figure out the big picture and instead would get bogged-down with insignificant details. The neurologist kept increasing his YOPD medications in hopes to help with these issues and also suggested genetic testing. We received the genetic results in 2022, which noted the MAPT mutation as well as FTD. My internal reaction when seeing “FTD” was “NO, NO THIS CANNOT BE!” When I was a guardianship attorney early in my legal career, I helped a woman whose husband had BvFTD. 

In April 2022, he was officially diagnosed with FTD-MAPT genetic mutation, but they kept the YOPD diagnosis as well. We worked with employment law attorneys to qualify for long-term disability insurance coverage. Even with this proactive approach, the disability insurance company was not easy to work with. My mother-in-law also helped my husband start the application process for Social Security Disability. When the Social Security paperwork came, I knew to make sure I addressed both his diagnoses.

For almost the first year of his retirement, my husband remained relatively independent but on a snowy day in January 2023, he was in a car accident. He was thankfully unscathed, but the vehicle was totaled. We determined it was time for him to stop driving.  

Shortly thereafter, my husband’s behaviors changed. He started joining dating sites and connecting with woman he didn’t know on websites and social media apps. He fixates on things and can’t move on until they’re addressed. It makes us nervous to bring him to stores because we don’t know what he will try to buy. He often wanders around our house naked, and we worry the neighbors may see him. 

His movements also continue to decline. While he used to text or use a speech app on his phone to communicate when his voice won’t work, any form of typing is becoming more and more difficult. Despite all his behaviors and movement struggles, he works hard to remain active and engaged. He exercises daily, tries to assist with household repairs and maintenance, attends our son’s activities and appointments, and wants to go everywhere with us. We are blessed that he still tells us he loves us through both words and actions.