Frontotemporal Dementia

Our Story
On June 14, 2022, my family finally had a name for the disease that had been slowly taking my mom away from us piece by piece. At 53 years old, my mom was diagnosed with Frontotemporal Dementia (FTD).

For about three years, we knew something was wrong and had been following up with doctors and fighting the healthcare system to get the same answers every time -- it is just depression and anxiety. At this point in time, my mom had lost her job and was struggling to complete simple daily tasks. When she received an MRI, they told us everything looked normal and all they saw was typical aging brain atrophy (shrinking).


As time went on, we began to notice more of my mom slipping away. She could not work the microwave, pump gas, or follow a recipe. She was not carrying on conversations, she could not answer simple questions, she would wear the same outfits over and over again, she would prefer to eat the same meals every day – yet, she had no idea any of this was really going on. One of the harder parts of this for our family has been the fact that my mom also has Type 1 Diabetes. As she has lost the ability to do many things, she has also lost the ability to take care of her diabetes on her own.


She finally went back for cognitive testing in June of 2022 where they told us that her cognitive testing and reports from family align with FTD. She then went for a PET scan where they confirmed the diagnosis.

As time goes on we all know how this disease will end. However, for now, we are grateful for every moment we have and every laugh we can get!