FTD: The Long and Windy Road to Discovery

 Frontaltemporal Dementia (FTD) is a condition that affects the frontal and temporal lobes of the brain. It is very similar to Alzheimer's Disease because a lot of the symptoms are almost identical. However, it starts showing up in people between the ages of 40 and 65. - Information obtained at the Mayo Clinic website. 

Mom is a 67-year-old woman who has always inspired everyone who met her because of her intelligence, wit and determination. She is a polio survivor, but - aside from what seemed to be a slight challenge walking - she has always been able to do everything anyone else could do. My grandma, her mom, made sure of it. She grew up knowing she was capable of anything as long as she wanted to do it, so it was no surprise when she raised 4 kids and took on the care of her late aunts, in-laws and father. She had Dad by her side, and both of them always seemed to me like a force of nature I was supposed to measure up to and make proud. 

Mom's brain power was always sharp. She always had the right answer to any question. She loved maps, puzzles and books. Books were her passion, so much so she went to college to get a degree in Librarian Studies. She worked for decades at Brazil's Federal Health Department, working side-by-side with medical doctors as an auditor. Her demeanor has always been kind, and her approach was always non-threatening, so people felt comfortable working with her. When she retired, about 8 years or so ago, she thought she was going to be able to start a new chapter in her life: one of many travels and adventures alongside Dad who always counted on her easy-going personality to help him during trips all over the world. She would be the guide in international trips, translating maps and helping people get what they wanted when and where they wanted. 

In 2018, she came to visit us with her best friend Rose. We had loads of fun as always. I noticed she seemed more tired and less able to keep up with physical activities, but I did not think much of it. 

In the Spring of 2020, the world shut down with Covid-19. Little by little, we started noticing changes in my mom's behavior. I noticed that she was getting increasingly distracted during our calls. 

In 2022, my parents were all excited to finally travel after the world shut down with Covid-19. They were taking a group across Canada, then they were coming to California to spend a couple weeks with us before heading back home. My Great Aunt (my grandma's sister of whom my mom took care) had died in 2020, and my parents took on the care of my grandpa. It was great relief to see them planning a trip again. But this time the planning seemed different. Mom was not as engaged as before, showing signs of mental stress and physical decline as well. She was having more difficulty walking, and they even considered cancelling the trip. But they did not. 

In May of 2022 they set off to Canada, and when they arrived there my mom - the one who has been always kind, measured and well spoken - became someone completely different. She was confused, paranoid that she was being held hostage at a hotel near her home (still in Curitiba). She did not recognize having travelled to Canada. She was not able to walk. My dad was at a complete loss. He did not know what was happening, and he thought (rightfully so) that his wife of almost 45 years was going crazy. She started texting her friends in Brazil, telling them that my dad kidnapped her and was holding her hostage at this hotel downtown. She told me that "the Canadians were taking over Curitiba" because she looked outside and saw Canadian flags all over the plaza below the hotel. She did not understand where she was. To top it all, she was losing her ability to control physiological functions. My dad, who started the trip thinking he was going to manage a tour group, had to deal with a major medical situation in a country where he did not speak the language. Worst, I was not even able to help him. Carol (my sister in law - Andre's wife) managed to contact her cousin who lived a couple hours from Toronto, and he was able to schedule an emergency medical appointment for my mom to see what was going on with her. We thought she had a stroke. If that was the case, she would not be able to continue the trip. No stroke! Thank goodness!

In June of 2022 my parents arrived in San Francisco, and we got to see my mom's condition firsthand. She was completely out of touch with reality. She was confused about where she was. She would start talking about events and trips that happened years before. She was also verbally aggressive towards my dad. She would blame him for everything even though he was doing his best to care for her. She would keep him up all night, talking to him. Her mobility deteriorated fast, and she was mostly on a wheelchair while here. We tried to get her to walk, but she was very resistant. Her conversations were filled with confusion. On their way home, they had another crisis. Dad, having not slept well for most of the time here, was obviously exhausted. He nodded off for a bit, and when he realized she was not sitting next to him. He found her in the back of the plane. She told him she wanted to go outside on the balcony. He tried to get her back to the seat, and she started screaming that he was hurting her. This almost caused him to be arrested on the plane. Thankfully people saw the interaction and intervened. The flight attendants kept her in the back for a while, and dad was able to sleep for a bit. She was fine, and she acted as if nothing happened. Dad was sure she was doing this on purpose.

We agreed that she needed psychological help, so we reached out to her old therapist, who at first was very helpful. She referred us to a neurologist who had helped her own father. Dr. Marcos was very kind, patient and knowledgeable. Regardless of the support we thought we had, as time went by, mom was becoming less coherent. 

In November of 2022, Kiyo and I went over for Thanksgiving. Mom was definitely not the same, but she was still mostly herself. Her behavior was somewhat erratic, she would have bouts of rage against dad, but most of the time she was there. 

In September of 2023, another blow to our family: my grandpa (her dad) passed away. Her therapist was no longer productive. In fact, she was more of a hindrance than help. Instead of noticing clear signs of mom's cognitive deterioration, she blamed dad for mom's erratic behavior.

At the start of 2024, Andre (the youngest of us) discovered colon cancer. Everything seemed difficult for the family. Dad was overwhelmed at having to care for mom on his own. That year I traveled to Brazil twice: once in March and once in June. In March, I accompanied mom and dad to an appointment with Dr. Marcos, the neurologist. It was at that consultation that he brought up Frontal Temporal Dementia. 

I had been thinking about it, reading anything I could about dementia and early onset Alzheimer's. I told Dr. Marcos that looking at mom's state, I could see that as a possibility. He said her brain was deteriorating fast, and it was (at that time) comparable to the brain of an 80–90-year-old person. He also said there was significant shrinkage, indicative of dementia. When I brought up FTD, he said it was exactly what he was going to suggest as her diagnosis based on her scans, behavior and decline. 

FTD is Frontal Temporal Dementia. It is the type of dementia often described as "early onset Alzheimer". It is often seen in people between 45-65. 

The diagnosis was given. Mom has Frontal Temporal Dementia. What do we do with that information?

FTD image: AARP Dementia Resources