Will This Happen to Me?
When we got the official diagnosis of FTD (with the diagnosis and adios follow up), and after the idea of “flowers on the brain” vanished, I was left with sleepless nights googling everything there was to google about Frontotemporal Dementia. My search history conveyed my late-night rabbit hole expeditions, and let me just tell you, I didn't like what I discovered. Words like progressive, terminal, no treatment, no cure were followed by sentences of “the body begins to fail,” or “the person afflicted with FTD will likely become unrecognizable.”
WHAT?
HOW?
It felt like I was walking through fog those early days after diagnosis. I was trying to maintain my day to day that included going to work, eating, thinking, relating, etc., but my mind was consumed with my dad and his flowered brain. That beautiful brain that belonged to the person that I thought was invincible.
As the novelty of the diagnosis evaporated and my dad began to progress, I attended a webinar all about genetics. That word had come up on my google deep dives time and time again, but I continued to turn a blind eye. I wasn’t ready to begin to process the idea that perhaps one day this could happen to me. One day, I could have flowers on my brain too.
WHAT?
HOW?
Look, I am definitely not a left brain, math/science person (can you tell?), so the whole gene mutation component of this disease still leaves me scratching my head, BUT I am a person who is at risk for developing FTD. My dad wasn’t the first person in his family to have a neurological disease that falls under the FTD umbrella. So I know (even with my right brain) that losing myself and my brain is a very real possibility. And, you guys … it’s terrifying.
There are times when I fumble my words or walk in to a room and think, “Why did I come in here?” There are situations where I get SO angry about something very minuscule or I forget a word when I’m retelling a story. And there is nothing like that type of panic; that type of fear is unexplainable. And I know for certain I am not the only person who feels it. I’ve spoken to many of you who feel the exact same way.
I guess a good word to describe some major feelings around this type of uncertainty is very helpless and extremely vulnerable. You guys, I get it. Trust me. And it’s easy to get stuck in the place of feeling defenseless against something like FTD. But, in true Frankie fashion, I want to offer the flip side of the coin. What if there was something you could do? Even though there is no cure for this disease, there are ways to get us closer to a world where FTD doesn’t rip through families and leave members feeling anxious about encountering the same fate.
LearnFTD has become a place where I find solace. They provide extremely useful information about genetics AND they offer a clear and concise place to start in terms of learning your genetic status. If finding out scares you (HELLO! Terrified over here!), LearnFTD.com is still a wonderful resource for up-to-date information on FTD. Getting involved in research, raising awareness, pushing forward and plucking those flowers from our brains… all of it is so important to reach the goal of hopefully saying ADIOS to FTD in the future.
Lets do it together.
