When a family sees someone with this illness, they don't recognize them. This is not— the person I married that I love. This is not my father or my mother. This is profound as anything that can happen to a human being. It robs us of our very essence of our humanity, of who we are.
Dr. Bruce Miller
Behavioral Neurologist at University of California San Francisco
Last week was Frontotemporal Degeneration Awareness Week, and having learned so much about FTD, I feel strongly that I can't just sit back and not join in the effort to raise awareness for this extremely challenging and relatively unknown disease.
The first time I ever heard "Frontotemporal Dementia" was from a former Child Life colleague back in 2018 or 2019, when we were deep into our diagnosis chase due to my husband's drastic changes and debilitating symptoms. She had seen a segment on 60 Minutes- Frontotemporal Dementia and immediately thought of us in hearing that the FTD families who shared their stories sounded a lot like what we had been going through.
Later that night, I watched the video for myself. I can remember connecting to the stories of personality and behavioral changes and the loved ones stressing that they weren't the same person that they once knew. That's exactly what it was like for me too, not knowing why my husband was suddenly going through vast personality changes and behaviors that were out of his genuine and kind character.
Yet, what I saw still looked different than what I was seeing in my husband, especially since his trademark symptom was cognitive fluctuations, or what we called "episodes" at the time.
Years later, when a neuropsychologist finally gave us her full attention and shared our concerns, acknowledging his cognitive declines, behavioral changes and Parkinsonism movements, FTD was believable.
To be honest, as hard as it was to hear, we were also grateful to have some form of an answer instead of fighting so hard on our own to find one that made sense of what was going on in my husband's brain and body. Having a diagnosis also meant gaining resources and support, both which are essential for any person living with and/or caring for a neurological condition causing dementia.
After processing the FTD diagnosis for a while, I decided to join the Facebook groups that were recommended to me. I also soon found myself listening to the Remember Me podcast, which shared the personal stories of other FTD families. I found myself relating most to the spouses, especially those battling it at younger ages like us.
But while listening to each FTD story, and ultimately comparing my husband's continued progression to theirs, I just continued to think that his struggles were a bit different. I had actually reached out to the podcast hosts in hopes of sharing our family's story but had a change of heart and shared with them that I just didn't think my husband's FTD diagnosis was the right one after all.
To be honest, it was quite hard not knowing (once again) what disease was taking over my husband's brain and body, and ultimately impacting our daily lives, and more challenging to essentially not know what community we fit into and could gain support and resources, aid in advocacy efforts, and participate in research studies.
But lately, I've come to accept that right now, we are meant to be in the community of not having a formal medical diagnosis as the answer.
Maybe my husband is one of the thousands who suffer from rare disease or invisible illnesses that science hasn't come to fully understand yet.
Perhaps he's in the community of those suffering in silence without a care team, treatment plan, and proper resources because his disease isn't black-and-white or able to be confirmed through blood tests or radiology imaging.
But I've come to see that it still doesn't mean that I can't do my part in sharing what we've experienced and all that I've learned over the years. The people and families suffering from these hard-to-diagnose and life-changing diseases deserve all the support they can get.
So please, do your part to help those in need simply by educating yourself and being more aware that these neurological conditions exist, and sadly can happen to anyone and at younger adult ages.
FTD, Lewy Body Dementia, ALS, Alzheimer's, and any others... they truly change the lives of the individuals suffering cognitively, physically, emotionally, and internally from the array oof symptoms.
Some of the symptoms may seem invisible, but they are very, very real and truly devastating for all of those impacted.
These diseases also create indescribable changes those who love and care for them.
My honest hope is that you never have to experience any of these neurocognitive diseases for yourself.
For those of you in the medical field, in any position, please do your part in learning more about
FTD and other neurocognitive disorders. Your awareness is crucial, and you have the important role to help families feel heard and listened to when they come to you begging for your medical guidance and support.
Honestly, just reading this blog post and thinking about this disease is the beginning of creating more awareness for FTD and these other neurocognitive diseases.
So, thank you.
And if you want to learn more, you can go to the Association for Frontotemporal Degeneration (AFTD).
The media has also been focusing on Bruce Willis's own battle with FTD, so you can also start there as his wife, Emma Heming Willis, has been stepping up to raise awareness and support advocacy efforts. She has even shared that the Remember Me podcast has been a great resource, so I encourage you to start there as it lets you hear the firsthand experiences of the people whose lives have been impacted by the disease, and their spouses, children, and loved ones who share their stories,