Happy Birthday Bruce - A look into FTD

Last month we heard the news, Bruce Willis has frontotemporal dementia. It was news that those of us in that world expected to hear after has family had previously announced he would no longer be in public/films due to aphasia. It was news that those of us in that world had gotten about our loved ones and have been living with already. And while the WIllis family owes the FTD community nothing, I think I can say we appreciate when they share glimpses into life with FTD, facts about FTD and feelings about watching someone you love die a little each day due to this awful disease.

This morning as I scrolled I saw Demi Moore's post about celebrating Bruce Willis' birthday over the weekend. Having a father with this illness, I may have watched with a different set of eyes then the typical Bruce Willis fan. I saw the look in his eyes, like my dad he knows his family - FTD often does not steal memories first. But his eyes showed some uncertainty in them. Maybe unsure what to expect at this celebration, maybe unsure about being asked to deviate from his daily routine. I noticed how his eyes kept glancing back at Emma, his wife. I see that in my dad - maybe not so much in his actual eyes anymore, but my mom is what grounds him, where he knows he is secure and safe. I noticed his movements and that music seemed to relax him even though his movements themselves seemed a bit rigid. Again music also helps my dad - my mom actually found and joined a choir with him for people with all forms of demenia and their caretakers. I noticed how he held something in each hand. There are figit objects that sit near my dad's favorite chair at home, though I am not sure how much he uses them.

On a positive note, I noticed that smile. And I love my dad's smile, his whole face lights up and his eyes shine - I notice it most when he is performing on stage with the choir, when he is telling a "dad joke" or upon seeing one of his children or grandchildren. I noticed the love between a dad and his daughters. My dad would have moved the earth for me all my life (and he often did, followed by the quote "it was easy") until this disease started and now it is my turn. I may not be moving the earth for him - though I surely would if I could, but I will do my best to share with the world what a wonderful man, husband, and father he is and what an awful disease is taking him from us and this world way too soon.

For more on frontotemporal dementia, please visit www.theaftd.org