The recent announcement that Bruce Willis has FTD brought me back to the day we learned our own mom had the same miserable disease.
My first thought was, “Bruce, you poor son of a gun.”
I was not prepared for the overwhelming sense of sadness I would feel upon learning of this news.
I wouldn’t wish FTD on my worst enemy.
FTD is the cruelest, saddest disease no one has ever heard of and is completely underfunded.
This rare degenerative brain disease affects between 50,000-60,000 Americans and while our mom lived with dementia we shared our journey with our TSP community.
In doing so, we accidentally created a space that has become a source of strength for so many in the dementia community.
Our mom lived with FTD for 6 years after she was diagnosed and later died in April 2019.
It is our continued mission to inspire brain health and spread awareness for degenerative diseases like FTD.
Currently, there is no cure or treatment for FTD and the cost of care is staggering as it most commonly affects people ages 45-60.
The fact that the Willis family has so bravely come forward to share in their journey means this disease will become more recognized and more money and effort will be put into research.
For the first time, I feel hopeful and equally heartbroken for them and the devastating journey they are already navigating.
I am in awe of those that take their unfortunate circumstance and turn it into an effort to help the greater good, and so grateful to the Willis family for sharing their own journey with dementia.
With continued awareness and conversation surrounding FTD, I know that a future with more treatment and a cure is forthcoming.
I ask that while you go about your day if you should come across someone that seems odd, or off, or gross, choose kindness.
That person might be living with an invisible disease like FTD.
If you are struggling, have questions, or are wondering about whether FTD may be impacting a loved one you can call the AFTD Helpline at 1-866-507-7222.
If you are looking for support as you navigate your own journey with FTD, check out our friends Maria and Rachel of the Remember Me Podcast.
Remember Me Podcast was created to honor the lives of individuals touched by Frontotemporal Dementia and the family and friends walking the journey alongside them.
Thanks for dropping in.
TO LISTEN TO OUR PODCAST, “COZY CONVERSATIONS WITH THE SISTER PROJECT”, PLEASE STREAM ON SPOTIFY, APPLE, ANCHOR.COM, OR ANYWHERE ELSE YOU STREAM PODCASTS.
To learn more about how you can support The Sister Project and the content we create, please head HERE.