It's a surreal feeling...

Reading the news of a celebrity you are so far removed from yet have it hit your chest as if the news was regarding your own parent or spouse.

We all recall how Robin Williams' passing struck the hearts of each one of us. He was also the victim of dementia: Lewy Body. We can all recall the countless moments in which that man entered our hearts and left a lasting impression.

In the same way, Bruce Willis’ news of officially being diagnosed with Frontotemporal Dementia (FTD) strikes the heart of everyone who has walked this wretched FTD path. Through Bruce’s roles, charisma, and handsome bald head, we know him. This is not a disease you would wish upon anyone you know.

Photo Credit to New York Post

Many of you reached out to me today. Thank you for that. It is what prompted this email.

"Did you hear...How do I feel about it?" I was asked.

  • I feel sorrow … for Bruce & his family.
  • I feel lighter … for the hope it may mean for the FTD community.
  • I feel guilty … for feeling even an ounce of positive feelings about this.

The two most common variants of FTD present as behavioral or language (aphasia) changes. It is the most common form of dementia under the age of 60 and so different from Alzheimer's that it can take years to diagnose. The stigma that dementia is “just part of getting old” is simply not true and the families are tired of doing this alone and feeling dismissed.

There’s a dark joke in dementia support groups, “If my husband had cancer, I’d at least get a casserole from the neighbors. Everyone runs when they hear dementia!”

I hope this announcement brings awareness.

I hope someone reads his story and realizes their husband or wife may not have become apathetic or depressed. Perhaps this sparks the realization that it's neurological and this gets them to the right doctor.

I hope this announcement brings some peace to families feeling desperate for empathy and compassion.

I hope it gives courage to our friends and relatives to be comfortable asking the family of the diagnosed how they really are --- maybe even bring over a casserole.

Bruce and his family may be our hope to open up the doors of empathy, but I would never wish this upon anyone. So yes, to answer everyone's question: I have a LOT of feelings about this.


 - Betsy

Founder & daughter to late Mama Hall, FTD


P.S. For those of you that are asking "but what IS FTD? - thank you for asking. That's the first step! Here are two links with more information.



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