Bruce Willis’ wife, Emma Heming Willis, is speaking up on both “the blessing and the curse,” that has come with the Die Hard actor’s dementia diagnosis. Willis’ family announced in March of last year that he had been diagnosed with aphasia – and later that he had frontotemporal dementia.
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Today happens to be World FTD Awareness Week (at the time of writing this), and Emma Heming Willis made sure to stop by NBC’s TODAY Show in order to bring more awareness to the condition and the impact it’s had on her family – starting with even being able to define what was happening to Bruce.
“The most important thing was to be able, for us, to say what the disease was, explain what it is, because when you know what the disease is from a medical standpoint it sort of all makes sense,” Heming Willis explained. “It was important that we let [our daughters] know what it is because I don’t want there to be any stigma or shame attached to their dad’s diagnosis or any form of dementia.”
In breaking down how they’re coping with the new life situation, Hemwing Willis was frank about the fact that there was as much “grief” as there was “love,” in their house:
“Honestly, he is the gift that keeps on giving. Love. Patience. resilience. So much and he’s teaching me and our whole family,” Heming Willis revealed. “For me to be out here doing this, this is not my comfort zone. This is the power of Bruce.”
“It’s just really important for me to look up from the grief and the sadness so I can see what is happening around us. Bruce would really want us to be in the joy of what is,” she added. “He would really want that for me and our family.”
Emma Heming Willis’ account of the challenges that have come with Bruce Willis’ diagnosis is apparently not an uncommon one for those dealing with FTD. Susan Wilkinson, chief executive of the Association for Frontotemporal Degeneration, provided additional information about why FTD is often misdiagnosed:
“It’s one of the most confusing parts because it is less common. Most doctors aren’t familiar with it, so it can take almost four years for people to get diagnosed on average,” Wilkinson explained. “…They accrue many misdiagnoses along the way. Often depression, bipolar disease, Alzheimer’s.
What we know is that obviously the disease can start in the frontal and temporal lobes like the name signifies and one of the things that the frontal lobe controls is self-insight. So we really don’t know. Some people, it’s the first thing they lose, any understanding that they themselves have changed, and other people retain that for a long time.”
For more official information on Frontotemporal dementia, check out the Mayo Clinic website.
