I saw an update on Bruce Willis

GothicGremlin

Stuff I track ….

As I read through the article, I saw that he just turned 69. I guess he stepped away from acting in 2021 or 2022, which means he was older than 65. I always thought that FTD was kind of an early onset kind of thing, but maybe I'm wrong. Or maybe he's just at the outer edges …

I thought I'd post the article because I liked that their blended family all seems to be working together to help him, which is just really nice to see. They may be sugar coating things a bit, but that's okay.

Bruce Willis' daughter shares update on his health: 'He's so good'

Jeanne C.

My ears always perk up when I hear about him. His FTD diagnosis became public around the same time as my husband was diagnosed. The Willis family has done a lot for FTD awareness and it's generous that Emma gives so much time and access. The jealous part of me can't help but show its ugly face when I consider the resources they have. No doubt he has fulltime professional caregiving (which I don't begrudge except when I'm cleaning up pee at 3 am). But I don't discount how hard it is for them or any family. I know I can handle the physical stuff. It's the repeated gut punches of continuously losing my love and best friend that gets to me.

If he retired from acting in 2019 at 64 or 5, I'm sure he was showing symptoms for some time before that. Ralph was diagnosed at 64. Hindsight tells me he had been showing symptoms for at least 6 or 7 years prior.

CStrope

Bob is the same age as Bruce, so his story always hits close to home for me too. Bob had not been diagnosed for very long when they came forward with the Aphasia diagnosis. I knew right away that there was more to the story. @Jeanne C. I agree, their ability to harness so many resources that the rest of us are not able to aquire make it tough, but on the other hand I'm glad that they are able to find ways to get through this hell. I only wish that my hell didn't feel quite so hot!!

GothicGremlin

My hell was mighty warm as well, @CStrope

Peggy was diagnosed at almost 59 in 2018, and since I didn't live with her, I didn't see all of the symptoms that a spouse or a co-worker would notice on an everyday basis. I just saw the big stuff - like when she lost her car in San Francisco and we walked around for 5 hours looking for it (we found it). That was a day.

There was an evening during lockdown when I talked to Peggy's ex-manager on the phone (the two of them were quite close), and I told her that I hadn't seen many of the MCI symptoms. She told me to hold on and she got her work journal that she's kept for 20 or 30 years, and she told me exactly when she started noticing Peggy's symptoms - late 2010-early 2011. I was gobsmacked. She didn't realize it was AD/FTD, but she knew something was up. And she saw Peggy every day for at least 8 hours a day, so she would have seen it. And then it all made sense, practically text book - 7 years of MCI, and then the diagnosis. All of the above is what I think about when I think of Bruce Willis. Just that whole MCI process, and the questions you have about whether something is normal behavior or something else.

So yeah, I always notice the Bruce Willis articles too. I'm also jealous of the resources they have, but at the same time, I'm glad they have them. I'm sure he's getting great care. I feel the same way that you do @Jeanne C. - I'm glad that his family has been so generous with their time on this. It's got to be so hard on them, particularly his wife.

Jeanne C.

Ok. This just happened.

https://www.facebook.com/share/r/Ree8NdEagBs8XuhH/?mibextid=xfxF2iError

GothicGremlin

What happened? I'm not on facebook……

Jeanne C.

I worked with my state senator to get Delaware to officially name 9/22-29 as FTD Awareness Week. Emma Willis posted a video thanking me. It's kind of surreal.

GothicGremlin

I'm behind the times! I just saw that you posted that in the caregiver's forum. Thank you for raising the issue with your state senator — what you did is impactful. As someone who used to work with members of the California legislature (and their often wonderful staffers), I can say that many of them really want to hear from constituents. I'm so glad you were able to do this.

I can't even imagine how surreal that must feel with Emma WIllis!

CStrope

https://alzconnected.org/discussion/comment/214279#Comment_214279

OMG that is absolutely amazing!!!!!!!!!!!

CStrope

@Jeanne C. I just used the tool kit and emailed my governor and state reps. Hope I get as good as a response as you did. Any other suggestions for getting results?

CStrope

Jeanne C.

https://alzconnected.org/discussion/comment/214465#Comment_214465

That's awesome. I also suggest following up with a phone call. Things moved quickly once I spoke to the Senator's aide by phone. She was very empathetic. I helped her with language for the resolution and it was turned around literally overnight.

CStrope

https://alzconnected.org/discussion/comment/214527#Comment_214527

My state senator got back to me ASAP but they're already out of session for a couple of months, so I was too late. So they gave me the information to ask the Governor for a Proclamation.