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Conversation between Maria Shriver and Lisa Genova, author of Still Alice
Mimi S.
Posted: Tuesday, March 31, 2015 3:34 PM
Joined: 11/29/2011
Posts: 7000

You'll have to dopy and paste.

It's over a half hour, but you can pause the tape.

I found it very interesting with a wide range of topics covered including the writing of the book and her interest in and knowledge obtained about dementia.

I don't know about you, but when I need to retrieve something from my brain, it will usually take a while. Maybe minutes, maybe house and sometimes days. lisa explained what is happening.

Quite a bit of discussion about Early Stage.

At the end a wish that cognitive health will one day be discussed at our annual check-ups. The reality: few doctors in practice are currently knowledgeable about the topic.

At the beginning the microphone is not positioned properly for Maria. It eventually gets fixed.

If you do watch, tell us what particular ideas stick with you.

Iris L.
Posted: Thursday, April 2, 2015 8:47 PM
Joined: 12/15/2011
Posts: 15806

Thank you, Mimi, for locating this segment and this video. Maria Shriver and Lisa Genova seem to the be the most prominent people activating for Alzheimer's disease awareness.

I read the book when it came out and I recently saw the movie. My impression appears to be the opposite of what they wanted to portray. The spoke about hope. I did not get an impression of hope, but of the opposite.

My impression is that the book and the movie focus on suicide at a suitable response to a diagnosis of early Alzheimer's Disease. Alice is stopped by outside forces. If she had not been stopped, she would have carried out her plan, and the book and the movie would have been over at that point.

Yet there was no discussion of the failed suicide attempt by the family or the doctors. Why not?

Will the public be interested in helping and fundraising for people whose plan is suicide?

In real life, one of the directors of the film, diagnosed with ALS, desired to continue in his profession of filmmaking for as long as he could. He died after the film was completed, in fact, after the Oscar Awards. In effect, he died with his boots on. This, to me, is a contrast to the message portrayed by Alice, who tried to commit suicide unsuccessfully, and then floundered, until she died.

There was no mention in the movie of Best Practices, or focus on end of life issues, or living a fulfilling life. There was one episode when Alice wanted to spend more time with her husband, but he wanted to move halfway across the country and begin a new job. He had little time for his ailing wife.

I recently watched the dvd, Still Mine, about a husband who builds a smaller house for his wife with Alzheimer's, because he realizes she can no longer navigate their larger home, and he wants for them to stay together. All he wants is what's best for her.

Iris L.

Mimi S.
Posted: Friday, April 3, 2015 7:16 AM
Joined: 11/29/2011
Posts: 7000

Thanks for your reactions, Iris.

This is one topic we'll have to agree to disagree on.

I felt the movie accomplished its goal of bringing the problem of Younger Onset Alzheimer's into the open for public discussion.

The husband, in the movie, did bring up the topic of suicide in a round-a-bout way. She denied it and he dropped the subject. The movie was not a documentary of how best to deal with the subject. And such a movie would be tremendous.

It's a movie about , probably, how most families deal with the subject.

Iris L.
Posted: Friday, April 3, 2015 1:48 PM
Joined: 12/15/2011
Posts: 15806

I don't think we disagree, Mimi. I agree with you, that the movie presented how most people deal with EOAD in the present time.

My personal belief is that in real life, there is a more hopeful option. I learned this from you, Mimi.

In the talk, Lisa makes the point that Alice had the more rapidly progressing form of genetic familial EOAD, which is rare. It is 1% of all AD cases. I don't believe the rarity was brought out well in the movie.

At some time in the future, I would like to compose a letter to both Maria Shriver and Lisa Genova and give them my feedback.

One point Maria mentioned that I found so remarkable, is that a woman in her 60s has twice as much chance of developing AD as developing breast cancer. Yet how much attention is paid by the public and by doctors on breast cancer prevention, detection and treatment, compared to the same for AD?

In fact, I believe a story and a movie could be made out of the facts presented in their half hour dialogue. Thanks again for locating it. I hope everyone gets to view it.

Iris L.

Mimi S.
Posted: Friday, April 3, 2015 7:15 PM
Joined: 11/29/2011
Posts: 7000

Iris, You picked on two points that I also remember in the video.

First, I don't recall the rarity of her type of AD being mentioned in either book or movie.

Second: the comparison between chances of getting AD or Breast Cancer at age 60 was astounding.

Posted: Saturday, April 4, 2015 4:57 AM
Joined: 4/2/2015
Posts: 45

I happened upon this thread after logging out and a few things caught my attention,.... the chance of getting breast cancer and AD after age 60.

I have not seen the movie, read the book or viewed the interview so probably am not qualified to speak on such. I did read an interview with the author on another website that impressed me, which fails me now.

However, having been diagnosed with breast cancer at the age of 37 and now going through this complicated series of events involving my neurological functioning at the age of 48, I am very well aware of any type of early onset disease. "Elderly" Diseases happen to young people and it infuriates me for doctors to not recognize that fact and act upon it. Just because tests and blood work do not correspond to a disease, age should not be the deciding factor that deters further investigation. I battled cancer twice and never once showed any correlation with tumor markers and had a 5 cm tumor and never had any increased liver enzymes or tumor markers with liver metastasis but had a positive liver biopsy of a 2 cm tumor.

I know I'm ranting, hyped up on Ritalin and need to go to bed,

Sorry for the hijack, but your right Iris, AD does not get the recognition it deserves in younger adults. Perhaps Alice will bring this to light.

I probably don't need to bold this rant.

Posted: Friday, April 17, 2015 6:11 AM
Joined: 9/12/2013
Posts: 3333

God I love rants. I do! Such a relief!

I am invited to speak on a panel about this movie in May.

This pissed me off - the financial wherewithal to live any way they wanted! Why is every freaking movie or novel about someone from big cities and loaded with money.

My own answer is that as a nation ignoring ALZ is because of the disparity in options and the use of family members as sole care giving sources. People bankrupted by our medical system, insurance itself is too costly and complicated.

To discuss ALZ is to uncover poverty, the lack of quality care for the less financially sound and homelessness in America among other things.

I found the Harvard Harvard Harvard and beach houses and brilliant healthy obnoxious children and husband lessened my concern for the main character. As Iris pointed out she considers suicide (because of her belief this is a tragic horror show that will leave her a burden and empty vessel?).

Glad it got out there, glad it makes people talk, it was a movie (you know I think I did see it!?) with good actors. Valuable in that.

I want to see the other movie mentioned about the smaller house - reminds me of LoneStray and his fabulous book. I learned so much from his book I dream of it!

This is great for me - giving me ideas for the panel discussion set for May. Beware of my own rants but hey, somebody has to do that part, might as well be me.

thanks for links, posts!

Mimi S.
Posted: Friday, April 17, 2015 9:45 AM
Joined: 11/29/2011
Posts: 7000

Do tell us more about the pane. Topic? Where?

Iris L.
Posted: Friday, April 17, 2015 1:08 PM
Joined: 12/15/2011
Posts: 15806

How wonderful for you to be picked for this topic, Alz+ I know you will make a great presentation!

You probably did not get a chance to view the interview between Maria Shriver and Lisa Genova that Mimi posted. It is about 30 minutes long. Here is the interview:

I wonder actually how many patients diagnosed with YOAD actually make a suicide project like Alice did. She not only had a plan (suicidal ideation), but actually got the pills together, hid them and made out instructions for herself. The only thing that stopped her plan was that she was distracted and dropped the pills on the floor.

A large number of patients with suicidal projects would be a very important public health project.

The dvd about the man buiding a house is called "Still Mine." It is about a woman who develops late onset AD.

Iris L.

Posted: Friday, April 17, 2015 7:43 PM
Joined: 9/12/2013
Posts: 3333

Iris - the movie Still Mine! I want to see it! how did I ever miss it?

Mimi -

The panel discussion will be in Ashland WI or Washburn at a movie theater.

There are 2 showings with the panel discussion on stage between showings.

Sometimes when winging it I forget what I'm talking about, although that does not make me stop. I am in learning mode again so want to hear other's opinions and offer hope. Wish the dang book was done so I could plug it.

Love you all, the boards really were a huge blessing when I was first diagnosed and ever since. Just now waking up to get more involved in person. I have been hiding for some time, in seclusion.

While in desert this spring I had several one on one conversations in the hot mineral swimming pool with women that went on for hours. While ALZ was mentioned it was accepted and not primary part of talks. It feels good to be around people who are not afraid or turned off by lost thoughts, slow speech, and so on. I think when I used the calculator to figure out how much time I have left ( ) and came up with 5 years, so 2 years of still able to type, read and speak - got me energized.

The calculator link I posted on EOAD board. Seems to me that I have had this illness for a really long time and should not be thinking it will be over any time soon. So, onward!

Iris L.
Posted: Saturday, April 18, 2015 6:12 PM
Joined: 12/15/2011
Posts: 15806

Here is the trailer for Still Mine:

Iris L.

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