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Julianne Moore won Best Actress for Still Alice
Iris L.
Posted: Sunday, February 22, 2015 11:10 PM
Joined: 12/15/2011
Posts: 18509


In her acceptance speech, she said, "people with Alzheimer's Disease are isolated and marginalized. They need to be seen."

Finally, the plight of people with AD is getting mainstream recognition.

I have not seen it yet. Have you?

Iris L.

llee08032
Posted: Monday, February 23, 2015 7:07 AM
Joined: 5/20/2014
Posts: 4408


No I have not seen the movie either. I'm not sure it's playing on the east coast yet. Finally, recognition! Hopefully, that will mean monies donated also!
Shar 123
Posted: Monday, February 23, 2015 7:13 AM
Joined: 2/22/2015
Posts: 10


Hi Iris,
Timing of watching Miss Moore's comment was uncanny as I had just joined this group yesterday afternoon. I thought the same thing, "finally! Someone is speaking up" I haven't seen the movie yet, read the book though.
We still avoid the AD topic here, hubby 51. I'll watch it on my own when I need a good cry. I know it will be quite a reality check for me.
Thank you for your replies to my post yesterday too. I have a question,
How do I bring my husband into the conversation? He gets defensive right away. I'm sure it's scary for him because he knows he's failing, but we can't talk about it.
And, do I need only an elder law attorney, or will any attorney do (to help us with trust, POA)?

Jo C.
Posted: Monday, February 23, 2015 9:40 AM
Joined: 12/9/2011
Posts: 13593


Alzheimer's Disease got a bit of notice on the pre-Oscar shows and on the Red Carpet as well as on stage. I also saw that the Alzheimer's Association ran a commercial ad during one of the commercial breaks as did one of the drug companies.

I found it very interesting and hope it gains traction.

J.


Myriam
Posted: Monday, February 23, 2015 11:26 PM
Joined: 12/6/2011
Posts: 3326


Shar 123, welcome to these boards. You should use an Elder Law or Estate Planning attorney. The Alzheimer's Association may have a list of qualified attorneys near where you live. You may want to call 1-800-272-3900 24 hours-a-day to speak to a care consultant for a referral of a qualified attorney in your community. You can also call the Bar Association in your state directly for a referral. I obtained a living will (which addresses my desires for end of life) and a durable power of attorney (naming a person to care for my estate (property, finances, etc.).
Paul Hornback
Posted: Tuesday, February 24, 2015 12:45 PM
Joined: 8/9/2013
Posts: 584


I haven't seen the movie yet and probably won't until it is out on DVD. Not sure I could handle watching it in the theater.

Shar 123, welcome to our boards and our world. You will find amazing information and wonderful support here from some spectacular people. I hope you will continue to provide input and find hope here.

God Bless, Paul


Iris L.
Posted: Wednesday, February 25, 2015 10:53 PM
Joined: 12/15/2011
Posts: 18509


Here is the Oscar acceptance speech of Julianne Moore.


Iris L.

Mimi S.
Posted: Thursday, February 26, 2015 11:32 AM
Joined: 11/29/2011
Posts: 7027


It is on the East Coast but i the larger venues. I just signed up for it on Netflick, but have no idea when it will be available.

For those with Younger Onset, please be aware that several folks with that could not read the book. it hit too close to home. Think about that possibility for yourself before you spend big bucks for a movie ticket.

Several Younger Onset folks were advisors to Julianne Moore.

I'm currently visiting here in LA where the Oscars fill the local newspapers. Some critics thought the supporting actors/actresses less than stellar. I'm wondering if they were playing the role they were given. I remember that I would get so angry, especially at the husband, because he didn't get it. He would go on planning their lives as if nothing was wrong with her.

I'll also be interested in figuring out why they changed the location from Boston to NYC. Part of the plot in the book involved his lack of understanding as to why his desire to move to NYC would not be good. Maybe they skipped that part in the movie.

Input from those who have seen it?

Iris L.
Posted: Thursday, February 26, 2015 12:46 PM
Joined: 12/15/2011
Posts: 18509


I have not seen the movie yet, but I was impressed with her accpetance speech that I posted above. What did you think of her acceptance speech, Mimi?

Iris L.


Myriam
Posted: Thursday, February 26, 2015 1:19 PM
Joined: 12/6/2011
Posts: 3326


I saw Still Alice opening night with a group of friends who are in the early stages and their partners. The theater was packed. There was not a dry eye in the house...lots of sniffles. Afterwards, a group of us went to a coffee house to talk about the movie and how close to home it was.

The movie is a Must See, but carry a handkerchief. I want to see it again with a little dispassion.

I believe AD is now out of the closet. Hope those whom have dementia and are hiding it will disclose the diagnosis and/or join the movement for a cure.


Callie in Boston
Posted: Thursday, February 26, 2015 6:39 PM
Joined: 12/15/2011
Posts: 429


I saw it today, it's very sad. I would say to make sure you are feeling in a good space before you see it. Or even better, take a friend with you. Tissues a must! She did a great job.
llee08032
Posted: Friday, February 27, 2015 5:23 AM
Joined: 5/20/2014
Posts: 4408


I am looking forward to seeing the movie. A friend promised to go with me. I too was angry at the husband when I read the book. I read the book prior to be diagnosed and tried to keep in my mind that I was reading fiction. Alice's suicide plan was unnerving but at the same time easily understood. I kept thinking there is no way she is going to remember to kill herself and now I can't remember what changed in the story around the suicide plan.
llee08032
Posted: Friday, February 27, 2015 5:44 AM
Joined: 5/20/2014
Posts: 4408


I think the Academy could have devoted some time to advocacy for AD. I have to wonder if they devoted time to focusing on AID's when Tom Hanks won the award for the movie Philadelphia? Hopefully, more attention and awareness will come from the movie. Perhaps we should find a way to write letters to the producer's and Julianne Morre to not drop the ball in advocating for AD and to donate some of their proceeds from the movie to our cause. Maybe the AA could help us in forwarding the letters as they were involved in educating and connecting the cast to persons with AD?
llee08032
Posted: Friday, February 27, 2015 5:59 AM
Joined: 5/20/2014
Posts: 4408


Myriam,

I've never done well with hiding things and always wore my heart on my sleeve. I've told close friend's and family in addition to my neighbors on both sides of me. I misstep, stumble, and misspeak all the time and don't want my neighbors thinking I am alcohol or drug impaired. Fortunately, I have nice neighbors and have had to get help with several things so far. If anyone tries to shame me well shame on them, is how I look at this. I am still back and forth with coming out at work. Also I feel I should not have to worry about getting fired from work if I do come out. That I should be protected by the ADA act as well as the next person with some other type of disorder or disease. Still trying to figure this out while holding on to my middle class economic status at the same time.

Iris L.
Posted: Friday, February 27, 2015 3:30 PM
Joined: 12/15/2011
Posts: 18509


llee08032 wrote:
I think the Academy could have devoted some time to advocacy for AD.

Julianne Moore spoke eloquently in her acceptance speech about the plight of people with AD.



Iris L.

Iris L.
Posted: Friday, February 27, 2015 3:37 PM
Joined: 12/15/2011
Posts: 18509


llee08032 wrote:
If anyone tries to shame me well shame on them, is how I look at this.

Welcome to my world. I have been only treated with odium since I began having difficulties in my daily activities due to memory loss. Thus, I now keep it a secret. I only talk about my physical medical problems. I never mention cognition or memory. This includes bad treatment from doctors, my former colleagues.

Iris L.

Mimi S.
Posted: Wednesday, March 4, 2015 10:50 AM
Joined: 11/29/2011
Posts: 7027


I saw the movie several days ago.

I have read the book and, of course, liked it better since it can use words.

I did like it. I did stay until the last credit ran and saw many of my Aliz. friends listed. I would have liked that part to have gone slower.

I had not heard that Maria Shriver was involved. Her company produced the film and she was active in the production.

Some of my thoughts.

I knew from the book when she got lost at Columbia. I'm not sure the audience did.
The objects around her become fuzzy. Perhaps her voice wondering where she was would have been better.

The suicide event. In the book she, if I recall, wasn't able to follow through. In the movie, she kept going back to her computer and finally brought her computer upstairs. She would have been successful if someone had not come in.

I thought the husband was more supportive in the movie than he was in the book.

They portrayed the actress daughter and that situation well.

And Miss Moore deserved her award for the way she was able to show the progression of the disease.

The disease seemed to progress even faster in the movie than it did in the book. So, in my opinion, that was completely unrealistic.

I asked my daughter her reaction.
"I just realized how lucky we are that the disease is progressing so slowly with you."

And it was wonderful that Myriam saw the movie with individuals with the disease. I would have liked to have heard the after talk.

llee08032
Posted: Thursday, March 5, 2015 9:37 AM
Joined: 5/20/2014
Posts: 4408


Julianne is evolving as an actress. I like some of the more mature actresses like Streep, Sarandon, Helen Mirren, Glenn Close, Gina Davis and names I can't remember. Julianne however, was an excellent choice because she portrayed well the early onset aspects and captured the attention of the younger audience which like Mimi, I feel is important in getting more recognition. Getting recognition from the young policymakers in congress could possibly be a game changer.

Thanks for the review Mimi!

Mimi S.
Posted: Thursday, March 5, 2015 10:21 AM
Joined: 11/29/2011
Posts: 7027


Each of us sees it from our own perspective which is why I'm interested in others viewpoints.

There were several early stagers who helped too. One is particular, a woman, became good friends. There was a link to it someplace on here.

Although that vacant stare of someone well into the disease is hard to duplicate.

Iris L.
Posted: Sunday, March 8, 2015 10:19 PM
Joined: 12/15/2011
Posts: 18509


I just came from seeing Still Alice. Although I think Julianne Moore did a wonderful job with the script she was given, I was unhappy with the portrayal of Alzheimer's disease.

In the film, Alice says she wished she had cancer, because people wear ribbons and are more supportive, but with AD she feels only stigma. (I'm sorry, I cannot remember the actual words of the film.) In the film, there was absolutely no support for her as a patient. No evidence of contact with the Alzheimer's Association until she was asked to give a speech by her doctor. No evidence of Best Practices.

In the film she has the fast moving form of genetic familial AD. There was only a brief mention that this is rare for YOAD. The family seemed to ignore what was happening to her, instead going on about their lives. If she couldn't keep up, so what.

One particular scene caught my attention. She was boiling water in the tea kettle to make a cup of tea while Face-timing with her daughter. She accidently turned the burner up to high, before she eventually was able to turn the burner off. I was afraid the scene would show her burning herself or setting the kitchen on fire. The daughter nonchalantly said good bye and hung up and did not even check to see that her mom was okay with the stove. Yikes!

Alice spent a lot of time alone. No one seemed concerned that she was alone on the beach.

One daughter also had the gene, yet she chose to continue on with in-vitro-fertilization even after she learned the news. I was surprised. Then she had twins.

The suicide scene--nothing was said about it by the family. Did her intelligent family members not notice a full bottle of dangerous pills spilled out onto the bathroom floor with her laptop opened to her suicide plan?

I did not like the idea that the only recourse for a patient diagnosed with familial EOAD is suicide. One of the directors, I don't know which one, has ALS, a mostly progressive and terminal illness. When asked what he wanted to do, did he want to travel and see the world, he replied no, he wanted to make movies. So that is what he is doing with his life.

Alice's EOAD plan was to manipulate unsuspecting doctors to prescribe large doses of rohypnol, the date rape drug, so she could kill herself at the right time. Yet when the time came in the movie, she was interrupted. Suppose she had not been interrupted? In the book, the ending is different.

I wish the story was different. Perhaps there is the belief that playing on the public's sympathies will get donations and attention. I don't know. I think about the Ice Bucket Challenge last year. Probably most people still do not know exactly what ALS is, but they sure contributed a lot of money. Over $100 million dollars, I read.

I would like to see a movie based on Mimi S's reaction to her diagnosis of Alzheimer' Disease. How she chose to FIGHT Alzheimer's instead of giving in and giving up. Mimi is my role model and inspiration. Mimi was 30 years older than Alice in the film, and she did not choose suicide. Instead, she chose to become proactive and to help herself and to help others. I am one of the beneficiaries of her choice.

Unfortunately, some patients may have a fast progressing form of the disease. I would like to see much more appropriate support for those patients. Best Practices is still indicated, even with the fast moving form, because we do not know how much Best Practices can help.

For those who have not seen Mimi's video, "One Step Ahead of Alzheimer's", please take a look at it. This is my inspiration!

http://www.youtube.com/watch?v=Q2w9LG3hMlU

Iris L.


Iris L.
Posted: Sunday, March 8, 2015 10:47 PM
Joined: 12/15/2011
Posts: 18509


I am unable to edit my post, but I wanted to add something.
I did not think it was wrong for the husband to want to move to Rochester MN to work at the Mayo Clinic. After all, that was his dream for his research. Life does not stop because someone has YOAD. I believe he should have taken her with him and found great care for her there. Wow, to be at the Mayo Clinic with YOAD! What clinical trials she could be a part of! And even if she were not in a clinical trial, the Mayo Clinic probably has great supportive services for a YOAD person connected with it.

Iris L.

Iris L.
Posted: Monday, March 9, 2015 1:42 AM
Joined: 12/15/2011
Posts: 18509


Here is a clickable link to Mimi's video:

http://www.youtube.com/watch?v=Q2w9LG3hMlU

Iris L.



llee08032
Posted: Monday, March 9, 2015 7:43 AM
Joined: 5/20/2014
Posts: 4408


Thank you, for the review and sharing the link to Mimi's video, Iris. The Hollywood critics have nothing on us, as far as, judging the realistic portrayal of someone with AD.

Mimi, I watched your video and also read your testimony to the PA, house of representatives. You are a force to be reckoned with and a powerhouse of hope and inspiration! Thank you!



Mimi S.
Posted: Monday, March 9, 2015 10:40 AM
Joined: 11/29/2011
Posts: 7027


Iris, I'm so glad you did see the film.

I had so many thoughts while reading it:

No contact with Alz. Assoc. until... I truly believe that Still Alice portrays a more typical response of an individual and their family. The exception is that Alice was able to get a rather fast diagnosis. Many Younger Onset take years to get a diagnosis. Most folks don't seek help until Middle Stage and it's obvious to all that something is wrong.

Our notion of Best Practices is beginning to be spread but is far from common. I get so mad when I hear: nothing can be done. Meds and Best Practices can help, although since we now so little about dementia, what the varying factors might be are still not known.

And yes, the family did go about their lives. Perhaps there was a middle road in the husband's wish to move to further his ambition. There would have to be recognition on his part of the possibility of this disrupting the stability of his wife's life.

Yes, , too, was disturbed by the skyping and the tea scene the daughter was somewhat aware of it. The family at some point did hire a Caregiver. And it's hard to pinpoint a time sequence in the movie since so much is compressed into such a short time.

The beach scene: since the movie is shot from her viewpoint, we have no idea if she was being watched. Caregivers do try to give as much freedom as possible while watching from the sidelines.

The decision to conceive knowing one has the gene. Isn't it still a 50/50 chance? And I can't fault anyone for taking that chance.

The suicide scene in the scene differs from the book. I prefer the book's: she couldn't follow her written instructions. It did show that she had to keep going back and finally took the computer up with her. It was shortly after that that her husband asked a very leading question that referred to end of life. She didn't get what he was referring to and he didn't follow through.

And thanks for all your kind words about me and the video you referred to.

That was interesting. I was filmed for two days by a crew from PBS for the original. I and my family were very disappointed with the original. It just seemed that every positive thing I was doing was edited from the film. The ending shows a picture I gave them of myself and my grand-kids. My face was slowly eradicated from the film.

Then, lo and behold, Mutual of Mass, somehow got ahold of all those positive scenes that had been cut from the original. That is the video that Iris is referring to.

The Aliz. Assoc. has a bracelet that is always on my wrist: A REASON TO HOPE

Iris L.
Posted: Monday, March 9, 2015 1:29 PM
Joined: 12/15/2011
Posts: 18509


Mimi S. wrote:


And thanks for all your kind words about me and the video you referred to.

That was interesting. I was filmed for two days by a crew from PBS for the original. I and my family were very disappointed with the original. It just seemed that every positive thing I was doing was edited from the film. The ending shows a picture I gave them of myself and my grand-kids. My face was slowly eradicated from the film.

Then, lo and behold, Mutual of Mass, somehow got ahold of all those positive scenes that had been cut from the original. That is the video that Iris is referring to.


Mimi, what I wrote are more than just kind words. I wrote them because you are a contrast to what is promoted in the everyday world and in the movie, IMO. They want to tell us, if this is happening to you, just go home and wait to die.

You, and ONLY you, Mimi, are saying, there IS something you can do about dementia, and here is what it is! Nowhere else do we find this encouragement. I have not seen it anywhere else, personally.

Yes, I believe that the movie portrays a common scenario. It would have been nice to have a scenario of a woman becoming diagnosed, and beginning Best Practices, including medications, and having many more years of a less active but still fulfilling life.

We may not be working at what we used to do, but we can still be contributing members of society and to our families and friends.

We are still here. I believe that is what the title means, "Still Alice." Even though she was declining, and not a professor anymore, and not super-smart, she was still the same person she used to be. She was still wife and mother and person--still Alice.

In the movie, there was a scene in which she said she wanted her husband to delay his taking the new job. I would have changed the scene somewhat. I would have made the scene about her wish to spend more time with her husband and family. Instead, it became all about him and his career. It could have been that it doesn't matter where she lives, as long as she is with her husband.

In the movie, Alice makes a decision for suicide after visiting the depressing nursing home, which the nurse thinks is for Alice's parent. What a choice! Nursing homes are becoming more like real homes, not so institutional. How uplifting it would have been if they had portrayed one of the newer nursing homes. Jfkoc just posted about one in Nashville, Abe's Garden, https://www.abesgarden.org/.

The film gives us the impression that Alice's only choices are a depressing nursing home, with residents staring off into space, or suicide.

Some patients have the ability to envision a different ending--surrounded at home by their loving family.

Personally, I believe the movie Still Alice can be used as a jumping off point--this is how things are now for YOAD patients--let's make it BETTER! Follow Mimi S' example!

Iris L.








Paul Hornback
Posted: Monday, March 9, 2015 2:11 PM
Joined: 8/9/2013
Posts: 584


Mimi S, an incredible video! I'd never seen it before. You are truly an encouragement and model for all of us. I love the way the video ended, There is hope!"

Thanks for your courage and willingness to open your life so others could benefit from your experience and best practices.

God bless, Paul


llee08032
Posted: Sunday, May 3, 2015 9:18 AM
Joined: 5/20/2014
Posts: 4408




The suicide scene in the scene differs from the book. I prefer the book's: she couldn't follow her written instructions. It did show that she had to keep going back and finally took the computer up with her. It was shortly after that that her husband asked a very leading question that referred to end of life. She didn't get what he was referring to and he didn't follow through.

I finally saw the movie yesterday. I think the above scene that Mimi referred to was what really hit with me! Alice's husband asked, "Alice do you still want to be here?" Her thinking and processing at that point was so concrete she thought he meant if she wanted to stay or leave the ice cream palour. Here was this brilliant woman who lost her capacity for abstract reasoning. It is hard to imagine this happening to some of us and hard to imagine what that must be like.

Her visit to the nursing home and the ending when she could barley speak was difficult to watch.

Mimi S.
Posted: Sunday, May 3, 2015 10:25 AM
Joined: 11/29/2011
Posts: 7027


Hi lee, I'm glad you finally saw it.

Like you, I preferred the original suicide scene. Who knows why editors think they must change things.

I don't recall the last part in either the movie or film where she visits a nursing home.

I think I would prefer that folks visit Continuing Care Communities. This is much more realistic fro the point of view of someone in Early Stage. I know, at this point, I can't envision myself in a nursing home. I can envision myself in a Continuing Care Community. In fact I've already chosen one. If all goes well, hospice can be called in at the end.

Iris L.
Posted: Sunday, May 3, 2015 1:49 PM
Joined: 12/15/2011
Posts: 18509


llee08032 wrote:



Her visit to the nursing home and the ending when she could barley speak was difficult to watch.

The nursing home scene in the movie panders to the public's worst fears of nursing homes.

IMO, I believe the end for people who conscientiously follow Best Practices will be much different.

Iris L.