Thursday, April 30, 2015

Still Alice , A Pateint's Perspective


WARNING SPOILER ALERT:
We watched the movie Still Alice the other night. I am still trying to figure out whether I liked it or not.
Having talked to Lisa Genova on many occasions, I wanted so much to like it. Being the author of the book, and having done a few radio shows with her, it is easy to see she is very passionate about dementia. 
I couldn't help but notice that during the credits there were twenty consultants used in making of Still Alice. And not just any consultants, but twenty Alzheimer consultants. Many from the Alzheimers Association. 
One would think with that many irons in the fire, this surly would have hit the mark. And it did, in some regards.
As always, you will hear me say, "If you want to know about dementia, ask a patient."
It is beyond me how someone thinks a consultant on the subject, or caregiver for that matter can tell you how this disease effects a patient. 
This was obvious in some scenes in the movie. Granted, there were things that were dramatized, it is a movie. But some were, well for all intents and purposes, were just wrong.
One being the run Alice took. Granted, patients do get lost, or are not familiar with their surroundings at times. But in her jogging scene, when she ended up in front of what looked to be some sort of court building or whatever, they made the scene look as though Alice was seeing through a "fog", things weren't clear.
This clearly was to represent when many patients talk about "foggy days". The thing is I have many "foggy days" as I'm sure your loved one does.
All patients do. But as a patient I can tell you that is a metaphor, the term "foggy days". In other words, when I speak of "foggy days", my vision is not impaired what so ever.
It is my mind that is impaired. The movie suggests that when these times occurs, we patients have trouble focusing or seeing people, things, objects, etc.
This is not the case. They missed this one completely. Which if they would have a had a patient as a consultant they would have realized this.
Another scene was she was marking her words with a yellow marker, while reading a speech. This of course doesn't happen either.

I have done many a speaking engagement, and I can tell you from experience that no patient is going to use notes when speaking. They will not and cannot follow them.
The first thing when doing a speaking engagement is it is very stressful. To anyone, no matter how many you have done. Couple that with the fact that you have dementia, and you should get the point.
I speak from my heart at these things. I never use notes, or tele-prompters, or cheat sheets, that simply wouldn't work. First of all, I can read, but after the first two paragraphs I have no idea what I have said, nor what I had read.

Then there was the fact that Alice carried a gene that was 100% going to be passed down to one of her three children. That too is more drama.
Does this happen? It does. But not very often, matter of fact is very, very rare. Less then 1%. But it is dramatic.

The worst thing I watched was when they had Alice do a video to herself explaining step by step how to commit suicide. This was most disturbing.

Again, does this happen? I suppose. But what they did was, they showed how Alice had to watch the video over and over to understand what was on it, what it was about. Then she was interrupted while in the process of taking pills, and they never went back to it again.
In other words, they took a very serious situation, and just left it. There was no explanation as to who found the pills she had dropped, what was said when they were found, and what the family did to prevent this.
All in all, it was a movie. Made for entertainment. It was indeed fiction. Meaning its not real. And that was a shame. Of course had they done a movie about the real effects of Early On-Set Alzheimers no one would have seen it.
The true effects of this disease are not dramatic, they are dull, but they are there. They could have also showed how the the real struggles of this disease effects families.
How many have lost their homes, their entire savings, and their sanity. Instead they portray a couple, one is a Physicist, the other a Linguists Professor.
What do you suppose this would have looked like had the husband been a factory worker, and the wife, the patient worked for Wal-Mart?
I contend again, this would have never made it to the big screen, yet this is indeed the real world of dementia.
I am glad Lisa Genova wrote, "Still Alice". But I wish one would remember, it's not real, it's fiction. I think if you want to know about dementia, again, ask a patient.
If I want to know about car engines, I don't ask a pilot. If I want to know about planting flowers, I don't ask a construction worker.
One day, a real version of dementia will hit the Hollywood scene. I am just afraid it will be like it was in the 80' when AIDS killed so many people.
That is what we will witness one day on tv. The tragic death of tens of millions from a disease that no one ever took the time to learn about, let alone demand funding for.
We live in a really messed up world. Our priorities are so out of whack. This disease has taken millions of lives, every 68 seconds someone is diagnosed with some form of dementia, yet we are decades from anything that would come close to a cure. Decades.
Make a movie about that. The real truth about dementia. None of have beach houses, none of us can go on a year sabbatical, and none of us can just pick up and move at a moments notice.
We have people right here on Memory People™ who would give anything to have just a couple of hours of respite. We have patients on here who can't tell five minutes from five hours.
The real horrors of dementia were not shown in this movie. But it's Hollywood. Why would it be???
In closing, I would not recommend any dementia patient see this movie. And if caregivers want to see it, I would recommend that they talk to a patient before and after seeing the movie.
Then, and only then will you get a real sense of what "Living with Dementia" is all about. This book sold millions, made Lisa a very rich woman. I just wish she would have asked just one patient what it is like to live with dementia.
Hollywood had twenty consultants on this movie, and still missed the point, why am I not surprised???