I watched the interview on the Today show with B. Smith (former model and lifestyle creator) and her husband. It was very emotional but generally a fair representation of the early to mid stages of EOAD. She was able to respond to most questions and her husband was very candid. I am glad they are making opportunities to discuss this publically and openly. Hopefully it will provide a much needed spotlight for dementia and marriage.
What I didn't like and am frustrated about was her comment that she is "fighting this disease". Pat Summit said the same thing in the early stages. I think those statements misrepresent what alzheimers/dementia is....a fatal brain disease which at this point can't be "fought". It makes it seem that like cancer, you can fight it and sometimes emerge from the disease. Statements like that mislead the uneducated public. I'm sure she meant she's doing everything to delay the symptoms and maintain her quality of life, but she should have said that.
I've attended Early Alzheimers conferences where the folks in the early stages would speak about how they were fighting it. One woman was still working in a bookstore, although I thought her deficits were obvious as she spoke about her job. I doubt that she kept that job very long. And another man spoke with a good deal of humor about how he still loved working with his power tools in the basement, although his family was trying to make him stop. It seemed to me that while these people still had a good deal of function, they had lost a lot of insight, and just were unaware of their own deficits. It was heartbreaking and uncomfortable to me, to see them trying so hard, while I knew full well what the future was going to hold for them.
In terms of what LFL said above…I don't think the Early Alzheimers folks are capable of saying anything else but that they are fighting it. They have to hold on to hope, I guess, and in any case don't have the awareness or insight to understand what is going to happen.
Even when applied to cancer, I don't think the "battle" metaphor is appropriate. Although saying that someone is "fighting" the disease is often meant to be a compliment, it can be hurtful to people who are suffering from incurable diseases. Saying that a person is a "fighter" implies that recovery is matter of good character or a positive attitude. It suggests that if you “fight” hard enough, you can win, and conversely, if you lose, it's because you did not "fight" hard enough. Sometimes these statements are ludicrous. In my state, when a well-known politician was diagnosed with incurable brain cancer, many people said ridiculous things like, “If anyone can beat this thing, he can.”
On the other hand, when these words are spoken by someone who is actually suffering from dementia or ALS or incurable cancer, I think that kindness requires us to give them a pass. We also need to remember that people in the entertainment and sports industries tend to speak in clichés.
This is part of what we get when we ask for more public awareness and discussion of Alzheimer’s and related illnesses. By inviting all kinds of comments, we will get some words that are thoughtful and informed and others that are not.
A more accurate comment, which their loved ones can use to clarify is: I am fighting this disease to my life normal as long as possible. That is what they are doing. That is why we put them on the AD drugs: to keep them cognitively functioning.
Hi Charlotte, Yes, the statement you suggest would be more accurate. But apparently, that's not what was said on the show. I don't think when people say they are "fighting" Alzheimer's, they are talking about slowing the decline of cognitive function in a way that is almost imperceptible, which is what the long-term data show about AD drugs. They are either hoping for something that will stop or even reverse the cognitive decline, or a "cure" that will benefit others.
When I started looking for something to "fight" this disease, all I found were toy weapons. From my perspective, this has been less like a battle and more like a siege.
I just saw the interview. It was clear that she is having trouble expressing herself. Her husband and Al Roker Had to help her find some words.
I think the way those afflicted can survive is to think they may have some control by "fighting it". So tragic that there is no control over the progression of this disease.
I agree with you LFL, 100%, but as others have stated, maybe that statement is their own way of avoiding "giving up" so to speak. It may make them feel that they have some control left over their fate, but we all know that not to be true.
I also agree that it would present a positive face to the public, leading them to think of it as one more battle to be fought & won. So not true, at least not at this time. It is to be endured until the end....
I didn't think the interview gave a true perspective on what Alzheimer's Disease is and does to both patient and caregiver. I couldn't keep my mouth shut - if you go to the Today Show interview, at the bottom of the page, it says something like "start a discussion". My comments are in that section. They aren't pretty, but it's high time the public actually knew what Alzheimer's Disease is and does. They got the truth from me.
http://discuss.today.com/_news/2015/03/12/30801237-i-am-fighting-right-now-b-smith-on-her-battle-against-alzheimers?d=1 My comment is the 9th one down.
Joan, I read your comments and agree completely. Thanks for capitalizing the MAY and SOME when commenting on the drugs. Big Pharma and specialists are my pet peeves concerning the monster. You told it like it is. Keep shouting from the rooftop and thanks for doing so.
Joan, I just read your great description of what happens when Alzheimer's takes over your life. Some of the other comments are almost laughable. We all appreciate your continued struggle to inform the public. Thanks.
I am so tired of people touting that coconut oil is a cure. So many that post about it do not read up on her husband's current condition. The AD is still progressing. Yes, it seemed to help for a while, but coconut oil did not stop it. I do think it will help some for a while but not cure them.
Joan, thanks for your comment--the only one that made any sense. I cannot believe how ignorant people are. I tried to also leave a comment, but couldn't figure out how to get signed in so I could do it. Oh well, you said it all anyway.
Thank you Joan for your comments and adding reality to this segment. I also commented (under the name reillysmom). It is pathetic that so many people don't understand this disease and the inevitable outcome. It also bothers me when posters choose to post very self-serving comments (dystonia, lyme disease, coconut oil for example) mostly unrelated to the topic and discussion.
I do like the comment about Lyme disease. I read early on that is one of the first test doctors do but my husband was never tested. Lyme disease can have dementia symptoms and should be ruled out.
I agree about coconut oil. I also posted a comment on it.
Just read through all of those comments - you gals did a great job of putting it in a more realistic light. Unfortunately, too many people don't want to see the reality. The one about the doctor's study (i think that's what it said) of coconut oil & how the husband's memory was coming back - either the one writing the comment is totally uninformed & naive (sp?), or the doctor herself is a charlatan....
I have met the doctor in question - Mary Newport. She honestly believes everything she says. I also met her husband during the time she was declaring this miracle in his renewal of functioning. He was disoriented with a blank stare. He did not seem to be able to function without her guidance. But she believed that he was improving due to the coconut oil. This was about 6 years ago, and I have no idea of his current condition.
Why was that trial stopped if he was doing so well? Did it have anything to do with the "night of terror"? And if so, why isn't that mentioned in the Alz & Dement paper?
I haven't met Dr. Newport but did see her interviewed on TV and have read the articles.
I do not remember ever claiming that coconut oil or ketones are cures for Alz, only that it has helped with her husband's function. She does understand science and the need for clinical trails. But since she feels coconut oil, if administered corrected, doesn't have a down side she feels she needs to recommend its use if some people will benefit. In theory ketones should provide energy to the brain, which I suspect should help the neural networks work better given that something in the brain is causing them not to work. So the ketones don't have to be reversing anything, just help the brain function better to compensate for the problem. Over time, as the brain function continues to deteriorate, the benefits of the ketones will diminish.
My memory is her advocating clinical trails of coconut oil and/or ketones to see if the benefits are duplicated in a larger population with a control group. And that she realizes the limits of anecdotal data in medicine.
As to the "night of terror." I read it as her stopping all medications, feeling that the medicines were causing problems (and we know people who stopped meds and saw improvements). I don't take that as her having stopped ketones.
In dementia improvements are always relative. What Joan had seen might have been an improvement over how her husband was before the coconut oil. Doesn't mean that he wasn't very impaired.
The biggest problem is when someone sees an interview with her and is convinced that coconut oil is a cure.