This past week there was an article on TV that said that the lack of exercise caused Alzheimer's because they tested mice and it showed that to be true. Another time they said that it was genetic. Another time they said the Lipitor caused the symptoms of Alzheimer's. They don't know as yet and all of these stories cause people to ask me questions about my husband - did his relatives have AD? Did he exercise? You need to do this and this - based on things they have seen on TV.
Maybe my nerves are on edge or stretched, but our bright spouses worked hard, were smarter than average, were always on the go, and now have this dreadful disease. It's not their faults!
Mary, You are right. My wife worked hard, was smarter than average (and smarter than me), did all the right things - cross-word puzzles, exercise, weight control, etc. So why does she now have AD? No one knows, so just don't pay attention to those who question you. If it weren't AD they were commenting on, it would have been diabetes, heart disease, cancer, pneumonia, or a host of other diseases that appear on TV and in the lay press with "explanations" as to their cause and/or treatment. I wish such "discussions" on mass media were outlawed, but that is infringing on "freedom of speech". One way to shut up such comments would be to ask the person "what medical school did you attend?"
Yeah...well... I think they (as in the researchers) know they're just shooting in the dark right now, hoping they'll begin to detect a pattern sooner or later. The problem is, that when "they" suggest helpful steps for basic health maintenance which MIGHT slightly reduce an individual's statistical probability of ending up with AD (or anything else,) the vast naive public latches onto what was meant to be a suggestion and behave--with great hopefulness--as if THIS MUST BE THE ANSWER! (because we all want an answer. who wants to feel vulnerable to AD? no one. so we hope hope hope that the latest health recommendation IS the answer, and not merely a recommendation.)
It's true of anything bad that happens in life. When a murder occurs, we want to know why, how, when? Because there must be a key to the tragedy that we can grab onto and say "oh...I see why that happened. She was friends with a nutcase." Thus, reassuring ourselves that we are at less risk.
Same with Alzheimer's. If we can convince ourselves that there's some definable reason why Heckle got it and Jeckle didn't, then we can act like Jeckle, and feel safer.
So it's not really speculation, or the tidbits of research that emerge that are the problem. It's that we--the general public--want to make them all true and concrete so the world will be less of a random, scary place.
Oooooooo - You just hit on one of my BIGGEST PET PEEVES! "They" tell you if you keep your brain active, you won't get AD, or you'll be far less likely to get it. Which makes the AD patient feel like it's their fault they got it!
Tell that to Richard Taylor, Ph.D, psychologist; John O'Connor, judge; Winston Churhill, Prime Minister; Barry Goldwater, Senator. What were these people - couch potato zone outs?
For a complete list of famous AD sufferers, copy and paste this link - http://geocities.com/caregiving4alz/youre_in_good_company.htm
It is from the website of Bettyhere, one of our faithful readers.
Scientists have found that EVERYONE'S brain has the plaques and tangles as they age. The key is to find out WHY some people's brains are able to withstand them, and others are not. When they figure out what keeps some people from succumbing to the AD, while other's do not, they may be on to something.
Here is a perfect example from my own family of how "their" theory is bunk. My father and step mother have been married for 31 years. He was 59, and she was 49 when they married. For as long as their physical health would allow - at least 25 years, they read books (still do); did volunteer work; had a huge social circle of friends; kept up with current events; traveled; traveled on Elder Hostiles, which are educationally based - one year they went on a Hostile all over the South to study the Civil War; one year they traveled to Boston to study music. They did not sit and stare at walls for 25 years. Now my father is 90, sharp as can be - he can converse intelligently on politics, history (well, he's lived a lot of it), sports. My step mother is 80, and has been failing cognitively for 5 years. Explain that one, scientists!
One of the reasons for the "epidemic" is just that we all live longer. We last long enough to get this disease or that one. Yes, I know that there is a lot of early onset, but think about just how late even that is. When people died in their 40s and 50s, as they used to do quite regularly, they didn't get as much cancer or heart disease or dementia.
My father died in 1946 at 49 of his first heart attack and actually lived 3 days after the attack in the hospital. Today no one who gets to the hospital is likely to die of a heart attack unless they have a second one. He didn't live long enough to have heart disease or any other of the modern epidemic diseases.
They are grabbing at anything they can think of to try to figure out who gets this disease, who gets sick quickly and who hangs in there in the early stages and why. And a lot of what they think of isn't really what is going on. My husband did 6 months of cognitive therapy BEFORE he was diagnosed, mainly because no one, not me or even the therapist, thought it was dementia. It was only when one attempt after another to teach him ways to manage is memory problems failed that it became obvious that none of that stuff was going to work.
However, I also know that my sister who had brain surgery in the early 90s probably could have come back a lot further than she did if she had been willing to cooperate with some of the strategies they tried to teach her. She didn't have a disease that was progressing, so for her some of the stuff that the therapist tried could have worked. That particular rehabilitation hospital works miracles with stroke victims every day. I saw miracles.
The reason we finally got sent to a neurologist was that the miracle worker wasn't getting anywhere. That was the major symptom. He couldn't learn new things anymore.
The people who are suggesting things like cross word puzzles are used to working with people who actually can get better. I bet dementia really frustrates them.
Ah ... I don't think the scientists are the problem, Joan. Marsh hit the nail on the head -- it's the news media. They grab onto something about which they know absolutely nothing, race madly to get it on the air or in print without bothering to get the full details, and then totally misrepresent what was said in a way designed to get maximum attention. And then, as Emily points out, the general public swallows it whole, and pandemonium results. We now live in a world of sound bites.
I've learned to never, ever, ever believe anything about science that's reported by the general news media. Never. Every last time I check out what was reported by going to the source, it turns out to be wrong, wrong, wrong. I agree with Marsh ... oughta be outlawed.
I'll sure agree with your pet peeve, though. In spades. My DH had an IQ way up in the genius region, high-level international executive, lots of outside interests as well.
Several years ago I got so angry at my husband's cousin who sent us an article from a magazine saying one won't get AD if one keeps her/his mind active doing crossword puzzles, etc. I didn't speak to her for a couple of years. It was such an insult to think that my dear husband could have done something to have avoided AD. And it IS the researchers too. You can hardly pick up a magazine that doesn't quote some researcher on how to avoid AD. It makes me furious. My husband was very active in all ways. He was a successful banker, worked in many community activities, hiked, kayaked, camped, swam, never forgot a name. It's so sad that this has happened to him but even worse that so many people are led to believe he could have done something to avoid it--that it is somehow his fault. Grrrrrrr.
I know I HATE this too! When my previous spouse died of cancer we got all this - "just think right and you will be cured" stuff. Now, I think my husband MIGHT have put off this disease because of all the things he did in his past - BUT, at this point we just need to accept and do our best. My husband ran a department with 50 people under him and now he can't figure out how to turn on the lights - oh well. It is especially hard to take when it is my husband's children who I guess think I should get him out to run around the block or something while I am really left to care for a man I love pretty much on my own.
Well, I am way beyond mad, I'm pretty much numb & immune to it all. Just for fun, please respond if any of your mates were couch potatoes? Mine certainly was not. I am beginning to think it is the couch potatoes who do not get AD. Wouldn't that set the experts back on their heels? It's the brain busy, always on overload, can't sit still physical ones who seem to get it--like your spouse & mine. According to all the experts, there was absolutely 100% no reason for my DH to get AD, none. We grew up in the same neighborhood, essentially had the same life style and education--I was the more likely candidate to get it. I was never as physical, never as brainy as he was. I could sit in a chair and watch the grass grow for hours, but not him, he had to be moving. Go figure.
I am annoyed about experts currently telling us that AD is not really a disease. I don't care if it's classified as a disease or a tropical fish. It is what it is. As already mentioned, because we are living longer, we are subject to many aging conditions--AD among them. Eventually it will all get sorted out--not likely in our lifetime--but eventually. I wish experts a world of success, I'd be thrilled if they found a cause/cure for AD & dozens of other things, but it is true that the media, drug companies and other vested interests keep pulling our chains at every little thing & in my opinion, it's not in our best interests to constantly be subjected to that.
One of the things I hate about medical news is that they will tell us about a study, but it will be so far away from being final that the information is useless. The only study I can think of that was truly useful is the one about hormone therapy for older women, where the preliminary data was so off the wall and so contrary to what doctors had been told to do that they stopped the study and reversed the advice about hormone therapy IMMEDIATELY. Like a lot of women I'd been pushed and pushed by every doctor I had to go on the therapy and had resisted because I didn't have the kinds of symptoms that hormones helped. In the middle of the pushing I was suddeny told how lucky I was that I hadn't given in and taken the drugs.
Like a lot of men who have been described here, my husband had a creative and busy job. He designed contact lenses and he was very good at it. In his last couple of jobs he also dealt with managing building maintenance and security, including keeping the company he worked for legal and organizing required seminars sometimes for the entire building's staff. Etc., etc.
What he didn't have was interests outside of work. And we moved across country. Between the two of those things, I believe it became harder for him to hide the fact that he was having memory issues. He couldn't remember how to get to the new places we were going every day. He wasn't interested in locating the better ways to get to a place, and that wasn't like him. He didn't learn his new address or his new phone number. And after I while I realized he couldn't learn those new things.
I'm not saying that becoming a couch potato AFTER he retired caused his AD. I'm saying that it made it more obvious. Someone who is busy with lots of activities, or who has lots of strategies for orienting himself in time (calendars and clocks) or making lists and having notebooks around might not be so obvious during the early stages of the disease and that can be mistaken for not having it at all. It is only in the later stages when these strategies do not work.
I keep looking back to try to figure out when this started and I can't. I've got a starting place when he had his pacemaker put in because of the loss of oxygen before they got him stabilized, but I think it actually started earlier than that and started slowly. All of those small mini-strokes probably made things move more quickly, but I don't think that really was the beginning.
Bettyhere ... you may be onto something. I've noticed that there is a very strong correlation between the severity of my DH's symptoms and the level of stress he's under, so I started talking with the people at the local Alzheimer's Disease Research Center about that. Some AD researchers are starting to think that prolonged, severe stress can trigger the onset of AD. There are a lot of similarities between the physiological reaction to stress and the imbalances associated with AD. I haven't checked recently to see if any studies have been funded yet, but the last time I spoke with them, the local folks were in the process of applying for a grant to study the effects of stress.
I don't think it's the ONLY factor, for sure. AD is very complicated, and there are undoubtedly many different things that play a role in whether and when the tropical fish strikes. But maybe, in some people, too much brain activity of the wrong kind can cause a problem.
Bebe, dear lady, did you notice that you're angry about MAGAZINE articles quoting researchers? News media. And undoubtedly MISquoting them. Do not read magazine (or newspaper) articles about science. It's harmful to your health. You'll get stressed, and then where will you be ...
Bettyhere, I like your suggestion of calling AD a "tropical fish". It gives a little humor to an otherwise horrible condition, and we need all the humor we can get.
I just love all these theories that they come up with. First they said it was caused by metals used in cooking utensils, then they change their minds. Then they come up with the "if you don't loose it, you'll loose it", then it's hereditary.
My wife's family does not deal with AD. She is the first, that I know of. (so much for hereditary). She worked as a municipal treasurer/bookkeeper for 24 years (talk about brain exercise) which blows the theory about not using it. She walked to work everyday for 24 years....so much for exercise.
What's next. If you wipe your butt the wrong way, you could develop AD? If you pick your nose, you could develop AD? They have no clue as to what causes it.
And what irritates me even more....is that Alzheimer's has been around a long time. And the only reason why they didn't start searching for a remedy is because it only affected the older generation. Who cares about them!!! With that mentality, why not just do like the Eskimos do. Why not just put them on an ice flow and set them adrift when they are of no longer use, or too much bother to take care of.
They don't even know why the plaques and tangles occur. Are they a normal process and the body normally rids the brain of them and it just stopped removing them? Are they something new that the body produces and can't get rid of?
Now.....AD is affecting more and more young people.... Now is the time to deal with this "old age" delema and find a cure. It's sort of like closeing the barn door after the horse got out.
So while they are screwing around with theories, and scrambling for a remedy which should have been looked into decades ago, our loved ones are dying from the complications of AD.
The problem is that there will soon be more and more older people, and I heard that 50% of those over 80 have it. Well, what about over 100.? Maybe we'll all get it, but our genes regulate when we get it, so if they keep extending the life span..... more and more of us will succomb. There's a joke going around about boobjobs and viagra. Someday there will be a lot of old women with perky boobs, and men with erections and no one remembering what to do with them. Well, if we live long enough that's what will happen.
My pet peeve is the teasers that come on TV, " Breakthrough in Alzheimer's research, stay tuned at 11:00. Well, you stay tuned only to learn that the breakthrough is only a finding of some new method of diagnosis or some causal relationship. Never any treatment breakthroughs!! A couple of years ago, I bought a book about maintaining brain health. Each chapter covered research that had been done regarding dementia and high blood pressure, high cholesterol, inactivity, you name it. As you could guess, everything that they studied was associated with increased risk for dementia.
I second the suggestion that we avoid getting our information from the media.
I agree Baltobob. The worst of it is that some of the AD victims are capable of understanding that they have the disease, and attach too much importance to these media blurbs. My husband among them. Hears something, reads something, then comes to me and says "maybe I'll get some crossword puzzle books. It's supposed to help." He cannot do, nor does he enjoy crosswords. So I say "you can get them if you would enjoy doing them, but maybe we should just do something we know you like to do."
Oh wow, this is one of the worst things for us. my husband has always exercised every day, he was in law enforcement, very concerned about his physical health, also very bright, reads (still does) and when we heard the latest, the exercising mice, we both just thought it was ridiculous. So glad others did too. Our doctor just says, if he can continue to do the things he likes, and can stay as active as possible, that is the best thing. We are comfortable with that.
You have all been discussing the problems with getting information on AD from the mass media, and I agree it's a poor way to do it (see my comment above). This time I have some interesting information I just found, published in one of the neurology journals. The author is Huntington Potter, PhD, Chair for Research in Alzheimer's Disease, University of South Florida College of Medicine. He was reporting the similarity between AD and Down Syndrome. All Down patients will develop AD if they live to 40. This led to a study of AD patients to see what similarities there might be. They found that AD patients have a higher level of Trisomy 21 (the cause of Down Syndrome) than the general population. This work needs to be confirmed by other laboratories, but his last comment was "Further exploration of these novel findings has the potential to contribute to the development of diagnoses and treatments for Alzheimer's Disease." Your contributions to Alzheimer Research is paying off.
Marsh, I sent a copy of your post to my two sons. Unknown to me one of my son's, who is working on his masters in nursing, had written a paper on AD and had a paragraph about the AD-DS connection. He is just a student and not yet a medical professional however this is what he said:
The AD pathology has five genetic origins that each involves amyloid precursor protein (APP) and its cleavage peptide product, amyloid-ß. The first genetic source of the amyloid plaques was discovered in mapping the APP gene to chromosome 21 (whose trisomy leads to Down’s Syndrome) and indicated genetic mutation was a factor in amyloid-ß production (Goedert, 2006). A second source involving mutations on other chromosomes, specifically the genes presenilin I on chromosome 14, and presenilin II on chromosome 1, has been associated with the increased cleavage of APP by the enzyme _-secretase into amyloid-ß. This pathway is considered a source for early, rather than late, onset AD (Götz, Schild, Hoerndli, & Pennanen, 2004). A third genetic marker, again for early onset AD, is a specific mutation in APP itself, which increases its cleavage by ß-secretase (Selkoe, 2000). A fourth genetic mechanism seems responsible for the more typical LOAD. A mutation of the apolipoprotein E appears not to increase the production of amyloid-ß, but instead inhibits its clearance in the brain tissue, leading to its accumulation and plaque formation, and consequent tissue inflammation and degeneration (Selkoe, 2000). Likewise, a fifth genetic indicator has been identified and is also linked to the clearance of amyloid-ß, and results in an excessive down-regulation of an amyloid-degrading protease neprilysin or NEP (Farris et al., 2007).
I attended a conference last year at which the AD/Down Syndrome link was discussed at length - in more layman's terms than Bebe's son's paper. Basically what I am getting from all of this is that the propensity to develop AD is in the genes. Which makes sense, considering the scientists seem to be leaning that way for many diseases.
I am going to another conference on Thursday, at which there will be a topic concerning all of the latest research and treatments. I will let you know if I find out anything new.
Just for the heck of it, I want to add this comment. . . . When I was on my hunting trip recently, the fella that owned the lodge told me about his having lived with Lyme Disease for several years. In talking with his wife, she outlined all of his symptoms; failing physical ability, loss of memory (he has even forgotten her name several times), etc. , it sounded a lot like AD. The test for Lyme disease is better than it has been. . . but only about 60% accurate in determining the presense of Lyme (the terrible disease that ticks can carry). Just a thought to pass on. Has anyone else heard about this. This guy sees a specialist for this and has been told that MANY diseases are incorrectly diagnosed when it is Lyme that is responsible.
StuntGirl-- Yes, I have absolutely heard of that. When the geriatric memory specialist assured us that Jeff DID NOT have AD, we were in limbo for a while until a neighbor, listening to Jeff's symptoms, said "You've got Lyme Disease." The neighbor had had Lyme, you see, and it took about a year of treatment before he really felt better, and Jeff's symptoms sounded familiar to him.
So, we started seeing his doc, and infectious disease specialist, and Jeff went on 3 months of amoxicillin (the standard antibiotic,or one of them.) After a number of visits, a sunburn from the amoxicillin, and no improvement, it was THAT doc who seriously suspected AD and sent us to the venerable old cranky neurologist who FINALLY made a definitive AD Dx. (using an updated MRI, and especially a PET scan, where the hypometabolizing areas were particularly striking. Actually, we got copies of the PET before we went back for the neurologist's report on them, and I looked up normal and AD PET scans online. So it was obvious to me before we even got the doc's opinion that that's what we were looking at.)
But, anyway...yes...we did bark up the Lyme tree. It just wasn't the right tree this time.
Bebe, if your son would like a reprint of the article I mentioned, here is the address:
Johnnie B Byrd Sr Alzheimer's Center & Research Institute, Eric Pfeiffer Chair for Research in Alzheimer's Disease, Department of Molecular Medicine, University of South Florida College of Medicine, FL, USA. Tel.: +1 813 866 1600; Fax: +1 813 866 1601; hpotter@byrdinstitute.org