I am paraphrasing.

Late last night (Thursday) I was scanning tv, thinking how can there be 400 channels and nothing interesting. Then I came across a documentary on "rltv". It pretty much stopped me cold, billed as a family's experience with EOAD. The title of it is To Not Fade Away.

Part, but not all of it was about a woman dx at age 45. Those of you who may remember my story know that is very, very close to what happened with my husband. Also covered were the basketball coach whose name I have psychologically blocked. This is mostly because my father was successfully treated for brain cancer at Vanderbilt and my parents think that this coach is the touchstone of how all affected by these diseases should act. I won't go into IMO.

Also covered was Glen Campbell. The quote I used to title this came from a Rockefeller from W.Va. whose mother had AD. He talked about how the experience with her AD violated her family's memories of her. I thought he was quite poignant, discussing how his earlier memories of her contrasted with the AD memories. Maria Shriver was also featured and spoke a lot about how financially devastating AD can be. She directly said, and I believe this was about her father, that despite the emotional issues, they could afford really anything, but that many, many cannot.

There was also a segment about experimenting that I skipped. My husband was an enthusiastic supporter of the Physicians Committee for Responsible Medicine, (and so am I). Interspersed with these segments were returns to the woman dx EOAD and a couple where the husband had AD. I think they were in their 70's.

What I learned: According to the expert commentary, most from Johns Hopkins in Baltimore, dx after age 65 is called Late Onset AD. Also, brain post-mortems show that many people have AD like proteins (?) but never had any AD symptoms. And, AD is not hereditary.

This segued into the final segment, a kind of feel good (sarcasm) about "what we can all do" to minimize our chances of getting AD/dementia. Control diet, hypertension, meditate, exercise, keep the mind active, Mediterranean diet, be involved your community. I was not exactly livid but took this personally and felt angry.

So, I am going to rant. My husband was a vegetarian; 6'2", weighed 180. His profession required an advanced degree and he had two. It also required ongoing continuing education. He practiced yoga daily and attended classes twice a week. He had a meditation instructor. He participated in community organizations and gave back in pro bono work. I mean, what the "heck" else could he have done???

Oh, I also learned that I have been pronouncing "dementia" wrong all these years. I have spoken and heard it as "de-ment-sha". No, it is "de-men-she-ah".

LFL and Coco- if you read this, please accept my gratitude for your kind words on Coco's Lewy-Body thread. It means a lot!

The problem with the spiels on "what YOU can do" to keep yourself healthy...bla...bla...isn't the health advice, so much as the packaging. I think it goes without saying that anyone who applies these practices to his/her given life and its setpoints and parameters is going to do at least a little better than someone who does not.

Obviously, if you've been down that road, as we all have here, you know that there's no comfort and complacency to be had.

Still, there's no harm in giving good health practice advice to humans. The problems with it would be if it diverts attention away from the serious need for a cure and/or ACTUAL prevention (because too many people believe the pablum that they can save themselves,) or if it casts a shadow of blame in the direction of the victims, because they, in theory, "should have" been able to "keep themselves healthy." The latter is probably the biggest reason it makes us mad.

Ran into my first example of a guy who really only just learned that Alzheimer's is fatal, incidentally. I guess that people who haven't dealt with it in person just assume that it is a condition that affects old people who dodder around until they die of something else. I can understand people thinking that if they haven't had a close encounter with someone vital who is prematurely struck down by the illness.

I guess there's a public to educate out there!

I stopped watching these programs a long time ago. My whole life is devoted to dementia – the only breaks I have are my work (which is now very limited) and the hour I get after my husband goes to sleep, when I read mystery novels. Otherwise, it’s all-dementia-all-the-time.

The feel-good ending would infuriate me, too. Both my father and my husband were active, athletic men who had positive easy-going temperaments and were full of interest and enjoyment in life. Neither ate fatty foods and, in fact, my husband was one of those people who get grossed out by the sight a potato chip.

IMO, there are a couple of reasons for this kind of ending. One is the culture of the American media, which requires happy endings. Since there is no happy ending here, the only upbeat thing the documentary can offer is a suggestion that an “cure” is just around the corner. We all know how dishonest that promise is. Not only is there no “cure;” there is no effective treatment.

The second reason is the need of people to feel that there is something they can do to avoid getting this disease. This is also baloney. And it leads to the conclusion that the victim is to blame for his condition.

It took me awhile to type and just went back to the discussion and see I am repeating what some recent posts say, but I’ll post this anyway, just to get my two cents in.

I would like to say one last thing before I go back to my “de-men-she-ah” duties.

One of the most frustrating things for me about this experience has been the intellectual dishonesty that surrounds the subject. I am very tired of listening to the platitudes that come out of the mouths of others, including some people who should know better.

I just recently found this website and I very grateful for it, mostly because all the topics are discussed so honestly. I wish I had found it years ago because I would have known that there were people whose experience was like my own.

Well, this seems to be the "soapbox forum" at the moment, so I'll chime in with something that has rubbed me the wrong way recently. The Federal Government evidently plans to require that all automobiles manufactured for sale in the U.S. after 2018 have back-up cameras. The estimated cost is about $100 per auto, times 16,000,000 new cars sold annually, which works out to a total of 1.6 billion dollars required to be paid by the American car buying public annually. All this to save an estimated 57 lives per year! 1.6 billion dollars is three to four times the amount now spent annually on Alzheimer's research -- just imagine the number of lives that might potentially be saved if this money were directed toward AD research instead!

abby* this is a a strange life. I looked at some trailers of those videos you talked about.

You heard me in the past complaining about my best friend of most of my life, the ones that own a vacation rental next door, and come down from Canada every winter. She has been driving me crazy for about 5 years, and when Dado first got ill she kept saying things, over and over, that I asked her not to. I just could not stand to be around her.

Now...her son just visited with his girlfriend, and confided in me that they are all worried about his Mom, she is very forgetful, very much so. I just assumed she was kind of "ditzy" after all the years of her husband calling her a dumb blond.

One of the things she did when she was here, she was trying to scoop Haagen Daz ice cream and was cussing and saying that what the heck was up with these new containers? Anyway, I went to help her, and ....she had not taken off the plastic top under the lid, and was trying to scoop through it. I did not say anything just peeled it off and helped her.

The reason I bring this up, she of ALL people, has always been over the top health fanatical , her whole life. Exercise, yoga and five miles walking everyday. Organic foods, balanced and tons of veggies and fruits. Perfect healthy pretty body. Studied years in college for teaching. She is my age, 59, and now...she..may be getting dementia. Her mother had AD but later in life.

So it goes to show, once again, it is not what you put in your body, or even if you exercise. Though possibly it could happen earlier without care.

I HAVE to forgive her , I should anyway, but certainly now. I am NOT GOING to address the subject, but the next time we talk I can be more patient and more observant. Ugh, I hope it is not true, but suspect it may be. Her husband that is difficult, will have alot on his hands. Wonder..if I will ever be consulted..?

Yeah that's ok LFL. I did not mean to veer off subject, I brought it up to show that this person that did "all the right things", still at an early age may have dementia. (her son said that they CANNOT bring it up around her she gets really mad...)

I hear you all about the cures..next thing they will tell us is that crushed pulverized watermelon seeds with be the cure. Just today on the radio some snake oil salesman was talking about some protein in jelly fish that will help everyone, even those with the "senior moment" issue but not demensheah...

What just used to drive me nuts were the calls and all the mail from well meaning people who could have to educate me on the latest therapy or cure.

I have been thinking of this topic a lot but often do not reply because I am not sure if I am putting my words together properly.

I believe (and note I say "believe" instead of "know") that having a healthy lifestyle can help. The biggest benefit is probably for preventing decline associated with aging and not dementia. For people with dementia healthy eating and lifestyle can help delay symptoms, maybe make them less severe for some time.

But prevent dementia, I don't see that.

I'm all for encouraging healthy living, but opposed to making promises that can't be delivered. It encourages "blaming the victim" (mentioned above). And if dementia is the fault of decisions individuals have made, then why should society help those who did this to themselves. So all this talk about "preventing dementia" discourages any sort of societal action to deal with it, be it helping families afflicted with it or research to prevent it. Or to try to remove various elements from the environment that might contribute to dementia (cause it or possibly just trigger it at an earlier age).

And I think it makes some people smug. My mother's mother had some sort of dementia, probably Alz. My father never liked my MIL (I think the feeling was reciprocated). He believed that she was mentally inactive and could have prevented her dementia by using her brain more. So he was smug, going on and on about how her lifestyle contributed to her dementia. This was the 1970s and I think it was a common belief. Of course I now know he was wrong. Plus, looking back, I am sure that he suffered from dementia for at least the past 10 years of his life and possibly other neurological issues (he almost died from being hit by a car when he was 65, which we now know isn't good for the brain).

marilyn, good to hear from you.