I called the tv station that I watch regularly. I was furious that on the Saturday 6PM news, they referred to Alzheimer's as a disorder. I got passed from one person to another and finally spoke to someone who was more or less ready to listen. I told him that calling Alzheimer's a disorder is denigrating it. I said they were doing a diservice to all the caregivers and all those who suffer from Alzheimer's and all those who have gone. It seems so much harder to raise money for Alzheimer's than for cancer. Our walk raised $615,000. Cancer walks raise millions. He pulled up a medical website which said that Alzheimer's Disease is a brain disorder. I am still upset. I think disorder sounds so much less terrible than Alzheimer's really is. I asked him if he was familiar with the disease. He knew about it from someone who knew someone. I suppose I have to admit I am wrong but I am still angry. More windmills to tilt at.
Hi bluedaze*, maybe it is just that my mind is made up, but it seems to me that the writer is of the same mind as me. From the definition that she quoted, Alzheimer's is a disease. It encompasses the entire body as well as mind. I wonder why I couldn't cut and paste that website. Oh well, a concern for another day.
The word disorder is not often associated with diseases but when you think about it, there are meanings within the word disorder that do apply. To me it means that things are out of order...if a room is messy it is out of control, confusing and in general is in a state of disorder. Same with the mind...it could be any one of the dementia conditions or it could be depression etc..it is one of many disorders or the brain. So I think what upset you, and I don't fault you, is that the word disorder does not define the condition as a terminal illness which it is and ultimately affects the entire body. The word disorder is just a bit too general. I agree it is a disease but when looking at if from the TV guy's point, the brain and it's functioning is in disorder so he or she was not particular in using it. Disease would have been the better choice of words. While this is a frustrating thing for us who are in the process of caring on a daily basis for one so afflicted, it is not the hill to die on, there are more important things with which to be concerned. Like so many other instances we just have to push past those ignorant people.. If the information passed along was of use, was informative, I would not get too wrapped up in one word but rather focus on the essential message of the segment. On the other hand if it made the disease seem like simple little thing like a case of the flu or chicken pox, then it was right to raise the flag.
Mimi did a good job of delineating the relevant points. Bluedaze...that link helped me. When I read Jang's initial post, I didn't see how the distinction was a big deal. Now I understand what she means, and how AD really needs to be presented as a disease which is reaching epidemic proportions. On the other hand, I'm not sure that everyone would automatically dismiss the significance of a presentation on AD, simply due to the word "disorder" being subbed for "disease."
I guess I'd say let's take the opportunity to make these vocabulary distinctions when we get the chance, but in the meantime at least it's being featured in the media.
You are all right. It did upset me though as I felt the way it was said and worded that it did make the disease sound like less than it is. I have had many people tell me that until they saw how the disease affected Gord, they had no idea it was more than just forgetting where you put your keys and the name of the person you met half an hour ago. To me, disorder glosses over all the losses an AD person has.
I didn't read the link, but I do feel the same as jang*-disorder just isn't an accurate portrayal of the disease. Is prostate cancer a disorder of the prostate? Hell no, but it can sometimes be "cured" or put into remission, or at least removed. No such thing for dementia. It is brain disease and deterioration of the brain which controls all the body's functions. No chemo, brainectomy, radiation, removal for "cure" the disease. I agree most people, including me when we first started this journey, have no idea what a dementia/ALZ dignosis really means until they live it. I truly had no idea that many dementia patients can be aggressive, agitated, wander, etc. I thought DH would lose his memory and be a contented, happy camper being home and cared for until he died. That has NOT been our journey.
Too bad you did not have a AD person handy to take over to the TV station and show them. I agree with LFL that in the media AD is shown in either the earliest forgetfull stages or the hospice bedridden stage.
How could anybody be expected to understand (or even believe) the babling, crying, yelling, joyful, hateful, loving, repetitive compulsive activity (and all in just a few minutes) stages?
When was the last time an uncooperative or irritating AD person has been shown on TV? Even the (well done) HBO series did not show the irritating behaviors. Whatever ya call it, the world needs to see the whole picture.
I finally saw the show Dr.OZ did on AD. (it is all caused by diabetes and can be 'cured' or prevented by eating vegtables . . . .) I wish I could have been there with my wife to bring her up on stage and ask that she be cured with vegtables!! They would not allowed her (or any other AD person) in the audience because they would have interfered with the taping! THAT is real AD behavior!
LFL, I think many people think that is a description of someone with Alzheimer's. Just sitting there day in and day out smiling blankly. m-mman, I think if we all listened faithfully to Dr Oz, we would be eating all day in between searching for the latest thing that is going to save our life or make it better.
The sad thing is,so many people believe Dr.Oz.My friend said she will never get AZ because she is following DR.OZ'S advise. Saved my breath trying to tell her any different.Personally,I don't watch him.
The first time Dr Oz talked about Alzheimer's a couple years ago, I sent him a nasty email. Told him he was totally wrong - there is no way to prevent AD. Never heard from him.
bluedaze, I have thought the same thing of other people on T.V. Especially the sports shows, I don't know how they can find a hundred ways to say the same thing. The only times I have seen Dr. Oz is when I am chanel surfing looking for something decent to watch. I don't watch any of the reality shows and think most of them are probably set ups!
When I take my dh to the local VA office to see his dr. they have a TV going...it's all about health not a network station. And, there is Dr. Oz. Can't stand him. I don't even what the network he is on...can't stand that either.
1. Dr. Oz says eating curry can prevent AD. 2. THIS organization exists: http://www.alzheimer.org.in/ (Alzheimer's and Related Disorders* Society of India.) 3. I can only conclude from this that there is not enough curry eaten in India.
Yeah, now that The Gospel according to Oprah is gone we have the Gospel according to that quack Dr OZ..Can't stand him..didn't much like the touchy feely Oprah either.
Above is the link to what Dr. Oz preaches about Alzheimer's. I guess he is running the show again today. He is putting out false information as far as I am concerned. Diet and exercise might work for the normal forgetfulness that comes with aging when the brain slows down, not being killed off by AD.
We can find examples here of spouses who followed what Dr. Oz preaches yet still has AD. I notice someone always will post a comment about coconut oil and how they read it is a cure. We all know it is not, but for some it can improve cognition.
Guess what?! The Mayco Clinic refers to FTD on it's disease information pages as a "disorder" and the Cleveland Clinic refers to it as a syndrome. Who knew? I still stand by my earlier comments.
Well, Dr. Oz and Jean Carper are two peas in a pod, but there's a way of looking at their "contributions" with a positive spin.
These are people who make a living by marketing books and ideas, so to keep their bread buttered they must identify areas that are of great concern to their target market. They have both zoomed in on Alzheimer's because this is a health crisis that is rising to the top of everyone's Fear List.
With Jean and Oz so focused, it will not be long before the hue & cry of the public has made funding Alz research into a major winning issue for politicians from any side of the aisle.
And once the wave of Carper and Oz groupies who've practiced what they are preaching begins succumbing to Alzheimer's ANYWAY there will be no more room to protest that Alz can be prevented by health practices, and certainly no one left to believe it. The urgency of putting big money and incentive into finding REAL answers is hitting the pressure-cooker point, and the failure of pop medicine will stoke the flame.
So it's win time now for Jean and Oz, as they rake in royalties, but down the road people are going to laugh at them.
I just went to the link Charlotte put up for Dr. Oz and Alzheimer's. I am ready to throw up. The people who responded (except those from this site) actually believe that Alzheimer's can be prevented by eating the right foods, keeping their mind active, and exercising. PREVENTED. That is what Dr. Oz is touting. PREVENTION!!
Joan, other opinions are not profitable, as you know.
My hunch is that it's probably not 100% accurate to say that in some of our cases there's NO prevention. Or there was no point at which prevention COULD have occurred, in theory. It is my belief that Jeff did himself damage, early and often, by being careless with chemicals. Such as stripping furniture for a job as a teen, with no precautions taken as to ventilation, avoiding fumes. Same cavalier approach to handling glues while doing construction, or cleaning up pesticide spills as a hardware store owner. I cannot prove that this is what hurt him, but we know the damage gets started way before symptoms.
So possibly your grandchildren CAN prevent Alzheimer's in SOME cases, by not exposing themselves to excessive toxins, and trying to avoid traumatic head injuries (wear a bike helmet!, don't play football or box!) Not in all cases, but maybe in some.
However, even if my thinking here has some merit, it does NOT support Dr. Oz's strategies which--though valid for overall health--are essentially snake oil from the standpoint of Alz "prevention."
PrisR - I was thinking the same thing, so you are not alone. He needs to talk to that neurologist I think from Florida who spent his life studying all the 'cures' and tried them cause AD runs in his family. Despite doing them all he still has Alzheimer's.
I find the local TV newscasters do a superficial job on most things, so I am not surprised they called Alzheimer's a "disorder." They're going for a quick hit, not doing any extensive research, and there it is. Someone was looking for a word, maybe thought disorder sounded better, and went with it. I don't think they were intentionally denigrating the disease. I don't think they understand the nuances of the language.
It's the same for me when I hear or read "confined to a wheelchair." That is inappropriate. For a person with limited mobility, a wheelchair gives him/her freedom. Newspapers, which follow the Associated Press stylebook, are not supposed to use the term "confined to a wheelchair," but they still do ... most people don't have the AP stylebook committed to memory, and they believe the phrase is appropriate.
Small stuff, really. We can try to educate them, but many do not want to be educated.
bluedaze* - you could start one of those "fantasy" threads with that comment! LOL
I once read that someone died after "a bout of cancer" and thought that sounded horrible. You can have a "bout" of the flu - to me it sounds like something you battle on a temporary basis. A bout of diarrhea.
While I will refer to dementia as a disease, technically it isn't. It is better understood as a collection of symptoms. The terms disorder and syndrome don't bother me. And I don't bother debating whether or not to use the word disease these days.
Nor is Pat Summitt going to" beat this one", either. That always seems so sad to me that her family may actually believe that keeping busy and keeping fit helps. If it would Alz would never have caught up with my dh. No one was busier than he.
Yes, "bout" is a bad word because it means this is something temporary.
And I don't think Pat Summitt's family is saying "beat this one" any more. I think that was in the first articles but I haven't seen it since. It can help beat depression at first but I think it leads to bigger depression later. Knowing that you can't beat it, but you can do things to make life as good as possible, is more realistic and better prepares you for the future.
When I heard Pat Summitt and her son speak last month, it was all about education, awareness and raising money for research. Apparently, they have been brought around to reality--perhaps by the Alz Association, because they held the event.
Ha ha ha ha ha...ha. Someone has responded directly to my remarks on the Dr. Oz "Prevention Plan" page. She says that Alzheimer's did not exist 50 years ago, that it is not prevalent in countries that limit fats, that sickness (and by implication Alzheimer's) is the result of vitamin/mineral deficiency, and that I have not done my research.
Oh my goodness. The poor dear. Check it out: http://www.doctoroz.com/videos/5-step-alzheimers-prevention-plan?fb_comment_id=fbc_10150980284495549_23487197_10150985850115549#f364e6a204
but be nice to her if you reply. She's in for a rude awakening someday.
Nah, he's too busy sailing or something. Bad wifi on the sea. (To be fair, I have no idea what Doc Oz does for fun.) Well, I think I've been sufficiently strident and annoying on that thread. You have to sort of chuckle though, about all the jibbering about Sudoku, etc, by the posters, including one person who says (to paraphrase) "this is great! I'm going to give this info to my friends whose grandma just entered a nursing home!"
Just visited the site and it was interesting to see that Dr. Fohtui is quoted on it. He's a local doctor who has made a career of touting "memory cures", etc. Some families I know take their LO's with dementia to be "treated" by him--I've always wondered why. He has been on our local PBS station during their fund drives, hawking his book(s). (MD Public Television, Channel 22 here, Emily.)