Because we are all in this "Alzheimer's Bubble", we know about the disease first hand. We are generally up on every bit of research, drug trial, and medication, so I guess I should not have been upset at what happened yesterday, but I was. We were fundraising outside of a supermarket, and one woman kind of brushed us off, saying - "Oh, I thought it was cured. I read they found a cure for Alzheimer's." She then proceeded to walk away. Not without 3 of us stopping her to explain about research, trials, and that there was NO CURE. She thanked us for the information, and walked away.
I know. I know. Most people not personally involved in a disease, don't pay much attention to it. I'm not up on all the latest research and information for the multitude of other diseases from which people suffer, but it got me to thinking that no matter how much outreach, education, and advocating we do, only those who have been touched by Alzheimer's Disease really know what is going on in relation to a "cure". As evidenced by all of the people who dropped dollars and coins in our cans, saying, "Oh, I understand. I'm with you. My "fill in the blank" relative had it."
My thanks to all of my teammates who worked so hard all day, as well as my thanks to all of the wonderful people who donated. We raised over $500 in 4 hours.
When we annonced to our Sunday school class that my husband had Alzheimers disease somone asked me afterwards if you "could die" from this. A neighbor was suprised that my husband could not work any more.
Altho I knew people who said their LO had AD, I brushed it off. How could anyone forget their own children? That was before my DH got it and I learned what it is the hard way. It was years before I came to the point of acceptance and have tried, ever since, to help 'educate' the public. It is an on-going never-ending process. We get so tied up w/AD that we can forget there is a world of pain out there from other conditions. Most of us know about cancer & heart disease, but I didn't know about Lupus until my niece got it. Some of you may know, but a lot of you don't unless you've had personal experience w/a LO as I have. She died from Lupus and I guarantee you that you would never want to trade the end stages of AD w/dying from Lupus and I've seen both. I didn't really want to know about AD before, why would I care, couldn't happen to us, so I tend to cut others lots of slack, I don't know what horrors may be in their lives. So I continue my efforts knowing full well it will not end in my lifetime, just the way things are.
My sister-in-law died from Lupis. We lived in another city and I wouldn't have seen her at the more or less end stage, but did because my mother died less than 6 months before. And you are right, unless you've known someone dying from one of these diseases you just don't get it.
Most people don't understand that there is no cure for dementia. Not just Alzheimer's, but any of the dementias. And most people need to be told that it is a terminal disease. They don't know. It never occurred to me that people die of this disease before I became a caregiver.
I so agree. I told the Hospice Doctor this week that the media does not broadcast the Alzheimer patient the way they should. He was speaking about the medication they now have and how it really does not much more than mask the symptom and sometimes does not even do that. I told him that the news media should show the Alzheimer commercial when advertising these medications as a person who can do absolutely nothing with out the help of others, even exist.
It makes me sick when I think about how people view this disease and that is the very reason our dear loved ones get the worst end of the medical health care. There was a time only just about 5 years ago that the Medicare computers were programed to automatically refuse a claim if the diagnosis was Alzheimer. I guess Ronald Reagan did help put a stop to that because that is when Bush signed the law that the Alzheimer could benefit from therapy.
Still makes me sick to my stomach when I think about it. Just wish I was going to Washington with Joan, no they would kick me out.
Jane, Oh I so agree with you. I get so ticked off every time I see an Aricept commercial, when all you do is give your loved one a pill & everything is back to normal. BULL$%*! And, the folks in that commercial are older, what about the younger people. Dementia has no: class, race, age or gender.
I get furious at the Aricept commercial (Granddad at the airport and doesn't recognize Granddaughter)...That is the most misleading commercial I've ever seen. It's unfair. It makes the public believe that there is a miracle cure - and why didn't we get that pill and just cure Papa. (Of course, he's been on Aricept for years) awwwgggg!
If you think about it, all the ads for drugs make them sound like miracle drugs which we all know are not. I agree the aricept one is so misleading.
Alzheimer is treated like mental illness was until recently. Now mental illness is getting treated more like a valid illness. Unfortunately Alzheimer/dementia is at the beginning.
I didn't tell anyone except close family when we got the diagnosis at first about three years ago. In time, I decided to share with my best friend - we have been friends for years and have shared many things both good and bad. Her mother in law died with AD so I thought she would understand. She is younger than we are by about 15 years.
Her reaction surprised me. She was very impatient with me, told me that all men did what my husband did and that was normal behavior for a man. she gave me a book by Dr. Laua based on the concept that if we feed our men good meals and give them plenty of sex, they will be happy and won't do things that annoy us.
My husband has been impotent for about 15 years - I will share this with all of you, but not folks I see face to face. I took the book and kept it a little while and then left it on her porch. Needless to say, our "friendship" has gone down hill. We have never had any discussions about it, but she just doesn't get it.
Apparently her mil was a sweet, elderly - more than us - gentle lady that just forgot things and that progressed - forgetfullness. I have heard that when you have seen one AD person, that means you have seen one AD person as it takes different paths with different people.
It is a terrific loss to lose my husband, and almost an equally big loss to lose my best friend. So, while she doesn't think AD has been cured, she was touched very closely by it and still doesn't understand it.
Also, we would like to throw a brick at the TV when the Aricept commercials come on. What an insult! At least it is one thing we can agree on.
dagma3, this problem you have with losing your "best friend" probably isn't a topic that a guy ought to weigh in on, but for the life of me I can't understand why it isn't something that you two couldn't just talk out between yourselves instead of your being hurt by that one response and then not pursuing it further. Is this some sort of woman kind of reaction that men wouldn't understand?
People really don't get it. I have explained it till I'm blue in the face. That fact that dementia is an untreatable terminal disease is something folks don't want to think about. When I have gotten up the courage I have faced most of our former friends and told them what the disease is really all about. Everyone know someone with some form of dementia. I have asked for help and gotten it. On a humorous note-when I needed help spiriting Bill's car away I know the man who drove it thought I was flim-flamming my husband-but he did sense that I was in a panic situation. People are finally starting to ask how Bill is (like they think there's going to be an improvement). I make it a point to thank them for asking and thus validating the fact that he is still alive as a human being.
I change the channel when that Flippin Aricept commercial comes on.! What about all those who don't want to leave home, when their anxiety will not allow them to go anywhere unfamiliar, ahgggggggggg.. OK, I feel a bit better.
Susan L, that's my DH. He never wants to go anywhere and it's gotten to the point that I don't want to take him anywhere. It's so hard to get him in the car, buckle his seat belt for him, and make sure he's comfortable.
Those people in the Aracept commercial are rediculous.
I wish someone would tell the Aricept people how disgusted we (the people who deal with AD every day) feel about their commercial. Would they even care, though, as long as they can make people believe that Aricept is a cure?
No, they would not. If they can convince people that taking a pill once a MONTH (as per Sally Fields) is better than taking one once a WEEK, even if it costs a lot more - they can convince them of anything.
I just heard that AIG has hired FOUR public relations firms to convince us their marvelous employees deserve marvelous bonuses. Publicity rules!
China now feels the world should accept the burden of their industrial pollution because they export so much. Next thing you know they'll be charging extra because they are so kindly adding melamine to so many of their products.
The AIG thing is a mess, for sure. The problem is that there are legal contracts giving bonuses to these clowns. If the government breaks those contracts, it could set a precedent for the future and would undermine confidence. So say the pundits.
While I deplore giving AIG employees their bonuses I would not like to see the federal government stepping in to break a contract that was not of government doing. This is a civil contract.
You all have valid points, I guess. But why do we have to keep paying for it? And as far as confidence is concerned, everyone I talk to has had their confidence and dreams shattered.
We got waaaay off topic here. We were discussing how misinformed the public is concerning Alzheimer's Disease. Please respond to that topic. Thank you. Gotta run. I'm off to an Alzheimer's meeting.
in my opinion, for so many yrs after and before dx- we jump thru hoops to help our spouses look and pass as "normal. we dont want to draw attention to them or ourselves. it was still considered taboo and the consequences of revealing someone had dementia caused additional concerns. on another thread someone suggested a type of 'button' to use on them when we travel. i for one, would applaud that. i think we've swept the diagnosis under the carpets long enough! people need to see how much AD is out there in the public. real statistics are covered up and the public has no idea how many of us are victims. i know many of us go out of our ways to help our loved ones avoid recognition they have the disease til they can no longer cover it up. i did too. we need to overcome the 'stigma' attached to mental diseases esp AD. if we really want to help get the word out about AD then we need to open up and allow the disability to be forthwith and out among the population. divvi
I agree divvi, AD as well as so many other things such as numerous physical diseases, Alcoholism, Drug Abuse, actually all forms of Abuse, even a Gay LO was swept under the rug for years and years. As I have said before, we have come a long way, cause back in the 60's they put Women in mental institutions for PMS and Menopause. But it's time for AD to be public, people need to understand it can happen to them. I guess that's why I put my #1 priority for legislator's was Understanding of this disease. From day one I have been honest about it. I guess I figured people are going to see something was wrong. But as Bettyhere stated before we joined the journey, we brushed it off. I can't blame the public, for one, because it has been swept under the rug for far to long. The message begins with us. Not just spreading the message to other people on the journey, we need to scream it out in public forums. Rk
I think mental illness frightens people as no other illness does. I think that is so wrong. But looking back, even as children, remember "playing like a crazy man".. Chasing the others with "Eyes wide, mouth agape, arms flailing around", and all the others would run from the crazy man. I believe that fear lives in many people. I agree with everyone that this is wrong but are we just as guilty. Why would we want to not give the last name of a LO who passed away with the disease. Is it some kind of stigma to say he died of AD instead of cancer? I'm noticing more and more obituaries are listing AD in the write-ups. It's a sign that more of us are acknowledging the challenges and consequences of the DISEASE!!..Not the condition.
The thing that gets me is when someone responds to my informing them that my wife has Alzheimer's "Oh, we all forget at times". I wish it were that simple. And the Aricept commercial doesn't help any. How about a class action suit against the company demanding that they tell the truth about the disease? Does anyone know a lawyer who would like to take this on "pro bono"?
Just to clear things up. AD is not a mental disease. Many symptoms can be the same, but AD is a degerative medical condition, not a psychiatric disorder. Of course, people are afraid of both--can't say I blame them, sometimes such people are dangerous. I know there was a period when DH was. But the treatments and causes are quite different.
Bettyhere, ...if AD is not a mental disease, why is it called Alzheimer's DISEASE? The Alzheimer's Association even defines it as " a progressive and fatal brain disease". I believe one of our problems with insurance and medicare are that they do not regard it as a disease, but rather "a condition".
I respect you introspect and talents as a writer, and wonder why you believe that it is NOT a disease.
Nancy, the emphasis should be on "mental". It is NOT a "mental" disease. Yes, AD is a disease, but a physical one due to progressive damage to the brain. This is not a mental disease any more than someone with a serious head injury has a "mental" disease.
This was a brief news they had on the 700 club. I am trying to find out where their source is to see if there is more. I know they have been researching this tool.
Early Detection of Alzheimer's for Elderly CBN News March 17, 2009
CBNNews.com - A new test makes it possible for early detection of Alzheimer's in the elderly.
In a large study, researchers at the University of Pennsylvania School of Medicine studied the spinal fluid of Alzheimer's patients.
The test focused on levels of two proteins in the spinal fluid, which are attributed to damaging the brain.
Researchers say the test can help keep track of the progression of the disease and could lead to better strategies for treating patients.
There are 26 million people worldwide who suffer from Alzheimer's.
Here is the link to a more lengthy report http://www.medicalnewstoday.com/articles/142553.php
It would not surprise me that someday they change it from disease to symptom. When I couldn't get pregnant it was diagnosed as PCOD - d being disease. Then they found out it is a symptom of insulin resistance and changed it to PCOS - s being symptom. When they find the cause of Alzehimer they may find it is a symptom. Example: if it turns out to be a diabetes type 3, then it will become a symptom of diabetes not a disease in itself. At least that is how it seems to go.
I had to explain what AD was to a guy I know at work.
I told him that, "It is a physical disease of the brain that is fatal." He didn't know it was fatal. Nor did I until that horrible day when I found out it was. Of course I had no choice but to educate myself.
It is not a mental disease, but many people are probably under the impression that it is. I find that there are not many illnesses that make people recoil more then mental illness.
NancyB, I think the reason for not giving the last name of a LO here on the internet is just that, it's on the internet! And that death announcement is out in the big wild world of cyber space. Of course anyone can look up death announcements but with print it takes a little more digging, so identity thief's don't bother digging when so much info is at their fingertips cyber space.
GuitarGuy, honestly I had heard some 20 years ago that it was a fatal disease, but until I was thrown on this journey I didn't remember that it was. Like you and most of us on this journey I had to take a crash course in AD 101.
As I said, I have been honest about it since day one, Maybe cause I am from the speak your mind generation, but understand that others have chosen to sweep it under the rug. But until we and the AD LO can tell each story without embarrassment, shame, or feeling they are abnormal it will always be swept under the rug. Speak up! Not just to goverment, you need to talk to you friends, Lo's, people you meet on the street. Even their doctors need the education, the grocery store clerk etc, etc, etc. Let the movement to inform the public begin with you.
Charlotte, Just this morning there was a article in our local paper (I haven't gotten to read the whole thing, saved it for later) that there may be a link between diabetes and AD. I was thinking Huh? I know a ton of people with diabetes and not a one of them has AD. Who know's but I think they grasp at straws often time, just cause they don't have answers.
Marsh I think it's like Starling said, your answer is perfect. Of course it would be great if "they" could take the time to be further educated on the disease.
There may be a link between diabetes and AD. My wife has both. Some research has shown a problem with utilization of glucose by the brain in AD, suggesting that it may be type 3 diabetes. This is one reason we try the MCT - it provides energy for brain cells by-passing the glucose pathway. There's still a lot more research to be done, but this association is worth looking into.
This association is also worth trying, marsh. When there's no other cure or help, we can try the MCT oil or Axona and hope maybe it provides energy for brain cells bypassing the glucose parthway.
Don't know if this applies to the misinformed. I got the newsletter from the Alz Assoc today. I haven't read the article because of my eye bothering me but it says something about second hand smoke can cause AZ. At the rate they are going everything out there will cause AZ.
Whaaat? I have checked all my Alz. mail and haven't seen that. I hate smoke - and all it does, stinky houses, breath, clothes, cars, ...AIR... but have not read it caused brain degeneration through second hand exposure. wild!!
Until they have proof of findings of the cause of Alzheimer's, I won't believe the "findings" of all the studies of all the medical people trying to get published for tenure!!! My husband doesn't have diabetes, but like Marsh, I think that it could be something that affects certain people with AD. I don't think it causes it though, any more that not working crossword puzzles, or not exercising, or stress, or inhaling second hand smoke. The last one may cause lung cancer though!
They are reaching in their search for cause and cure, but I'm not buying their findings until they prove them. They have to reach or they won't find it. I'm finally reaching the point where I don't get angry when I read far out findings any more!
I just wish we could get through to the public better! We have trouble trying to get through to relatives who aren't on the scene to see the day to day living with AD.
The Washington trip helps. Thank you Joan and Tony and others who are going!
I read that there will be a lovely moment at the Washington gathering where candles will be lit in memory of victims of Alzheimer's. That would be a beautiful picture, I'm sure. (Info found on Alzheimer's Association website) Each candle is a "point of light" that should illuminate our pleas for for help and better understanding.
Nancyb, This was in the local South Carolina chapter that came by snail mail. Briefly it says...People who are exposed to second hand smoke may be as much as 44% more likely to develop dementia. Apparently the study was published in the BMJ in February.
How can they say that ANYTHING is more likely to develop dementia, when they DON'T know what causes it in the first place?????!!!!!!
That is why I think that the studies do not hold up. You can take 100 people and see who smokes; is exposed to second hand smoke; works crossword puzzles; exercises; drinks wine; eats their veggies daily; lives in a pollution free environment; reads a lot;(I could go on and on) - and based on that 100 (or 1,000) people over a period of 10 years, see who develops dementia of any kind, and come up with a finding. But nothing proves that any of that has anything to do with them developing dementia. It only proves that out of 100 people, after 10 years, ____ people develop dementia.
That is all I'm trying to say......
I've seen some of the surveys that these doctoral students send out, and get back, and chart, and they have already decided what they want to prove BEFORE they send out their questionaires!
Oh, well, time to get down from my soap box again......
I love the "point of light" - I wish I could go there and light one too......
Oh my goodness - I guess I am doomed. I grew up with a family where the air looked like smog. Everybody smoked - camels, lucky strikes, cigars. They used to wonder why I got car sick and threw up. Thank goodness I never smoked. I would like to see more studies done on that one. But.........that might be why I have asthma. Why don't they?
Jean21, thanks for the article. I read the entire thing (and took 1/2 hour continuing medical education since it is in a recognized journal). Basically what they said is that there seems to be a correlation, but much more study is needed. The bottom line is that second hand smoke is not good for you. And yes, dagma3, it does at least aggravate asthma. While it may not "cause" a disease (except lung cancer), it will make whatever you have worse.