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I would be very willing to be tested. My mother has this devasting illness and if I am going to have it I would like to know.
I as well. My mother died 2 years ago from Alzheimer's at the age of 66. My siblings and I knew for years that something wasn't "right" with mom. I only hope that this can give hope to people ans their families, so we can help alleviate the pain and sadness for the sick and their families.
From my experience, personality changes, and other behavioral indicators were there 15-20 years prior to dementia or diagnosis. That's a long time to wait. (Especially for family who may also be at risk for ALZ). An early test is truly needed. Early treatment could show us a a lot regarding progression, or what is working or not working to treat this disease.
JG-Judy,
You just hit the nail on the head! My wife is a gerontologist (PhD, Tenured Full Professor, Research Center Director, Tier 1 University) and she has published around this issue quite a bit. Firstly, there is no reasonable certainty of what causes Alzheimer's. The amaloyds might be a symptom of the disease or they might be part of the body's defense against the disease. And in either case you cannot substantially change the trajectory of the disease. Even drugs that "forestall" the worst symptoms only work for 6 mos or so and when stopped have such a rebound effect that the 6 mos are lost immediately and perhaps more.
If you do not know that you have an eventually terminal illness, your quality of life will be incredibly higher than if you have that knowledge. All of human existence centers around denying that we will all die someday and the trick is to do it without pain, with dignity, and with as much grace as you can muster. Many oriental cultures are very observant of this issue --- to a point that surprises Westerners. There have been hundreds of papers published on whether disclosure actually lowers quality of life and the vast plurality of the papers agree that it does.
So why do this testing and be "aggressive"? Because it adds another revenue stream to the for-profit medical industry. The drugs being sold for Alzheimers are starting to lose favor because at the end of the drug's use, the family of the patient realized that they just spent a pot load of money on something that provided no real benefit. And they are turning against the drugs as the word gets out. The drug companies are looking to replace that lost profit --- especially if it can predict things 15 yr so years out and give them a much, much larger window in which to sell you Alzheimers drugs.
Chris749391,
Yes, drugs are poor. They should be cheap. But no good evidence regarding quality of life being higher when told of fatal disease. In fact, recent evidence is just the opposite and your belief that "the plurality of papers" supports decreased quality of life with knowledge of chronic disease is simply false. Also, what about the family being able to plan and cope? To say nothing of the individual being able to plan. I share a cynical attitude about drug companies profit motive but the paper/pencil screening tests are cheaper than getting your bp done each time you see the physician and I bet new evidence will soon show medical costs are reduced when docs know you have cognitive impairment. Imaging studies expensive and are yet to prove useful in treating or preventing and they should not be done except as research.
As a former nursing home nursing director and current hospice nurse, this touches on several hot buttons for me.
Alzheimer's is a devastating illness, both to the patient who loses chunks of memories and function over a period of years, as well as family members who face gradual loss of their loved ones, increasing responsibility for caring for them, and the financial obligations associated with that. IF early treatment could be shown to be effective in significantly reducing or eliminating the effects for a period of years, then further research is both ethically and and morally imperative, no matter what the cost. Neither government or private health insurers will be willing to finance PET scans early in the process for screening or diagnosis. However, if blood or CSF testing is shown to be diagnostic, then testing will be both affordable and widely available. Without continuing research, we may never know.
While quality of life is important to me as a hospice nurse, a head in the sand attitude about early detection seems foolish. Early detection offers opportunities toward obtaining long term care insurance, making plans for the future, Early detection does not have ANY significant impact upon a patient's ability to have a peaceful and dignified end of life. There is a time when hospice provided palliative care is appropriate; early or middle stage dementia is not that time.
I don't understand the concern about adding to the revenue stream. Of course aggressive testing and early treatment will do that. If that testing and treatment is shown to significantly enhance AND lengthen high quality life, I'm all for it.
Sounds great, but what doctors or insurance companies are going to ok a PET scan early in the course of the disease when treatment could really help? That just makes too much sense!
Insurance companies now don't pay the full for cost proven screening procedures such as colonoscopies. They sure won't cover something like a PET scan for Alzheimer disease.
These results had already been determined from the work done, and continuing, through The Nun Study ( http://en.wikipedia.org/wiki/Nun_Study ). With my mother, behavioural changes had reached such a point that we began looking for answers when she was 52. She was finally diagnosed at 58 and a decade on, she is in the final stages and completely vegetative. You wouldn't allow a dog to go through what my mother does. Earlier intervention may have given her a few more years but none of the current drugs will halt the disease...
Everybody is forgetful to some extent. This seems to me an attempt to medicalize a segment of the population to sell drugs to. $$$$
Alzheimer's is way more than just a little bit of forgetfulness. It's losing someone a little bit at a time--in pieces, for years on end. First little shifts in their personality, then gradual decreases in their ability to focus on tasks at hand or manage their emotions or respond in their normal manner to emotional stimulus. Then the memories start to go or become jumbled--time lines fade. And then you get to watch them slowly become more detached and isolated, trapped in their own bodies, until they finally spend a few years more or less vegetative.
Anyone who dismisses it as just being "forgetful" has obviously never gone through the torture of losing someone to Alzheimer's. I pray you never have to. It took over a decade from the point at which my grandmother finally received a clear diagnosis until she died, wasted away and almost fetal in a bed in a nursing home because none of us had the capacity to continue to care for her at home. My grandfather watched his wife forget who he was, until she reacted to him like he was a hostile stranger coming into her room, until eventually the disease robbed so much of her self from her that she did not react to him at all. This is way more than just being "a little forgetful"--it's a slow, torturous death defined by the complete and total loss of any sense of yourself over a prolonged period by which you are decreased in incremental amounts until there's nothing left at all, and then you still lie in bed, barely reactive, sitting in your own s--t, unable to speak or respond until finally, eventually, you die.
Anyone who thinks that's equivalent to being "a little forgetful" is blessedly ignorant of what the process of loss is in relation to Alzheimer's.
forgetting how to to clean your teeth or go the bathroom or even eat for that matter is just a tad more serious than being "forgetful".
I mean seriously, come on, Happy. Get a clue.
If that's all Alzheimers was, I'd still have my mom and would not have witnessed the awful slow death that alzheimers brought.
My mother, her mother, both of her grandmothers and and aunt died of Alzheimers. All of her daughters watch themselves and each other very carefully. Man, if there were a test, I'd be at the front door no matter the cost. I will not make my family go through it if it's me.
I thought Happy meant that too many tests would be given because everybody has a memory lapse now and then and then a test would be ordered etc.
Yes it's more than a little forgetfulness.. My husband's grandmother had it for years. She forgot how to go up steps, would wet herself if left to sit too long. Eventually, I think what happens is the disease affects the part of your brain that controls things like chewing, swallowing, breathing... It's a horrible, terrible thing to watch someone decline this way. A good friend's mother has it now. She is assisted living. She has good days and bad days. She was found down the hall one day, naked, her clothes strewn across the floor, in bed with a male resident who incidentally "had all of his faculties".....What's scary is that people in 60's and 70's are getting it... not just the really old timers.
Could you possibly be a bigger imbecile, "happy?" Seriously, do the gene pool a huge favor and blow the dog sh1t that passes for your brains out now.
Happy2008 you obviously have never had to see an alzhieners patient never mind take care of one. I am so happy for you to have such a good life. I am currently watching my mother slip away every day. Soon I will only have a shell. Please imagine what it would be like to have the external shell of your mother, father, brother, loved one. That is all a shell! You cannot talk with them, you cannot laugh with them. The only thing you can do is dress them, feed them, bath them, take them to doctors, day care. It is just like a new born baby, they cannot tell you they don't like something, that they do like something, that they don't feel good or they do feel good. They loose the ability to communicate. They loose the ability to live. Please go to a nursing home and see what alzhiemers is all about before you make a comment like that. Walk a mile in my shoes and you will change your tune. You will be right beside every other care taker of an alzhiemers patient asking for more research, more funding, more time with your loved one. It is a terminal diagnosis, it is a long slow death sentence that I wish no one in this world would ever have to hear from their doctor. Currently now there are only 4 drugs on the market to treate this. That is it only 4 and they only temporarily mask this disease. It does not cure, nothing cures this. Again this it terminal. Does that sound like it just being forgetful? I wish you could follow me for 1 day in taking care of my mother, you would never make such a thoughtless statement .
My mother was diagnosed six years ago, and all four of her older sisters had Alzheimers and have succumbed to this terrible disease. Mom is in the middle to later stages of Alzheimers, and although one of my two older sisters now lives with Mom and cares for her, she is unable to be with Mom twenty-four hours a day, and the painful decision about finding Mom a future care facility is rapidly approaching. My sisters and I, along with our female cousins who are the daughters of our mother's deceased sisters, all realize we are probably at a higher than average risk of having Alzheimers, and I would like to find and take part in a study in the hope of helping others, especially my own grown children. My two grown children already question many of my forgetful and repetitive behaviors, and I am worried that I am in the pre-Alzheimers category. God help those who care for a relative with Alzheimers and those who must make painful decisions about the care of their loved one.
Barbara - I am sorry that you are going through this. Our family is now in generation 4 of dealing with it. You might try contacting Dr. Sandra Black at the Memory Clinic at Sunnybrooke Hospital in Toronto, Ontario, Canada. Her office may be able to either help you directly or refer you to someone closer to home. Best of luck.
Alzheimer's disease is a long-term death sentence and it affects people long before it is figured out as a clinical process. Any drug therapy that can alter the process as early as possible will give people a better quality of life for a longer time. That is all good. Those of us with family members already in the process are at risk as well. Alzheimer's can be devastating both to the person with disease and the caregiver, and its costs are overwhelming for long term care when the family can no longer manage 24-hour care. Anything we can do to stop this damn disease earlier is critical. Every doctor ought to know and suspect the clinical process beginning and we need the treatment drugs and plans to be developed right now.
My mother was a college honor graduate and English and Speech teacher. She was very outgoing and a wonderful cook and hostess. Now she lies in a nursing home bed most of the day, a physical and mental invalid due to end stage Alzheimer disease. Eventually Alzheimer disease will affect the body as well as the mind. When I visit her, there is only the shell of the person my mother once was lying in the bed. This a devastating illness.
Please, all, look into Prana Biotechnology out of Australia- look at the list of founders, their cvs, their ethical decision making, and read the history of successes thay are seeing. Big Pharma has not been able to "buy them out", and they have now locked in world-wide patents. This approach goes after the science behind the disease- the cause, and clinical trials in Europe show significant improvement in just 12 weeks of dosage. Next step of clinicals now being scheduled. This will be a cure. Also- look into their work on Parkinson's and Huntington's. This is real. I just lost my mom to AD on Saturday, and I have Parkinson's. Dad is a retired physicist and he says "these guys have it figured out"...read all of their dozens of presented and published papers.
Additionally- Prana Biotechnology's is a curative approach, NOT a therapeutic one, so the idea that, at least with Prana, that it's all about selling drugs, is a red herring. If a cure can be found, then this is good. Selling these drugs is ethical. Selling Alzheimers' "drugs" that barely even treat symptoms, and for only short periods of time, is criminal and should be stopped. NONE of the drugs currently on the market for the treatment of AD has ANYTHING but a modest and short-term effect, if lucky. I am impressed with the Prana folks because of their ethics; no sell-out, they farm out research to university and research hospitals; the company itself only has about 12 employees, so there is no overhead, and they are almost exclusively paid in stock...no artificial manipulation of stock price through press releases and speculative claims, etc. THEY ARE REAL!! One of the founders was Ted Kennedy's cancer doctor.
We first noticed a significant change in my mother after she experienced the trauma of IV Chemo in 2002. My experience with her disease has been difficult. She wasn't finished with the things she wanted and still needed to do. Our whole family is heartbroken for her. The only plus perhaps is that she never really realized or complained about her fading lucidity. A year ago she fell and was slightly injured, but again, the trauma advanced the dementia. She now resides in a "memory care" facility to the tune of $5200/mo.
It took very aggressive prodding and documentation on my part over almost five years before I could convince my family and my mother's doctor that she wasn't just suffering from "normal" old-age related "fergittiness."
There were times, I know, when my family and my mother's doctors thought I was a an alarmist and a royal pain in the ass, but I treasure every lucid moment my mother had during her decline and am thankful that we were able to find the right combination of drugs to allow those precious moments as they became fewer and farther between. Fortunately, for her and for us, she died of a leaking abdominal aortic aneurysm before the disease could completely destroy her beautiful and charming personality, wit and mind.
Not many victims and their families have been so lucky. Most of the drugs currently available to treat the symptoms of Alzheimers and other dementias are optimally effective the earlier they're prescribed in the progression of the disease. Maybe these new guidelines will at least make sure that patients get appropriate treatment early enough to delay the onset of the disease and extend the "good" time they have until a cure can be found. Barring a cure in their lifetimes, at least they'll have that extra quality time.
Wow, my father died in 1980 after 11 years with Alzheimers (back then it was called Chronic Organic Brain Syndrome)...He was diagnosed at the age of 62, and died at age 73 going through all the classic stages.... it was totally agonizing for us to watch him deteriorate to nothing! My mother developed senility at the age of 85 and died at 89 - but probably not "classic Alzheimers".
I have older siblings (I'm 59) and so far everyone seems ok - no dementia problems. But I would be willing to participate in a clinical trial to see if I would develop the disease or best case scenario prevent the horrendous disease.
My husband's mother also had Alzheimers. I worry about my grown children.
www.alz.org is your source for support.
"I think we're realizing that the process of Alzheimer's disease begins many years before dementia," Dr. Reisa Sperling.
DUUUUUH. I wonder how many years she went to school to realize that?
You're an idiot.
You're an idiot. Dr. Sperling is world reknowned and has done incredible things to advance research in AD and other dementias. Get educated Jay
More time in medical school that you completed in your entire "education," clearly.
Well I guess if they had not wasted 1 trillion on bailouts, 1 trillion, on a health care fix that fixed nothing except raised the cost of health care and oh yea 1 trillion wasted on a stimulus that was a total failure we might of had money for real things like this things that are actually important and affect the lives of so many. But hey now she needs a point to rally the troops so now she is in favor of this. If we as Americans are stupid enough to elect and democrat to office again in the next 100 years we are already suffering from memory loss. Since 2006 when we placed the DEMS in control of congress just look really at what has happened to this country. They blocked the regulation of Fannie May which caused the financial meltdown, In 1996 Clinton deregulated the banks which led to the to big to fail problem, they have spent the country into the edge of economic failure, lost 12 million jobs since 2006. And yet the ignorant still want to blame Bush for everything that the DEMS did. We should be doing the things that matter like creating jobs, working to fix medical insurance coverage without raising cost, protecting our borders, helping the people and not the big insurance companies and banks and business. We give 200 billion to bail out banks and nothing to bail out the American people who lose there credit score because they have not jobs to pay there bills. Business are to big to fail so we can take our money to help them but the American people are to small to care about so we just through them under the bus and let them fiend for themselves. We can take their money but we can not spend it on them. Kind of the same approach we took with health insurance we will take your money but you will have to pay more for the changes we made. What a waist of time and potential we could have done something about this disease and so much more if we had competent leadership.
Do we really need to hijack every single thread to make it all about "Party X is evil and Party Y will save the world"? It's really tiring, and overall rather childish.
One year of Bush's Iraq war could have funded Obama's entire healthcare plan for 10 years.
Thank you for posting that, Voice. It needed to be said.
Actually, moron, Bush's war in Iraq, and his crashing of the economy, is the cause of the current deficits.
Also, you useless piece of garbage, Alzheimer's research in particular has been set back years by Bush's stem cell research ban.
Do us all a favor and kill yourself now.
Also, you useless piece of garbage, the bank bailouts were done by the Bush administration. So go screw your sister some more, you ignorant hillbilly, and leave the rest of us alone.
Hey Wade, I'm an Alzheimer's researcher. The money went out of basic research exactly 1 year after Bush started. I remember him saying that science wasn't important and that that's why funding was being cut. The cuts were the deepest in decades - during a time of plenty!! The wars and his conservative religious stance of "science is stupid" drained funding from the National Institutes of Health and many other funding organizations. I have watched many colleagues pack up and leave this country and many grad students struggle with basic expenses just to get a research degree. Under this new administration the funding has increased, but has a long way to go. If not for private funding from groups like the Alzheimer's Association over the last 8 years, research in this country would be all but dried up by now. Get your facts straight.
this is NOT a platform for you to share your warped opinions. you obviously have not been directly affected by someone with alzheimers or you would not have used this opportunity to vent your opinions on the democratic party!! take it somewhere else.
I truely believe in early detection. But with the way that medicine is run today and all the cut backs I am sure that insurance is not going to pick up these "new evaluations". We are so "over tested" just to cover the butts of the physican from lawsuits that it is causing a crisis. How are you ever going to get an alzheimers testing without defined symptoms.
My mother died from dementia and I worry about myself as I get older and more forgetful. It would be a blessing for me to know, very early in the disease, so that I can make arrangements for my future. Other people may not want that information hanging over their future, but I would find peace knowing my outcome.
Only morons would bring politics into this thread.
Even worse, these political extremists think they are 100% correct about everything.
voiceontheleft - You said it all. My mother died in 2007 from this disease, and her mother had it and so did her sisters and brothers.
Myself, I don't want to know until they have a cure. No early testing for me.
These "diagnoses" are self-fulfilling prophecies as teams of doctors and relatives murmur about and gang up on helpless elderly people and lead them through their own belief in the patient's illness down the road to incarceration (nursing home) and murder (hospice). Your own belief in someone else's illness affects the way you treat them and then you start talking baby talk and doing weird things with them, so they get confused. It's the doctors and relatives murmuring about and ganging up on helpless people that cause a lot of this type of thing.
If that were the case, the religious "faith healers" should be able to cure Alzheimer's because the power of suggestion would reverse it.
My "suggestion" is that it only exists in the perceptions of those watching and looking for the signs. It should have never been given a name in the first place, like all other so-called "diseases of the mind," they exist in the perceptions and reactions of those surrounding the patient, and the way that the doctors and relatives treat and react to the "patient" exacerbates and aggravates the "patient's" mistrust of their own reasoning and cognitive faculties, a true "self-fulfilling prophecy." Read Thomas Szasz and the like. The "diseases of the mind" are INFLICTED by DIAGNOSIS first, and then the "process" that ensues is more of a sociological phenomenon than any biochemical changes in the mind of the patient, although, psychically, the perceptions and projections of those OBSERVING the patient CAUSE the patient to doubt his or her own reasoning and cognitive faculties, these "diseases" are sociological and cultural phenomena, and a way to send elders out on the proverbial Eskimo's "ice floe" to go to their death against their will. The effort spent to convince the patient of his/her own faulty cognitive faculties is the CAUSE of mental illnesses in the most part.
What you are describing is called "gas-lighting", a psychological technique applied to a victim by several people to make the person doubt his or her own sanity, for the purpose of getting them to submit to suggestions they aren't able to manage their life. The purpose of this is to gain control or get something from the person. Even if the gas-lighting effect is not done intentionally, but is done to the victim by well-meaning people, the mental effect doesn't make physical disease changes to the victim's brain.
There is plenty of physical evidence that brain damage occurs during the course of Alzheimer's disease. So Alzheimer's is not in the mind of the victim any more than an actual broken leg would be.
Sorry about that. I'm just speaking from experience. I admit that I am powerless over my addiction to pre-conceived unscientific judgments and am unable to manage my life. Hi, my name is Doofus Y., and I'm an alcoholic. I confess that I am a sinner, and that Jesus Christ came to earth to die for my sins. I will submit to the process. HA. Thanks for the word clue "gas-lighting" though, that's my personal experience.
Suggestions cannot cause the cellular and molecular damage to a brain that Alzheimer's causes. If this were true then how do you explain the animal models of the disease? Are lab mice susceptible to suggestion too? What about cells in petri dishes? Do they feel ashamed at the continued siggestion that they have a disease?
If you only had the slightest clue as to what you are talking about. I am glad in your world there are no diseases and everything is peaches and cream.
I too have lost a parent and am in the process of losing another. I actually do this for a living- both treating patients clinically and conducting research trials. It has taken years to gain the knowledge that we now have. In response to Jay- get yourself eduated. DUHHHH. Dr. Sperling has done tremendous work in advancing our knowledge, and what may seem obvious to some now, was only a hypothesis in a brilliant scientists mind a few years ago. Although the drugs we have now are hardly earth shaking, they at least help slow the process and add quality of life time to our patients and families. Anyone with a first degree relative with this disease is at higher risk, it is not assumed you will get this disease, and to date there is no "test" to determine who will or won't develop the disease. That is a big push right now in the field. My suggestion is to have all your health care and legal ducks in a row either way. Health care proxy, living will, an estate attorney.
Aren't we already over-diagnosing most diseases of old age? BTW, I am 68, so this is an issue that comes home to me. Preventive medicine has not been a great success.
Three generations of my father's family have had what we now assumb is Alzheimers. If there is a test that could diagnois this horrible desease in time to actually do something about preventing it, I want it. I'll be talking with my doctor about this ASAP!!!
This is outrageous....there are going to be so many false positives and people's lives ruined at end of life that it is almost evil...why don't they come up w/ the proposed test first, find out how an acceptable diagnosis rate and then spring it on people? This is nowhere near ready for prime time nor is the tests and criteria that they are applying. Would they suggest diagnosing terminal cancer this way? I wouldn't let them diagnose my dog this way. Shame on them.....
Hooray for you and people who think like you about this kind of thing. I've been a victim of multiple "diagnoses" which were basically forms of harassment and judgment of my character. I fight all these medical deities all the time both of the APA's and the AMA, those who give death and incarceration sentences without a jury trial.
The tests are fairly specific. We're not talking about subjective results or symptoms that could be applied to any disease. The changes that occur in Alzheimer's are one of a kind. You have them or you don't. I don't think false positives are going to be a problem for these tests. And if you want to stop the disease before you lose yourself, you have to have early diagnosis and early intervention. That's not how the doctors make it - that's just how it is.
Usual aren't you the guy who said that Alzheimer's only exists because doctors convince people they have it. Didn't you say that the physical disease of neurodegeneration doesn't exist except for those who have been somehow hypnotized by suggestion or something like that? I'm not sure you're qualified to make a judgement here.