Gene for Alzheimers?

[valerie]

http://www.usatoday.com/tech/science/ge ... gene_x.htm

[Lulu2]

Thinking about the news this morning...if it came down to limited time/funding--which shall we do? I'd much rather see this one funded than the uterine transplant, for example.

This disease will affect millions in a tragic death which doesn't just "happen" to the individual, but which places a horrible burden on the family, too. I know a formerly brilliant man who now defecates in corners of public rooms and thinks he's been asked to join the space program! Amusing? On paper, perhaps, but his family is devastated. Luckily, they have resources to get good care for him.

If they can find/isolate responsible genes, it might help prevent millions more cases like Mr. Weinberger's.

[CARLA]

You are correct LULU Alzheimer's is going to effect many of us in about 10 years, if not sooner. It is a sad disease that a cure needs to be found for. The cost for caring for a Alzheimer's family member is off the chart, and getting worse. We must move now and quick...

[QUOTE]Thinking about the news this morning...if it came down to limited time/funding--which shall we do? I'd much rather see this one funded than the uterine transplant, for example.

This disease will affect millions in a tragic death which doesn't just "happen" to the individual, but which places a horrible burden on the family, too. I know a formerly brilliant man who now defecates in corners of public rooms and thinks he's been asked to join the space program! Amusing? On paper, perhaps, but his family is devastated. Luckily, they have resources to get good care for him.

If they can find/isolate responsible genes, it might help prevent millions more cases like Mr. Weinberger's.[/QUOTE]

[Peg]

CARLA;517841 wrote: You are correct LULU Alzheimer's is going to effect many of us in about 10 years, if not sooner. It is a sad disease that a cure needs to be found for. The cost for caring for a Alzheimer's family member is off the chart, and getting worse. We must move now and quick...


Little did I know when I first read this, that 4 months later I'd be devastated by this dreadful disease. I've cried a million tears these last few days. I'm angry with the disease, I'm angry that modern science, while making progress, has not found a cure and probably would never admit to a cure. How horrible for my mother to know she has this disease, have enough presence of mind left to KNOW her thinking is not right, and how helpless she feels and the rest of us too that we cannot do a damn thing to stop it. It has progressed to the point that she can no longer safely live alone. She was taking all her medications all wrong here recently which we just found out. Once meticulous at keeping her checkbook, she hasn't a clue what her balance is. She loves to take walks but we fear she will end up lost and confused. The guilt is horrible for my sisters and I that none of us our in the position to give her 24 hour care. I am horribly afraid that I will some day be battling this disease myself. I don't know how I'm going to cope, just that I know I have to. I guess what I'm hoping for here is someone to tell me, how do you deal with this disease?

[chocoholic]

Peg;614770 wrote: Little did I know when I first read this, that 4 months later I'd be devastated by this dreadful disease. I've cried a million tears these last few days. I'm angry with the disease, I'm angry that modern science, while making progress, has not found a cure and probably would never admit to a cure. How horrible for my mother to know she has this disease, have enough presence of mind left to KNOW her thinking is not right, and how helpless she feels and the rest of us too that we cannot do a damn thing to stop it. It has progressed to the point that she can no longer safely live alone. She was taking all her medications all wrong here recently which we just found out. Once meticulous at keeping her checkbook, she hasn't a clue what her balance is. She loves to take walks but we fear she will end up lost and confused. The guilt is horrible for my sisters and I that none of us our in the position to give her 24 hour care. I am horribly afraid that I will some day be battling this disease myself. I don't know how I'm going to cope, just that I know I have to. I guess what I'm hoping for here is someone to tell me, how do you deal with this disease?


Peg, my heart goes out to you. I lost my Dad to this horrible disease back in 1996. Looking back we can see now that he was showing symptoms about 8 years before he died but he was only diagnosed approx. 6 years before his death.

Mum and I nursed him at home for over four and a half years but it puts a terrible strain on you, in the end the stress of the situation resulted in my Mum getting breast cancer and for the last 18months of his life Dad was in a nursing home.

Don't feel bad that you cannot give your Mum the 24hour care that she needs, I can speak from experience and tell you that you can't imagine what it will be like trying to care for her, it will be 2 or 3 times worse than the worst case scenario that you can think of. My Dad really couldn't tell night from day and would try and get out of the house at all hours of the day and night. He had no idea of how to dress and once got out of the house at 3 in the morning and walked through the streets in his PJ's and dressing gown, he was on the outskirts of town when I found him and we still have no idea how he got out of the house because we used to lock and chain it up like Fort Knox every night!

Personally I try not to think about what the future may hold, I know that Alzheimers can run in families because I know Dad had 2 uncles who suffered from the disease. I don't want to even consider that this may be waiting for me somewhere in the future. Having seen how my Dad lost all his dignity, intelligence and reason it isn't something I want to think much about.

I take small comfort from the fact that he was very well cared for in his nursing home and we visited him regularly even though at the end he didn't know who we were and lost all his speech, he was still my Dad and I loved him dearly for the person he had been not the person he ended up being.

I wish you and your Mum all the best and I send you and all your family love and hugs and if you ever need to talk don't hesitate to PM me.

[Peg]

As I watch this horrible disease progress rapidly, I've seen something else also. If one nurse out there reads this I want you to remember something. The Alzheimer patient is still a human being. They're family has feelings. Emotions are running high. Think about that when you are doing your job. We had a nurse at the ER tonight that said, when asked when her neck brace could come off, "Once we have the results of her CAT scan, not that it'll do any good to tell her that since she has Alzheimer's". I found that incredibly rude.

[RedGlitter]

Wow. Peg, that is unacceptable. What was she thinking when she said that?!

You do know you can request a different nurse if desired, right? I have done that several times, when nurses were rude or when they made mistakes in their protocol, like giving the wrong IV fluids.

Are you going to mention this to the nurse and let her know how insensitive it was?

[Peg]

Thank God she was moved to a room. She is on the floor my niece works on so that makes me feel better. The insensitive one was an ER nurse. I couldn't say anything because I knew if I did, I'd have ended up punching her in the face. The nurses also said they called her doctor, but he had no clue she was there until my sister called him herself. He was furious with them and I am sure they got more than an ear full.

[RedGlitter]

I'm really sorry you and your family have to go through this stuff on top of all you go through with your loved one. I don't know why medical professionals seem to lose their humanity sometimes but it does happen.

It sounds like you guys have your eyes on her real well so that shouldn't happen again.



:yh_hugs

[CARLA]

Peg if the Doctor doesn't report her you should. She is a professional and her comment and behavior is un-acceptable period. Your her guardian Angle she is so very lucky to have you. :-4

It is ashame that even professionals don't understand Alzheimer's. :-5

[QUOTE]Thank God she was moved to a room. She is on the floor my niece works on so that makes me feel better. The insensitive one was an ER nurse. I couldn't say anything because I knew if I did, I'd have ended up punching her in the face. The nurses also said they called her doctor, but he had no clue she was there until my sister called him herself. He was furious with them and I am sure they got more than an ear full.[/QUOTE]

[valerie]

Peg, most hospitals have "patient advocates" or some such. You should

talk to one and report the nurse and your feelings about it. That is

truly the height of unacceptable behavior. They should want to know

about it to prevent it in future.



>

[spot]

This may be a frightfully silly question, but was what she said accurate?

Since I'm surrounded by experts here I have something else to ask.

I know four related words: senescence, senility, dementia and Alzheimer's disease.

To the best of my knowledge, dementia is the current replacement word for senility, and senility isn't used any longer. Is that bit right?

Senescence is getting old but it has nothing to do with the condition or sharpness of the mind, I think, and Alzheimer's disease is one specific form of dementia in which knotty tangles of cells form in the brain which disrupt their previously normal function and eventually impairs thinking and physical performance.

So, to my point - perhaps one case of dementia in ten is due to Alzheimer's disease. Why has dementia dropped away as the general label for the condition? I'm quite sure most people use the word "Alzheimer's" just to mean dementia and I'm very very puzzled why that's happened.

[Peg]

spot;685149 wrote: This may be a frightfully silly question, but was what she said accurate?

Since I'm surrounded by experts here I have something else to ask.

I know four related words: senescence, senility, dementia and Alzheimer's disease.

To the best of my knowledge, dementia is the current replacement word for senility, and senility isn't used any longer. Is that bit right?

Senescence is getting old but it has nothing to do with the condition or sharpness of the mind, I think, and Alzheimer's disease is one specific form of dementia in which knotty tangles of cells form in the brain which disrupt their previously normal function and eventually impairs thinking and physical performance.

So, to my point - perhaps one case of dementia in ten is due to Alzheimer's disease. Why has dementia dropped away as the general label for the condition? I'm quite sure most people use the word "Alzheimer's" just to mean dementia and I'm very very puzzled why that's happened.


The doctors, more than one, have said it is Alzheimer's. What the nurse said MAY be true, but as family, as a daughter, why not give her the little tidbit of information to process in hopes that it some how sticks to her mind if only for a little while. Whether you label it as dementia or Alzhemer's makes no difference. It's about treating your patient and their families as nothing less than humans with feelings.

[spot]

I express myself, as always, very badly. What I had in mind, when asking, was that there are some types of information which do stick to the mind if only for a little while far more firmly than other types of information once dementia is well established.

I've found that discussing matters personally experienced before the age of thirty has led to coherent conversations of a surprising length in someone who seemed otherwise incapable of retaining an idea for more than ten seconds, and long past the point where either neck brace or forty minutes would make any sense at all. I'm not sure whether thirty is typical, but I do think that the different causes of dementia might give rise to different appearances in the ways in which the mind can express itself.

The mind is no longer supported on an adequate brain. My experience is that it can remain an entire mind with increasing difficulties even as far as the point where it has no expression whatever. Actually getting it onto the rails even for short periods gets harder to accomplish on the part of the visitor. Where the dementia is a result of a stroke that seems sometimes not to be true, entire areas of the mind seem to have permanently vanished when the brain was damaged and all the visitor can do is work around those edges, increasingly aware of where they lie.

How these observations on dementia relate to Alzheimer's disease I'm not sure, I've never met anyone yet who'd started to show any signs of it. I'm quite sure, though, that the OP is mistaken in assuming that eliminating the onset of Alzheimer's disease in the future, by gene therapy or any other therapy, will significantly reduce the burden of dementia on society. As other forms of illness are defered further into old age dementia from other causes will become harder to avoid, that seems a natural corollary. The USA seems to have abandoned its ambition to be the longest-lived nation which it once worked toward, it's down to 42nd place on the world list. It may well be a sensible choice to have made.

[CARLA]

You can obtain huge amount of information at the US National site at http://www.alz.org or http://www.alz.org/san/ which is my local chapters site. I was a Volunteer for 10 year and now have worked their 7 years. There are chapters all across the US if you need support and help.



[QUOTE]Introduction

Alzheimer’s disease is a [QUOTE]brain disorder named for German physician Alois Alzheimer, who first described it in 1906. Scientists have learned a great deal about Alzheimer’s disease in the century since Dr. Alzheimer first drew attention to it. Today we know that Alzheimer’s:

Is a common and serious brain disease. More than 5 million Americans now have Alzheimer’s. Although symptoms can vary widely, the first problem many people notice is forgetfulness severe enough to affect their work, lifelong hobbies or social life.

Gets worse over time. As the disease progresses, other symptoms include confusion, trouble with organizing and expressing thoughts, misplacing things, getting lost in familiar places, and changes in personality and behavior. For more information, see Warning Signs or Stages of Alzheimer’s Disease.



Is the most common form of dementia, a general term for the loss of memory and other intellectual abilities serious enough to interfere with daily life. Vascular dementia, another common type, is caused by reduced blood flow to parts of the brain. In mixed dementia, Alzheimer’s and vascular dementia occur together. For more information about other causes of dementia, please see Related Diseases.



Has no current cure. But treatments for symptoms, combined with the right services and support, can make life better for the millions of Americans living with Alzheimer’s. We’ve learned most of what we know about Alzheimer’s in the last 15 years. There is an accelerating worldwide effort under way to find better ways to treat the disease, delay its onset, or prevent it from developing. Learn more about recent progress in Alzheimer science and research funded by the Alzheimer’s Association in the Research section.

Alzheimer's and the brain

Just like the rest of our bodies, our brains change as we age. Most of us notice some slowed thinking and occasional problems remembering certain things. However, serious memory loss, confusion and other major changes in the way our minds work are not a normal part of aging. They may be a sign that brain cells are failing.

The brain has 100 billion nerve cells (neurons). Each nerve cell communicates with many others to form networks.

Nerve cell networks have special jobs. Some are involved in thinking, learning and remembering. Others help us see, hear and smell. Still others tell our muscles when to move.

To do their work, brain cells operate like tiny factories. They take in supplies, generate energy, construct equipment and get rid of waste. Cells also process and store information. Keeping everything running requires coordination as well as large amounts of fuel and oxygen.

In Alzheimer’s disease, parts of the cell’s factory stop running well. Scientists are not sure exactly where the trouble starts. But just like a real factory, backups and breakdowns in one system cause problems in other areas. As damage spreads, cells lose their ability to do their jobs well. Eventually, they die.

Learn more about Alzheimer's: Brain Tour



The role of plaques and tangles

Two abnormal structures called plaques and tangles are prime suspects in damaging and killing nerve cells. Plaques and tangles were among the abnormalities that Dr. Alois Alzheimer saw in the brain of Auguste D., although he called them different names.

Plaques build up between nerve cells. They contain deposits of a protein fragment called beta-amyloid (BAY-tuh AM-uh-loyd). Tangles are twisted fibers of another protein called tau (rhymes with “wow”).



Tangles form inside dying cells. Though most people develop some plaques and tangles as they age, those with Alzheimer’s tend to develop far more. The plaques and tangles tend to form in a predictable pattern, beginning in areas important in learning and memory and then spreading to other regions.

Scientists are not absolutely sure what role plaques and tangles play in Alzheimer’s disease. Most experts believe they somehow block communication among nerve cells and disrupt activities that cells need to survive.



Early stage and early onset

Early-stage is the early part of Alzheimer’s disease when problems with memory, thinking and concentration may begin to appear in a doctor’s interview or medical tests. Individuals in the early-stage typically need minimal assistance with simple daily routines. At the time of a diagnosis, an individual is not necessarily in the early stage of the disease; he or she may have progressed beyond the early stage.

The term early-onset refers to Alzheimer's that occurs in a person under age 65. Early-onset individuals may be employed or have children still living at home. Issues facing families include ensuring financial security, obtaining benefits and helping children cope with the disease. People who have early-onset dementia may be in any stage of dementia – early, middle or late.

History

At a scientific meeting in November 1906, German physician Alois Alzheimer presented the case of “Frau Auguste D.,” a 51-year-old woman brought to see him in 1901 by her family. Auguste had developed problems with memory, unfounded suspicions that her husband was unfaithful, and difficulty speaking and understanding what was said to her. Her symptoms rapidly grew worse, and within a few years she was bedridden. She died in Spring 1906, of overwhelming infections from bedsores and pneumonia.

Dr. Alzheimer had never before seen anyone like Auguste D., and he gained the family’s permission to perform an autopsy. In Auguste’s brain, he saw dramatic shrinkage, especially of the cortex, the outer layer involved in memory, thinking, judgment and speech. Under the microscope, he also saw widespread fatty deposits in small blood vessels, dead and dying brain cells, and abnormal deposits in and around cells.

The condition entered the medical literature in 1907, when Alzheimer published his observations about Auguste D. In 1910, Emil Kraepelin, a psychiatrist noted for his work in naming and classifying brain disorders, proposed that the disease be named after Alzheimer.



Auguste D.

Dr. Alois Alzheimer



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More information

The Basics of Alzheimer's Disease

(32 pages)

[/QUOTE][/QUOTE]

[valerie]

spot;685220 wrote: I express myself, as always, very badly. I'm quite sure, though, that the OP is mistaken in assuming that eliminating the onset of Alzheimer's disease in the future, by gene therapy or any other therapy, will significantly reduce the burden of dementia on society.


And I'm quite sure that this poster is mistaken in assuming that the OP

assumed anything about the burden reduction by simply posting a link

the OP thought might be of interest to some. Or many, even.

[spot]

My apologies, Val - I was refering entirely to the content of the article, not to your reason for putting the post onto the board.

I have a lot of trouble with the terminology of dementia. I see generalizations like "the most common dementia is Alzheimer's disease" and then "most dementia is Alzheimer's disease" but very few attempts to enumerate the conditions involved. I see statements like that at the World Health Organization http://mednet3.who.int/prioritymeds/rep ... heimer.doc that "There are currently no specific tests that may positively confirm the diagnosis of AD" alongside "The doctors have said it is Alzheimer's" and my trust in the higher reaches of the medical profession plummets accordingly. I think a great deal of what gets written is a paperchase for cash grants and the dazzling upper reaches of corporate wealth. "Alzheimer's" is a sexy lure for grant cash and "dementia" is not, hence the ambiguity in the counting and the diagnostic tests. The actual numbers are genuinely simple to collate through autopsy but believe me they get buried deeper than I can find them.

What I wrote, consequently, is based on personal observation alone. I stand by it, I had hoped it might be helpful.