Wednesday, January 27, 2010

Name Recognition if Alzheimer's

In 1979 when my mother was diagnosed, I was seventeen years old and I had never heard of the disease. As it turns out most other people had not either. Ronald Regan brought attention to it, the Alzheimer's association took off a couple years later, and within ten years a lot more Americans knew of the disorder. Nowadays it is a household term. We see advertisements on the nightly news for meds to treat Alzheimer's.
A strange irony occurred to me. The word Alzheimer's is a scary word almost taboo to say it. It is like the word "Cancer". Some families are superstitious and don't even want to mention the word, as if it were a death sentence. We have many available and successful treatments available for cancer now, depending on what type of cancer we are talking about, but it was not that way 25 years ago. We were afraid to mention the word.
so the pendulum has swung the other way now, we all have heard of Alzheimer's, yes it is true there is not a cure yet, and yes it is true the treatments are limited. We all know about it but we should not be afraid to mention the word. It is a terrible devastating fatal illness, but by not talking about it, we tend to somehow sociologically shun the victims and their families. By not talking about it, we are not somehow magically preventing it. Dementia is a safer word apparently than Alzheimer's.
The word Alzheimer's is now a lightning rod of fear and misconception.
It is probably not unlike the term leprosy or tuberculosis once was. Its time to get over that, until we do, the politicians are going to vote to underfund it, and look the other way and hope for the best.
I like to think or wish it is not that bad, my views can be skewed if I talk to caregivers and people and families affected by the illness.... they know firsthand and do not carry the biases. So is it safe to assume that society does not carry bias, and misconceptions and insensitivity toward the disease? I am just not so sure about everybody else. all the millions not affected. Look the other way, sweep it under the rug, don't ever say the word, God forbid you might get it, worse yet what if you catch it.

N.B. You can't catch it and not talking about it does not prevent it.
common sense intuitive concepts, but do we really behave as a society like we truly believe this??

Monday, January 25, 2010

Kindle, nook, iSlate

What are books coming to? Electronic tablets. A far cry from the stone tablets that back a long time ago, seemed to probably dominate the written means of communication.
Unlike other animals we seem to have an edge on not just opposable thumbs but on communication. Very developed I'm sure.
Can anyone under thirty remember much about existence before cell phones?
And so it goes. Will the printing press ie. words on paper go the way of the LP and cassette tape and vcr tape?
A most interesting question is: What will happen to our attention spans?
Everything is so on demand now. We are more plugged in and connected than ever. We don't have to interface with people live and in person and face to face so much anymore. Texting is easier. Email is easier. skype, video conferencing, twitter, snippets of info. Multi-tasking.
Hey I think I got adult ADD. Is it a culture bound syndrome?
So is the average nook or kindle buyer really going to download, War and Peace, or Don Quixote? My God you actually have to sit still and concentrate. How boring and un-novelle. That is so not on demand.
Wouldn't it be easier to just peruse 10 new books rather than reading one?
I hope the kindle and iSlate and nook actually ease our growing illiteracy rate. I mean why wouldn't they. And they are so much greener. Right?

Saturday, January 23, 2010

Lousy time of year

Well, it is the middle of summer in New Zealand, except I am in Duluth, MN. It is sort of a lousy time of year. Next week Jan 28, it will be 32 years since my father died and then my mother's birthday as well as anniversary of her death are in early March.
Thanks to my buddy, gem of a human being that he is Joe P, down in sunny, I guess rainy California, for posting a picture of her. I found another blog through him Mary over on Lake Ontario, who is also living with Alzheimer's.
Awesome people.
Actually today I realized it is 27 years since my grandmother, my mother's mother, my "Nana" died. It just never ends this time of year.
She lived to be 86, no Alzheimer's, sadly she saw her only daughter, my mother, get the disease. It is not really supposed to happen that way, is it?

Thursday, January 21, 2010


One of the interesting things about modern psychiatry, is the number of conditions of which there is no approved medicine by the Federal Government's agency the FDA. Take for example dysthymia or cyclothymia or bipolar II. Hmm no FDA approved med, so there are no medications available as sanctioned by the government after careful review of drug company literature- 2 placebo controlled studies that show a drug is statistically significant over placebo, and who knows whatever else, and the government will approve the medicine. Doctors often prescribe "off label", meaning taking a medicaiton for example that is apporved to treat major depression and use it to treat dysthymia or minor depression. Research shows in can be helpful and any decent clinician knows it, but it is still off label.
You don't send a patient away that is suffering and tell them to come back when they fit a diagnosis of which the government has signed off on an FDA approved med. You try to actually help the patient and allenivate pain and suffering.
SECRET NUMBER ONE: A med can be helpful for a condition and never get approval because a drug company has to spend a lot of money on research to get the government to sign off.-It might be effective but not effective enough. Or there is good data, but the federal government for some reason or another may recognize one drug companies data over another's, but that has been going on a long time
Not a big secret but something that affects clinicians daily practices all day, and certainly sets up more mistrust and suspiciousness of treatment.
SECRET NUMBER TWO-the NOCEBO affect- a med at a small dose of little or no biological significance, make a person worse or have terrible side effects that would not otherwise be accounted for or expected, based on any physiological or biologial cause. usually from a homeopathic dose.
SECRET NUMBER TWO B- the doctor is not interested in hurting a patient or making a patient worse- when they treat a patient they are not experimenting or treating a patient like a guinea pig, its amazing how many patients in psychiatry have had that experience.
Bottom line is the nocebo effect is way bigger than the placebo affect. in areas like psychiatry.
The placebo affect is probably over-rated and there is probably more biological basis and psychological basis for the affect than science knows.
In other words, if you think you are getting better, you probably are and there is probably more biological basis for it.

Tuesday, January 19, 2010

Resolve to Keep your Mind Sharp in 2010

Resolve to Keep your Mind Sharp in 2010

Posted using ShareThis

Now Just a couple observations....remember what an apple a day keep the.....
Now that saying has been around for a long long time.
Interestingly if you read the article, in the rodent studies it appears something in the apples raises neurotransmitter levels, like acetylcholine, thats exactly what most of the FDA approved meds for Alzheimer's do. Interesting, but I suppose apples have a lot less side effects.
Another question I have is that the 20 or so Alzheimer's victims in the study did better when they were given apple juice daily. Do you think the researcher assistants just plunked the apple juice down in front of the AD victim and told them to drink it? Or do you think they actually took the human compassionate time, visited the person daily and were actually kind and decent to them in giving them some attention? Human decency is never considered a confounding variable in research, but I have a sneaking suspicion they were treated with attentive dignity and compassion. Could that play a part even a little in improving a persons cognition and psychotic symptoms?..........I'm just saying is it possible?

Saturday, January 9, 2010

The Media-Research-Alzheimer's Breakthroughs

Did you ever notice how many treatments and cures there are for Alzheimer's.
Cell phones, video games, vitamins, statins, anti-inflamatories, high fat diets, low fat diets, all kinds of diets, lots of coffee, no coffee, more exercise, think healthy thoughts, sudoku's etc etc and on and on, we cling to each new breakthrough, and possible cure, but we never really look at the process. It is almost like finding the missing pearl in the shell.
We accuse the drug companies of holding out. Not enough money for reaearch, not enough dedicated to research. The pearl must be sop basic and so obvious, it must be right under our noses. Probably not.
Emerge the media. On a slow news day- big reporting,
"A NEW ALZHEIMER'S BREAKTHROUGH" and so it goes, and caregivers and victims get their hopes up. They are little pieces of the puzzle. It is an emotional roller coaster for the caregiver, who cling to every media report, only to be let down. If the cure was cell phones, or a vitamin, wouldn't that really have caught on by now?
I wish the media outlets would do an expose on what the media process does to people, and maybe we need a summation of all the little breakthroughs, the tiny pieces of the huge Alzheimer's puzzle we have filled on so far.-
Except that would not make good news. It would not be sensational for people. Not like "THE" BREAKTHROUGH. We are constantly hit with promises of a clear and completed puzzle. As family members we cling to any hope. It is human and it helps those suffering with the disease and their family members.
We are more quick fix, and need instantaneous gratification more than ever, I wish the answer was truly as simple as the constant claims make it out to be. I guess it makes news and gives people something to talk about. It does raise awareness. I keep thinking their must be something more than raising awareness, and reporting on the latest, previously missed, yet so obvious breakthrough. Something just is not right about the whole picture.

Talking about the book with the Lake Superior wind....... a calm day