So it appears the thrust of research at the recent consortium is to take all the research that has gone on at various facilities and share and combine and put something together meaningful. The criteria for diagnosing and staging Alzheimer's and mild cognitive impairment is being reevaluated for the first time in years. When you think about it, this is crucial. There has been a certain way of diagnosing the disease definitely by looking at microscopic tissue under a microscope. That has not changed and we still can't do that on live human beings. However if there was a way to predict or even diagnose the disease much earlier, even before it starts to clinically show itself and manifest, this may have clinical implications for treatment, as well as prevention. Seemingly the earlier you can intervene or even prevent the better.
Hence emerges the concept of biomarkers. This is not a new phenomenon. The biomarkers we are talking about are more than testing for the genes that definitely predict who will get the disease.
The well known presenilin and APOE genes. The hereditary links are somewhat better understood, however the overall genetics are still not clear. There are very rare instances where there is a direct hereditary link, which account for a small number of AD cases, relative to all the cases.
But what about the vast majority of AD. Emerge biomarkers.
There are a couple that can be evaluated looking at CSF. CSF is cerebrospinal fluid. This is the fluid that baths the brain it runs down throughout the spinal cord. It is in the ventricles of the brain, Everyone has it.
Most people have heard of an LP or lumbar puncture or spinal tap.
A spinal tap is most commonly known as a diagnostic intervention for example when it is suspected that a person has meningitis. That is an inflamation of the tissues covering the brain and spinal cord. The CSF is sort of a purified version of fluid sort of like plasma but different. Sometimes you get an infection in there and you can look at the fluid , sort of like a blood test. You get the fluid through a needle in a spinal tap. Now meningitis or infection like that has nothing to do with AD. however you can do this spinal tap and look at fluid and analyze it, like a blood test.
It does appear people with Alzheimer;s have some proteins and chemicals in the spinal fluid which would be changed and possibly a good marker for AD. Hence the biomarkers. It is possible some of these protein fragments are related to the Amyloid the develops in the brain of AD patients. now it may also be possible that these molecules that are too high or low in the CSF, indicative of AD, show up maybe much earlier than the cognitive and behavioral changes of AD. Not really totally clearly understood, but getting there.
Hence the consideration of new diagnostic criteria, and maybe someday the analysis of these biomarkers being used not in research but in everyday clinical practice.
Getting somebody to pay for this testing on an everyday basis is another story. Remember, since AD is fatal and it affects mostly older adults it is not a politically or economically popular thing to fund.
If some of this testing ever becomes more mainstream, it will be new cutting edge and therefore expensive. sort of like when a new electronic computer or phone type thing comes out.
but it is crucial because I think the research is on to something, we really have been trying to understand and treat or prevent it, once it is so full blown and that is probably way to late.
The research is fragmented, it does need to come together and share ideas, I still think it is misguided and stupid to have meetings in such elaborate places as Hawaii, but we somehow have to bring people together. The greatest minds working on this stuff. Remember in research, there is a ton of collaboration and collegiality. There is also a ton of competition. People fighting for grant money, for recognition, for the first to be published on something. Research has always been that way. It is just human beings. The motivations between altruism and notoriety get sometimes blurred. Again something very real but taboo to discuss.
Some key thinking and thinkers coming together happened.
With the asinine health care climate in the everyday world, I hope and pray some of the forward thinker of the greatest research minds will trickle down to everyday mainstream clinical practice, and suffering families, who really don't give a damn about who gets published first, or the terrbile health care climate, they just want hope and treatments, preventions and cures.
Sunday, July 25, 2010
Tuesday, July 20, 2010
Monday, July 19, 2010
Book Signing-Florida
The book signing in June in Florida went well. I did a talk about Alzheimer's and the book and my perspectives as a caregiver at age 17 to my mother as well as a couple readings. There were some wonderful questions, and I have to say the issues and struggles people are dealing with for their loved ones have not changed in 30 years, since I went through it.
I want to thank the staff at Lake City, Orlando, and Ft. Lauderdale public libraries for hosting these events. They were gracious hosts, the presentations free of charge and were just for anyone interested in AD. Most people as you know are not interested in hearing about the disease till it touches them.
People are looking for answers, validation, reassurance, and new meaningful information. Very caring family members, good folks, regular human beings just trying to do the best they can in the face of this devastating disease. There are so many unique and touching stories out there in families, about a human being their loved one. Their loved ones are so special, the pain and suffering is so humanly universal.
Here's some photos from the events.
I want to thank the staff at Lake City, Orlando, and Ft. Lauderdale public libraries for hosting these events. They were gracious hosts, the presentations free of charge and were just for anyone interested in AD. Most people as you know are not interested in hearing about the disease till it touches them.
People are looking for answers, validation, reassurance, and new meaningful information. Very caring family members, good folks, regular human beings just trying to do the best they can in the face of this devastating disease. There are so many unique and touching stories out there in families, about a human being their loved one. Their loved ones are so special, the pain and suffering is so humanly universal.
Here's some photos from the events.
If you want to pick up the book, heres a bunch of links where you can get it. you can also ask your local library to order it, or your local book store.
You can get it online at the Publisher- Niagara Press
Or Amazon
Or Barnes and Noble
Saturday, July 17, 2010
ICAD- huge meeting in Honolulu this past week
Well the Alzheimer's Association held its international conference this past week in Hawaii. A beautiful place for a conference I might add. Some from the NIA was there and if you were a member of ISTAART you got a savings off the price of the conference. If you went and actually had to pay for yourself the conference alone would have cost about $800 dollars. I'm not sure about everyone else but if you had to pay for your own flight, that for example would set me back about another $900. Throw in another $800 or so for room at the Official housing of either the Hilton Hawaiian Village Beech Resort and Spa or the Sheraton Waikiki. well you get the picture if you paid for yourself to go $2500-$3000. Hopefully if you went your institution, public or private paid for you. There are also plenty of grants and rates I'm sure. It was attended by thousands. My God where does all this money come from? For some perspective, a year of Aricept, (I know it only helps a little for some and we need better meds) costs about $2000 a year. now the average cost of a home health nurses aid, that is someone to help give the family member primary caregiver a break is about $21 an hour. so at three hours a day, five days a week, that would be about $2400 for two months of home care at three hours daily.
Now from the preliminary info at least reported by Netscape, there were lots of expert work-groups. I am sorry to say that there was no cure, new actual meaningful treatment, or a 100% definitive way to diagnose the disease that was brought forth. Believe me if there was, you would be the first to know. There were lots of interesting things, a revision of our understanding of MCI, and our conceptualization of Alzheimer's, probable Alzheimer's and various other things, I will tell you about in days to come. But in the end, lots of excitement, and chatter and idea exchanging and of course networking. If you are a caregiver, nothing that is going to change you life and least in the near or intermediate future.As a physician, from what I can see, nothing truly new, lots of classification of things that will trickle down to the clinical world over the months and years, but again nothing to practical for the day to day caregiver. New data on vitamin D and anti-oxidents, (remember when the experts met a few months ago and said there was nothing new in this realm, well maybe there is.
an exciting motorcycle Rally coming up in which researchers with Harley's, (I'm assuming they are Harley's, hmmm I don't have one but I think those set you back about 40-50K) will be riding across the country to raise awareness for research and get signatures for a petition to congress to get the ball rolling on research. It sounds fun and worthy, if I could go, I couldn't anyway, cause all I have is a car. I'm am sure you will be hearing more about this motorcycle ride It starts today in San Frnacisco and culminates on the steps of congress and National Alzheimer's Awareness Day in September, where the signatures will be presented. If you are fortunate enough to have a Harley and be one of the 65 riders, well it sounds like fun.
In all fairness I did not attend the conference, I can only report and translate to you the reports I read. You will find hundreds of twitters about all this over the months, national media stories, false hopes on new breakthroughs (not there yet), and plenty of publications in the scientific journals going on lots of CV's. I think if I had attended, the honest to God truth is it would have been hard for me to stay in the conference all day and learn something. I mean come on Hawaii for God's sake? That is like the most beautiful perfect weather place in the world. I'll keep you posted in future posts on all the conference proceedings I read.
I know it seems like a disconnect, you are all doing the best you can in the day to day grind, caring for your loved ones, or visiting them in the Nursing Home. Some days it is awful and you hate it, and you ask why. take breaks, I know it is emotionally devastating, as well as financially for many of you. Hang in there.
Next years meeting is in Paris by the Way. (THE Paris you know- Eiffel tower and stuff).
Addendum- (I think rooms and Airfare to Newark are cheaper and they got plenty of space for meetings for thousands of people, same with Omaha by the way.)
Now from the preliminary info at least reported by Netscape, there were lots of expert work-groups. I am sorry to say that there was no cure, new actual meaningful treatment, or a 100% definitive way to diagnose the disease that was brought forth. Believe me if there was, you would be the first to know. There were lots of interesting things, a revision of our understanding of MCI, and our conceptualization of Alzheimer's, probable Alzheimer's and various other things, I will tell you about in days to come. But in the end, lots of excitement, and chatter and idea exchanging and of course networking. If you are a caregiver, nothing that is going to change you life and least in the near or intermediate future.As a physician, from what I can see, nothing truly new, lots of classification of things that will trickle down to the clinical world over the months and years, but again nothing to practical for the day to day caregiver. New data on vitamin D and anti-oxidents, (remember when the experts met a few months ago and said there was nothing new in this realm, well maybe there is.
an exciting motorcycle Rally coming up in which researchers with Harley's, (I'm assuming they are Harley's, hmmm I don't have one but I think those set you back about 40-50K) will be riding across the country to raise awareness for research and get signatures for a petition to congress to get the ball rolling on research. It sounds fun and worthy, if I could go, I couldn't anyway, cause all I have is a car. I'm am sure you will be hearing more about this motorcycle ride It starts today in San Frnacisco and culminates on the steps of congress and National Alzheimer's Awareness Day in September, where the signatures will be presented. If you are fortunate enough to have a Harley and be one of the 65 riders, well it sounds like fun.
In all fairness I did not attend the conference, I can only report and translate to you the reports I read. You will find hundreds of twitters about all this over the months, national media stories, false hopes on new breakthroughs (not there yet), and plenty of publications in the scientific journals going on lots of CV's. I think if I had attended, the honest to God truth is it would have been hard for me to stay in the conference all day and learn something. I mean come on Hawaii for God's sake? That is like the most beautiful perfect weather place in the world. I'll keep you posted in future posts on all the conference proceedings I read.
I know it seems like a disconnect, you are all doing the best you can in the day to day grind, caring for your loved ones, or visiting them in the Nursing Home. Some days it is awful and you hate it, and you ask why. take breaks, I know it is emotionally devastating, as well as financially for many of you. Hang in there.
Next years meeting is in Paris by the Way. (THE Paris you know- Eiffel tower and stuff).
Addendum- (I think rooms and Airfare to Newark are cheaper and they got plenty of space for meetings for thousands of people, same with Omaha by the way.)
Friday, July 9, 2010
All kinds of caregivers- a very thankless job, and Health Care Reform Digressions
So much of this blog is about the caregiver, that is the family member, caring for a loved one with AD. I try to cover some of the plight of those in this blog, having been one myself at a very unproven age. I also spend a lot of time trying to cover the plight of the physician, having been one myself for all my adult life. Lets face it the odds of building any empathy for the doctor, are about nil, it can't be done, and lets face it with our wonderful sweeping health care reform the odds of seeing the doctor in any sort of possible non0negative light will be even less. I mean come on, as the oil gushes out after months, as we all dip into our 401ks a little more, if anyone has anything left in them, has not your health care and access already dramatically improved??? Digression.
Lets face it, After all the banks merge, all the airlines merge, We can have a state run bank, a state run airline and maybe if we are lucky a couple huge health care "private"corporations, heavily vying for that big old capitated national government contract, low-bidding each other every year. Think about it, that's where it is going. -Digression
So what about all those other caregivers, the RN's, the LPNs, the CNA's, the home health agencies. the MSW's, the speech pathologists, the BSW's, the PT's the OT's. I mean my God they work with an awful lot of dementia patients don't they? We forget they tend to get a little emotionally beat up by families of dementia patient"sometimes, they get attached to some patients, they thrive and love it when their AD patient has a "window" or a good day just like the family members.
Families often get mad or short tempered with all of these other caregivers, trying to do the best they can. Why is that? They don't have the history. They don't know Mom or Dad, like the family. How could they possibly know? Sometimes it breeds indignity, or anger. Its the nature of the disease.
Most go into the helping professions, to help people. We go into it, wide eyed and idealistic. Little secret, most people doing it a few years that give their all, really want to get out of the game. Most don't admit it to themselves, but administration, looks pretty damn good after a few years. Working hard in this field giving your all, sort of robs you of part of your soul, it takes its toll to be a caregiver. Especially the ones who care.
Think about it less people want to take care of patients in this day and age. The pay sucks relative to the time and effort you put in and the things you give up. Less people going into primary care, the numbers going into psychiatry, is like a joke it is so minuscule, relative to the need. Many people going into nursing, don't want to take care of patients, the thought of getting dressed up and walking around a big old health care facility with beautiful atriums, carrying a clipboard, and going to important committee meetings all day is much more appealing, than say getting slugged by a patient with dementia while trying to give them a bath.
Yep for the true caregivers it is often a thankless job. But most of them do care. A lot.
Lets face it, After all the banks merge, all the airlines merge, We can have a state run bank, a state run airline and maybe if we are lucky a couple huge health care "private"corporations, heavily vying for that big old capitated national government contract, low-bidding each other every year. Think about it, that's where it is going. -Digression
So what about all those other caregivers, the RN's, the LPNs, the CNA's, the home health agencies. the MSW's, the speech pathologists, the BSW's, the PT's the OT's. I mean my God they work with an awful lot of dementia patients don't they? We forget they tend to get a little emotionally beat up by families of dementia patient"sometimes, they get attached to some patients, they thrive and love it when their AD patient has a "window" or a good day just like the family members.
Families often get mad or short tempered with all of these other caregivers, trying to do the best they can. Why is that? They don't have the history. They don't know Mom or Dad, like the family. How could they possibly know? Sometimes it breeds indignity, or anger. Its the nature of the disease.
Most go into the helping professions, to help people. We go into it, wide eyed and idealistic. Little secret, most people doing it a few years that give their all, really want to get out of the game. Most don't admit it to themselves, but administration, looks pretty damn good after a few years. Working hard in this field giving your all, sort of robs you of part of your soul, it takes its toll to be a caregiver. Especially the ones who care.
Think about it less people want to take care of patients in this day and age. The pay sucks relative to the time and effort you put in and the things you give up. Less people going into primary care, the numbers going into psychiatry, is like a joke it is so minuscule, relative to the need. Many people going into nursing, don't want to take care of patients, the thought of getting dressed up and walking around a big old health care facility with beautiful atriums, carrying a clipboard, and going to important committee meetings all day is much more appealing, than say getting slugged by a patient with dementia while trying to give them a bath.
Yep for the true caregivers it is often a thankless job. But most of them do care. A lot.
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