PTSD, and Alzheimer's Treatments- FDA-on-label or off label, formularies, studies

So what is new with the treatment of Post Traumatic Stress Disorder? Well we still have two government approved meds, one is Paxil (paroxitine) and one is Zoloft (sertraline). It has been over ten years since these were approved and have been indicated by the FDA for the treatment of PTSD. Sometimes they help and sometimes they make things worse. Basically most psychiatric meds out there have been used for somebody somewhere to treat PTSD.
A few basic facts:
Most people associate PTSD with veterans of combat wars. The truth of the matter is in shear numbers there are more civilians with PTSD than veterans. However for those military veterans whom have served in combat there is a much higher percentage of that sub population with PTSD than in the general population. Combat increases the possibility of developing PTSD. Not everyone whom has serves in combat gets PTSD.  The reason there are a larger number of civilians with PTSD is that there are simply more civilians  than those whom have served in the Military, by shear numbers.

The percentage of women with PTSD is higher than men 10% versus 5%. Most traumas being physical and sexual abuse and violence and the same for men as well as combat. Motor vehicle and work accidents are also not unusual sources for the trauma.

Most people that have experienced a psychological trauma (an event involving death or serious injury witnessed and involving certain responses like helplessness and terror) do not develop chronic long term PTSD. However about 30% of people do develop it. (Millions of people).

As far as treatments, remember the FDA does not do drug testing, they simply review what comes across their transom, IE mostly studies submitted by the industry (pharmaceutical). PTSD like Alzheimer's disease, is really hard to treat and no one med emerges as the gold standard. Therefore drug companies don't want to touch it. It is more lucrative to simply refine and develop another  med in say an illness that does already respond well to medications, like good old major depression.
It is hard to get a med that sort of works for some people, some of the time and spend billions on it only to have the FDA say "no-go drug company, it does not work well enough consistently". . The drug companies like to stick with things that they know will work, and the studies will show really good results so that the government will approve it. The  FDA does not say "Hey get more meds for PTSD and Alzheimer's", that is not in their cubicle or jurisdiction to do so, even though we all know we need to develop more and better meds to treat these two catastrophic illnesses.

We have lots of meds used "off-label". Example a patient with PTSD has tried paxil and zoloft and they get worse of they get side effects and can't tolerate the med, you can't really send that patient away for years, till we have a new FDA approved med we can offer. In other words there are lots of studies and data indicating efficacy and positive results on a certain med for say PTSD.
 Researchers like to get published, they like to refute each other, They like to get a name and get famous. Sometimes the drug company funds a study and shows great results and then others say it does not count because the drug company did the study and therefore the way the study was set up was not good science-- since the study  was designed to show the med worked.

Sometimes studies are set up with the hopes of showing a med does not work:

Why would that be? Well if a med is really expensive and a doctor knows it works for certain patients but say he or she works within a health system that has its own pharmacy formulary that only covers certain meds, then it may be too expensive to tpay for that med. So it is not listed  on the formulary. Therefore that doctor won't be able to get that med within that health system for that patient.
Now if you can get a big name, big time, researcher to set up a scientific study to show maybe that type of med is not effective, even though the doctor may have been using that med or combination of meds for years to help patients. Now the doctor can't get it because he wont' be going with the most recent studies and evidence.
It would make the doc look bad if he went against that most recent, vogue, trendy scientific study.
End result is doctor is not allowed to prescribe the med they know is best for their patient.
Remember formularies are negotiated between health care systems and insurance companies and have nothing to do with if a medicine being helpful or not. It is basically economical and not clinical. But if you can get a good study from a big name researcher behind it -to dispute a meds clinical efficacy, it just happens to be 'cooincidently' economically desirable and sweet for the health care system. The slug doctor and the poor patient are caught in their middle and not heard.
Remember also if a doctor is prescribing something "off label" that is for something not indicated by the government, even if they are trying to help their patient and there is a bad outcome, in some jurisdicitons, that doctor is liable and a bad doctor.Yet if the doctor knows there is an 'off-label" treatment that works well in may patients and they withhold it from the patient because the drug company did not push it through the government to get an indication, then it may be unethical for the doctor to withhold that "off-label" treatment if they know it has the potential to provide benefit.

Conversely when a med comes out on the market, that has gotten approval from the FDA for some indication or another, and even been advertised on TV,  the doctor may know in certain patients  or most patients that it does not work as well as the studies and the TV commericals show based on real life clinical experience then what does the doctor do? Direct to consumer advertising makes patient ask for meds by name. It builds instant credibility. If the governement approved it, and the doctor does not pracitce exactly what the govenremnt says, and what the TV commercials say, should you get a new doctor?

Does the Pain of Alzheimer's Ever go Away?

It has been over thirty years since my mother was diagnosed with Alzheimer's. It has been 24 years since she died of the disease. I was seventeen when she was diagnosed, my book talks all about that struggle. But something is happening now around me now and it is very strange and very sad. It stirs a myriad of emotions for me. I was a junior in high school when my mother was diagnosed. There was no Internet, no Alzheimer's Association, no blogs, no Aricept, generally no awareness and no hoopla. We had "hardening of the arteries" and old people were "senile". That was about it. For awhile I had to sort of cover up to my friends, my mother acted weird, sort of crazy. It was most embarrassing and humiliating. It made me really enraged. Now some thirty years later I am getting phone calls from many old friend whom are now going through what I went through when I was 17. All the signs and symptoms of dementia. Nursing homes, sibling power plays. Meds, Aricept, Excelon, somehow now I am the expert having lived through all this so many years ago.
They turn to me for advice. Sadly I don't have the answers in the end. I can tell them all about the meds, all about my experience, but in the end for most of the dilemmas, there is no right answer. Should my mother go into a nursing home? She she keep living at home? Is it safe. What is the difference between dementia and Alzheimer's? For some questions I have very clear and informed answers.
With other dilemmas like the nursing home question I advise there is no correct or perfect answer, you have to try to do the best you can, of course you want to stay in the home as long as you can, but when is it not safe, who decides? Basically you do the best you can and no matter what it is going to hurt and it is going to hurt am lot.  
Two old friend from high school and college had parents die this year, once again in a perverse way I am the expert. Having gone through it when I was a kid, all I can do is listen. It was impossible for many friends to conceive how bad it felt for my father to die in high school or my mother to get Alzheimer's disease.
I wish people could have related to me then, they couldn't.
Now so many years later,, I am hit with a wave of sadness and anguish for them, I know it hurts for them at  50 years old as much as it did for me at 17 years old. I am filled with sorrow and a deep compassion for them, I want to fix it but I can't.  I listen and tell them that is how I was feeling back in high school, so long ago, it is a strange and surreal experience.
Do I feel indignant because none of these friends could really understand me back then like I understand them now? Not really, just a real deep sadness for them. They will go on, but it is never the same, loosing a parent to AD is as bad at 15 as it is at 50 or 70, it is always bad.
Then we can talk about the resilience of the human spirit. Makes us feel better. I like to refer to it as a survival instinct and that's about it. I am convinced that had my father not died when I was sixteen or my mother gotten Alzheimer's disease, I would have been a hell of a lot stronger as an adult and would have had a much easier time of it. And no I am not talking about getting through medical school and all the hateful stereotypical prejudices people have against doctors, I am talking about life. So call it resilience or survival instinct,. Nietzsche was wrong when he said "what does not kill  me makes me stronger", that is total BS. It greats on you and tears at your psychological and spiritual core, we are human beings not robots.
Alzheimer's is isolating and it always hurts, regardless of how long you have lived or how strong you think you are. I tell My Friends I know how they fell, I am so sorry, and I know they will get through it. I relate to their every scenario, every painful situation, and regardless of all the hoopla around Alzheimer's in 2011, the pain of what it is like for my old friends to now live with an Alzheimer's parent has not changed at all in thirty years, it is the same stuff, the same pain, I went through as a kid. It hurts them now as it hurt me then.I am sorry I had to go through it and I am so sorry people still have to go through  it., but you will make it..

BOOK SIGNING IN LONG BEACH: ALZHEIMER'S DISCUSSION and Q&A

I will be in Long Beach, California on Tuesday April 5th for two separate Alzheimer's Discussions and Book Signings for When Can I Go Home? I am pleased to say that the signings will be held at Two Neighborhood Branch Libraries of the very fine and extensive Long Beach Public Library System. 

First is Alamitos Neighborhood Library April 5th from 12-1 PM.

Later that Day at Los Altos Neighborhood Library April 5th from 4-5 PM.

Both Events are Free and open to the Public.

Don't Forget April 10-16 is National Library Week



Is Alzheimer's a mental illness ????

This seems to be such a common question and issue. Everyone wants to know the answer. I have blogged about this in the past, but the question still comes up all the time. If it is not a mental illness does that make it better? If it is a mental illness, well does that somehow make it worse? Does it make AD less real if it is a mental illness.

When my mother developed AD, it was so shocking, so furious, so heart-breaking, I don't remember ever really pondering that question, because I was so overwhelmed, so bewildered, my head was spinning. Being seventeen at the time, it felt like I had a million things on my mind already. The whole process was like a waking dream.

My book "When Can I Go Home?" speaks to that waking dream. It also speaks to the process of me becoming a doctor and a psychiatrist- much of that process happened while she was dying from the disease.
For me a related question is, did I ultimately choose psychiatry as a specialty, because my mother had AD, and she had it long before I was anywhere near going to medical school.

I mean I could have entered and specialty right? God knows my life would have been a lot different if I had. Life would have been a lot less of a financial struggle, I would not have faced so much disdain and prejudice, because of the horrible stigma we place on mental illness. That stigma is why the question of AD being a mental illness is so important and why we place so much emphasis on it.

People with mental illness face it every day. It is parallel in my world. Let me explain what it is like. For so many people there is something uncomfortable, disquieting, "icky" about being a psychiatrist and mental illness in general. When someone learns a person is a physician, it immediately conjures up biases, stereotypes, preconceived notions. People might think you are smart, hard working, or a weasel, that your are no better than them, and all the usual chip-on-the-shoulder things and biases we have about physicians. Some still respect you as a person more than if you were not a physician.

But as soon as you advise your are a psychiatrist, my God, do peoples' expressions change. Many people get that "icky" disquieting feeling. They are also let down in some fashion. The ideal of a physician and all the underpinnings is gone. "Not the same as a real doctor"

Why do we consider the whole concept of mental illness as something subhuman, something more related to morality than a clinical manifestation? In our prejudicial minds the leap between someone having mental illness and their questionable integrity and questionable character is not a leap, but a thin blurred line.

So if you are a good person with good character from a family of good and decent character and someone gets AD, does that mean somewhere along the lines there was a breech of character, someone did something wrong? If it is NOT a mental illness then no intergrity or character issues right? Sort of off the hook. Moreover if it is a mental illness, then on some level would that not mean it is less than real- at least in the sense that if the person tries harder, than maybe it will go away. If we just figure out what that character flaw is.
If you have mental illness you know what it is like to be treated a little bit less than human, to have your character called into question, that prejudice, that bias, that icky feeling and manner other people present to you because you have mental illness. If you don't have mental illness, imagine what it would be like to have to live with that bias. I mean real imagine it for a second.

So AD is not a mental illness or a "functional" illness in this way: You can see it, you can find the amyloid plaques, we are moving closer to being able to test for it- checking spinal fluid, biomarkers. Therefore it is legitimate. It is real. We have tests and we can tangibly SEE it. But here is the problem, this is why we want to know if it a mental illness. We as family members are in the twilight zone. A gray area:

The everyday CLINICAL world lags behind the RESEARCH world, by 10 or 15 years.
Right now you can't routinely see it on a blood test, or a really good MRI or CT, you can see non-specific atrophy of the brain consistent with it, but you can't really definitively see it, unless you look at brain tissue on an autopsy, after the person has died from it. At least in 2010, thats the everyday reality we are all faced with.

Here's how Alzheimer's is a mental illness is 2010. We can't really see it on an x-ray or any blood test that you or I or most Americans may have access to. Nor with the deterioration and reduction of health care delivery, non of us are going to have much access to the evolving sophisticated research anytime soon, the same research that politically helps legitimize Alzheimer's disease.

-Alzheimer's disease affects behavior, actions, thoughts feelings personality, cognition, a persons manner of relatedness to others, all those things we conventionally equate with "MENTAL ILLNESS.



My mother had changes in her personality, and behaviors, sometimes it was odd, sometimes bizarre, sometimes not, but there were changes. Most AD victims do have these at some point.  AD makes your brain deteriorate. You brain regulates behavior, personality, something has to do this and it is the brain. behavior and personality are not random or coincidental happenings.

A neurological disorder is so legitimate, a psychiatric disorder is not legitimized in our society.
The best answer to the question is "Alzheimer's disease is a progressive neurological disorder with overlapping psychiatric symptoms. Alzheimer's disease is a progressive deterioration of the brain. The brain regulates behavior and personality. In our society we have severe bias and prejudice toward mental illness and pass judgment harshly on psychiatric disorders but not neurological disorders."  That's how I would answer that right now. There just is not a perfect yes or no answer. The correct answer is both, the more correct answer is, it does not matter, If you say yes it is a mental illness, you would not be incorrect but it immediately changes our views of the disease, based on our biases. If you say NO it is not a mental illness, we all breath a sigh of relief. We feel a bit better in that disease is legitimate. 


In the end the question does become irrelevant as you or your family member struggles with the diabolical process. It does not really make the process easier to know it is not a mental illness. 


Remember people with mental illness are just people, they have feelings too, hopes, dreams, just like everyone else. People with mental illness can develop Alzheimer's disease, just like people who never had mental illness can also get Alzheimer's. The behavior and personality changes associated with Alzheimer's can be at times crazy, bizarre, strange weird, it is upsetting and disquieting. The person is not doing it on purpose, It is not a sign of character, or something we have done right or wrong in our lives. The same can be said for mental illness.

The health care world incidentally and ironically has some of the strongest and worst biases about mental illness. As a psychiatrist, I face it from other doctors, maybe not as much as from other non-physicians that work in the health care field, but it is there. There are also so many people in the Alzheimer's world- caregivers, health care workers, bureaucrats, that have this bias, it is so Hypocritical, two-faced and not very humane, but it is where we are at as a society. Something we don't like to talk about or admit, Alzheimer's=neurological, mental illness= uncomfortable, "icky".  Let's admit that prejudice and start growing up and working past it.

Until we start getting over ourselves and becoming truly humane towards all disease states, and people suffering from them, including mental illness, you are not going to see much true progress. towards treating the aging population with respect, dignity and honor. After all if it is easy to secretly judge people with mental illness, it is not easy for the fascist, intellectual, politically superior to exploit this?- to  place less value on the aging and the elderly and those with Alzheimer's disease?  Get it? We are talking out of both sides of our mouth when we distinguish Alzheimer's as not a mental illness.  It is easy to exploit that paradox, that is part of the reason why we have not advanced much in our society in our understanding of Alzheimer's, and we ponder the question of AD being a mental illness. It is a vicious circle. Throw in the health care debacle and limited resources, and you are one step away from the E word, euthanasia.
Hence cost savings- euthanasia. free thinking atheist, cool people with certain correct, political views= forward thinking know- it-alls? utilitarian,- grow up.- most people will get old some day, and all that youth driven narcissism won't really matter will it? "How many people under thirty years old, say "well if I ever get like that just shoot me!"
It's all our faults, it's how we are raising up our kids, generation after generation.

Here is an a paradoxical,  optimistic point, I believe the legitimacy of AD will be hammered in stone  (in other words the clinical world will catch up to the research world, and we will have everyday access to the legitimizing tests that unequivocally convince us that AD is a clinical disease) this will happen long before the stigma and prejudice toward mental illness is obsolete.

If I was a policy maker, or if I worked for a nice big non-profit and could lobby for AD all day, I would lobby that the question of Alzheimer's disease being a mental illness is irrelevant. I wouldn't spend all day working to draw that line ion the sand, that distinction for society. It Exacerbates the stigma, to argue the point.

So my mother's Alzheimer's disease was a factor probably in me going into psychiatry, but not THE factor. There was no one main factor. It certainly taught me about empathy, and emotional pain and loneliness, ands societal prejudice, something most psych patients deal with on a day to day basis. (and family members of an Ad victim.)  Yes its true I saw the emotional anguish the disease causes, I lived it. I thought psychiatry was the most humane of all medical specialties, some days I still think that, other days not. After all, a psychiatrist talks to their patients, understands there patients from a human aspect, not a disease aspect, or so most of us thought. That is why most went into it. It seemed to bridge the gap between the art and the science of medicine in so many ways, in ways that nobody cares about much anymore, in ways society places little value on- IE. humanity.  Cost-effectiveness supersedes humanity. that's the reality, throw in some power-drive economics and political correctness and well you have more bias and prejudice but yet we still convince ourselves everything is okay.

More on Medicine and agitation and Dementia

Alzheimer's disease affects the brain. It destroys brain cells. Loosing ones memory and the ability to reason is the hallmark of Alzheimer's disease. The brain whether we like it or not also regulates emotion and behavior. Essentially our ability to feel starts with the brain. One of the hardest and scariest parts of the whole process, (besides everything else) is the behavioral changes. A person with AD, can begin to behave in very strange and uncharacteristic fashions for themselves. It is bizarre and frightening quite often for family members. As the disease wears on the person with AD looses their ability to self-reflect-to have insight into their own behavior. It is not their fault and if they could they would hate it more than you do- but they can't.
It is also unique in that one day for no apparent reason the behavior can appear quite normal and baseline and it seems everything will be okay. The next day the behavior is strange, odd, bizarre, frightening, maybe hostile, maybe threatening. It is enough to drive a family member or loved one nuts. Yet the AD victim can't help it.
Hence emerges modern medicine. "Why can't the doctor do something?" "Help them doc!"
Keep in mind to this date yours and my Federal Government and its regulating body the FDA The Food and Drug Administration has approved no medication specifically for the treatment of agitation in Alzheimer's disease. Yet in modern society we use meds all the time.
Now I don't want to get all that hate mail, thinking I am pro-meds, "pill-pusher" "doctor does not take the time" "how can they just throw meds at my mother or father, they don't even know him or her" -I know. Believe me I am not pro-meds, I just happen to know the pragmatic realities, expectations and limitations of them because that's what I was trained in. I would rather see anything and everything that can be done other than meds to help the behavior to be more balanced and normal for that person. As family members know, simple reasoning does not always work with the AD victim. -It is not their fault.
As far as the specific meds, sometimes the cholinesterase inhibitors the Aricepts of the world can help the behavior,  sometimes they can actually make it worse.
The are indicated for AD not specifically for the behavior.
Sometimes the antidepressants can help the agitation the Zolofts of the world and sometimes they can make it worse. A person with AD can be depressed, but they can't necessarily tell you. But even if you can't make a clear diagnosis of depression sometimes the antidepressants help agitation. I talked about the atypical antipsychotics in the past. the risperidones of the world. Sometimes they help, sometimes a lot, the government and medicare are all over this with warnings about increased risk of stroke in psychosis with dementia, and the omnipresent diabetes risks.
the benzodiazepines, the Ativan's of the world sometimes help, and sometimes they disinhibit and make the person worse. They are cheap, addicting-not always a worry in dementia patients, and the primary care world loves them.
Then there are the Antiepileptic meds, the Depakotes of the world. Sometimes they can help a lot in low dose, but they can also cause worsening effects with sedation for example.
It is often a balance of calming the behavior without sedating the patient too much. Sedation seems to aggravate the already declining cognition and ability to think.
Ask what your doctor is prescribing and why. If you think your loved one needs meds for agitated behavior, ask the doc which med and why.
Low and slow is the key. It is an art and a science. It takes a little finesse and knowledge base, and in medicine that like anything else is variable. The meds are not going to work miracles, and your doc is probably not stupid or holding out in the best med for some ulterior motive. They are probably adequate and average at least. But if you don't trust her or him, then get another one. If you are only allowed to see a mid-level prescriber, such as a nurse practitioner or a physician assistant, and you would rather have your loved one see someone who went to medical school and had years of residency training then ask for one.
Remember the agitation is not the AD victims fault. Think of the brain as a stoplight at a major intersection 12 lane intersection. Then a storm wipes out the power. Everyone has to get to work. There is always the asshole who runs through the intersection, and then many more who are uncertain or scared to proceed.  It is chaotic.
If you ever rented a truck, say from Penske or U-Haul they have a governor on the engine, you can't go past 65, conversely it may be tough to get up a hill. The brain is the governor of behavior. AD is the storm that wipes out the traffic light, AD removes the governor on the truck and you got a run away truck. It is not the victims fault.

The Helplessness of Alzheimer's

The process of living through Alzheimer's disease in a loved one is essentially an emotional prison. You are stuck behind the walls of helplessness. You can't stop the disease from progressing, you can't reverse it, you can't cure it. you have no control of the situation. You are involved  very passively and helplessly in a process. Sort of like being caught in a tornado, and waiting for the storm to end, wondering how much destruction will be there, and if you will even make it, and of course in the middle of the storm you are not sure it will ever end.

Prison, you freedom, your control is taken away. It leads to anger and frustration, we often end up lashing out at those whom are closest to us, the guilt leads to more anger. 

You remember the loved one in better times and you want those times back, but you can't have them. People that have not experienced it feel bad or sorry, they think it is terrible, but you feel a wall between you and them. That is what the disease does.

It is diabolical, one of the worst things to experience, in our modern society, the disease is a machine that is non-stoppable, it isolates a person, physically and emotionally, it alienates siblings and family members, it should bring families closer, but it usually does not do that, it seems to conquer and divide. Every family member goes through the living grief in their own unique way. 

That is all part of the Alzheimer's process. We hang on every hope, the media exploits, just it doing their job, with reports of breakthroughs, but the fact of the matter is the efforts to work together and conquer the disease are quite fragmented. The disease conquers and divides. It is isolating. 

The great non-profits of the world, do their best: missions, always missions, conquer, cure, stamp out, stop the diabolical killer. Walks, fundraisers, see and be seen. Stop the disease. Remember all the tax status, non-profits have to balance budgets, survive, pay salaries, send press releases, go on with the mission. sometimes the mission of the non-profit is unofficially to survive, legitimized behind the official altruistic well meaning MISSION. 

We must be doing something wrong, or it just not that important, how is it that all these public sector and private non-profits, researchers, doctors, clinicians, everyone, can not simply come together and get it done? Lots of little worlds, fragmentation's, fighting for grant money and publication, notoriety etc etc, can't come together? Fragmentation. The disease conquers and divides. The helplessness of Alzheimer's. 

Does anyone who has not lived through it, really understand that forbidden feeling we all have? Hating the victim, and constantly having to remind ourselves we hate the disease and not the victim? 

Worse yet, wanting it to be over, wishing, wanting, hoping the person will die, since it is so awful they are suffering, we want it over. Then we remember our loved on and who they were before the disease, and we are overwhelmed with guilt,-the living grief.. My God no wonder there are so many health problems, and depression in caregivers and family members. What can that kind of stress do to the immune system, the bodies resilience?  

Sadly with what has happened to our health care, and honest to God where it is headed, I am so worried about the lack of honor and dignity placed on our aging population. Euthanasia may take center stage, and the media and politics continue to color our collective thinking. Well since we can't beat the killer lets join it.- Wrong direction to go in, I know it, I promise.

How did we essentially conquer AIDS in 25 years? Were we just lucky? Better money, Better resources? More important people had it? What is AD trying to tell us about ourselves as a society? 

Is there a way to truly work together, to come together, to conquer this killer? Right now there is something wrong with the paradigm. So many self interests hiding behind the mission. Why is it so fragmented? It does not help any that we are more narcissistic and youth-worshiping as a society than ever, with absolutely no attention span and completely aggrandizing and novelty seeking. Are we redefining Altruism? At this point it seems you can't officially be altruistic if you don't have the correct tax-status. fight each other and cut the throat of others for the money, for the grant. for the publication. For the recognition. It seems we are pretty screwed up in our priorities and how we are going about this. Perhaps it should be a law that every American has to adopt a AD victim or an AD family, for even a day, an hour. 

Maybe all the Alzheimer's efforts should be mandated to poll their resources. no fragmentation. Except we all know where that would go, more bureaucracy, and power struggles for control, and in the end somebody a few making money.

Well Doc Here I am again.

You have nagged me to post again. So I decided to post a post that my wife posted on my blog. Is that toooo many posts. She is my main caregiver and since your blog is more to that arena, I thought it would be ok. But notice her post is not 42 paragraphs like some people we know. Love You Man.

Joe posted a few weeks ago about the fact that we have had some difficulity. He has had some issues and yes I was hurt by them. But in all fairness I guess I am to blame too. As you know he can still find his way around the computer and sometimes it gets him and others into trouble. So as a caregiver and as a spouse I am going to say that we need to ask questions when our other half is doing something that we are not sure of. We need to check the bank statements and credit card statements just to make sure there are no charges there that we do not know about. $10 here and there really add up. Also just like we do with our children we need to know who they are talking to. Whether on the phone or on the computer. So I am sure that we will have a few more arguments about how we nag and are trying to control things but, if we don't damage can be done that can not be forgiven or forgotten. Fortunately we are working on our end. So do not be surprised when he writes that I am being a nag and not liking me or others very much. We do it out of love.

Pay Attention to what is going on around the person you care for.

Lynn

The Course of Alzheimer's

Good to see Joe and Karen and the resurfacing of Lisa-so glad you are back blogging again. Very dear, Loyal and good people, I can't say enough about them. We are all  universally connected by this AD machine.

One of the things I have been thinking about lately is the course of this disease. The seven stages are quite well known and popular over the last 15 years. It does not matter how you break down the timeline of the disease, on a long term basis it is always predictable. One of the confusing things is that it gets diagnosed at all different times on the continuum of the illness. So it may seem to last anywhere from five years upwards to twenty years. Someone may be several years into the process when they are actually diagnosed, or very early on in the process, depending on the family, the doctor, even ones willingness to make the diagnosis, including the doctor, the family the victim.

In the early days and years the disease is quite a bit of a roller coaster ride, peaks and troughs, good days and bad days. They often happen for no apparent reason, the phase of the moon, the alignment of the planets, you never know when a good day or bad day will come, in the earlier stages. So the day to day course can be quite variable in that way. It is enough to drive anyone bonkers.

Here's why:

One a good day things seem clear, oriented, lucid, the family, the caregiver, gets this sense that maybe everything will be okay, maybe the AD stopped. Maybe it is a miracle, maybe I am waking up from this terrible nightmare. Yes we know logically it is not true, but we are all human, and it takes us for an emotional ride. we get a strange little candle flame of hope. But the next day for no reason is a bad day, disoriented, a bad scene, getting lost if driving still, leaving the stove on, getting dressed inappropriately, forgetful, confused a bad day after a good day, anger, despair, grief, a feeling of being betrayed by God or whoever you look to- a terrible emotional roller coaster.
Sadly as time goes on these are less good days and over time a lot more bad days, when you are close to it, it is tough to look at the big picture and you live day to day and loose perspective, you want to get off that ride, but you can't and you won't.
You start to hope for good days, less and less over time, you try to laugh, but it gets harder to laugh.

Yes in the big picture the course is always predictable, the various ways of breaking it down the early intermediate or late stages, it is universal and correct. But early on these is not enough credence that can be given to that roller coaster ride.
Even if we understand the stages in the big picture, it give us a nice sense of false control over an out of control situation, but it does not help to much in that day to day ride when you are so close to it, just trying to survive another day.

Blogging about Alzheimer's and Social Responsibility?

     After Joe P's last post a couple of weeks ago, I started thinking about the purpose of this blog. Joe says people with AD read the blog (I am not sure who besides Joe) but then again it is a blog. Joe's posts have been fantastic and articulate, I know he works hard on them and for someone with AD, he challenges all of our stereotypes of an Alzheimer's victim.
     I wish there was a way I could get rid of Joe's disease to make him well again, for every victim and every family I wish I could do that. If someone waved a magic wand and said change your blog or stop blogging or jump this high and you will cure Alzheimer's- wouldn't that be fantastic? Joe talks of the frustration in reading this blog, not always understanding what I am posting. This shows the same frustration and the helplessness and out of control feeling I felt with my mother many years ago, as she succumbed to the disease. I still feel it for Joe and the five million other people suffering with the disease and the 40-50 million loved ones affected. All those feelings.
     I know if I tried to change the blog it would not stop the out of control disease. I wish I could.
     The posts are getting a little hard for him to read and of course being a person who happens to be a doctor and a physician and basically spending all day, every day trying to help people giving all of one's inner strength to others to help and heal them (because that is what being a real doctor actually does, ( contrary to our societal prejudice and stereotyping of physicians and psychiatrists.), I started thinking are my sometimes angry, even sardonic, sarcastic yet honest posts not nice? not helpful? not therapeutic?
     Do we blog for ourselves or do we blog for everyone else?
     I am not interested in making anyone feel bad or confusing them-with hard to read posts or in any other way, so honest to God, if you read this blog and you are a caregiver or a victim in early Alzheimer's stages and you read this and it makes you upset in any way, DO NOT READ IT. That is not the intent.
     I promise that there are thousands of blogs out there written in so many different ways, some offensive or hard to understand and some much more self-help and user friendly than this one, and everything in between.
    I hope it helps some people by providing info, knowledge or wisdom or experience, but that was never really the primary goal. In fact the primary reason for blogging was to just write, to blog. I know sometimes the posts are helpful, filled with info that might not appear on other blogs. Sometimes it is just writing and publishing, and it is about the reader, like a book, a connection for better or worse, between a writer and a reader.
     Other people get to blog freely, so why can't I, freely and honestly? Pressure and a conflict in myself.  If I blog as a person who happens to be a physician, do I have an ethical obligation (that others don't) to always try to make my blog helpful to people? Thereby compromising my integrity, freedom and honesty? People complain so much that physicians are not human and disconnected, so if you are human like in this blog: I have learned that people are not always happy with that either. People are not really comfortable letting go of their stereotypes of docs.
As much as people have their terrible misguided animosity towards physicians or psychiatrists, based on their own terrible experience that they expected or they heard about from someone else, would it be better to start over and lie (like some many blogs out there and pretend I was something other than what I am?) I guess I just can't do it.
     I promise not all psychiatrists are low life weasels, but so many people need to hold onto that, serves some purpose. Frankly it gets a little old. Truly it upsets some people if you even try to defend your profession, you just can't win.
    My book like the blog, sort of lets people in on quite a few things, that are totally upsetting to read about and certainly not something the medical world openly discusses. People don't like that part, it makes some mad, I get so tired of pretense and lack of honesty, so someone needs to talk about things.
    This blog is not really clinical, it is just my thoughts and feelings, not meant to be above or below any one's intellect. Its just how I think as a human being, we all get some slack don't we? I mean sometimes it is clinical but sometimes it is just thoughts, that's the beauty of blogging isn't it?
     When I went into psychiatry, 20 years ago, I really thought it was the most humane of medical specialties in so many ways. It took many years to figure out what a scapegoat the entire profession is. Think about it, people bring their terrible upbringings to you- pain, trauma, abuse, in-humanness, terrible experiences, with an expectation that another person will fix it all. Do you think a little of the pain, rage and anger,  if not like all, gets displaced onto that "SHRINK" especially when they can't fix it all. Throw in the wonderful world of psychopharmacology and there you have it.
     Perhaps the toughest part of the work, the most emotionally grueling aspect, is that as a doctor you basically give up most of your life in an effort to help others, you must treat everyone with the same empathy and compassion and positive regard, no matter how much your moral compass disagrees or disagrees with the actions of that person you have taken an oath to care for, you still care.
     In other words think about it, you get to (you must) treat a child molesting, murdering, rapist, in the same nonjudgmental compassionate way as you would that sad depressed old lady who is now widowed and whom basically gave up her whole life serving others and is now suffering with Alzheimer's disease- and do all that in the span of a half hour.
  
       Remember we are all connected by this disease, 5 million people have Alzheimer's. I hope this blogs helps somebody, if only by enlightenment, validation or simply, entertainment. I have considered the original intent of the blog, and always struggled with the moral or social responsibility or obligation I might have in blogging, I mean I'm not practicing medicine, I'm just blogging. Somehow by speaking the truth, my Truth, am I violating that social responsibility, probably not, I am just letting some people down maybe, by challenging some of their pretenses. If as a blogger I do have some higher ethical obligation to do whatever I can as a blogger (who happens to be a person and a doctor) wouldn't everyone who blogs, every human being have that social responsibility and ethical obligation as a human being to help others in some way? Yes? or No?

To Dr. Joe

Doc,
I am having some problems with your posts. For me they are not simple enough. We with this disease really have problems with professional type language. This is not a complaint, just telling you my side when I read your posts. I know your site is for caregivers and to help them. But I know a few of us with AD that read your blog, they may also have this problem. I still consider you a friend, even is you are a shrink. That does not make you bad. My day today is, I sucked up my blog, brain is shrinking and so is my understanding of what I read or attempt to.



God Bless You My Friend,
Joe
http://living-with-alzhiemers.blogspot.com/

They Say Phsyc's Know What They Are Doing!

Hello,

My name is Joseph Potocny, you see Dr. Joe and I have known each other for sometime now. But let us question his sanity, he is a MD I am an AD (Alhziemers person) and have FTD as well. Now who knows more him on the far left or me on the gentle right.

I thank Doc for asking me to blog here, I guess he is ready to be punished for the well shall we say less than upstanding life he has led. Not true, he is a good guy. 

I have had the disease for over 3 yrs confirmed, by the time you know whose professsion would listen to me. So today like many days has been filled with times of where the hell am i and what am i doing.  I was going to do this as a video, but he told me creatures were not allowed to appear in person.  I read docs' blog daily as he makes posts, some I just do not understand, that is the way it is. Others he is right on.  See he was a victim of this disease on the other side and could not understand why his mom was leaving him. I live on the other side of the tracks and do not understand why people are leaving my brain and world. By the way Doc and I are getting married next week last I knew.

I hope to be back latter, but with a more direct post that I do as normal. Just to prepare you visitors and friends of Dr. Joe, I am very blunt and not always choosey about my words. Nor do I use spell check.  Read his book, I think you will find solace and vindication in it ( wow big words ) must be getting late.  I needed help from my wife with my thought processs on trying to understand it. But I need help in finding the bathroom.

God Bless & Keep You & This Country of Ours!

Joe

http://living-with-alzhiemers.blogspot.com/

Dementia-agitation, treatment

Now one of the biggest stressors for family members is what do you do if your loved one with Alzheimer's is agitated and lashing out, or agitated and wandering off at night. What if they are moving about and wandering and confused? Are they more likely to fall and get hurt? Sometimes. This is typically a problem in the later stages of Alzheimer's and not all people in the later stages of Alzheimer's get agitated. Some do, they may even get violent. Remember this is the disease and not your loved one.

Yes it is true that there are people who have a history of violence and anger and agitation well before they develop Alzheimer's. Think of the violent or antisocial or sociopath. In my world as a psychiatrist those problems are all too common, but for the sake of those reading this blog, violent, dangerous people are the exception and really not that common in society. Yes violent dangerous sociopaths are people too, and I as a physician get to treat them with compassion, dignity and human respect, no matter how much I disagree with their values and the choices they have made. Another profoundly stressful thing at times which goes with being a professional and a physician. Another fact that is overlooked and very taboo and considered maybe even unprofessional to even admit, but yet very, very true. By the way as another aside, most people with mental illness are not violent or dangerous, especially schizophrenics, another fact commonly overlooked. enough digression and back to dementia.

Lets assume your loved one with AD was once a decent citizen, with no history of violence or agitation or any history of ever hurting other people. Now they are physically lashing out. Remember it is not them it is the disease, it seems to change personality, remember. Uncharacteristic behaviors emerge. Maybe your loved one is now taking their clothes of or making becoming hypersexual and inappropriate in that area. Remember it is the disease not your loved one.

Hypersexuality, wandering, violent aggression. It does not happen to everyone in the later stages of AD, but it does happen and it happens a lot. It is awful, it feels indignant and it is humiliating to live through as a loved one. It is something that many face and it probably is not addressed enough, because it is such an uncomfortable topic. Typically it is seen in the nursing home setting, when caring for the loved one at home has just gotten to be too unsafe. And yes there are people with AD living at home in the later stages who for whatever reasons, financial, guilt, emotional exhaustion, lack of resources, isolation or whatever just can't or won't place their loved one in a nursing home or assisted living. Every situation is unique and can't be judged either way. Entering a nursing home is a terribly emotional and painful situation for a family and a person with dementia. Sadly it is quite inevitable for many, if only for safety reasons, which is a big reason.

so what do you do to treat these problems of aggression or wandering or hypersexuality? Obviously you have to help the person calm down. There are basically three ways to do this. The most humane which does not always work is environment. A soothing calming relaxing environment. Soft calming music, maybe from your loved ones era. Reasonable lighting, enough light but not overpowering. Activities, attention, calmly talking to and with your loved one. Decent nutrition, some nursing home and assisted living facilities are better at this than others. Like anything else, some are great and some not, most claim to be, and if the environment, is the best thing to treat the agitating behaviors. Sadly it does not always work. Another problem often overlooked is when you take a person out of their home environment after 40 or 50 years, because it is just not safe, the new and foreign environment can sometimes lead to or make agitation worse. Why wouldn't it? Sometimes it settles down with time and sometimes not.

The second way to deal with aggression or lashing out, is physical restraint.

The posey, that thing that looks like a net that fits across the torso of a person and keeps them belted if you will in a chair. nobody wants to see this. It feels indignant and inhumane. We get angry at the doctor, the staff, and everyone else. The alternative is wandering, falling, assaulting other staff or residents. It is awful. There are various rules and laws regarding this, but when it is considered unsafe, sometimes the facility has to resort to this. some may use it more than others, that depends on the rest of the environment and your loved ones symptoms they are displaying. It is profoundly painful for loved ones to see this, it stirs up every raw ugly painful emotion associated with the diabolical disease.

The third way to treat violence and aggression or wandering is chemical sedation/restraint. Now the obvious problem usually overlooked but faced by thousands every single day, is that fact that calming your loved one down with meds can mentally slow them down more. They can become too sedated and sluggish making the Alzheimer's seem much worse. Obviously ideally a balance has to be struck. calm but not sedated is the goal. Right? This lead to the common dynamics of the meds actually becoming more of a villain. Throw in the fact that the doctor only seems to spend a couple minutes with the patient and does not see them that often and you have lots of high emotion and tension. some docs are way better than others, but I promise you no matter how much time the doctor spends with you, is kind, caring and compassionate, it can never be enough. That is the nature of the disease. remember most docs may have ten or twenty of fifty other families going through the same thing. A good doc will never ever say I have more patients to get to. In medicine, unlike anything else, patients are not customers, they are patients, and moreover they are people. That is regardless of the fact that the health care system seems to be moving in a most negligible direction, with the doctor patient relationship, continuously being placed as the lowest priority, regardless of what anyone tells you. I could digress into that issue all day, but suffice to say despite all the realities of our society and the health care debacle most docs went into medicine to help people like your loved one, some are way better than others at conveying compassion and empathy, it is a fit or a chemistry, and you know when you have a good one. Remember just about every issue in the geopolitical world, demands the doctor to be this way, and presents an environment and situation where it is becoming almost inhumanely possible to do this. The good docs don't make excuses. Back to the meds, there are many that are used to calm, sedate, and yes chemically restrain persons with AD. I have previously written about SSRI's and touched on antipsychotics. They have there own host of problems and warnings in dementia patients. It creates another quandary. What to do, no perfect med or situation, regardless of what anyone tells you, each situation is unique, sometimes the meds work wonders, not cognitively clouding the patient yet treating the aggression or wandering or hypersexuality quite effectively. sometimes not. Sometimes the meds increase the likelihood of taking a fall. Sometimes they decrease wandering and the likelihood of taking a fall.

The meds to treat AD specifically, aricept, exelon, namenda etc, sometimes help these symptoms and sometimes can make the aggression worse. There are several classes of meds used, and each person responds slightly differently. In future posts I will try to cover the salient features of the common meds and classes of meds used in people with AD.

Writing About Alzheimer's

My mother died from Alzheimer's in 1987. It was 8 years after she was diagnosed. She died 5 days before her seventieth birthday. She was diagnosed when she was 62. We really don't know exactly how long she had it before the diagnosis was made. By todays definition she had what is known as Early Onset Alzheimer's disease. (It stated before she was 65 years old.)
Back then 20-30 years ago, it used to be called pre-senile onset (before age 65) or senile onset (after age 65).
Interestingly although Alzheimer's was disocvered 100 years ago, there was a time when dementia, of almost any cause, was known as "senility". There was a time when we just used to call it "hardening of the arteries of the brain".

In 1979 when my mother was diagosed with Alzheimer's disease, no one that I knew had ever heard of it. I was 17 at the time and certainly my high school buddies had never heard of it.
I started to write a memoir about it in 1988, less than a year after she died. I was in my last year of medical school and got a little side tracked with finishing the book. I put it aside for almost 20 years. In the mid 2000's I went back to it. I do not know why exactly, I certianly did not have the luxury of time to work on it. I still worked on it however. Perhaps it was becouse I was a father myself, and I started to think about the legacy that parents leave.

In the early 1990's somewhere in my psychiatry residency I authored a short story about my mother's AD published in Bereavement Magazine- Colorado Springs, Co. ( I think it has a new publisher over the years and from what I can find it is now called Living With Loss Magazine)

I used to present at a lot of AD conferences around the area in the late 1990's and early 2000's, and sometimes I would finish up the presentation by reading this short story.

I realized the short story (only a few hundred words) tracing my mother's entire AD journey was not enough, but figured I would never get to finish the book.

DIAGNOSING ALZHEIMER'S DISEASE

Dr. Alois Alzheimer (findagrave.com)

As we continue to look for a cure for Alzheimer's Disease, an interesting point must not be overlooked. The way we definitively diagnose the disease has not changed in 100 years since Dr. Alzheimer discovered the disease under the microscope.
To arrive at the definitive diagnosis of AD, brain tissue must be examined at the microscopic level. This can be done with a brain biopsy, (taking a piece of brain tissue and examining it) which is obviously not done in a living human being. The brain can't handle a biopsy, unlike say the liver or skin, or secondly an autopsy when the person dies, in which the brain tissue can be examined microscopically.
Other than that, the diagnosis still remains one essentially of exclusion. That is: you rule out other causes of dementia.
So how is it diagnosed with 80-90% accuracy in a living human being? Lab tests, ruling out things like thyroid problems, vitamin B-12 deficiency, syphilis, etc. Then imaging, CT scan, MRI, to look for other structural changes, e.g. brain tumor, vascular or blood vessel disease, you can see small strokes, (infarcts) on imaging, where the blood circulation of the brain was compromised. Sometimes an EEG electroencephalogram is done, that is generally to look for seizure focus (that is the test where they hook up all the wires to the head, and monitor the brain waves)
The first and foremost thing is that a very, very careful and in depth history must be done, (before the tests). Information from the patient, family members must be gathered. The more information the better. There of course are many commonalities in the history and onset of AD.
After the history, a thorough exam is done, (or should be done) This includes a physical, (often at the level of primary care, to rule out other medical problems that may be compromising ones mental functioning, and a THOROUGH neurological exam, testing ones sensory and motor function and a THOROUGH mental status exam. Testing one's short, intermediate and long term memory, concentration, attention, orientation etc.
In addition a THOROUGH psychiatric history should be done. Depression for example can mimic certain findings in AD. Complicating the picture more is that depression can co-exist with AD, and can be a presenting sign. Sometimes the depression gets picked up but the dementia missed, and vice versa. Of course there is the usual stigma and bias in society towards mental health, so this part can often be overlooked till it is of severe proportions. (bias and preconception and skewed views about mental health even exist in the health care field outside of psychiatry)
Another problem we forget about a lot is that AD can (and often does) co-exist with other problems such as Vascular or multi-infarct dementia (blood vessel disease and problems with circulation to the brain)
Despite the findings and research into causes, genetics, environment, etc, and all the clinical expertise and AD specialty centers, in the end that is still how you definitively diagnose the disease, just like Dr. Alzheimer did 100 years ago.
As we continue to look for THE CAUSE, THE GENE, we must consider this fact: Like many other problems such as heart disease, there may be many contributing factors and not just ONE CAUSE or ONE illusive gene.