HEALTH CARE REFORM

Well as everyone is trying to get to where they need to be and settle in for the Holiday, our Senators are working really exceedingly hard pulling in some long hours. I know they have some really great health benefits, administrated for most by a private sector company. I used to be a Federal employee and work for the VA, the largest "socialized" health care system in the country. I know the Federal Employee Health Benefits I had (FEHB) were awesome. I know they cost a fraction about 90% less of what I now pay for my health benefits as a private practice physician. Nothing like being penalized severely for not being in a "large pool". We must always shift the cost somewhere right?
As a "consumer" a patient, I like to think that overall at 48 I am in pretty good health. The Health Care legislation and the political history that will be made, frankly scare me half to death as a patient.
As a physician it demoralizes me. Things are bad now, I can't practice medicine to much without a bureaucratic entity telling me what I can and can;t do even in private practice. I can't prescribe the correct and appropriate medication to help a patient without begging some non-medical person for permission and fighting through stacks of paperwork and forms, meant to break down the doctor so you give up and prescribe something less than optimal. (Cost Containment)
My innate and 20 years of clinical wisdom and experience are not rationally challenged but instead are beaten down daily. My ethical sense is constantly urged to be compromised every day, yet I keep fighting for my patients. Maybe to no avail.
I am told who I can and can not refer a patient to regardless of if I know whom the best person is. The insurance company does that, regardless of whom is the best.
I am used to that. From what I can see (although like everyone else including many of the Senators I did not read the thousands of pages of the bill), that is NOT going to change. It may even get worse. It most likely will get worse. It really does not seem like REFORM. It is hard to follow S. 1796 America's Healthy Future Act.
Check it out at open congress introduced by Senator Baacus from Montana back in October.
http://www.opencongress.org/bill/111-s1796/show

Then there is Harry Reid. I heard him addressing the senate the other night and he cited some really sad stories of patients scenarios in Nevada, and not being able to access health care. He sounded really sad for these people like he cared.

According to wiki: http://en.wikipedia.org/wiki/Harry_Reid

"Reid is a first generation member of The Church of Jesus Christ of Latter-day Saints.[56] Reid and his wife, who was born to Jewish parents, converted to Mormonism while Reid was a college student.[3] He stated in an interview with Brigham Young University's Daily Universe that "I think it is much easier to be a good member of the Church and a Democrat than a good member of the Church and a Republican." He went on to say that the Democrats' emphasis on helping others, as opposed to what he considers Republican dogma to the contrary, is the reason he's a Democrat.[57] He delivered a speech at BYU to about 20,000 students on October 9, 2007, in which he expressed his opinion that Democratic values mirror Mormon values.[58]"

And to think I thought it was not progressive to interface religion and politics. So which is it?

How did this happen? Is this America's Christmas present? Read all about it. I actually was able to follow this story.

http://www.newswithviews.com/NWV-News/news177.htm

Oh well God Bless America.

I hope it gets better for patients. I wish I could practice medicine ethically unhindered. Do we really need doctors anymore? Can't we just get by with administrators, and nurses and nurse practitioners and physician assistants, and lots of techs and lots and lots of mid-level providers, and lots more technology and electronic means perhaps a lot more federal employees and bureaucracy? I mean there is a doctor shortage in many parts anyway? whats the difference? Doctors are too expensive right?

Isn't it doctors that have driven up the cost of health care? Or Wait maybe we collectively as Americans are done playing that mantra record.

As Americans we can just sit back and wait.

Oh well God Help America.

Merry Christmas.

Fond Memories

One of the happiest times I remember about my mother long before she had Alzheimer's disease was a certain day of the year. It was St. Joseph's day. It occurred every year on March 19th. The Catholic Church recognizes almost every day of the year as some feast day, and this was always considered a most important day in the church.
Way back when in the sixties and early seventies, my catholic grade school even used to give that day off from school, to honor the day. Over my grade school years the day off became only a half day off. It seems that perhaps in keeping with the political words of progressiveness, perhaps honoring feast days and patron Saints became less significant. Yet it was not so long ago this was a most important day in the church.
On that day, my mother would take me downtown to St Peter's Cathedral in Erie, Pennsylvania and then to St Joseph's Church on Sassafras street. We would light a blessed candle at each of the St Joseph side alters, and actually get on our knees and pray. In those days the churches used to have kneelers in front of the alters, many still do. We said our intentions.
The years used to go by more slowly back then. It was a timeless tradition. It was about religion and praying but it was also about a mother and son bond.
After going to church we usually stopped by Carlisle's department store and had lunch. It was so special it was like a birthday or Christmas to a kid.
My mother would by me a present, a commemorative gift. One year it was microscope slides, another year it was a Grand Funk Railroad Album. It was a big day.
I think my mother looked forward to it as much as I did.
She was selfless when it came to raising her kids.
It was not so long ago, yet it was ages ago. It was still a bit before the "me-first" generation when it really was not pretentious or politically incorrect to put your kids before yourself.
Putting your kids before yourself as a parent nowadays sometimes is done out of a fierce competitiveness, in keeping with the "me-first" times. Kids now become objects of the parents, since we are often so narcissistically wounded and must move so fast and "get ahead" of everyone else.
I think those special St. Joseph's days were born out of love. I had obviously never heard of Alzheimer's disease back then and I had no idea that in just a few short years the disease would take my mother.
My parent's were fortunate enough to travel to Europe once in 1966. I was about four years old. They went to Italy and got to attend a mass celebrated by Pope Paul VI at the Vatican. My mother got me a brown Rosary blessed by the Pope. It was my first communion rosary which I made in 1970. On St Joseph's day I used to bring that with me to church and would say a decat or several for all my intentions. I still have that rosary. It is a keepsake.
St Joseph was the patron Saint of the Universal Church, the worker, and the family. It was something bigger than all of us. It was something to strive for and someone to pray to and emulate.
I realize in the world today, the world of relativism, with all the cool intellectual and "actualized" agnostics and atheists out there, most of this stuff is now considered hokey or ignorant.
All I can say is every single person out there had or has a mother, regardless of religious affiliation or lack of affiliation. It was a powerful and timeless context for my mother and I.
As a kid I thought we would have this tradition forever. My mother and I would sometimes talk about that. St Joseph's day would always be our special day, no matter how old I was. The tradition of going to church and lunch of stopped when I was about 13 or 14. My father died when I was sixteen and my mother was diagnosed with Alzheimer's shortly thereafter.
Perhaps somewhere in the collective unconscious my mother knew, or God knew what was to come. March 19th St Joseph's Day was a timeless gift for both of us.
When you have such an important decent gift of love and a tradition like this, it makes the awfulness of the disease seem that much more awful.
To have something like that and then have a disease like Alzheimer's take it away is maybe worse than never having had anything at all.
Yet, I know in the end, that special day and that special time can never be taken away from me as it will live in my heart forever.

Holiday Times

The holidays mean family right? time to get together, to reminisce, build new memories. create new traditions, act on old ones. Christmas, Hanukkah, tress lights, wreaths, Best Buy, Airports, travel, winter, December.
In the Western World, we sometimes feel a pressure to make everything perfect, make sure everyone bonds and has a good time, that new happy memories are built. Sometimes it does not go that way despite the pretense. There is major letdown, hence people get depressed, because they think they are supposed to be happy and merry, (as opposed to other times of the year. So then we think of the true meaning of the Holidays or at least try to, to rationalize and divert from the letdown. We think of the less fortunate, and send gifts and volunteer for those less fortunate, (as opposed to other times of the year).
Sometimes when families get together, old dynamics come up. We psychologically regress to the role and place we fell into things in the old days. It is insidious, and most people are not aware of it or only slightly aware of it. It can lead to resentment, when we are thirty or forty years old and cast into the realm of the six year old.
If you are fortunate enough to have an intact family, relatively healthy then you are quite blessed.
If you have lost a family member, a close relative, then you know all to well things are never the same at holiday time, no matter how many years it has been. If this is the first year without a loved one at the holidays then things may seem more than a bit off.
If you are elderly or have early dementia, you may crave and be excited for the holidays, and those family members, "the kids" to come home. To see the grandchildren. If you are a son or a daughter, and a parent has dementia you may be ambivalent or even fear spending the holidays together, as things are never quite the same.
Don't forget about the blended families and divorces. Will you have the kids this year? will the holidays be "split"? Will you be putting a son(s) or daughter(s) on a plane across the country as an accompanied or unaccompanied minor?
Dementia and the Holidays are not exactly the best mix, but we do try to make the best of it.
If your parents or grandparents are deceased like mine, you may long for the very old days of the original intact family of origin. The holidays force us to revisit the past and often our grief.
You may try to make it nice for the kids, caught up and lost between the materialism and trying to teach the omnipresent "long lost meaning".
Do you live down the street from where you grew up? Do you see your relatives throughout the year? (A common phenomenon up where I reside,-many people leave home and make it all the way down to "the cities") are the holidays a hassle or a time to be thankful?
Whether you had a happy childhood or one filled with chaos and drama, or too much alcohol for example, now maybe things are "better" or some level, more seemingly cohesiveness, having lived through the "war", whatever way you look at it, the holidays are an emotional time, for better or worse, an emotional time.
If things are "perfect" do you await your son or daughter to come back from Yale, or Pitt, or Penn or "The U"- whichever "U" you want, there are lots, or law school, or medical school. Is there a pressure to make everything perfect?
For those Alzheimer's families, it is one more holiday. Remember the holidays are embedded in our long term memories, like music for example. They were such an exception to normal everyday life, we put them in our long term memory banks In a special way. Make the best of it, it can bring moments of joy in the preserved longer term memories of you loved one. Remember long term memories last the longest.
If you have lost your home, and a parent or parents are in a nursing home or assisted living, the time spent together, even if it is not home, is what the holiday and every day of the year should be about. No price tag for that one.

ALZHEIMER'S MEMOIRS......

Writing an Alzheimer's memoir, can be a healing as well as a gut-wrenching experience. The journey of Alzheimer's Disease is so lonely and isolating, there is a need to scream to the world, "HEY DON"T YOU GET IT?" Hence the hundreds and hundreds of Alzheimer's Memoirs. Each and everyone a unique and powerful story, with the common thread of the diabolical disease linking all memoirs.
Why can't the caregivers and the victims be heard? Why do we still have limited treatment for this killer? Why do we still have no advancement in the real definitive diagnosis? We diagnose with 100% accuracy the same way we diagnosed the disease when Dr. Alzheimer discovered it 100 years ago. No progress. The Alzheimer's Breakthrough Act of 2009 may die again in the U. S. Senate and House of Representatives- Bigger fish to fry.
-Hence the Alzheimer's Memoir.
Most Alzheimer's memoirs offer a deeply personal and intimate look into one's life. It is a risky proposition, but the need to write about it, the need to blog about it, pushes past the fear and the embarrassment and the humiliation.
I believe the writer wants to say, "HEY DON"T YOU GET IT?"
How personal do you get? Do you talk about the ugliest details of the disease? Who really wants to read about THAT?
How do you balance the ugly detail and still offer hope? Hope must be offered for the writer and for the reader. Right?
Without hope, what does the reader take away from the book? Enlightenment? Certainly that is something most people, the 250 million or so that have not been yet touched by Alzheimer's, clearly need in regard to the disease.
Most people not yet affected or touched in some way would rather be enlightened about about something like say baseball, or Sarah Palin, or Tiger Woods.
The Alzheimer's memoir emerges. For the writer, for the reader? So many stories need to be told. They need to be shared, they need to be archived for generations to come. I am pretty confident that every writer of an Alzheimer's memoir, got just at least a molecule of hope, if not bushels and bushels of hope in putting their story on the page.
If it gave hope to one reader touched by AD or enlightened one reader not touched by AD then the labor and heartache put forth in writing the book, the emotional roller coaster, the anguish, has all been worth it in the end.
God Bless all those Writers of the Alzheimer's Memoir. Your story is told and your loved one never forgotten. They live on not just in your memory, but in your printed word. For those writers who have AD and have written about it, I can not even begin to express the respect and dignity I feel for your courage and wisdom.

More psych meds

So what is the purpose of a psychiatric med in AD. Depending on the stage of Alzheimer's a person suffering with the disease may not be able to verbally communicate exactly how they feel. Their sadness, their fears, maybe even their joys our ability to feel content may not be expressed. It is quite true that dementia can co-exist Depression.
Depression is a well known phenomenon, and for that matter a bit more acceptable to be outspoken about and to even accept treatment for,in today's world. There is less stigma associated with depression. The same can not be said for other forms of mental illness. With that said there is now a little talked about phenomenon with our increased awareness of depression the tendency to pigeon-hole or clump all sorts of mental illnesses simply into "depression".
Nonetheless as a society we have come a long way in our awareness of major depression. We have more than ever before many pharmaceutical treatment modalities for major depression.
The problem is the AD victim might not be able to tell us they are sad or depressed. Yet we often use antidepressants to help them. Sometimes they show us they are depressed, for example by not eating, trouble sleeping, lethargy, low motivation etc. The problem is many of these issues overlap with dementia itself.
We gauge the behaviors and make the best clinical judgment.
Sometimes there is agitation and aggression. Sometimes this can be partly a manifestation of depression or the dementia itself or both.
The antidepressants can help calm agitation or conversely they can actually increase aggression and agitation.
There often is no perfect clinical marker on when to use an antidepressant and no guarantee it will help. Clear target symptoms have to be identified.
For example if loss of appetite in the context of lethargy and withdraweness is considered to be in part depression, then once an antidepressant is started you have those three possible outcomes, (better, worse or no change). It of course may take a few weeks for the antidepressant to reach full efficacy.
Another important issue is that in the dementia victim, especially with advancing age, lower doses of medicines, like antidepressants must be used. As we age the sensitivity to med effects can increase and the actual metabolism in a person can slow down considerably. A normal adult dose of a med may be much less in an elderly individual.
Meds like anything else ingested into the body are generally metabolized through the liver and sometimes kidneys or both depending on the med. Rarely the lungs will help metabolize some medicines and chemicals.
There is utility in using antidepressants, they are not sinister things the doctor throws at your loved one to make them stop lashing out. Make sure you understand what the med is supposed to do, and what that outcome will look like and how it will be gauged, and how long it generally will take to gauge efficacy. They can have side effects but don't just look and what for those understand the doctor is not trying to hurt your loved one, remember to look for the target effects in a realistic fashion and not just the side effects.

SSRI's psych meds

Quite often AD patients are placed on a psychiatric medication by their doctor. One such class of meds is the SSRI’s, or selective serotonin reuptake inhibitors. This is a certain class or type of antidepressants that are commonly prescribed to treat depression and or anxiety. These meds have been around for a long time now, the prototype or first one was Prozac or fluoxetine. It was approved back in 1987 by the government. I remember the first time I ever heard of this medication, it was back in February or 1988 and I was in my last year of medical school, and on a clinical rotation at Robert Packer Hospital in Sayre Pennsylvania. I was on a pulmonary “lung specialty” rotation. I had no idea how common this class of meds would become and how many would follow. We had Zoloft and Paxil, Luvox, Celexa, Lexapro that were developed over the years. We had other related meds in a similar but different class that were called SNRI’s -serotonergic noradrenergic reuptake inhibitors. Such meds as Effexor, Cymbalta, and more recently Pristiq. Other antidepressants were also developed in other classes over the 1990’s.
Sometimes these meds can be helpful with AD patients, sometimes they can help significantly and sometimes a little bit. Sometimes the effects can be subtle and sometimes they can make a person worse. They have potential beneficial effects and potential side effects.
As loved ones on some level we often expect these meds not to help or wait for the med to make someone worse. There are many reasons why these meds sometimes don’t seem to make much difference. We are often quick to blame the doctor and assume he or she does not know what they are doing, or is “experimenting”. Here is a piece of information that is important. When a med is prescribed, that is a pharmacological intervention; there are only three basic outcomes. The person gets better or worse or there is no major change. I have to say the honest to God truth is that sometimes a person gets worse, not always, sometimes they get dramatically better. But truthfully when a person gets side effects or gets worse, we tend to vilify the doctor sometimes. I have never known a physician out there who is interested in hurting their patient or making them worse. Those kinds of people just don’t generally make it through the years and years of process and weeding out of would-be doctors. In addition to intelligence, ones sense of commitment and ones integrity is tested and those without much are generally weeded out. They don’t make it as doctors.
Another myth is that a physician practicing clinical medicine is “experimenting” patients are “guinea pigs” again contrary to popular belief. It is not “fun” for the doctor to wait and see what happens. Sure there are clinical research studies, but there are ethical protocols and lots of waivers, and in our society it is impossible to be entered into a clinical study without knowing about it. So when a doctor is just trying to treat and clinically help somebody, they might not know the exact clinical outcome, but it is not experimental, they have specific reasons and target symptoms of what they want to improve.
Part of the problem on why we don’t get better outcomes often is because of the communication. We often have no idea exactly what the med is supposed to do. What are the expectations of the med? What are the limitations? What should we look for? How will we know? When we just expect a med to make someone better or make them happy, we are often set-up for a bad outcome. And so it goes form there. The doctor is bad the med is dangerous, “Natural” treatments are better the doctor does not care and so on and so forth. Explaining target symptoms, what the med can potentially help with, identifying markers of success, and understanding these, often leads to better outcomes. You tend to get past the “Nocebo” effect. This is a little known or written about phenomenon that I will blog about in weeks to come. As the health care delivery by physicians continues to deteriorate, bemuse of economics and politics at least in terms of the value and honor and time spent between a physician and patient, this nocebo effect probably will become more prominent. Unless society can let doctors practice medicine, doctors that are allowed to spend time with their patients, and develop a trusting physician-patient alliance with the patient (and family), there will continue to be poor outcomes with med interventions. The doctor may often feel as caught in the middle as the patient and family…

Unmasking AD, spouses, grief.......

Quite often Alzheimer’s slowly takes away the mind of a victim and the life of a spouse, a husband or wife, a life partner. What happens when that life partner whom does not have Alzheimer’s dies first?
So often over the years as a doctor, a have treated someone who has been married forty or fifty or sixty years. What is the secret of them staying together for so many years? In our wondrous day and age and over the last three generations half of all marriages end in divorce. The couple goes their separate ways at least legally from a divorce standpoint.
How do couples stay together till death does them part? No one knows the secret key to that because there is probably no one secret answer to the longevity of a marriage.
When I see a patient and talk with them with their spouse in the room, there is often a certain essence, the union between them; the marriage is the third entity between a man and a woman. One way this manifests, is when a couple has been together so long, they can almost finish each others thoughts and sentences. They learn to think alike and for each other. That can be good and bad, but it does happen.
Often when there is someone with AD that has not been diagnosed, but is “slipping” from AD the spouse picks up the slack. This is where that union, that thinking and answering for one another becomes prominent.
Any professional caregiver has seen this. The spouse answers for the person, thinks for them. It can be quite subtle and as the disease progresses it becomes more pronounced. It can sometimes mask AD. It is a natural process.
When the husband or wife of an AD victim passes away first, the disease becomes unmasked. It tends to accelerate quickly. It becomes more pronounced.
This can often be misleading, the Alzheimer’s victim is now a grieving spouse and may begun to show pronounced changes that are quite obvious. Sometimes we tend to attribute that to grief. When a person looses their lifelong partner they are obviously going to not be as cognitively together and complete.
In the case of my mother, her life partner my father died about a year before she was actually diagnosed in 1979. She most likely had the early stages of the disease for some time before he died, maybe a year or several years, but it was not clearly apparent. After he died it became more pronounced. Is AD accelerated by grief? Probably not, on the other hand can the environment of grief create more of a stressor that does accelerate the biological pathological process of AD? Who knows? That seems a bit unlikely, but on the other hand it is as plausible as “exercising your mind”, living healthy, taking care of yourself as a way to ward of AD. In this popular philosophy and mind set, we are certainly attributing a portion of environment to AD.
When there is a death of a parent and then a surviving spouse, a mother or father now with AD, it is a double kick in the teeth for the children and primary caregiver. It is likely that one never gets a chance to properly grieve, whatever properly grieve actually means.

GoErie.com

I grew up in a town called Erie, Pennsylvania. It's in the NW corner of the state, and sits on the great Lake Erie. I lived there till I was 18, and moved away in 1980. Ultimately a year later our home was gone and my mother entered a nursing home. This blog is primarily about my mother's Alzheimer's disease. I wrote a book about it. I have not talked much about my mother before her Alzheimer's Disease in this blog yet.
My father died in 1978, about a year before my mother was diagnosed. He was a doctor in Erie. There is a columnist named Kevin Cuneo who writes for GoErie.com. Last week he wrote a little article about my father, who had been dead for thirty years. It was a really wonderful surprise, since sometimes I feel little connection with the past as my parents have been gone for so long. I am going to copy and paste the article and enclose the link. It was such an incredible honor to learn someone actually remembered my father after thirty years in this way.


PUBLISHED: NOVEMBER 04. 2009 1:15AM
Flu season recalls memories of 'miracle cure'
Kevin
Cuneo

Because half of Erie seems to be suffering from some type of flu, and there's a snarl deep in my throat that makes me sound like a cross between Brenda Vaccaro and Louis Armstrong, I've been thinking about an old physician I really miss.

Dr. Michael Sivak, long deceased, used to practice medicine in a modest little office on East 25th Street.

He was a man of few words and didn't waste any on kids like me. But Sivak was a genius at treating colds or sinus infections. My mother would send us to Doc Sivak, as everyone called him, after we'd been really sick for a couple of days and none of her home remedies worked.

Doc would peer into your ears, up your nose and down your throat, and then he'd grunt and start what we called "the treatment."

It wasn't pleasant. He'd pack your nose with cotton and then squirt a stream of some awful medicine through each nostril. You'd retch and gag, but after he pulled out the wet cotton, you'd feel better. Almost instantly. It was amazing. The next day, you'd feel like your old self again.

I asked him once what he called this miracle procedure, but he gave me a hard look and snapped, "It works, doesn't it?"

Even though he had little time for kids, unless they were sick, Doc Sivak was a great guy. At least that's what my father always said. They were close friends, and I have an image in my head of the two of them driving down the street in a really old car Doc owned -- a Model-T, or something.

When my eyesight faltered slightly, and the teacher sent a note home, my father took me to see Doc Sivak.

He conducted a thorough examination, repeatedly asking, "Better, or worse?" "Better on, or better off?"

When he was finished, my dad asked, "Well, Doc, does he need glasses?"

Sivak gave his standard reply: "He either needs 'em, or he wants a pair." I thought, who in the world wants to wear glasses? But you didn't argue with Doc Sivak.

Doc was old-fashioned in that he always treated members of the clergy and doctors' widows for free. They used to do it that way in the old days, but by the 1970s, it was a long-forgotten courtesy.

Forgotten by everyone but Doc Sivak, that is. An old lady in our neighborhood outlived her doctor-husband by almost 40 years, but Sivak treated her regularly and never charged a penny. Same with the nuns. I never visited his office once when there wasn't a sister waiting for treatment.

She probably had a cold and needed Sivak's miracle cure. We all could use it this year.

Here is the link:

GoErie.com: Good Morning - Flu season recalls memories of 'miracle cure'

November is National Alzheimer's Disease Awareness Month & Family Caregiver Month- Get A Perspective Already!

I blogged about an image a few weeks ago, but I never gave it out. We talk constantly and we quote constantly that latest number of victims. 5.3 million. 5.3 million. The Alzheimer's Association presents the updated figure for us all to see and quote. It keeps growing. 5.3 million. 5.3 million victims. I remember when it was only four million. It keeps growing. We throw that number around like a coffee table book. We know its a lot of people and its going to be a lot more people in years to come. How many people is 5.3 million people. Its about the same exact number of the population of the state in which I reside- Minnesota. It's a couple million more than the entire population of the great city of Los Angeles. For every man woman and child in the entire state of Wyoming there are 10 Alzheimer's victims. 5.3 million. Every single one adds up to 5.3 million, and so it goes. How many people is that?

If you could name every single person with AD, their first and last name, and you spent 8 hours a day non-stop with no lunch break reciting the names of every single person with AD in the United States, it would take you just about 366 days to do so.

If you could write down every single name it would take you about 2 years to list everyone. 5.3 million. We just throw that number around. We need to raise money and do something about it. We need to help our victims and our caregivers,and the years keep rolling by and the Alzheimer's Breakthrough Act keeps dying in every congress. Year after Year after Year.

We keep raising awareness right? What does it really mean. We have wonderful Gala's and walks and raise money for research and to help the caregivers and provide support right? Granted it is truly impossible to trace a dollar we donate to an Alzheimer's cause. Where exactly does it end up? I think the goal of raising awareness and conducting research and donating dollars is to find better treatments and find a cure, to stop AD, to support and HELP the caregivers. Maybe it is the only paradigm our society knows. Some day it will happen. I don't know how or when, but someday.

So for for all those caregivers right know, who are sitting up with a loved one, putting them to bed for the 9th time, helping them to the bathroom, driving them to the countless doctors appointments, struggling out of the car, or into the car, navigating the walk through the parking lot.... it has not happened yet. We keep raising awareness, but are we really? Is it really happening? Will the cure happen in our generation? Our children's generation? Our grandchildren? Tommorrow?

A lot of cures and discoveries actually happen by accident. Sometimes when we are looking for something else we find the answer.

5.3 million. We are desensitised to the meaning of that number. 5.3 million.
So if every person right now, that is stricken and dying from Alzheimer's disease as you read this, if every person could stand up and hold hands with another person with Alzheimer's, all 5.3 million, they could stand side by side, shoulder to shoulder holding hands. That 5.3 million person chain would easily stretch across the country unbroken, from Seattle to Miami, with no problem. Its pretty basic, do the math. 5.3 million. 5.3 million

5.3 Million
The Alzheimer's Chain.................

Book Cover-When Can I Go Home?

When Can I Go Home?

Niagara Press

Available March 2010

This is a copy of the front cover of my memoir about my mother's AD. It will be published in Feb 2010

Head Injury

So we should get more research into this area, thanks to the NFL. As it turns out people with head injuries develop more amyloid plaque in their brains. No one knows exactly why. The thinking is still somewhere in the fact that the enzyme(s) that breaks down amyloid may be faulty, consequently the amyloid continues to build up. That thinking may be right or wrong, but it is where a lot of the focus and theory at this time still lies. Exactly how that relates to head injury is not known.

Back when my mother had Alzheimer's in the early 1980's. my family and I were always asking why. How did this happen? Why did this happen? Remember back then Alzheimer's was not a term most of us were familiar with. I remember a lot of talk about my mother's head injury and maybe that had something to do with it. We never knew, but we speculated. We still don't know.

In 1933 when my mother was sixteen years old, on September 10th of that year to be exact, she was involved in a car crash. She was a passenger, and on impact got ejected from the vehicle. She flew a long way out of the car. I remember her telling me when I was a child that she flew about 50 or 60 feet out of the car. She actually landed in a pile of cinders and that probably saved her life. She had a fractured skull, and was comotose. I don't know how long she was in a coma exactly, it might have been hours or a couple of days.

I know she was back in school within a couple weeks, which I just figured out not to long ago from looking at her old scrapbooks. Some jerk teachers in the 1930's at Academy High School in Erie, PA even gave her incompletes and less than spectacular grades in a couple subjects, as I studied her report cards from that time. You could actually see the decline in her grades that semester, but then they came back up.

I remember over the years she used to get a lot of headaches, when I was growing up. But then again a lot of people get headaches, but who knows?

Did this accident, from which she recovered apparently pretty quickly by today's standards have anything to do with increasing her chances of getting AD? It happened 45 years before she was diagnosed. I know in this day and age, that with a fractured skull and an injury like that, most people would be out of school for the year. We may never know.

The NFL may help us understand this question some day. I hope the issue does not die out. It may be more significant as a factor than we have been thinking over the last 15 or 20 years.

Alzheimer's News.

So many things to talk about and so little time it seems.

There is the new data suggesting that dysfunction in the realm of visual-spatial reasoning in the brain may be one of the earliest signs of AD, even before loss of short term memory becomes apparent as an early sign. Not a new concept, but important to revisit and break it down, and an important area for much more extensive research. One thing that comes to mind is this may be a significant factor in why many AD victims are prone to more falling even in most early stages. (more than any of us realize)

Research study out of Toulouse, France finding that victims with AD and co-existing Diabetes actually had somewhat of a slower rate of decline in mental status scores compared to victims of AD that didn't have Diabetes. This one is new and it is one where you really have to look at the study and design and the actual statistical significance. I would say we really need some more work in this area before drawing and major conclusions, as to what or why, but as far as I can tell this has never been found, or for that matter even looked for before. Interesting study.

Then the biggest hyped-story related to AD, head injuries and the NFL and higher rates of dementia. This is the biggest story because in our popular culture, there is no question that Americans care more about the National Football League than Alzheimer's Disease- (unless of course it affects you personally)- This one is definitely not a new idea, previous history of head injury has just about (seems like forever) been considered a risk factor for AD. We just got caught up in other things in the 90's and 2000's in regard to AD and risk factors and put this one on the back burner for awhile. Now it is back. So it is a lot about the NFL but anything that increases awareness we will take. Right?

The toll of Alzheimer's

What does Alzheimer's do to a family? We know about the financial toll, the cost of caring for somone with AD, usually met by family. We know their are terrible and unconscioinable inadequacies in reimbursement by third party payors, insurance companies, public or private, for paying for someones care with AD. There is no decent or ethical reason for it.

What about the toll to the caregiver's health. It is a fact that primary caregivers, have more health problems and such ailments as major depression, compared to somone in the same age group whom is not a caregiver.

What about the toll on the family? It often leads to heartache and strife. among family members, among siblings, over making the best decisions for their loved one with AD. AD sometimes tends to divide and conquer families.

What about the emotional and spiritual toll? Do we have enough to make it? Things are never the same when you have a family member with AD. Death is death, and things are never the same after loosing a loved one, any disease that mames and kills is to be depsised by humanity. We try to conquor it back.

What is it about Alzheimer's?

One of the greatest joys is a new born baby, a infant gorwing into a toddler in front of our eyes. A little baby smiling and the promise of hope and a future brings joy and a smile to most human beings.

AD and the assumption of the disease is basically the opposite of that. To see a full fledged human being in their fully developed self, slowly devolving, being robbed of their mind and personality, their essence, their ability to love and laugh, to feel... it is remarkable.

It is amazing that given the toll this does take, that families' spirits and souls survive such a diabolical entity. To witness this in a loved one and to go on is a true testament to our very basic nature. The nature of humankind.

Cardiac Tests

Just finished, a cardiac stress test, got my heart rate up to 103% or 176 beats per minute. This was scheduled a long time ago, but I had to keep putting it off, after the scooter crash and breaking my face. Now I get to go to work.
My father had heart disease and died at age 62, when I was sixteen. My mother was diagnosed with AD about a year after he died. Hence the cardiac testing with the family history. Sadly, tommorrow I have to get an ultrasound of my aorta, and kidneys. One of my kidney functions is elevated, which might be from high blood pressure, so I have to get that checked out. Then on sunday I get to collect a 24 hour urine, and turn that in monday A.M. and get another blood test then.
I despise being a patient, it is so hard to switch roles from being a patient to being a doctor. The whole process of being a patient can be so dehumanizing. Not so much seeing the doctor but everything else around it. Dealing with people in health care, that shout out your address, nice HIPAA practices, the waiting room, the parking, everything.
Its kind of ironic, when I am away from work for more than two days, which hardly ever happens, my blood pressure is normal, but when I am at work, or dealing with being a patient myself, it is way, way up. Unfortunately, I have to get on a BP med also. I wish I could say being a patient makes you more empathic and a better doctor, but I think I already have a line on that. Being a patient just simply kind of makes you feel bad.

The book "When Can I Go Home" is coming along, current work is making sure the ancient photographs for the book are good.

Alzheimer's, books, blogging, publishing,

I just found a really nice blog by Helen Ginger, called Straight from Hel http://straightfromhel.blogspot.com/ Helen is a freelance editor and seems to have been around the publishing biz for quite awhile. Moreover if you read the comments below a couple posts ago, Helen has survived the battle of AD in some close family members.

I don't know why I and so many others have a need to write about AD, our memoirs and our experiences. I know the experience is perhaps one of the most isolaitng things anyone would ever have to go through. As a caregiver, you want to cry out to the rest of the world "DON"T YOU GET IT"
Joe Potocny http://living-with-alzhiemers.blogspot.com eloquently and without sugarcoating things covers that isolation and lonliness quite handily in his blog.
I finished Lisa Genova's book Still Alice a couple weeks ago. It is a NYT's best seller. It is quite fascinating that this book is a work of fiction. She is an incredible writer and the book was extremely ENJOYABLE and went fast for me. She gets a lot of praise for "getting it right" and has to be commended for raising awareness of AD. In the end it is a work of fiction.
I would love to see somone like Joe whose life is not a work of fiction end up on the NYT's best seller list. Joe has dementia.
It may be true that the world, the rest of the world is not ready for non-fiction. Maybe it has to come in increments. Still Alice was so well written, it was enjoyable, it was infomative, it made you hopeful. There was lots of improtant info in there. Not all the info, but important info. But the book did not make you cringe; to psychologically shift in your seat uneasily. Perhaps for all the people not directly affected, it did make them uneasy. Uneasiness makes people feel "icky" and uncomfortable, it does not raise awarenss. You shy away from it.
I wrote my book When Can I Go Home? over quite a few years. Originally it started out wiith a motivation to be heard, to be understood. That motivation shifted from the lonliness of an Alzheimer's Caregiver, to the Lonliness and need to be heard from a physician's point of view. The so called 'other side'.
I couldn't end the book. It goes on. Then I realized through all this technological blogging, that the real ending was that AD goes on and we are all connected. Alzheimer's is getting us faster than we are getting it, I'm sorry to say.
I did finish the book, and I hope it can bring people hope and maybe help them deal with that uneasiness that makes us shy away from thinking and talking about the disease, and consequently as a society doing something about it.
Like all Alzheimer's memoirs, it is profoundly personal and intimate, an extended relative of mine, who is quite a writer, and a product of the internet age, told me maybe to put the book away in a drawer. It is so personal and intimate, a self-intrusion upon my own experience, an exhibition for the world to see. I almost put it away. When I looked around on the internet world and saw the relatively small sample of what is really going on out there with AD, I relaized I was going to carry through and get this memoir out there, regardless of my original motivations. Every Alzheimer's story needs to be told., all the non-fiction out there. I hope my book and every memoir out there that needs to be written, will move past the embarrassment, or shame or humiliation that we as caregivers impose upon ourselves, (with the help of our 'empathic' society of course). I think we all could use a nice grant to study the embarrassment and shame and humiliation a caregiver or a victim struggles with. I don't see that happening though in health care reform. Just think there a five million potential blogs out there about the reality Non-Fiction of AD.

Honest Scrap Award.

Thanks to Lisa Gurney http://lgurney.blogspot.com/ for passing on the Honest Scrap Award.

She writes a candid, and heartfelt blog about her mom who has dementia. It is called My Life As A Daughter.

Her blog is witty and rather spiritually uplifting, yet without really trying to be spiritual. It covers that terrbile, somber topic of dementia that we all hate. But although we all hate Alzhiemer's, it is hard not to love her writing.

I appreciate her blog and her writing, and for me its quite an honor for a writer like her to pass this on.

Thanks Again Lisa.

Redefining Dementia as a Terminal Illness????

Wow! Wow! and Wow!. We are redefining dementia as a terminal illness. Hello, this is not a new idea or concept. It has been known just about forever, by anyone who treats AD or any family who has lived with a loved one through all the stages and the end of the disease.

It does illustrate a pathetic point about our society, With a disease that affects some five million people, this is not a well known fact. We don't like to think or talk too much about dementia if it does not affect us directly. If it affects us directly, others that are not affected don't like to talk about it to us. So therefore we can't really learn about it from each other. Thank God some people still read TIME Magazine.

Now what's even more sad and pathetic is that many physicians who perhaps don't treat this population and this disease don't know this. Hence arguably the most prestigious medical journal out there, the New England Journal of Medicine publishes this study. It is big news ...I guess. At least the media will jump on it.

Now another key point is this. Thinking along these lines, there are some 47,000 people who die from AD, each year. I STRONGLY, STRONGLY feel that this number is grossly underestimated.

Why? Big secret?? A lot of docs don't like to list Alzheimer's as cause of death on the death certificate. WHY?.... My God its not like it is taught in medical school that dementia is not a fatal illness. I'm pretty sure most students in medical school over the last 20 years have been taught somewhere that AD IS fatal.

Now in thinking about this TIMELY article even more.... there is no question and no argument that we need more palliative care. WE can't cure it. It is terminal. Is this a new concept? NO.

Do families want to hang on and be aggressive in treatment? YES. SOME do. Not all. Are families that hang on and want everything aggressive done bad people and bad families?

Of course not, but they do deserve to have an empathic conversation with their doctor about the last stages of the disease. They should not be considered bad because there grief leaves them in a not so politically correct realm. Is palliative care okay? Is it okay not to be aggressive in treatment? Of course it is. ... and its politically correct, what a perk!

Have these discussion been taking place, by GOOD doctors and chronically grief stricken families for years? YES...... long before all the political popularity and cultural buzz and media hub-bub and POTENTIAL economic gravy train for end of life counseling?

Is it politically timely? YES. Do politically palatable publications mean grant money?? Absolutely. But anything that studies and raises awareness of AD , We will take.

Finally, Finally something in the health care debate and crisis that has in a very convoluted way had a direct effect on increasing awareness of AD.

By the way that "end of life counseling" is not President Obama's idea, contrary apparently to popular belief. To actually get payed for it, is maybe new and this idea makes articles like this Time Magazine one below stand up and get noticed.

One other final thought. And this is in My Book. I Am finishing my book. My mother died 22 years ago from Alzheimer's. It is awful and you go on....... the reason that I never finished my book in recent years by the way, is that I never had an ending.

The effect and toll Alzheimer's takes on family members, never really ends.

The end of my book will be done. When I see articles like this in Time and this NEJM study, I realize my mother's story, my becoming a physician while she was dying from AD was just a begining. It is just one true story. There are millions and millions out there, and since my mother lived through it and died from it, not much had changed in 20 years, with what we really know about it. We have come so far but yet are still barely scratching the surface.

So here's that final thought for this whole post, its in my book..... it gives perspective......

You know what...... read the TIME ARTICLE below this post first, then I'm going to give you a perspective, an image, a visual that to the best of my knowledge one else has yet given in regard to this disease......I promise.

Redefining Dementia as a Terminal Illness

Redefining Dementia as a Terminal Illness

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.

Writing About ......... Headaches

A week has already gone by, since the last blog entry. It has been four weeks since I broke my face in three places. I have been back to work for about three weeks. I can wear long pants now, since the wounds on my legs are closed and just scared now. I have a big scar on my forehead that actually is not totally healed yet. I still can't chew food on the left side of my mouth, as the pain in an upper tooth is excruciating, radiating up into my head.

When you fracture your maxilla bone, the one in your face below your eye, there is a branch of a nerve, your fifth cranial or trigeminal nerve, and a side-branch (inferior orbital) that comes through that bone and inervates or provides sensory to a part of your face and upper mouth. That may be causing part of the problem. When the bone is broken the nerve is traumatized. If the nerve is not severed, (no way to know for sure), the feeling should return and numbness should resolve in about 6 months. It is strange become my upper teeth feel like a dentist’s Novocain, yet it also hurts.

The worst part is I have been getting headaches, in my right temple and forehead. It is only four weeks, since the fracture, and the bones should heavily be into healing right now.

This is the toughest part, you look sort of healed and you are back at work, and all the actual injury stuff is over and you are supposed to be normal, except you have headaches and you can’t chew. Yet with the exception of obvious scars, you are supposed to be normal and better, even though things are not the same and I have lousy headaches.

The process is exactly like grief. When all the excitement of a wake and early days following a death or loss, there is lots of diversion and activity. Then it all stops and you are supposed to go on.

With my injury there were lots of doctor appointments, and my face looked like hell. Now the doctor appointments are less and less, and more and more of "well its going to take a really long time" to heal. You have to go back to life and keep going. Just like grief. You know things will never be exactly the same and you wonder if the pain will ever stop.

Daily life pressure ensues. If I do not go to work every day, I can not pay the heat bill, (it snowed in Duluth last night), I can not pay the mortgage and I can't afford to get the snow tires on.

I know it is taboo for a doctor to even discuss paying the bills. The indignance this provokes in most people is so prominent, if you even go near the subject. We collectively embrace a "romantic prejudice" about "rich" doctors.

Being that I am a private practice psychiatrist, I have no grants or funding to cover things. A private disability insurance policy is a bigger joke than the cost of health insurance. So that does not exist for me. Yes I suppose there are some doctors in certain specialties that can afford to take a month or two off or three, but maybe not so many anymore. But I won't complain too much about that pressure, because it inflames people and promotes indignant feelings and bias and stereotypical prejudice against the profession, so I am not allowed, so I won't complain or even try to make people understand. I am not allowed to complain about that.

Moreover, since I am in a private practice, my patients depend on me to be there. If they can't come to see me, it is pretty hard to go and get another psychiatrist in these parts; you have to wait months and years. My patients depend on me to be there, so I will be there for them. In psychiatry, if you are doing a good job, it is about the relationship, the therapeutic alliance. You don't just go to a doctor and form one, it is like any relationship in that it takes time to form a trust and alliance and understanding. Any good doctor knows you give 100% every day, headaches or no headaches. It is expected and anything less than 100% to every patient is not adequate.

The system in my state and many places around the country is really set up to drive doctors out of private and small practices, there is a reason I am the only remaining private practice psychiatrist in this NE region of Minnesota. There is a reason there are few young doctors choosing the specialty of psychiatry, less than ever. There is also a reason people wait a really long time to get to see a psychiatrist. Yet I remain committed to the value and ideal of choice and a private practice, as it turns out many patients do to. I will do that for as long as I can.

The other part is I remain committed to access to care, it is a constant flux of new patients, and I am also constantly working with new people attempting to build an alliance. It is not just about the meds, remember if a person does not trust their doctor, the treatments are not very trusted and usually don't work as well without a reasonable therapeutic alliance.

Unfortunately we are a society based on mistrust more than ever. The virtual and technological world we now live in breeds mistrust. It breeds more of immediacy and an instant need for gratification and an entitlement. “I want it and I want it now”. “You better fix me now or else”.

We are more wounded and traumatized as people and a society and more impersonal than ever. Try to tell anyone under thirty that social networking is still virtual and not the same as real human interaction and you will get a profound emotional tirade.

We still need human connection in our lives, our families, our professions, our communities. The human connection between a doctor and a patient has been crucial since the beginning of time, yet there is not too much rhetoric given to this idea in the proverbial health care debate, now is there?

WRITING ABOUT ALZHIEMER'S

Does it help to write about AD? I think it does. I think it is cathartic and healing for any caregiver.

Remember one of the most profoundly difficult things for the caregiver is the sense of isolation. With 5 million people affected, the caregiver is certainly not in a unique predicament. However on a day to day basis, there is so much to do, so little time, so many moments of pain and frustration, sometimes the caregiver feels like they are going crazy. Sometimes there is little time for a break. Sometimes there is little time to actually talk with others, to process feelings. It is so important to do, for the caregiver to take care of themselves, yet we often do not do it.

Writing about the experience gives perspective, it is a way to increase clarity, to provide reassurance form within. Reassurance is so very important, yet there is very little of it often available to the caregiver. Writing about it, gives self-reassurance.

There are so many stories that need to be told. So similar, and yet every one of them about a unique person and family.

The publishing world does not partivcularily like these stories. They are not petty or marketable always, and it is always about the bottom line in our me-first society.

One can look at all the stories and memoirs written, "self-published" through the intermediaries of entities like iuniverse, Xlibris, lulu, Booksurge, Authorhouse, and so on and so forth.

Caregivers want to be heard, they want to be understood, they want the world to know and understand this person they have loved and cared for, To speak out about the devastation.

Often the world seems at best non-caring to the caregiver, like anything else nobody seems to care or get it, till the disease affects them and their families directly. That is sad.

NEURO-IMAGING

Basically taking pictures of the brain. You can't see AD on a regular x-ray. You can see the bones of the skull pretty well, but AD does not affect bones.
Then we have CT Scans Computed Tomography hence CT. or CAT scan. A state of the art imaging technique since the late seventies. CT scanners are quite common now, but were rather a rarity on the late seventies. You can see the brain fairly well, and you can do these with or without contrast dye. These are quite good for diagnosing bleeding in the brain for example.
Then there is MRI, or magnetic resonance imaging. This became state of the art by the late 80's. You can see the brain really well with these.
You can take CT scans or MRI's just about anywhere in the body. MRI's are generally more expensive than a CT but you typically get a more detailed picture with an MRI over a CT. This of course depends on what you are trying to look at.
A CT or MRI does not diagnose AD however, you do see more atrophy or shrinkage of the actual brain as the disease progresses.
This shrinkage is not specific for Ad but it is very very consistent with AD. As the disease moves to advanced stages you see more and more atrophy.
The CT or MRI is one diagnostic tool to help aid in making the diagnosis of AD. But as noted in the previous blog, the diagnosis can never be 100% accurate at this point without looking at the brain tissue.
Other more sophisticated scans are the PET scan positron emission tomography and the SPECT scan, single photon emission tomography.
The PET and the SPECT are generally not mainstays, in the clinical world, as they are very expensive, however they are quite prevalent in the research world. These are the pretty scans that are in color. Unless you are affiliated with a big university or research center, you primary care or neurologist is probably not going to order one of these. These scans are actually better at not just looking at the structure of something like the brain but actually measuring what is happening, in different areas, for example which areas have more metabolism going on and activity, relative to other areas.

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.

ALZHEIMER'S DISEASE-HEALTH CARE REFORM

With all the health care reform debate, has anyone in recent memory seen anywhere in the media, print radio TV etc, President Obama actually mention the words ALZHEIMER'S DISEASE? Has anyone heard in the popular media any senator or congressman actually mention the term ALZHEIMER'S DISEASE? Any sound bite? Any comment? Just one specific reference? I'm sure there is. I'm sure I just missed it. There must be some unprompted reference somewhere with all this health care debate on AD.
I generally watch the NBC news when I can. I know there was a blurb on World Alzheimer's Day. Mostly in terms of the cost. Dr. Nancy S. did mention Health Care Reform and that AD was the "budget-buster". Given the number of affected individuals it would seem like this is a relevant sub-text to the health care reform debate.

getting out of the ER

So I got wheeled to another room and waited for the on-call plastic surgeon to show up. He finally did. He advised that I had a tripod fracture of my orbit. Three broken bones around my eye. The fractures were not displaced so there was no surgery or plating to do to hold the bones together. I asked him if I would have chronic headaches the rest of my life. He said lets not worry about that right now. I figured over a period of time the bones would heal, but I knew things would never be the same and wanted to know what the long term affects would be.

He proceeded to stitch up my forehead above my eye. About6 or 7 stitches, then my eyelid, those stitches were not melt away and would have to be removed in a week, Then my upper lip on the inside. none of this was very pleasant, the needle for the lidociane hurt, I had about 15 mg of morphine in me. My wife watched him stitch me up but then got light-headed and the plastic surgeon told her to go lay down on another gurney in the room There was a bunch of people in the room coming and going. My step-daughter was there, a tech trying to clean my knee, my friend and his wife, finally he moved to my elbow. Putting several internal and external stitches in.

My nice nurse who had been with me the last couple hours said good-bye as it was change of shift. I hated to see her go, as she was very kind and empathic. Now it was just about done, everybody left and I waited for somebody to come and discharge me. It was now about two AM. It seemed to take forever. Everyone had left except my wife and stepdaughter.

Finally some gung-ho guy in scrubs came in and had a bunch of paperwork. I said, "who are you?" I had to ask twice. He was the new nurse. He asked if I knew about Lorabs. I said I was a physician. He Said do you know about lortabs. I told him again I was a physician, he said, "so do you know anything about lortabs". Obviously we were in a power struggle.

I treat thousands of patients a year, who struggle with the addiction and problems associated with opiate pain medications. I did know about the pain meds.

I was already pretty beat up and did not particularly like this person who was being a narcissistic jerk. Like so many people that work in health care, he had a chip in his shoulder towards physicians, from what I could tell. Having a broken face, I was a pretty easy target to beat up.

He had me sign a bunch of forms, I could not see or read, then I went to the bathroom. I was dizzy and everything hurt. The nurse then decided to tell me about his sister who was in an psych hospital. In typical narcissistic fashion,the message was his pain and victimization was worse than mine. I just wanted to be left alone and go home.

but I had to reflexively be nice and tell him how sorry I was about his sister. Then I thought what a jerk this nurse was again. Unfortunately being a human being myself, the jerks stick out over all the good people that helped me at the ER. Being a narcissistic jerk who must dominate other people to feel better about himself, this health care worker nurse will never get it. He was too busy being victimized. Remember some great victims work in health care.

I had to go to the pharmacy on the way home, I was freezing and shivering, from the shock and the morphine. In the old days, not so long ago, somebody would have been admitted to the hospital for a week for something like this. I knew I had terrible road burns on my knees and arm and face. I knew that I would have to constantly drink fluids, since normally someone would have IV's for days on something like this. I was nauseated.

I made appointments that next week to see an opthomologist an ENT doc and an orthopod. I started spiking fevers every night. Finally a couple days later my orthopod put me on a week of antibiotics. He x-rayed my elbow and my chest, since I also had bad rib pain. My vision was OK, but I failed the visual fields evoked response test, which checks your optic nerve. I have to go back in a couple weeks to re-check since my eye was almost swollen shut.

I had to cancel about sixty patients, the problem with private practice, besides not having a 401-K or health insurance that costs 1000 dollars a month, when you work on your own, if you go down, your patients depend solely on you. I actually had to see one patient a few days later. I went back to work nine days later this past Monday at full time. I had to wear shorts because of the knee burns.

Now Things are healing a bit. I can't eat solid food, I have no feeling in my upper teeth or half of my lip. Basically on this type of fracture a branch of the trigeminal or fifth cranial nerve gets traumatized. The ENT doc was very confident that over time the feeling would come back.

My knees are still open wounds as is my arm. I get the stitches out of my elbow tomorrow.

My wife is doing OK except for her finger. It hurts very much. Her burns have cleared up nicely on her face. It is her right index finger and she is right handed, so that leads to problems. She has amazing fortitude.

being a patient

Somewhere in there I realized I had a head injury with loss of consciousness. I told my friend I had a broken zygomatic arch. That is the bone under and along the side of your eye. It is sort of the bony part around your eye. My friend said I didn't and I said I did, so he bet me. The Er doc came in and I told him I needed a CT (cat scan) of the head. Mostly I was terrified that I had a fractured skull and a bleed in my head, called a subdural hematoma. The ER doc said he was already going to get one, he also said I would get one of my face and neck. I remember being cold and shivering a lot in the ER. I started to come to more as I got wheeled over to the CT scanner down the hall. I was worried about leaving my wife who was in the bay next to me, and I wanted her to come with me. She reassured me she was OK and in fact was also going to X-ray to get her finger x-rayed.
When I got over to CT I started to come to a little more. I think I had an IV in by then. The CT went really quick. I knew there was nothing wrong with my neck as I sure could feel everything below that and move everything. But they had stuck a cervical brace on me to protect me from moving my neck anyway.
When I got back the ER doc said I had a tripod fracture of my orbit, basically the bone above my eye, alongside my eye and under my eye were broken. I asked about the head, what about cranium fractures, what about a brain bleed. That is the stuff that kills people when it is missed. The ER doc said no things looked OK, but was waiting for the radiologist to give a report.
The radiologists are the docs that you never meet and you get huge bills that insurance companies reimburse at rates of 20-30 times of what I make in the same time spent. You never recognize their names when they appear on the bill. I should have been a radiologist.
The ER doc would not take off the cervical brace while waiting for the radiology report.
I think the nurse who was pretty nice, (apparently I kept apologizing to everyone, for being so stupid and I was ashamed for crashing a motor scooter), kept hitting me with morphine through my IV.
I remember her standing over me and talking with my friend and telling him she was pretty worried about the laceration on my forehead.
Finally the ER doc came back and said we could take of the neck collar. I said, I told you there was nothing wrong with my neck. He advised they were calling in the plastic surgeon.
I asked who it was and if he was going to show up.
I then tried to listen to what the ER doc was saying to my wife in the next bay. She had lost her finger nail and had a fracture on the tip of her finger. I asked the ER doc if there was anything else and if she was OK. I think he said that she was.

back to being a patient

So I did not have to get CPR, I do not recall much, as my friend helped me up; apparently I was bleeding a lot. I did not even remember being on the scooter or exactly where I was. We went into the house, and apparently I had a towel and was sitting down, at any rate my friend ended up driving my wife and I to the ER. I remember bits and pieces of this, asking if my wife was all right. I remember being really worried about my 14 year old son. He was not even with us the entire evening, but for some reason I was worried he was somehow hurt in the accident. That was the worst uncertain anxiety I felt, I just could not cognitively get it into my head that my son was safe. It was not totally registering that I had a head injury; I was so in and out of alertness. I don't remember much about getting into the ER. Generally it is a horrible experience checking in for any medical care, I have always found it humiliating, impersonal and generally awful, as medical assistants snap at you, calling out your address etc. They have no clue as to how they affect the treatment and influence everything by those initial contacts.
It is something I am profoundly sensitive to, as that initial contact at the front desk check-in or phone call, determines a lot about how the patient will feel going in to see the doctor. Since I have a private practice, it is one of the very last few things I can as a physician have any control over. We have true accountability over how empathically those other health care workers at the check-in desk treat the patient.
So if you have employees of a larger corporation or public health care system or whatever, often there is little accountability for how snotty or nasty or impersonal they treat the patient.
The worst part is the patient will usually take that interaction into the doctor’s appointment. THERE IS STILL SOME MAGICAL BELIEF that all those other people who work in health care actually work for the doctor or are accountable to the doctor. IT just is NOT true.
In a few very rare instances, like my office, since it is a private practice, the staff is accountable directly to me. Regardless of how good or bad of a day they may be having, they don’t get to treat any patients in any impersonal or disrespectful way. The most interesting part is in a private practice, I am directly accountable to my patients; not to a bunch of physician-despising health care executives. Sadly the system is set up to drive any would-be private practitioner out of their practice and into a larger health care bureaucracy.
I will come back to this later. As it stands checking into the ER after the scooter accident, my mental status was clouded, I remember more when I was lying on a gurney, a few minutes later
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WORLD ALZHEIMER'S DAY-September 21st

Don’t Forget World Alzheimer’s DayTM , Monday September 21st. This year’s theme is:
“Diagnosing Dementia seeing it sooner”
This a trademark of Alzheimer’s disease International which is a Non-profit registered in Illinois.
Friends of ADI is a UK registered charity.

It is the Federation of 71 Alzheimer’s Associations around the World.

ADI notes to have official relations with the World Health Organization.

They Have Four Full time staff.

There are about 52 countries registered for World ALZ DayTM according to the ADI website.
Activities Range from Alzheimer’s Walks, to Conferences and Information Sessions.

Nepal for example is noted to be having a Memory Walk and Talk show

Poland is having a Street Campaign, open doors, and a picnic.

Cuba is having a memory walk in many cities including Havana, national and local meetings.

Canada is listed as having a national media campaign issuing a call to action to federal parliamentarians, online survey, Coffee Break® fundraiser across the country.

We of course in the States and the UK are having our memory walks mostly occurring now in September and Early October, usually on a Saturday.

The Alzheimer’s Association lists 23,357 walk teams so far across the States with a Goal of 30,000 teams.

The Link for ADI is: http://www.alz.co.uk/
Of Course the Alzheimer’s Association link is www.alz.org/

You can find a local walk in your general geographic vicinity.
Raise Awarenss. Raise some money for a rightous cause.
So Get out and Walk already for crying out loud!

Alzheimer's Bill politics

A brief interruption on the "being a patient" odyssey
I think I should throw in a little AD news, on what our politicians are doing to stamp out this disease:

A little update from www.govtrack.us

There is a Bill in the Senate - S.1492 sponsored by Barbara Mikulski-D from Maryland on July 22, 2009. (30 copsonsors) It was read twice and referred to the Committee on Health, Education, Labor and Pensions. On that same day 7/22/09.

Senator Mikulski is 73 years old, by the way.

There is a Similar Bill in the House- H.R. 3286 Sponsored by Ed Markey –D- from MASS. (39 cosponsors) This bill was referred to the House Committee on Energy and Commerce. This bill was brought forth and referred to the committee on the same day that the senate bill was introduced July 22, 2009.

Congressman Markey is 63 years old.

This is the 111^th Congress for the Senate and House, The 108^th, 109^thth (going back to 2004) had similar bills in both chambers. All of them were marked Dead and never got past the committee.

being a patient

Maybe it was a rock, maybe I hit the front brake maybe trying to turn, I just don't know, it was over in a split second. We could not have been going more than 10 miles and hour, but with the forces of gravity and inertia, you don't want to stop something with your face. I don't remember the fall. apparently I was unconscious for about a minute. I have never been knocked unconscious before for this long. I never had a traumatic brain injury. I never had a conconussion like this. It was dark and we were halfway down the driveway in a wooded area. My wife does not remember the fall either or exactly what happened. She remembers something was terribly wrong when she felt her face scrapping the gravel. She called for me, but I did not answer. She crawled to me and I was lying face down. I didn't answer. She screamed for my friend who came running, probably taking twenty seconds to get to me. He did not know if I was breathing and although no one knew if my neck was injured he had to carrefully roll me over, to make sure I had an airway. Apparently he did, and somewhere at that point I came to and started to move around.

Surviving being a patient

I want to preface my accident with this. A couple weeks ago, I was with my son in Moab, we went canyoneering and repelling, mountain climbing, rafted and kayaked and swam the Colorado River, 3 hours of horseback at the bottom of monument valley, hiked Hovenweep, climbed in the Abajo mountains, explored ancient ruins, even pilgrimaged to Four Corners, all in a weeks time, I did not get hurt. Granted for a guy crowding fifty, I had my opportunities, my fourteen year old son did fine of course. Mountain biking on the red rock, slick rock I crashed into a pricker bush, on the edge of a canyon cliff, but other than embarrassment and a few scrapes-no big deal.

So I come home and a feel later, have a nice dinner with my wife at a friends house, and he shows me his toys in his garage. One of them was a motorized scooter. Now I have only driven motorcycles a couple times in my life in college, and I figured this thing is more like a bicycle. How hard can it be?

I went around his driveway, as he lives in the country, and still not knowing what I was doing, thought I had it sort of figured out, I came back and told my wife to hope on and we took off, and that's about all I remember.

We were in gravel and these things don't do so well on gravel. I don't know if I was trying to turn, or hit a rock, but somehow ended up landing on the left side of my face. No helmet-everything we teach our children not to do- it was only his driveway,

Scooter Accident-Accessing Health Care

It only takes about a millisecond for things to go wrong and have a bad accident, facing death or severe injury. We do live in the moment, we can not really control the future and the past has already happened. Despite all this "pseudo-intimacy" or the Internet, which is really immediacy and not intimacy, we are still human beings who feel pain and joy, and there is simply no way the immediacy of the Internet can ever replace the support, compassion and nurturance one human being provides to another. I think the connectedness and the decrease in the feeling of isolation the Internet gives us is phenomenal, I think when we expect something else out of it, that is when it leads to problems. It is hard for me still to grasp how the generation under age thirty approaches the Internet as such an intimate thing, with all the social networking and such. We don't have to shake hands anymore, or look someone in the eye, or be in the same space as someone, and yet kids under age thirty consider this social networking intimate. My wife and I are reading a book by the founder of google, it talks about this a lot, generally putting a positive spin on everything. The bottom line is the Internet is changing society probably for better and worse.
Through all the immediacy and attention and exposure and support people crave, we are more exposed than ever. Yet paradoxically we are more invisible than ever, since everyone will be on the Internet and networking eventually, who will notice?
I am reminded of all this, as I was recently lambasted by my niece for "using her" to forward my blog address to people on a an email forward she sent me with 30 people, whom I did not know, who were in her address book. I thought I would just publicize the blog if anyone was interested. I was not making money, hurting or exploiting anyone. But apparently this is an emotional and Internet attrocity . I never really knew. Of course I apologized to her, but for the life of me, I still don't understand the new age of all this. In doing this blog I am still learning.
What does all this have to do with a recent scooter accident?
Well last weekend, I got really hurt. I have had to access much health care over the last week, and it has not been pretty. It is extremely personal and intimate. I debated all week whether or not to blog about it. What would be the point? Interesting read? Catharsis? It is hard for me to do any major action without considering the utility and if it would help anyone else.
Well as I see it, AD is related to health care, health care is a hot immediate topic, I had a head injury, etc. Anyways I think I will talk about it. ...