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.