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.