Last week I was speaking in Ohio and someone told me the authors of The Myth of Alzheimer’s (St. Martin’s Press 2008) were also speaking nearby at another conference. I secured a ride over to their conference and listened to them speak, WOW!

Earlier I had been reading their book, at the very same time they were reading my book. We both wished we could speak to each other.

I spent the afternoon with these two brilliant, thoughtful, thought-filled, caring, and very sensitive brains, authors, human beings - thinking out-loud, listening, talking, and getting to know them.

The provocative title of their book, The Myth of Alzheimer’s, is of course a double edged sword. It probably draws as many people to read the book as it draws as many people to not read the book, but think they know what it is all about by the title.

They challenged me and my beliefs about the disease and how I think about the disease.  They like me are searching for answers to questions which seem to come from a growing consensus that the claim/hope/hype coming from the pharmaceutical industry and organizations deeply invested in the idea that Alzheimer’s is a discrete disease and there is and will be a pill to cure it, is not in fact true!. All I others and must do, they keep shouting, is to spend enough money (NOW!) to discover (stumble across) the formula for the pill that will cure the disease. And in the mean time, they tell me let’s also spend more money on pills to maybe slow-down the progress of the disease (even though no one really doesn’t know how or what we mean by the progress of the disease, nor how to measure it).

These authors are in my opinion and I think in theirs also, works and minds in progress when it comes to thinking about, conceptualizing Dementia and it’s many forms.

When I was a young man I was always amazed that whenever the Beatles came out with a new album it reflected exactly where I was. We (they and yours truly) sort of evolved together, but many miles and dollars apart! These two researchers/thinkers aren’t modern day Beatles, but they sure parallel my own thinking process about Alzheimer’s disease, symptoms, syndrome, condition, and/or whatever and however you want to characterize the condition!

Although the bottom line for us who are somewhere in the midst of the disease process is how to cope with it, how to maintain a sense of purpose, how to stay in the moment - in today, it is useful to understand how others have framed for us what is wrong with our brain vs. the brains of others. The book wonders aloud how and why we got where we are. What part of this process is generated by what others tell us, and what part is generated from within? And how much of what is generated between our ears is a natural part of aging, and how much is an actual disease? And how do these two streams interact? Are we victims of a disease, or participants in the natural aging process of the human brain that varies from person to person depending on their genes, education, what they eat, the air and water they inhale and drink, and on and on and on.

To me, it is irrelevant if you fully agree with their interpretation of the science of dementia. What is right-on is their understanding of the psycho social impact of being told you have the disease (or condition, or symptoms, or syndrome) has on people, more specifically yours truly and his family and friends. We have allowed ourselves to be captured by a medical model which just doesn’t fit, doesn’t serve us, and can’t serve us.

We have swallowed messages from drug companies and researchers, and journalists, and organizations which claim to represent our interests that are full of carefully and creatively worded claims that are based on assumptions about how the brain works, why it works a certain way, and how that causes a condition, a set of behaviors we have labeled as a disease.

These assumptions are not necessarily a part of “the big picture” of how the brain works. There is no big picture. To start to paint small pictures is dangerous because we still have no firm, research based, universally accepted understand of what the big picture looks like. The picture is not like an x- ray. It isn’t one or two or even three dimensional. It’s not fixed. It is interactive, and it is dynamic in ways we only speculate about.

The message, the value for me from this book and my conversations with these thinkers is -Pharmaceutical complex and the organizations which claim to support us and the elimination of our disease as the reasons for being–They like me and many others don’t have answers, solutions, even the right questions to ask, to think about, to wish for, or most certainly we don’t have fact based answers to our own questions.  I believe it would be best for those of us living with the diagnosis to understand that no one has the answers to the questions we ask.  Answers that are fact based, and generally accepted by the medical and research community. We are left with searching out our own answers and working them out with each other.

~Richard