April 2008

Greetings

Thank you for opening up this email. This is my second attempt at a newsletter. My name is Richard and I have been living with the diagnosis of Dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome for the past seven years.

This month’s musing of mine are all from the same song, just different verses. I think it important enough to consider and reconsider the way we look at, understand, research, and respond to the diseases of dementia from a variety of different perspectives and in a variety of different ways (at least that is the rational in my own mind for including these particular recent writings in this issue).

For me answering the question “What’s it like to have Alzheimer’s disease?” involves thinking about, researching, reacting to the feelings, and wrestling with the content of this song most every day of my life.

I welcome your response to my concerns, my suggestions for change, and my call for each of us to act different, to act up, to speak out, to reach out, and to LEAD.

Thank you for taking the time to sing these songs, and see if and how they resonate in your mind and heart.

Richard

When someone I know dies, and they had been living with the diagnosis of Dementia, probably of this or that type…

Charlton Heston died last week, I didn’t know him personally. I only knew him through the “make believe” of the movies. Someone found the press release he read announcing his diagnosis of Alzheimer’s disease, and I just re-read it. To me it was in effect his announcement of the beginning of his “long good bye.” Reading it reconfirmed for me that many, too many individuals, even those diagnosed with the disease see the diagnosis as the start of a long ”good bye.”

We announce and prepare ourselves and others to the fact that we have already started to fade away. It starts the moment someone in a white coat tells us “You have Dementia, probably of this or that type, and certainly with these features.” My reaction and apparently the reaction of Mr. Heston to these words was I’m on my way out! It’s all downhill from here! Don’t look for me anymore; I’m going to be busy fading away and not being me.

We are seldom seen post diagnosis. We seldom speak up or speak out post diagnosis. How many famous people have you seen or heard from after they announced they had been diagnosed with Alzheimer’s disease? Where do they go? What do they do? After all we are fading away. What could we have worthwhile to say? Could we possible grow as a human being after we have been diagnosed? Perhaps we will become someone we would be embarrassed to be, were we capable of appreciating who we had become!

In reality who is embarrassed for whom? Will I be embarrassed for ourselves? Or will other people be embarassed for me? How do you know I’m not accepting, perhaps even contented with who I am today. Even if I’m sometimes frustrated; even if I’m sometimes agitated; I’m still me!

Isn’t it time others who don’t live with the diagnosis focus their energies on understanding, appreciating, supporting, enabling those of us who do live with the diagnosis as we are in the present moment? Don’t concentrate on who we were? Don’t try to convince us we should hang on to yesterday, or last year, or fifty years ago - especially when we are struggling to understand today!  Wouldn’t it be easier to love someone we believed was a whole person, instead of someone half empty?

Many people with dementia and many caregivers keep saying “good-bye.” I, and I honestly believe every other person living with and in dementia, need to hear, feel, and be supported by saying “Hello!” and hear others say to me “Hello.” I need others to answer my “hello” with today - not yesterday! This is not an issue just for those in the late stage of the disease, or just for those in the mid stage of the disease. It starts the day the diagnosis is pronounced. Collectively, and individually we need to find the courage, the support, the understanding to say “hello” to ourselves and each other.

Every day! Every day! It’s that simple! It’s that easy! Reduce stress, increase the quality and quantity of the love you give and receive, enjoy and live in today.

“Hello”

Richard

Is Alzheimer’s disease Real?

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!

Eariler 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 diease.  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 dosen’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.

Become a Difference Maker!

The best and most important action we can take (or at least this is what I believe) is seek each other out. Find/form/try groups, people, organizations, services, and if they aren’t working try something or someone(s) else. But, keep trying to find solutions to the psycho-social-physical-real-imagined problems which come attached to the words “you have dementia, probably of this or that type.”

Like the military-industrial complex, that defines how best we should “lead the world” through military superiority,  the drug company-Alzheimer organizations complex has defined for us what is going on between our ears and how best we should respond to it. In the longer run (although they have said for more than 20 years the run is getting shorter and shorter) research will produce a cure for the disease - so they tell us. More money spent on research should shorten the time it takes to find a cure. More money is by definition better than the same or less, according to their tortured logic.

And what of us living in the disease, condition, what-ever they end up calling it? Should we too be patient? Should we advocate more funds for research? Should be follow the leaders into a world without Alzheimer’s, even though we ourselves are living in a world with Alzheimer’s?

Should we watch as more and more dollars are thrown at researchers who sit with mice, models, theories, guesses and hopes? Or should we stand up and advocate for more psycho-social research into how we can better cope with our symptoms?

For me it isn’t even a close call. I’m not advocating giving up bench based scientific research, but clearly the people who allocate our tax dollars for research, the people who ask us for our own money to “support people with Alzheimer’s disease” have lost site of the consequences of this disease, have long held prioities that place research before people, tomorrow before today. One National organization spends sixty cents + of every dollar it raises on supporting the search for a world without Alzheimer’s. That leaves forty cents to cover overhead, fund raising, advocacy, other National initiatives, and oh yes with what is left a few cents for dealing with the world with Alzheimer’s.

That’s back-asswards! It’s people who don’t have the disease focusing more on other people who don’t have the disease than on people who do have the disease. What am I missing here? It’s just plain wrong-headed. And now along comes these two authors who suggest it’s more than a case of the wrong priorities. It is a case of misdirected, misspent efforts based on false assumptions. Assumptions promoted by individuals who have much to gain by promoting the assumptions. These aren’t evil people, it’s just the unintended consequences of their well intended actions produce more problems and less solutions for the people for whom they claim to champion.

Let’s all stand up, all 5 million of us (I realize some may need more support in accomplishing this than others, but let’s all at least try.) Let’s let others arm wrestle over brain aging vs. a healthy brain under attack by a disease which is amenable to a cure.

Let’s ask for, demand more support and research for our issues, today. Many of the national and local organizations which raise money in the name of our disease have decided for us that the research for a cure is much more important (look at how they spend their money), than supporting us, responding to the fears which plague our hearts, minds, and families.

It’s time for an immediate change from a primary emphasis on the search for a cure to a primary emphasis on the search for evidence based strategies and behaviors to support individuals and families who struggle with the symptoms of dementia every day.

Currently the Alzheimer’s cart seems full of eager researchers, publicists, spokespersons for Alzheimer’s organizations whose primary purpose is raising funds to distribute to those folks standing in the cart, well intended governmental officials and relatively well off donors who want to find a cure for this disease.

Behind the cart, way behind the cart, are 5,000,000 horses all of whom are living with and in the disease. They are waiting for the cart to move in their direction. We are impatiently waiting for those standing in the cart with their models, theories, mice, rats, and hamsters to find a cure. Many horses have died over the past twenty or so years waiting for the cart to move, to produce something(s) of value to them. The rest of us still stand and wait. We are told to be patient. We are from time to time told results are just around the corner. The pipeline (whatever the hell that is) is full of pills to help us. We should just open our mouths, and keep them open at the end of the pipe and swallow whatever falls out. The most recent pill that fell out of the pipe fell on the floor because it didn’t do what its inventors/researchers/publicists claimed it would do.

Still, all 5,000,000 + of us are asked to stand and wait.

Write someone. Call someone. Speak Up! If we don’t speak out for ourselves, who will?

Richard

Is It Me or the Disease?

When I act up, act out, forget, repeat myself, become agitated, tread on other’s boundaries, swear, become confused, act bewildered, fall asleep with my clothes and glasses still on my body and face respectively, slur my words and talk slowly - especially late at night, wander in mind and sometimes in body, begin to speak in the middle of thoughts instead of at the beginning of them, can’t seem to understand what others are trying to tell me, lack the insight and empathy I once prided myself on having for the feelings of others, get mad for reasons no one seems to appreciate - much less understand, and did I mention forget?

I’m not clear there is a difference between the two. I’m not sure even if I knew, I could remember the answer. And if I knew and remembered what different it would make in my life. I’m pretty sure it is the wrong question to ask. I’m pretty sure I should do more of what I said I was going to do more of the day I was diagnosed. I’m real sure I should practice what I preach.

Live in the moment. Enjoy today. Ask for help. Be more open with others about how I feel and what I am thinking. Don’t look back to see what I have lost. Discover and use what I have today. Let tomorrow take care of itself. Trust more. Love more. Forgive myself and stop expecting others to be more like me than themselves.

Is It Me or the Disease?

It’s both. I’m both. I’m neither. I’m me! “Hello”