March 2008

Greetings!

I am Richard Taylor, and I have been diagnosed with dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome.. Thank you for opening this email.

Welcome to my occasional newsletter. For the past two years I have promised myself, and told literally thousands and thousands of individuals engaged in living with or supporting someone who has dementia. that any day now I would replace my occasional mass emails with a newsletter template.

Here it is!

Richard

Is More Always Better?

For more than 20 years the organized elements of the Alzheimer’s support community has been leading the cry for more funds to expand research on the causes of the disease and on the search for a cure. Several years ago some suggested they could see “light at the end of the tunnel.” Researchers were on the verge of “breakthroughs.” Some pronounced “a cure was around the corner.” Recently one of the loudest criers and leaders of the “more funds” for research bandwagons has announced “we are making progress.”

How can you claim progress when you don’t exactly know where to go? How fast you are moving? Where you are now, compared to where you were, and where you want to go? There are no mile posts. No one knows how the brain works on a good day. How can we measure where we are on our journey to understand and change how the brain works on a bad day?

Other than some researchers, some organizations, some individuals (most all of whom have an obvious vested interest in trumpeting the notion research is “2/3rd” of the way towards finding a cure for Alzheimer’s (that incidentally was the exact claim of one of the leaders of the research community) there seems no consensus that any of these claims of progress is based upon a generally agreed upon body of knowledge, acknowledged by the research community in the broadest sense.

Indeed most recent “meta” analysis’s of the collective claims of progress in the journey to discover the cause and cure of Alzheimer’s have concluded there is at best no consensus of where we are and where we should go, and at worst there is no agreement as to the value of what we do know as the foundation of where we should be going. Everyday there are contradictory reports of the results of yesterday’s reports of breakthroughs in understanding this or that process of the disease.

In the mean time - now, today - millions of people live with the disease. Millions more live with them. Tomorrow and tomorrow millions and millions more people will unwilling join both these groups. Where is the cry for more research funds to understand the causes, and to cure the pain, the stress, the suffering each and all of these people experience every day living with the disease?

There are only so many research dollars available to the Alzheimer’s community of researchers. How should each research dollar be divided between research for a cure for the disease, and research for a cure for the pain and suffering and stress that comes with the disease to all who are touched directly and indirectly by the disease? Well intentioned fund raisers ask and champion the need for more for research dollars to find the road map to a world without Alzheimer’s. Who asks, who champions the quest for research dollars to find the road map to cure the problems of people living in and with the disease in today’s world? - A world where the disease is a reality - A world where the disease diminishes the quality of life, of relationships for millions and millions.

It is easier to sit at a bench rather than at someone’s kitchen table and conduct research. It is more glamorous to announce research findings at a press conference, rather than quietly observe individuals and couples living happier lives as a result of psycho-social research. Many want to fund the study that “cures” Alzheimer’s, while few seem to want to fund the studies that “lessen” the psycho-social impact the disease has on most individuals and families.

From my admittedly biased perspective throwing more and more and more money at the search for “a cure” without a better plan or consensus than we now have is clearly a waste of money. The more we know about the brain, the more we know we don’t know about the brain. The less we know we know about the brain the more sense it makes to me to spend more time, energy and research dollars on what we do know. The psycho-social impact of the disease on individuals, caregivers, families, and even on the professionals who support them is just plain awful.

How does this happen? How can it be avoided? What causes these dynamics to occur?

Why don’t the individuals who claim to be the leaders of the organizations dedicated to helping people with the disease lead the search for research dollars to fund psycho-social research?  Personally, I’m not at all confident we will ever find a “cure” for the diseases of dementia. I am confident we can find better “social medicine” to support people who live with the disease and their caregivers. I am confident research can identify destructive and constructive behaviors that impact relationships within “Alzheimer’s families and individuals.” I believe we can discover better ways to reduce and avoid care giver stress through research.

Yes, we need to continue to research the causes of this awful disease. We need to continue research to find a cure of the disease. But, given we can’t do everything at once - shouldn’t we spend lots and lots more money and time researching ways to minimize the impact of the disease on those who already have the disease? And dare I say, if lots and lots more money is not available shouldn’t we spend less on the science of this disease and more on the humans who live in and with this disease?

For me and my family, and for millions of others and their families — asking for more and more research dollars (given the way they have been and are being spent) from private and public sources is inappropriate. I don’t support it. Don’t ask me to come and sit next to you as an example of where research dollars are going or who they are going to help. It is complicated, and researchers of all people should know there are no easy answers or “asks” for these issues.

Please, pause and listen to the voices of the people in whose name you ask for more money for your research. Please, pause and ask yourself - what’s the plan? Is there a plan? Where is the leadership? If we can’t do everything that needs to be done all at once, let’s all sit down and decide on the priorities of what we can do right now given our ability, knowledge, and resources.

Let’s think before we speak. Let’s listen before we act. Let’s be real and practical rather than magical thinkers. More is not more. More is not better. More is simply more - more wasted time, effort, and money. We first need leaders and leadership. Then, we need to develop consensus, a plan. And, finally then we can all rush out and call for more money for more action for more research. In the mean time,while we are trying tone down the hype, while organizing the facts, what about psycho-social research?

It’s Back

Yes, it’s that haunting feeling. It has haunted me for the past seven years. The tight knot my stomach, the lump in my throat, the uncontrolled crying, and the sense of falling into an abyss. This is not a bad dream for me. This is how I feel right now.

I feel as if I am reliving my own response seven years ago upon hearing my neurologist’s words “Richard you have dementia probably of the Alzheimer’s type, and certainly with Alzheimer’s features.” Seven years ago! And now the same identical feeling, the same intense crying is all suddenly back. Feeling as if it will never stop. Feeling as if I have not control over it. Feeling helpless, unable to avoid something awful.

Previously I felt as if I have always been walking one step behind Dr. Alzheimer’s. Every morning I would wake up and see what old and new symptoms he had placed in my IV, as he made his rounds while I was sleeping. M on how to overcome, avoid, or at least deal with each of these symptoms for the rest of the day in ways which would not appreciably impact what I wanted to do that day.

My goal has always been to stay only one step behind the good doctor. My fear was I would fall two steps behind, and then three, and then for, and then I would begin to consider just giving up trying to catch up

I have recently returned from being on the road, meeting, speaking, and listening to people with dementia, their caregivers, and engaged professionals. I try to become engaged with about 500 people a week (People with Dementia, caregivers, Physicians, Nurses, CNA’s, OT’s, PT’s, RT’s, nursing and social work students, medical students and residents, home health care workers, direct care workers and managers, politicians, professionals, leaders, managers and staff of various organizations committed to supporting people with dementia, volunteers, etc.)

Over the course of the last year and a half I have tried to maintain a schedule of being on the road for two weeks, home for one week, and then on the road again for two more weeks. Occasionally I was on the road for three weeks and then home for a week: but always when I came home I reorganize, re-centered, repacked, refocused, and took care of the details as I headed out on the road again.

For the past three months I have on occasion asked family members or friends to accompany me on the road. It is a lot to ask someone to take a week off of work. After-all, I am always surrounded by loving, supportive, people. But when I miss airline connections, but when everyone is busy just after the program is over, but when I become restless at night, but when I can’t remember when someone is picking me up, or sometimes even if or why someone is picking me up - it assures everyone at home and me that I am safe, if sometimes unsound.

To no one’s surprise I diverge and digress from my point. After spending a week and a half at home - I haven’t reorganized, re-centered, repacked, refocused, and taken care of the details for the next two weeks. In fact I am more behind now than when I came home a week and a half ago. I’ve made additional problems for myself as I attempted to deal with my original “to do” list. Help, I realize I’m falling behind - across the board! Not just with one symptom here or there. I’m not keeping up, much less getting ahead of myself with the details of my life. I have a spouse who is an angel, a full time care assistant, dozens and dozens of people around me here in Houston, and literally hundreds of people around me in the U.S. of A., and even a couple of dozen in foreign countries - all dedicated to enabling me, all helping to keep me safe and organized. And now I have observed I am my own worst enemy and an additional force for them to deal with as they attempt to try to support me.

Why don’t/can’t I stop this madness - this counter productive behavior? Ah, now I am back to thinking like a psychologist. But, alas I am not. I no longer think enough like one for the label to mean anything useful to me. I still think about my own thinking, but honestly I almost never can recall what I was thinking about more than a couple of hours after I thought of it. Great ideas and insights come and go like snow flakes in Houston, Texas. First they are pretty rare. Second they exist only in the moment. Third they leave no trace of their existence.

Oh, I still have access to crystallized memories. I still recall what I did yesterday, at least some of it. I know what you just said, and I might recall it in conversation yesterday. But figuring out what to do about tomorrow, today. That has become a real challenge for me. Sticking to a plan is almost impossible, if the plan is longer than a couple of minutes.

Writing about me is still a clarifying and reassuring experience for me. I don’t understand myself “on the fly” as I did, or at least thought I did, in the past. And, those times when I am confident I know what’s going on are not only fewer and shorter, I am less sure of them when they do show up between my ears.

A local merchant recently told my spouse he thought I was such a kind person, and sometimes I acted a little oddly. Me odd?!

That’s why I’m crying!

Pay It Forward

I am looking for like-minded, close minded, and/or persons of interest who will join me on one of my crusades. Now that I seem to have the formatting of this under control I’ll send more of my writings to you on an occasional basis.

I am interested in your reactions, opinions, etc. to my writings/experiences. I am looking for opportunities to speak. Feed back, and opportunities to work with others who also daily confront the symptoms of dementia is welcomed by yours truly at richardtaylorphd@gmail.com

Thanks

Richard