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Hello!
I am Richard Taylor, and I have been living with the symptoms of dementia for the past six+ years. I refer to this as my “newsletter,” but actually it’s less news and more letter. These are some of the things I have thought about and had the good sense to quickly write them down over the course of the past month.
There is lots in here concerning my frustrations with with research, researchers, and their promoters and their promotions. I want their hints, claims, and assertions to be true, but closer inspection of the realities of their results just don’t, at least to me, support their 25 years of optimism that every day in many ways we are closer to a cure and/or something(s) to help me and the 9 million individuals living with the symptoms and diagnosis of dementia, probably of this type or some other.
Thanks for taking the time to open this and look at it. I believe that people with dementia should for as long as possible stand up and speak out about their experiences with the symptoms, their caregivers, the fund raising pleas that are made in the name of “our” disease. If we don’t speak up, who know what it’s really live to live with these symptoms.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G. B. Shaw
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Now I Know Why I Didn’t Go
Hello!
Results that I have read, and reports that I have received from people who attended the semi-annual World International Conference (and fund raiser) on Alzheimer’s Research confirmed for me I can still make sound decisions based on my own thoughts and feelings.
Good news for me; sad, confusing, and misleading news for all of us who live in cogitative decline. The eternal optimists, the career researchers, the public relations specialists (all of whom I remain confident are well-intended) see failure after failure as positive progress. The cheerleaders of various theories of what causes Alzheimer’s disease “spin” the disappointing results. In addition, the drug companies continue trails on drugs that promise more than they have delivered in previous trials.
It is not fair to people to have dementia. It is not fair to caregivers. It is just not right to continue this effort to blow up this bubble of hope that we are getting closer and closer to a cure, to a world without Alzheimer’s; that we are so close we should spend much more money to get their faster; that we are so close all should have hope we too will have the progress of our symptoms slowed, stopped, perhaps even reversed.
No one claims to know for sure, no group of experts claims to know for sure what causes our symptoms: why some of us have some symptoms sooner or latter while others have other symptoms sooner or later, why some have more symptoms and some have less, why some symptoms advance faster in some but not others. No one knows exactly for sure why or how symptoms are caused.
Yet, many talk and act as if these are all known, and then turn their attention and our hopes to pills to fix us.
I now know for sure why I did not go to Chicago to this conference. It is bad enough reading about what was said, how it was said, what was ignored, what was emphasized, and what was not. It would have been worse for me sitting there listening to it. I too still harbor some deep flickering hope that I want them to be right. I want to live in a world without Alzheimer’s, especially my own world without Alzheimer’s. I want to be cured. I want my symptoms to be slowed, diminished, and stopped in their tracks.
A large part of my remaining cognitive ability knows this is not going to happen. I small part of my spirit still hopes I am wrong.
Richard
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The More We Get Together…
The Hello List
Hello!
I’m starting a list of people who are dealing with the symptoms of dementia and believe there might be some value in contact other folks (preferably who live reasonably near them) who are also dealing with the symptoms.
Create a new mailing address (don’t use your current one because this one will be quite public and you want the easy option to just close it down if you get too much spam or unwanted attention). Emails are free at Gmail, yahoo, hotmail and many others.
Do not include your name in the mailing address. It keeps it more anonymous until you want to tell someone your name.
Tell me to add your new nameless email address and your city and state (so we can better find each other). I will keep the list and publish it in my newsletter until I get my new web site up and going, then you can list or d-list yourself.
Richard
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What I need is a Good Set of Bio Markers
Hello!
Many researchers, cheer leaders, and leaders(?) of the Alzheimer’s community now seem consumed by the search for biomarkers of impending or current forms of dementia. Most every bodily fluid (except those reserved for sexual and reproductive activities) has been, and is currently being searched for tell-tale little “D’s” or “A’s” or something foreign floating them which is not floating in the same type of fluid from someone who does not have dementia (yet).
We don’t know what causes “it” (whatever “it” is). We don’t know how or why it progresses at different rates in different people. We don’t know why some people get some symptoms early-on while others don’t experience them until near the end of the lives. How can we possible know whatever we discover in whatever fluid we are looking at is an indicator of something about “it?” And even if it means something, What? Why? And, what makes who says so more knowledgeable about “it” than any other Professional guesser with lots of initials after his/her name?
I myself had a teaspoon or so of spinal fluid removed from me on several occasions. One time it was full of some mystery markers, the next time it was not. Was it the experimental drug I was taking? Was it really a marker of dementia? Don’t know, the study was stopped and that’s the last I heard from them.
If only my parents could have know shortly after my birth that I was going to have dementia, then my parents could have purchased the Special Dementia and other related disorders edition of the Baby Einstein DVD package and perhaps I could have postponed the disease’s symptoms from overwhelming my brain’s defenses by a year or two.
You know it would save millions of dollars if someone could keep us out of nursing homes/memory units for just one additional year. And guess where they would invest the millions of saved dollars? Researching how to make our lives and the lives of caregivers fuller, happier, more meaningful as we are confronted by and engage the symptoms of dementia——- or funding more studies in search of the pill to “cure” “Alzheimer’s disease”?
Richard
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Why Don’t People Understand Me?
Hello!
I don’t give people enough information for them to instantly recognize what I am talking about. I know, they don’t. They ask me questions like “What are you talking about?” Sometimes I get irritated. I know what I’m talking about, why don’t they?
It is almost as if they are joining me mid-conversation. It has been going on in my head for a while. Either I have been thinking about it for a while, or it suddenly jumped into my mind and out of my mouth. Formerly I prided myself on being a better than average communicator. Now, it feels as if I am always being asked to explain myself. It irritates others and sometimes it irritates me! I think, actually hope, it is the disease. My processor seems out of sync with the flow of conversation and thinking of others, and perhaps even with me!
Richard
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“Three things we crave most in life happiness, freedom, and peace of mind are always attained by giving them to someone else”
Peyton Conway March, Chief of Staff of Army
Woodrow Wilson’s Administration
Links
What else is rolling down the pipeline of pipe dreams?
They don’t know if it works, how it works, why it works, nor for whom it might be effective, but they aren’t going to let them deter their ignorance from moving along to the next phase of testing. In fact they aren’t even going to wait until all the test results are in. Full speed ahead of testing and getting to market ASAP for bapineuzumab! (Richard’s note - This action makes no sense at all, but then I have congnitive abilities - you decide for yourself.)
Please, please check this out! (Click here)
Support the Alzheimer’s Museums Initiative
A wonderful program tha I feel strongly about, ARTZ: Artists for Alzheimer’s, an initiative of the Hearthstone Alzheimer’s Foundation, is participating in the American Express Members Project. You (probably like me) need not to be an American Express member, you can qucikly register and then vote for this project.
This contest awards funding to innovative projects in a given fireld for “doing good.” ARTZ: Artists for Alzheimer’s is an on-going projedt that develops access programs at museums specifically for people living with Alzheimers. This is a program that should be in your local community Art Museum!
Please go to the following link, sign-in as a guest and nominate this worthwhile endeavor (Click here)
A Place to Better Understand and Appreciate the Values and Process of Therapeutic Cloning.
Therapeutic cloning is a misunderstood area of research, and a promising area of research for folks with many forms of cognitive disorders. I work with the good folks who organized and set up this site. It is a worth while investment of your on-line time to better understand the issues, the process, and the progress of therapeutic cloning. (Hint - it is not trying to create the twin brother/sister you never had!)
Please check this out! (Click here)
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Post Hoc Ergo Propter Hoc
Hello!
I Watered my Lawn Yesterday. It Rained Today. Watering my Lawn Causes it to Rain
I swallowed a pill yesterday. Today I can remember as much or more than I could remember yesterday. The Pill has slowed, perhaps even reversed the progress of my disease!
Post hoc ergo propter hoc, Latin for “after this, therefore because (on account) of this”, is a logical fallacy (of the questionable cause variety) which states, “Since that event followed this one, that event must have been caused by this one.” It is often shortened to simply post hoc and is sometimes referred to as false cause, coincidental correlation, or correlation not causation.
Post hoc is a particularly tempting error because the order in which events occur is an important element in establishing why certain events occur.
The fallacy lies in coming to a conclusion based solely on the order of events, rather than taking into account other factors that might rule out the connection. Most familiarly, many superstitious beliefs and magical thinking arise from this fallacy.
Here, take this pill - put this patch on - sniff this - dissolve this on your tongue. Next morning, next week, next month and for 30 or 60 or 90 or 365 days; or 1,825 days (5 years) or 18,250 days (10 years), or even until the day of your death your symptoms will slow their progression, and/or stop progressing, and/or they may even be reversed!
Is the effect of taking one or more pills advertised as slowing the progression of the symptoms of dementia, the cause of the apparent arrest of the progression of my symptoms? Or is this a case of superstition (the witch doctor knows how to arrest or reverse my symptoms, and she/he gave me these pills), or a case of magical thinking (I so want this to happen I will “will” it to happen myself and/or I so much want it to happen I will see it happening because I so want to see it.
I will ignore events that disconfirm my deeply held hope/belief and I will concentrate on events that confirm the believe that the progression of my symptoms of dementia have been slowed, stopped, and maybe - just maybe-reversed.
Or perhaps what I am observing either from inside our outside is my own natural process of growing older, and/or the process itself is not an even deterioration of cognitive skills, and/or the process is subject to perceptual errors, and/or the process is caused by so many different factors one or two or three or four pills will not significantly change the pace or course of the process all by themselves.
I sure wish life, my brain, myself were as simple to understand as I want it to be; as the ads for drugs on TV make it out to be; as my doctors , drug reps, researchers, and others including my caregivers want it to be.
And now, “How long should I continue to pay for and swallow pills that seem to have lost their effectiveness? Until the day I die?”
I’m fearful of what will happen to me if I stop taking these pills, even though they are not now obviously working, perhaps they still are still working and I just don’t know it.
Post-Ho-Ergo-Propter Hoc!
Richard |
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Two Different Perspectives
Hello!
“We are making progress. It is very important that we have as many drugs as possible in the pipeline for Alzheimer’s, and that we explore every available avenue for treatments,” said Ralph Nixon, MD, Ph.D., of the Alzheimer’s Association’s Medical and Scientific Advisory Council. “However, the population is aging, and we need to make significant advances soon in treatment and prevention of Alzheimer’s or it will become an overwhelming epidemic, wiping out our healthcare resources, and devastating Medicare.”
Dr. Nixon is Professor of Psychiatry and Cell Biology, Vice Chairman of Research in the Department of Psychiatry, and Director of the Silberstein Institute at New York University School of Medicine. Dr. Nixon is also Director of Research and the Center for Dementia Research at the Nathan S. Kline Institute for Psychiatric Research.
“Making Progress assumes we can measure the movement of something from somewhere to somewhere else. Is progress to be measured by how many pills drug companies can pack into a pipeline directed at my mouth and the mouths of 5.2 million American’s living with the diagnosis of dementia, probably of the Alzheimer’s type?
Are there other avenues for treatments that don’t involve swallowing, dissolving, spraying and/or absorbing some foreign object(s)? Of course there are! Lots of avenues to improve the quality of lives of 5.2 million Americans living with the diagnosis of dementia, probably of the Alzheimer’s type. And what are the reasons given to spend more money on more pill-research? - We don’t want an epidemic, we don’t want to wipe out healthcare resources, we don’t want to devastate Medicare! - What about we do want to support people living with the symptoms of dementia to live more purposeful and purposefilled lives?
Is anyone working on pills to avoid wiping out my self-esteem, my relationships with loved ones, my sense of living in today? How about constantly repeating a commitment to avoiding the devastation of the disease of people and their families - and less repetition of how devastating this epidemic will be on Medicare. At least say individual human beings come first, before you try to scare us into increasing funding for more research to find more pills in order to save our healthcare resources.” said Richard Taylor.
Richard has been living with the diagnosis of Alzheimer’s probably of the Alzheimer’s type for the past seven years. He doesn’t own, direct, or run a dementia research facility, nor does he work for or with the National Alzheimer’s Association.
Richard
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What’s New With Richard!
I’m speaking and listening:
Bay City Michigan on September 11th.
Longview, Texas on September 15th.
Tyler, Texas on September 16th.
The Woodlands, Texas on September 23rd.
Wichita, Kansas on September 26th.
These are especially interesting links this month!
I’m still looking for speaking engagements in October and November.
Still working on a new, improved web site!
Still working on two DVD’s.
Still trying to stay just one step behind my symptoms!
Stay in touch with me, and I will stay in touch with you.
richardtaylorphd@gmail.com
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Stand Up! Speak Out! Now!
If you do not tell them, how will they ever know?
Do not become a premature victim (by even one day!) of your own silence.
Speak up about and for yourself and those who will follow. Ask Carers and Friends to speak up for themselves, and for you and with you.
Today will never be here again! Time is of the Essence! Use it wisely!
Tell as many people as possible your perceptions of your interactions with professionals, with carers, with friends, with strangers, with your Government. They cannot change unless they know, and they cannot know unless and until you Stand Up! SPEAK UP! Now!
Seek to create and except from others a Palpable Sense of Change and Urgency!
Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC |
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