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Posted by on in Uncategorized

 

  Richard’s call toaction  

 

Stand up! Speak Up! Do not victimize yourself with your own silence.

Speak for yourself and those who will follow.

Ask Carers and Friends to do the same.
Today will never be here again.

...
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Posted by on in Dementia Research Studies

FALSE HOPE

Hello, okay, okay so maybe it hasn't be exactly one month since I announced I was taking a month off from reacting to the shouts of researchers, funders, and those who are convinced they know something new about dementia and must share it with others.

There seems to be some under the table recognition now that the "types
of dementia" are not as mutually exclusive in their causes, progress, symptoms might have been originally suggested. In fact some now whisper if dementia is really something/something’s/a normal course for some to age. The press is on for early diagnosis before we know/agree on exactly what it is we are diagnosing. Can two types/forms of dementia have the same symptoms? progression? But who do I make the check out to? The National Alzheimer's Association or the National Vascular Association?

Well, who runs the most ads? Who is most effective at scaring us? Who is the comfortable old show having been around for twenty years? And what difference does it make who I make out the check to; it all goes to understanding dementia. Doesn't it?

Are we at a place where we can usefully focus of forms of dementia? Do we understanding what we don't understand?

Should we concentrate right now on individual forms of dementia or individuals living with the symptoms of dementia? The assumption is always we know what dementia is and is not? We don't. We know how different forms of clearly defined and mutually exclusive forms of dementia are formed, progress, and end up. We do not.

There is so much we don't know, and even more that we don't know we don't know. It is inappropriate, dangerous, stigma producing, false hope creating to claim something based on claims which are not yet proven.


This is where dementia research is right now. The language is corrupted, the claims are corrupted, and the science just isn't there. We know things, many things, and most of them we don't know what they mean. We just know they are there, we can now see them.

But what this means is far from settled science. Yet researchers have jumped over each other and ride on each other's backs so often they and we forget the gaps, the false hopes, and the lack of a consensus science foundation for many advanced claims. There is no order to how all this research is organized coordinated. We are now crowing because some researchers are talking to each other. Big deal, is that something worth crowing about? Shouldn't they have been doing this for twenty years?

Still time to pause, disinvite all those who have skin in the game of Alzheimer’s research (and make no mistake about the fact this is now very much a game, even though it is a game of life for those living with the symptoms of dementia). Someone somewhere has to start sorting through all this hope/hype for us and with us. Will it/should it be researchers, governments, and funding sources.

This should be one of the primary responsibilities of Nation's Alzheimer's Associations, but alas they are so busy promoting their own agendas, their own research theories, their own claims to be the best in the world, - the search for truth, for science, for understanding is left in the very hands of those wearing the thickest blinders - researchers who are perpetually chasing research dollars.

The quest is defined and driven by money, not results, not growing consensus. Most all results are advanced as legitimate news of value
to those living with dementia.

Artificial cure deadlines are set, and then ignored. They are set without a factual basis for the claim, without a plan, without a budget, without consensus.

For most players in the game there will always be more time to straighten this all out, the only folks with less time are those living with the symptoms of dementia. They have been waiting for years and years, for decades and decades. They have been swallowing false hope pills, press releases, conference reports for years and years and years. This is bad, bad, bad for us all. It is especially unjust, unethical, for those living with the symptoms and those living with someone living with the symptoms. They should be the first to be served. They should be the first to be consulted/involved.

Sitting by the phone, waiting for Harry to call/consult/invest in/rely on/learn from/actually trust people living with the symptoms of dementia...Richard and more than five million other citizens.

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Posted by on in Miscellaneous
Hello, within the past couple of weeks I have stumbled across a new pocket of clarity of thought residing somewhere between my ears. I don't know where it came from, I don't know how long it will be here, but I do now realize I can't think things through, I just sit down and start up my old electric typewriter and I type. Formerly, I mulled over ideas, tested them against what I knew, researched my conclusions. Now I just sort of put a clean sheet of paper into the machine and start thinking out loud. It feels sooooooooooooo good, to have some of my mojo back. Maybe it's the new vitamin B-12 shots at work, maybe, maybe, maybe. I am trying to enjoy it, use it while the door remains open. I am now writing lots and lots, responding to other's writings lots and lots. Most times I am eventually clear in my message/thoughts/position. Sometimes I realize I am not. Along with a new found spontaneous focus/attention has come an ongoing nagging awareness that everyone does not share my sense of urgency in addressing the absurd/counterproductive/dehumanizing/neglectful manner through which the world is responding to the fact that half the world is now much older than the other half. And with that fact comes a divide in priorities, spending, political conversations, and from my point a view a very troublesome divide in how we treat/respect/appreciate/understand the respective other half of the population. Technology does not seem to have helped pull us together. Governments, mostly still populated by one half of the population, but increasingly elected by the other half, seem to respond to divide by dividing us more, and more and more. But, as usual I digress/wander/repeat myself/reveal myself. The sense of urgency inherent in realizing the dehumanizing stigmas that are currently being promoted by the very organizations who goals should be to re-humanize dementia has been refocused on how quickly can we find a cure, not how quickly can we improve the lives of folks living with the symptoms of dementia. Great minds, great government's, great universities, great NGOs, giant drug companies who all are driven by their own needs to survive and holds lots of conferences in nice places and make speeches about going to war to defeat dementia - each and mostly all of these forces have aligned with each other to raise more money and support to "cure" dementia (actually Alzheimer's to use their word). This wrong is wrong in oh so many ways, I can't count them. But back to yours truly and the reason I write this. I need to take some time away from the chase, away from the darkness, away from the dark forces. I need it for myself to fully enjoy these moments of clarity. I need it to make the semi annual readjustment to the fact that my own sense of urgency is not shared by many, many others. That is not to say we don't agree of goals, it's just the objectives/the strategic planning/the time lines/the willingness to invest more/to readjust priorities/to balance between thinking globally and acting locally/the devil that resides in the details of living life to its fullest and its best - these details need to be addressed, now. We need less "think tanks/groups/pieces" and more action plans. We need more evidence and reasoning, and less visioning. Yes, awareness is spreading even as the darkness is promoted. Self advocacy seems to reside in the hearts, minds, feelings, and utterances of more and more of us living with the symptoms of dementia. Yes, on the whole the world and some individuals are better off now than they were five years ago (speaking of folks living with dementia). Yes there are pockets/moments/places/people/and more and more mostly smaller organizations who understand us, get "it." In the long view of things, in the long run, things are still mostly slowing down in the wrong direction and/or speeding up in the right direction. It is fitful progress subject to lots of changes and pressures. For myself I am convinced there is not enough progress to make much, if any difference in my life. Perhaps in the lifetimes, the dementia times of my grand children - but it is only a perhaps. The current steps in the right direction are matched almost exactly by stronger (if fewer) steps in the wrong direction. To say, to feel, to act like there is no need to hurry, no need to keep building pressure, resisting the forces of resistance is ill advised. We can quickly lose our gains with one set of election results, with one distracting international event, with a thousand other distractions and priorities. We shouldn't have to compete, but we do. I'm taking a month off/away/observing/writing/hanging on - preparing for what will probably be my last hurrahs come Fall and next Winter. Thanks for wandering around with me and this posting. Back soon - with more. Richard
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Posted by on in Opinion
Hello, memories are I believe not like pages in a book on which the memory is printed and from which they can be read and reread. They are more like a million letters (some sights, some smells, some sounds, some experience), and of which are constantly being re blended into a story from time to time. Each time the story is a bit difference because the content in which it is being recalled is different. As we try to understand today we blend what we can "remember" with what we perceive to be the present and explain what meaning is occurring. We end up with a different combination of letters everytime we recall a memory, but believe it to be the same words as we first imprinted in our minds. When others are confused or reject these these subtles of memory and seek to force others to remember as they remember or think they remember they further confuse already shaken confidence in understanding today. Thus we come to rely more and more on others descriptions of today and less and less on our own efforts to figure things out. We lose this ability when we don't use it. We slip away into a world of yesterday created mostly my others, and over time just give up, give up trying to understand today, give up trying to live in today, but happy when we please others when we seem to be in today, but it is in effect a shadow of yesterday, and can never satisfy our primal need to understand today to our own satisfaction. Sad for everyone. Richard
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Posted by on in Miscellaneous

Hello, there was a saying in WW II (I've been told) that claimed "Loose lips sink ships." I have just read several news releases and watch a couple of NIH videos updating the progress of the national plan, you remember the plan to "cure" Alzheimer’s by 2025. The current official wording of the claim now seems to be to "cure, control or reverse Alzheimer's by 2025." More words about words. We still don't really know what Alzheimer's is and is not, what does and does not cause it, when it starts or how it starts, how it progresses in any one person, and the questions remain endless with no answers in sight. That of course doesn't stop many "experts" from ignoring the facts or lack thereof and pushing on to define exactly how we are going to win this war against the enemy no one has been able to scientifically identify in the last several hundred years. 

 

That doesn't stop well intended citizens from walking and running after a cure with check books in hand. It doesn't stop law makers from doubling this or that amount of money in order to "win" a war against an undefined enemy. It doesn't stop hope from rising from the sea of empty words, promises, breakthroughs, promising results, etc. and flooding the hearts and minds of already drowning caregivers.

 

This is a human tragedy in oh so many ways, for oh so many people. And of course the primary recipients of all this theatrical nonsense are those in the audience living with dementia. Who see, hear and feel themselves and their needs ignored by their governments, physicians, professionals, and (admittedly indirectly) their own caregivers (who are investing their time, money and efforts in support cure efforts rather than supporting quality of life improvement efforts).

...
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