Jan 22, 2012

Life Can Be Awful Now It Has Gotten Worse! Richard Taylor

We cannot let these foxes be the spokespersons for us. We cannot let them spend all our money on bench/cure research and relatively little on psychosocial research. We cannot let them decide for us who should be the focus of their efforts and who can be ignored.

By Richard Taylor

Richard Taylor
Life can be awful. Now it has gotten worse! (Paraphrase of Woody Allen’s words and view of life)

On Watching and Hearing the Wisdom of the new Federal Committee to write a plan to plan to write a plan (now to write a draft of a plan to plan to write a plan) of how the Federal Government should lead/fund/Create the efforts of a few to “create a world without Alzheimer’s on or just before or after January 1, 2025."

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I spent the last few days watching the self-anointed leaders of the Alzheimer’s crisis take a step backwards from their own promise (a plan to write a plan) and produce a framework of a plan to write a plan). And then spend a day telling each other the framework is not enough.

Finally I had to turn it off. Enough was/is enough.

I commit to spend the remainder of my public life pointing out the fallacies, half-truths, myths, and stigmas these folks are creating and reinforcing out of one side of their mouths, while out of the other side comes their promise to undo what they persist in creating. Of course they can still suck through a straw in the middle of their mouths your support, donations, and prayers. And they can occasionally burp out a false hope or two every so often.

We cannot let these foxes be the spokespersons for us. We cannot let them spend all our money on bench/cure research and relatively little on psychosocial research. We cannot let them decide for us who should be the focus of their efforts and who can be ignored.

It's time for the chickens stand up and crow, to walk around a pick/peck. To be seen and heard.

Myths, half-truths, lies, and hoaxes are what we use as stand-ins to avoid thinking about specific individuals. True we demonize some, we lionize others. We take pity on some, and worship others. Yet everyone is someone, distinctly different and fundamentally alike as you and I are with each other. But it is easier, safer to think of classes of human beings - by sex, race, ethnicity, disease groups, etc.

If we continue to buy the lie that Alzheimer’s Disease is sole cause of the public health crisis we are dooming more than another generation to feel “left out” of the dementia discussion, of the dementia research, of the dementia support (such as it is) provided by organizations and governments.
This is wrong, wrong, wrong.

If we continue to but the hoaxes, half-truths and myths promoted by organizations and researchers that all that is need is 13 more years, lots and lots more money spent quicker, and a committee or two to watch over the assured progress we are dooming the rest of the dementia community (those with a diagnosis of probably Alzheimer’s) to a life much emptier of quality, meaning, and joy while we wait for the clouds to part and the cure pill to come tumbling down on January 1, 2025.

This is wrong, wrong, wrong.

What are we goanna do for/about the increasingly bad state of life for 10 million Americans now living with some form of dementia, and 10 more millions of their care partners? What are the research priorities? Finding answers to today’s human problems, or making up a date when there will no longer be tomorrow’s problems.

Let us stop watching this happen. There is no plan, there is no science, and there is no growing consensus outside of a relatively small group of researchers, to find a cure on or near January 1, 2025.

Let us stand up and speak out. These emperors of Alzheimer’s are not the leaders who will address the dementia public health crisis.

They stand naked together and lacking little to no support from their scientific colleagues most of whom admit we are not even close to understanding Alzheimer’s/Dementia. Remember the findings of the NIH just last year?

Now comes a committee of the one eye (bench research) to proclaim “war on Alzheimer’s.” They even tell us the date the war will be over, if only we sacrifice the quality of life of those with it, so we can concentrate our energy, donations, money, prayers of finding a cure pill so no one else will ever get it and we can finally after all who now have it die, live in a world without Alzheimer’s (but of course still filled with the other fifty or so forms of dementia).

This is wrong, wrong, wrong.

They are declaring war, to the neglect of those who in whose name they want us to fight/donate. This war, as most wars comes down to power, influence, fame, and money. Though pure of motive in most of their minds and hearts, they have simply come to believe their own hoaxes, lies, half-truths, and stigmas. These in their twisted minds justify the war.

They justify neglecting those in whose name the war is fraught, and write them off as collateral and relatively inexpensive casualties. This war is about opening up nursing home beds, saving Medicare, reducing the federal deficit. For these are the reasons/evidence they advance to justify the war.

And, yes, there are occasional warnings of “this could happen to you if you don’t do and support what we ask/need. And who is the enemy? What is the enemy? Dementia? Alzheimer’s Disease? Stigmas and hoaxes? The symptoms of the poor, suffering, soulless, dying twice barely human beings who are living with the symptoms?

Be careful not to wound them while you shoot at their symptoms. Be careful not to demonize them with your neglect of their humanity, your weapons of war which may or may not slow down, reverse, eliminate, and/or destroy the symptoms – but then again the last 15 weapons (pills) we have developed have all failed, leaving broken hearts, broken half promises, crushed hopes in the minds and hearts of care partners and their partners
Please, please - For your own sake, the sakes of your family, and the rest of the world – stand up and speak out. We are quickly falling further and further behind in the race they created to capture the hearts, minds, and money of politicians and citizens.

They first redefine the dementia crises with the words “The Alzheimer’s Crises.” And then they convinced others with power that they are suddenly smart enough to this time for sure truly claim the cure is just 13 years away with absolute certainty.

We all whispered to each other about how wrong this was. Wrote blogs, created petitions, made presentations to each other, fired off an occasional broad side via emails, and then we all went to bed.

They have stayed up all night, running focus groups, reinforcing fears and stigmas, lobbying for 20 years for something that was “soon to come, light at the end of the tunnel, supported by breakthroughs. Claiming, now they know what to do, how to do it, they just lack a few pennies to support their efforts.

Now they spread false hopes, reinforce stigmas, state wishes as facts – all while under the all-knowing eyes of the Executive and Legislative branches of our government.

What is each of us going to do about out this? What are some of us going to do about this? What should all of us do about this?

You decide. I have.

I Can! I Will!

Another way for you to stand up and speak out.

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Original content Bob DeMarco, the Alzheimer's Reading Room