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Posted by on in Uncategorized

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...

 

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.

 

...
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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 selectric typrewriter 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 demetia 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 Miscellaneous
I have dementia. My productive time and energy is becoming progressively limited. As a dementia patient I must prioritize my activities. I am not feeling sorry for myself -- I am being pro-active. My abilities are dwindling because my brain is dying. How much of the important things can I fit into my remaining brain-life? It is a question each human needs to look at, but those of us with dementia probably have much fewer months of "productive" activity to reasonably expect. So prioritizing becomes even more important. As a dementia patient I must carefully limit my intake of news exposure because I know that over-exposure means needless worry and sleepless nights, which result in lack of brain cell renewal and even greater impaired judgment. So I limit my news intake to items that pertain to dementia itself, and of direct impact on those with dementia. These are things I can hopefully apply in my own life. As a dementia patient I am indignant at how the test results from the study of cynical distrust and dementia in Finland, published late May 2014 at Journal of Neurology, have led to implications of cynicism as a personality trait for dementia. This has been implicated in numerous articles including CNN, BBC, Science Daily, Alzheimer's Weekly, Medical News Today, Health Central, etc. I hope to further investigate this particular study's conclusions and compare it to the implications stated in the above articles, but you readers probably have greater abilities than I, in order to follow up with that comparison. If this was said of any other minority population I think the public would take action. But our minority mostly does not have the ability to speak. Please speak for the many who can no longer speak. (If I include link then “share” only shares link and not my request, so going to www dot neurology dot org then entering “cynical dementia” as search terms brings you the appropriate link.) As a dementia patient I am asking YOU; please don't assume dementia news is complete and well-researched. Please investigate. Come to your own conclusions and SHARE those conclusions (then SHARE again)!! Could you please encourage me by also sharing those conclusions and plans in a comment below or an email to me? Thank you.
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Posted by on in Miscellaneous

Hello, an unspoken/unaddressed disability is living with the symptoms of dementia and the cognitive disabilities which come and go and worsen over time. The law, the courts, police training is so last mid century when it comes to a humane and practical understanding of best to confront folks living with dementia in both public and private settings. And where is the world's leading authority on Alzheimer's involvement in this area of concern? Are they out-front in advocating, designing, offering training to Local, State and National law enforcement agencies? Not so much.
 
But they sure are worked up about running/walking/bowling/shooting/bike riding to raise money to find a cure for something they can't define. Thank heavens they are the (self proclaimed) world's leading authority on Alzheimer's disease. Where would people living with dementia be without them? A good question, worthy of consideration. Surely someone/some ones can do better than the National office is now doing). Just a thought. Richard Taylor
 
Advocates Call For Police Training In Meeting With Feds - Disability Scoop
www.disabilityscoop.com
Days after a grand jury determined there was no crime in the death of a 26-year-old with special needs who was restrained by law enforcement, the Justice
 

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Hello, giving the finger to 99% of persons living with the symptoms of dementia probably of the Alzheimer's type. Spending over 100 million dollars on a study which seeks to delay the onset of dementia/Alzheimer's until after we die big para and your government want to postpone the inevitable until it is no longer inevitable (you will have already been dead for some time before the symptoms are schedule to appear. Of all the folks living with dementia, this study population is composed of about 1/2 of 1% to 2% of folks living with a certain genetic profile which greatly increases, but can't be said to always produce dementia/Alzheimer's. Is this seemingly genetically driven form of Alzheimer's the same as the form that appears in the other 99% of folks who do exhibit the symptoms but don't have the same suspect genetic profile? Are there two forms of Alzheimer's? We'll never know, and drug companies will never care because if they can prove this or that treatment delays onset with this tiny sample of all folks having the symptoms do you think they will only sell it to the genetically predisposed? Or will they promote it for everyone, even if you don't have the genetic profile upon which the study was based. Your guess is as good as mine, but I'm guessing we are guessing the same. Richard
 
There may be 14 million U.S. Alzheimer's cases by 2050—and maybe a way to lower that total
online.wsj.com
Scientists are finding that delaying onset by five years could greatly reduce the number of patients with the condition.

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