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Archive for August, 2010

August Newsletter

Posted by RichardTaylor at 27th August, 2010

Alzheimer’s From the
Inside Out

Reports from between the ears and

from the heart and spirit of
Richard Taylor


A person living with the symptoms of Dementia
August, 2010

Hello

and welcome once again to my world. I have been living with the symptoms of dementia for no one knows for sure how long. I just know my attention, my memory, my understanding of who said what and when continues to slowly, erratically slip away from me.  I know that my understanding of today differs from those around me.   If we can’t agree on what exactly went on yesterday, how will we ever agree on what is going on today? If I can’t remember who you are, where I met you, what happened in the past between us - how on earth can we pick up where we left off?

How long I will be able to know what I don’t know? I don’t know. When I have nothing to worry about - I worry about that. Will I know it is/has happened? Or will I just forget to be concerned about it anymore? I don’t know.
I still have a strong need to understand and try to control what is happening between my ears. I’m just a tad more resigned to have to depend on others to help me both understand what is happening, and help fill in what I have missed or am confused about. I seem to be more tired, more anxious, more agitated than I was say six months ago. My once rock solid sleep schedule has crumbled. I’m writing this at 3:30 AM because I couldn’t fall asleep.  I’m still quite good, I must confess, at holding “it” in, covering “it” up, changing the subject, and using a few other cover up/diversion devices I have decided not to release to the general public just yet. My wife knows. My assistant knows. My Grand kids know.

This past month I have reluctantly pulled away from the two National Alzheimer’s Organizations. I have devoted much space in this issue discussing why. This is a big deal to me, to publicly admit I have failed to make much of an impact on either of them. I’ve spent a lot of time trying!
I have also devoted some space to exploring the issue of suicide. I have thought about thinking about it, and a recent event has caused me to think more about thinking about it.
I’ve made no progress in my discussions with my publisher about the conditions for publishing Humanize Dementia Care Nowmy next book. I’m meeting with the publisher of the Spanish translation of my first book and we have agreed to work with the authors of Best Friends (David Troxel and Virginia Bell) to jointly promote our Spanish translations in Latin America and Spain. I’ve spent most of my time preparing for a fairly intense Fall speaking tour.
I continue to edge my way towards the formation of a National Dementia Support Network, but I don’t want to launch it until I have all my pieces in place - and frankly the details seem never ending.
Please know how much I appreciate your emails, phone calls, and facebook 430 character snipits. We are all in some ways kindred spirits, more so for some than others, but we are all fully human, we are all - all here.
My blow torch burns at both ends - and Oh the Glow!
Richard

“The single biggest problem  with communication is the    illusion that it has taken place”  - - G. B. Shaw

INTERESTING FACTS

This August has:
5 Sundays, 5 Mondays, 5 Tuesdays,
all in one month.
It happens once in 823 years.
I probably will miss it next time

Where in the World
is Richard?

September 10th - Meeting with publisher of new Spanish translation of Alzheimer’s From the Inside Out
in San Francisco, California, Contact Richard Taylor
September 13th & 14th - Living with Alzheimer’s Conference in Elkhorn, Nebraska(Marquis Place of Elkhorn), Contact Summer Sargent summergoodman@hotmail.com
oklahoma
September 16th - Annual Conference in Oklahoma City (Oklahoma/Arkansas Alzheimer’s Association), Contact Laurel Dinkel ladinkel@cox.net

September 23rd - Spring Harbor Lunch and Learn; Alzheimer’s Association in Columbus, Georgia, Contact Christina Vogler Christina.Vogler@alz.org
September 24th - Professional In-Service in Columbus, Georgia, Contact Christina Vogler

September 28th - Chappel Hill, North Carolina, Contact Sheryl Zimmerman
Sheryl_Zimmerman@unc.edu

September 29th- 10:30 a.m. Recreation Therapy Students; 5:00 p.m. Geriatric Research Network, Greensboro, North Carolina, Contact Lin Buettner llbuettn@uncg.edu

September 30th - Folks w/ Dementia & their Caregivers, Greensboro Alzheimer’s Associtation, Greensboro, North Carolina Contact Mebane Ham Mebane.Ham@alz.org

minnesotaOctober 3rd-11th - Lakeview Ranch I, II; Dementia Care Foundation in Darwin, Minnesota, Contact Judy Berry lakeviewranch@yahoo.com

missouriOctober 13th - Americare Nurse Consulting Conference in St. Louis, Missouri, Contact Tina  Buckley (sorry but space is limited and the conference is full-up and there is no standing room available)tbuckley@americareusa.net

Colorado October 15th-20th - Homeinstead Dementia Caregiver Conferences in Northern Colorado, Contact Kate Aiello kateaiello@comcast.net

October 21st - Alzheimer’s Caregiver Conference in Cincinnati, Ohio, Contact Anissa McBreen anissa_mcBreen@trihealth.com

texasNovember 3rd - Health and Wellness Conference at Cy-fair Hospital @ 10:30 in Houston, Texas, Contact Rebecca Whitelaw rebecca.whitelaw@tenethealth.com

wisconsinNovember 9th-12th - Milwaukee, Wisconsin
9th - Helen Bader Foundation;    Penelope Project
10th - Wisconsin Alzheimer’s Institute
11th & 12th - UWM Center on Age & Community
Contact Anne Basting
smbraden@uwm.edu


November 17th-20th - Annual Meeting American Anthropology Association in New Orleans, Louisiana, Contact Athena Mclean athena.mclean@cmich.edu

Coming in 2011;

germany spain switzerland nebraska

belgium texas

Right or Wrong?
Suicide or Murder?
Wrong Questions!

Hello

several weeks ago a person living with the symptoms of dementia and her spouse did what they had been telling their family and Doctor they were going to do at some pre-determined point in the progression of her symptoms: they sat down next to each other on their garage floor and simultaneously ended their lives. Some labeled this event as a murder/suicide, and some saw it as a double suicide. I see it as two people who loved each other for most of their lives and had jointly decided that if something took one or the the other of them away from each other they both wanted to end their lives to end at that point in time, did what they agreed and believed was best for each of them and for both of them. For them, their lives were only complete when they were together.

The question for me is were they not still together? Physically of course, the answer is yes. Where it gets fuzzy is when together means we still know each other, we still recognize each other, and we still are able to express our love of each other to each other.
Growing old together is much like growing up together. We do not all mature at the same rate, at the same time. Yet we manage to live and love each other when one is going through one “stage” and the other partner is not. We do not all “age” at the same rate, at the same time. Age related disabilities, health disabilities come earlier and later - we grow old together, but that is only in the sense our birthdays add up at an equal rate.

Does our commitment to each other mean we agree to the same end point for each of us? Is it assumed when one dies (no matter how you define “dies,” and that is indeed a matter that needs to be defined), the other dies too? Was this an example of unconditional love failing to carry the moment? If one lives with the support of a respirator, does that mean the other can’t/shouldn’t “pull the plug” and go on living? These are not easy questions to answer. In fact, they are so difficult most of us avoid thinking about them. When dementia shows up, it is only natural that these questions arise along with our fears of the future.

Yes it is sad to realize some opt out of life for whatever reasons. Yes it is imaginable to me that this could be me, but I don’t want it to be, nor do I want it to be. Thinking about thinking about thinking about ending my life is something I have done on more than one occasion, but that is as deep into it as I have gone.

We don’t know much about these folks so it is difficult to appreciate/understand how and why they reached a point where their options for a life lived with purpose, with joy and love, with giving and receiving became so limited to them they decided they had no other choice to end their lives.

The challenge for professionals, friends, family, all of us is how can we engage each other in ways that even in the deepest of dementia moments there is a life fully living. Characterizing dementia as “the long good bye”, invites life ending considerations. What I take from learning of their actions is a renewed sense of the importance for me to live all of my life, every day. When I start hoping tomorrow will be better, when I start looking over my shoulder at what I seem to have lost of myself I lose the opportunity, the time, the energy to live all of today.

Richard

“Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer.”
- Atul Gawande, M.D.

Letting Go

Time knows all, but it isn’t telling me everything I need to know.

Hello

Time will tell. Time just told me something I either didn’t know or have been mostly successfully keep myself from knowing. I am presently reviewing with Linda and our financial advisor  our  financial road map we laid out ten years ago. I can see that my inability to understand arithmetic really screws up my ability to grasp larger issues upon which a clear understanding of the numbers is based.

My inability to clearly and consistently recall events screws up my ability to understand and plan for tomorrow, because I cannot get yesterday and today straight, and the parts that I do keep straight, do not stay straight.

My understand of many things seems in flux, in motion, foggy. Some things suddenly become clear to me while others, which previously would have been instantaneously clear, are now shrouded in churning and dense fog of yesterdays. And I am mostly unaware of the the fog and it’s motion until the details of it become important to understand and hold on to. I am deeply troubled by the inadequacy of my present “the proof of life and understanding.”

This engagement with our financial planner has so clearly revealed to me the scope of my symptoms of cognitive decline, the depth of those symptoms, and the comings and goings of those symptoms. If you know one person with dementia, you may not even know that person, because who and what they are is changing from issue to issue, moment to moment, past to present, and so on and so on. It isn’t living with ambiguity; it is living with seemingly out of control change that frustrates/bugs/upsets/unnerves/scares me.

I am apprehensive over returning to my speaking tours.

When I am in my comfort zone, when I am surrounded by crystallized memories I still look and sound sound. When I step away from this zone I am not as sound as I sound, and some would say I am less sound than I was six months ago.

Time tells all. Today time is telling me it is increasingly difficult for me to keep yesterday and today straight, and the parts that I do keep straight, don’t stay straight. Time is now telling me more than AM or PM! Telling me things I don’t want to hear or know.


Richard

Coming Events

1. I’m very close to launching The Dementia Network, USA. I’m closer in some ways and farther in others. This is more preparation than I had anticipated. And, I’m not as good at doing it as I thought or want to be.

2. I’m only inches away from signing a contract to publish my second book. Still only inches, but them seem to be the hardest to traverse.

3. I’m still looking for speaking opportunities January - June 2011. And, I now have a few days open in November and December.

4. I’m redesigning my web site - an expensive and complicated project.

Socialceuticals vs.
Pharmaceuticals and Wishes

Hello

Maintaining/Improving the quality of life, purposeful/purpose-filled living seem to me to appropriately and accurately describe desirable, realistic, and reachable goals for folks living with dementia. Slowing down the progress of the disease, preventing it, curing it, or delaying its onset seem more like dreams, wishes, hopes, and impossibilities to me.

Start and stay in today!

Psychosocial modalities (Socialceuticals) are the tools,  the “pills,”  that enable persons living with dementia to achieve these goals. Evidence based psychosocial activities are the means to reach the ends (higher quality of living). Educated, enabling caregivers facilitate the process. Understanding and practicing humanizing dementia care reinforces the process and assures everyone achieves theses ends together.

This is what I believe and seek to create in my own life.
Richard

“Yesterday is the past, tomorrow is the future. Today is a gift, that’s why it is called the present.”
~Bill Keane (Thanks Tina)

New Brain Imaging  Technique Reveals People with Dementia have Knots   in Their Brains!
This is the world’s largest collection of anatomically correct fabric brain art. Inspired by research from neuroscience, dissection and neuroeconomics, current exhibition features a rug based on fMRI imaging, a knitted brain from dissection, and three quilts with functional images from PET. The artists are Marjorie Taylor and Karen Norberg. Techniques used include traditional Nova Scotian rug hooking, quilting, applique, embroidery, beadwork, knitting, and crocheting. Materials include fabric, yarn, metallic threads, electronic components such as magnetic core memory, and wire, zippers, and beads.

Museum of Scientifically Accurate Fabric Brian Art.  To visit this unusual collection of Brains Click Here

The bloom is off the Lilly

Hello

Another dud falls out of the “cure pipeline”

A couple of weeks ago Eli Lilly and Company halted its stage three drug trials on another of the highly promoted pills falling down the the cure pipeline and possibly into the  mouths of those of us living with the symptoms of dementia, probably of the Alzheimer’s type.  Patients  actually worsen on Secretase Inhibitor, a drug based on the theory that the accumulation of amyloid is the cause of the symptoms of  dementia, probably of the Alzheimer’s type.

Preliminary results from two ongoing Phase 3 trials (the IDENTITY and IDENTITY-2 trials) revealed that the drug not only failed to slow cognitive decline in people with mild to moderate Alzheimer disease, but that it actually made them worse (see company press release). Cognition as measured by the ADAS-cog and Activities of Daily Living Scale declined faster in volunteers in the treatment arms compared to those on placebo. “Obviously, we are clearly disappointed about the results for patients, their caregivers, and everyone else,” said Eric Siemers, Medical Director, Alzheimer’s Disease Team at Lilly.

Already the defenders of the theory behind this drug are thinking up and issuing “yes , but” press releases to justify spending more money on research based on this theory.

“The billion-dollar questions on everyone’s mind are whether this is a body blow to the amyloid theory and what this means for all the planned prevention trials using similar drugs,” suggested Murali Doraiswamy, Duke University Medical Center, Durham, North Carolina.

Siemers suggested that one positive thing that came from the trials was a justification for the rationale of using biomarker analysis to determine adequate dosing. In Phase 2 trials, the company used CSF analysis to determine whether the drug got into the brain and had an effect (see ARF related news story and ARF news story). “The fact that people were worse shows that we did get [the drug] into the brain and have an effect,” said Siemers. “Obviously it is not the effect that we wanted, but in a sense it tells you that this biomarker strategy does help you make some conclusions.”

Now we know how to get into folks brains and mess around with their chemistry, but we still have no idea of what to do once we are inside the human brain armed with the ability to change the chemistry of the brain and how it works. Doesn’t this seem like a dangerous discovery?

Richard

I’m not as ambitious as the Folks at the Tangled Neuron, and I didn’t actually call the folks up and talk to them directly. The quotes come from a report at: alzforum.org

If it isn’t Hawaii it’s France-Researchers Meet Again to Cheer each other Up and Release Press Releases Describing whats coming down the Cure Pipeline.

Hello

I’m always on the lookout for new and interesting conferences. In case you were wondering where researchers go to confer (went to Hawaii for the National Alzheimer’s Association World Research Conference a month ago and are going to France next year), here is where they could next.

Alzheimer’s Drug Discovery Foundation CTAD Conference:
Feeding the Pipeline Toulouse, France - November 3, 2010
Hotel Dieu Saint Jacques

Toulouse, France

Feeding the Pipeline: Novel Drug Discovery for Alzheimer’s Disease in a one-day meeting focusing on European biotechnology companies conducting early-stage high risk research for Alzheimer’s disease that complement approaches in advanced clinical trials. This is a satellite meeting to be held in conjunction with the 3rd Clinical Trials on Alzheimer’s Disease conference (CTAD).
If you have additional questions, please contact helkin@alzdiscovery.org or +1.212.901.8009


Richard

Cashing in on each other’s name and checks?

An Important Message from the CEO of the
Alzheimer’s Foundation of America
July 19, 2010

Dear Friends and Colleagues,
The Alzheimer’s Foundation of America (AFA) is proud of our efforts to protect the intent of our donors. It is for that reason that we, regretfully, are currently involved in a lawsuit against the Alzheimer’s Association.

We want to update you on the current legal matters facing AFA.

In order to protect the intent of our donors, AFA recently filed a lawsuit against the Alzheimer’s Association, and last week, we filed an amended complaint. Our case is straightforward - the Alzheimer’s Association has time and again deposited checks into its own accounts from donors who intended to give money to the Alzheimer’s Foundation of America. The Alzheimer’s Association’s chief operating officer has admitted as much under oath, saying that the Alzheimer’s Association will deposit any check that has “Alzheimer’s” as part of the organization’s name.
Despite our requests that the association rectify this situation, the Alzheimer’s Association still has not implemented safeguards that protect the intent of its donors and donors to other charitable organizations. Our own investigation has shown that the Alzheimer’s Association continues to deposit funds directed to the Alzheimer’s Foundation into its own accounts. This must stop….
In response to our lawsuit, the Alzheimer’s Association has sued our organization, contending that we have somehow infringed on its copyright. This lawsuit comes eight years after we registered our trademarks and have been providing programs and services nationwide to serve the dementia population. Since that time, the Alzheimer’s Association has never contested our name or our trademarks. Its lawsuit is nothing but an attempt to divert attention from the real issues at hand, and we are sorry the association has responded in this fashion.

Our work at the Alzheimer’s Foundation of America is quite different from the work of the Alzheimer’s Association. While we respect its mission, it is not ours….

Regards,

Eric J. Hall
Founding CEO and President
Alzheimer’s Foundation of America

If you want to write Eric and tell him what you think about this situation, here is his email address;

afaceo@aol.com

The National Alzheimer Association response:

This email is sent on behalf of Harry Johns to chapter board chairs of the Alzheimer’s Association, with a copy to chapter executives.

The Alzheimer’s Association has become aware of a misleading message from the CEO of the Alzheimer’s Foundation of America dated July 19, 2010.  We deny and dispute all of the allegations against our Association in this letter and in AFA’s lawsuit against us.

We are proud of our 30 years of providing care and support to those impacted by Alzheimer’s and advancing critical research.  We take great pains to safeguard the intent of all charitable donors, and we respect the intellectual property rightsof others.

We also expect others to respect our intellectual property rights including our federally registered, incontestable trademark, ALZHEIMER’S ASSOCIATION®, which we have been using since 1988.  Accordingly, we have commenced a federal lawsuit to stop the activities of AFA which we believe are unfair, unlawful, deceptive, confusing, and   infringing activities.
Our attorneys are quite confident that we will prevail on these matters. However, since these lawsuits are currently pending, we do not feel that it is in the best interests of the fight against Alzheimer’s disease for AFA and us to debate these matters outside of the appropriate legal proceedings.
In the meantime, this will not distract the Association from our mission and we will continue to push research forward and to serve people living with Alzheimer’s and their family members 24/7.

Harry Johns
If you want to write Harry and tell him what you think, here is his email address;

My “take/response” to this sad turn of events:

Hello

and so Goliath (The National Alzheimer’s Association) and David (The Alzheimer’s Foundation of America) are suing each other. Apparently unwilling/unable to talk through their differences based upon their same commitment to meet the needs of those living with dementia or this or that type, their caregivers, and last but not least those who don’t have the disease, these two CEO’s and Boards now publicly shout at each other and legally flail away at each other. Now their own self-interests and priorities are clear. Now they have put our money where their minds really are — self-preservation; protection of their donor lists and contributions; promotion, and blind obedience to their to their respective Boards.

Both organizations, most of the time, talk a good walk. However their  talking and walking are not always the same! This is not the first time these two organizations have flailed away at each other. This time it is just more public. It is a shame that the advocacy work, some of their programs, and  their local chapters and members must stand in line and compete  for what’s left over from fund raising after they have spent what they want on research; law suits; hobnobbing with the rich and famous; and fear- based stigma-reinforcing, self- promoting advertising campaigns.
And what of those who donate? What of those in whose name they raise money to support themselves and their organization? How are we all to respond? To stand up and cheer that each group is concerned about protecting contributions, contributors, monopolist practices?
About the only thing both groups seem to both agree on is they are both in favor of protecting their donors and contributions from each other.
Isn’t this at the least an embarrassing situation, and the most just plain wrong?
Please,  everyone; demand they both stop this new diversion of your time and money. Better yet, take your money and donate it with a stipulation to some local dementia support organization(s) that actually serves all people, with all forms of dementia. Ask it be dedicated to direct services, and psychosocial research; and not fund raising, research, or support of any National Organization. Ask that your money be spent and kept in your community, for your communities direct benefit.
It is time we stood up for ourselves. They certainly are not! We have lived long enough with these two organizations competing rather than cooperating, promoting their own agenda’s rather than leading from an agreed upon joint agenda. It’s bad enough they  both promote hope,  based upon press releases rather than science or a consensus of experts; they both compete for “stars” to endorse their respective organizations and pose for pictures with their respective CEO’s while all but ignoring the millions and millions of non-stars living with the symptoms of dementia. Each has their own “spin” on why they are different, dare I say better, than the other. Based upon my own observations, working directly with each of them, and conversations with dozens of others who have also worked with them - it is my occasionally humble opinion that each of them is isolated from the day-to-day lives of people with dementia.
Each is sure they know what to do and how best to do it, and if only they had more money, fame, support this would be such a better world for all of us. Each of them refuses to honor, integrate, trust people living with the symptoms of dementia to be employees, decision makers, program design participants. (It has taken one of the organizations 28 years to find two people living with dementia who they deemed qualified to be on their Board of Directors, and the other organization still, to the best of my knowledge has no one on its Board living with the symptoms of dementia!) Each of them talks more than they act like they get “it.” — People living with the symptoms of dementia are whole people. They are not on the road of the “long goodbye.” They are still whole and complete human beings. They have a right to be included in meaningful ways and in meaningful numbers into the day to day operations of organizations who raise money in their names.
Stand up, please. Speak out, please. Speak through your checkbooks! As a Nation, as a family, as an individual we cannot rely on these organizations do put the needs of all folks living with all forms of dementia and their caregivers first. They do not trust each other, and we should not trust either of them. This is a very sad moment for me. For years, I have struggled working with both of these organizations. They have run hot and cold, they have over promised and under-delivered, they don’t answer phone calls, they both have large thumbs and aren’t afraid to use them when someone speak up and out.  Many others have questioned why I “wasted my time” trying to influence each of them from within.” Move on,” I was told. “Make a difference without the hindrance of pulling them along behind you.” they said. Could it be that all along they were right, and I was wrong? Probably!
What the dementia crisis in our country and the world lacks is leaders/leadership! What it lacks is the commitment to involve people with dementia as the key element in the design, advocacy, and implementation of a coordinated response to the dementia tsunami.  These two organizations are not performing meaningful and impactful leadership functions, at least not from the perspective of this person with dementia. They take a step forward, a step to the side, and now they have decided to invest some of their time and money in attacking each other in Federal Courts. Hands in the audience if you believe these two trains are on the right leadership track? Stop buying their tickets until they have proved to all they understand servant leadership, they believe in it, and they practice it.
In the mean time, please stand up, speak out, and invest your donations in local based organizations - at least until David and Goliath start working together for the same ends you and I seek.

Richard

More info, Links to info of possible interest to you

Forget Memory - Try Imagination!
The TimeSlips creative storytelling method opens storytelling to everyone by replacing the pressure to remember with encouragement to imagine.

The Time Slips project is redoing its website to offer a variety of ways to tell and share creative stories.
Help us let our software designers know which tools you would most likely use.

https://milwaukee.qualtrics.com/SE?SID=SV_5tZqAuoGJDRB3py
Please share this brief (5 minutes!) survey with family/friends of people with memory loss, and people with early memory loss themselves.

For those new to Time Slips, we’ve been facilitating storytelling with people with memory loss since 1998.  When access to memory is challenged, the imagination can still soar.  See www.timeslips.org for more information.

—————————————————————————————————

Wondering about health aspects of your family tree? A Web site from the National Institutes of Health, NIHSeniorHealth, now offers tools to collect, organize and use information about your family’s health to create a family health history.  The purpose: healthcare providers can use a family history to assess individual health risks and develop prevention strategies.
It’s safe, secure and free
Organize your health information all in one place
Gather your medical records from doctors, hospitals, and pharmacies
Share your information securely with a family member, doctors or caregivers
—————————————————————————————————
Medline plus is a service of the US National Library of Medicine and the National Institutes of Health this site is another “first” place to start when seeking to learn information about dementia of this or that form.
—————————————————————————————————

American Academy of Family Physicians - Objective info about early warning signs of Dementia. For more info Click Here

Food for Thought

“We do not grow absolutely, chronologically. We grow sometimes in one dimension, and not in another; unevenly. We grow partially. We are relative. We are mature in one realm, childish in another. The past, present, and future mingle and pull us backward, forward, or fix us in the present. We are made up of layers, cells, constellations.” ~ Anais Nin
Richard’s Call to Action

Stand up! Speak Up! Do not become a victim of 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.
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 won’t change unless they know, and
they can’t know unless and until you
SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusader, Now!
Lead a Crusade, Now!

Richard
www.richardtaylor.com
richardtaylorphd@gmail.com

“Aim above morality.
Be not simply good,
Be good for something.”

Henry David Thoreau

And isn’t my new assistant (Kari) doing a great job of designing and laying out this newsletter?
Attention folks living with the symptoms of dementia and reading this newsletter - Please!

Stand Up! Speak Out
If you don’t tell others what it is like to live with dementia, how will they ever really know for sure?

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This new template I’m trying out came with this attached coupon.

Order my book, Alzheimer’s from the Inside Out and/or my DVD Be With Me Today by clicking on either of these titles and you won’t save anything off the retail price, but you will get more than your monies worth of information, insight, and a few repeatable and funny stories.

Offer Expires: February 4, 3000

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English Newsletter

Posted by RichardTaylor at 10th August, 2010

Alzheimer’s From the

Inside Out
Report from between the ears and from the heart of Richard Taylor
A person living with the symptoms of Dementia
July, 2010

Hello

RT in New Zealand

and welcome to my new newsletter format. Several people, myself amongst them, have suggested it might make my life less stressful if I would simplify it, my life that is, where ever and when ever I can. I thought I would start with my monthly (sort of) newsletter. This format is easier to use,quicker to put together, self limiting in length (someone told me they printed out one of my recent newsletters and it turned out to be 35 pages long!).

I promise you and myself to keep them shorter. I promise to use my web site more. Already I’ve started to post on the blog portion of it every week. I will try to continue the longer articles on the web site, so this email won’t turn out to be longer than a king size top sheet.

There are lots and lots of other better sources of information than I can offer, so I will concentrate on what I know best, what it is like for me living with dementia, probably of the Alzheimer’s type, and I will pass along a few interesting links to other perspectives and information

.

Saw 1 live Kiwi Bird, and 4 million sheep while visiting New Zealand

I’m going to try (again?) to be positive, but know from my perspective there is soooooooooo much misinformation, hype, hope, fear, stigma being promoted as “news” that I will from time to time tell you what I think and feel about some of it. And there is more than a risk I will get upset a time or two or three.

Thanks for reading this far. It’s easy to opt out of this, and it’s even easier and I believe more interesting, enjoyable, useful, and necessary to stay opted in. Too few folks walking in my shoes speak up and tell others what it’s like to walk in our shoes.

Richard

Yet another sure fire, quick and inexpensive test for Dementia

RT in Spain with Professor Magda Tsolaki, M.D., President, Greek Association of Alzheimer’s Disease and Related Disorders

Hello

Yes, I long ago gave up measuring my dementia and its progress by if I could still remember who the President of the USA was, and how fast could I count backwards from a million by 7.5s. Many folks, even folks who should know better come up to me and tell me they just can’t believe I have Alzheimer’s Disease. I ask them why and they tell me its because I don’t act like I have it. What they mean is I don’t act they way they have seen others act and how they generalize their very small sample of first hand experience with people with dementia to the millions who live with its various symptoms.

Again I say, “If you only know one person with dementia, you know only one person with dementia.” Please stop trying to squeeze us all into the same box or sets of boxes. See us as human beings with a unique disability, unique to us because our brains not our muscles or blood or other organs are expressing our symptoms in an order, with an intensity and a “spin” that is uniquely our own, because our brain is uniquely our own.

I was standing in line at the check-in counter at the air port, trying to get a pass for my Grandson to walk with me through security to my gate. I told the agent why I needed the pass and she said in a voice loud enough to be heard in Dallas (I was in Houston) “You don’t have Alzheimer’s disease.” I assured her that my own life experience and four noted neurologists believed I did and she said: “What’s your first name?” I said “Richard.” She replied “See you don’t have Alzheimer’s Disease”

RT in Town Square in Salamanca, Spain

I thanked her for discovering a new, quick, cheap, simple, and surefire way to test for Alzheimer’s. I told her how happy the medical community would be to discover she had invented such a valid and reliable test.

She gave my  pass for my Grandson and didn’t say a word after that. If you only know one, two or three persons with dementia, you only  know one, one, two or three persons worth of knowledge about dementia, probably of this or that type.

Testing, measuring, labeling are all based upon an agreed upon set of facts of what it is we want to test, measure, and label. Everyone has their own idea of what Alzheimer’s looks like, sounds like, and acts like.

Since no one knows what causes whatever it is everyone is so anxious to measure, everyone seems to just have agreed on calling whatever it is Alzheimer’s Disease, and everyone seems to have collectively agreed not to question each others definition of it, nor each others theory of what causes it. “Let’s just skip that step and start measuring it.” seems to be the silent agreement between competing pills, theories, treatments, and perceptions and expectation as to how someone with Alzheimer’s should act.

Dumb luck, smart guessing, lots and lots of money may find a “cure” for whatever it is we all want “cured.” In the mean time those living with it between their ears and/or in their families are asked to be patient, be supportive, raise funds for research, and did I mention be patient.

I am not on a good day a patient person. Living with the symptoms of dementia I have become less patient. I will not raise funds to cure something that may or may not be “curable.” I will raise funds to study the psychosocial problems/needs of those who live directly and indirectly with the consequences of slipping cognitive functions.

I admit, my self interest plays a big part in this decision. I fear, self interest also plays a big part in the decision of many others (incorporated or unincorporated) to search for the “cure.”
Richard

For more information: Alzheimer’s Greece

Where in the World
is Richard?
oklahomaSeptember 16th - Annual Conference in Oklahoma City (Oklahoma/Arkansas Alzheimer’s Association), Contact Laurel Dinkel ladinkel@cox.net

September 28th - Chappel Hill, North Carolina, Contact Lin Buettner llbuettn@uncg.edu

September 29th & 30th - Greensboro Alzheimer’s Association Greensboro, North Carolina, Contact Lin Buettner llbuettn@uncg.edu

minnesotaOctober 3rd-11th - Lakeview Ranch I, II; Dementia Care Foundation in Darwin, Minnesota, Contact Judy Berry lakeviewranch@yahoo.com

missouriOctober 13th - Americare Nurse Consulting Conference in St. Louis, Missouri, Contact Tina  Buckley tbuckley@americareusa.net

Colorado October 15th-20th - Homeinstead Dementia Caregiver Conferences in Northern Colorado, Contact Kate Aiello kateaiello@comcast.net

October 21st - Alzheimer’s Caregiver Conference in Cincinnati, Ohio, Contact Anissa McBreen Anissa_McBreen@trihealth.com

texasNovember 3rd - Health and Wellness Conference at Cy-fair Hospital @ 10:30, Contact Rebecca Whitelaw rebecca.whitelaw@tenethealth.com

wisconsinNovember 9th-13th - Milwaukee, Wisconsin
9th - Helen Bader Foundation;    Penelope Project
10th - Wisconsin Alzheimer’s Institute
11th & 12th - UWM Center on Age & Community
13th - Alzheimer’s Caregivers Conference, Contact Anne Basting
smbraden@uwm.edu


November 17th-20th - Annual Meeting American Anthropology Association in New Orleans, Louisiana, Contact Athena Mclean athena.mclean@cmich.edu

Coming in 2011;

germany spain switzerland nebraska

belgium texas

Where RT wasn’t &
why he wasn’t there
Hello

One place I was not at, was the annual yell practice for Alzheimer’s researchers. This annual event, held in Hawaii this year and Paris next year, is sponsored by, and as it turns out to be a fundraiser for the National Alzheimer’s Association. Hundreds and hundreds of researchers, press agents, drug companies, reporters, and a relatively few caregivers and real persons who are living with the symptoms of dementia come together once a year and tell each other how hopeful they are, and if only they had more money now surely a cure to Alzheimer’s disease would soon, very soon be discovered.

There was lots of yelling and press releases, lots of cheers, and much hope that soon, no one would say how soon, we will all be living in a world without Alzheimer’s.

Blood tests, brain scans, protein labeling and counting, and of course the now ages old theory based upon all those nasty plaques and tangles found the in brains of folks who lived with the symptoms of Alzheimer’s each had their own cheering sections, and noisy horn blowing followers.

You don’t even have to read between the lines of their cheers, just listen closely to all the words of the cheers - especially those near the end of the cheers - to discover the lack of a foundation for their cheer leading pyramids. Although the piles of promises are getting higher each year, the bases remain the same: unproven, and unsupported by most others.


Richard

For more Information:
ICAD Conference
Another Perspective

Interesting Link

From time to time the National Institute of Health creates a panel of experts whose job it is to look at a major disease and identify  the promising areas of research and treatments around which there is a growing body of confirming evidence and a clearly developing consensus of experts’ agreement and support. This year it was Alzheimer’s Disease’s turn to be objectively evaluated.

What works and doesn’t work, what pills are best, what research is producing valid and reliable results and developing a following of other experts.

The bottom line for the NIH is where and how should they spend the limited research funds available to them from Congress in researching the major diseases of our time? How can their funded research build on the best ideas, the best research? Where do they need to put a fresh focus and funds on treatment modalities that are working.

The conference chairperson,  Dr. Martha L. Daviglus, professor of preventive medicine and medicine at Northwestern University, Chicago. “We wish we could tell people that taking a pill or doing a puzzle every day would prevent this terrible disease, but current evidence doesn’t support this…..”

Please read the entire report. It addresses most every claim, hope, press release, prayer, desire of every researcher, drug rep., and others who are the “world without Alzheimer’s” cheerleaders, hope generators, etc. The conclusions reached by the NIH panel are another breath of fresh air. Although the taste of their conclusions leave in the mouths, hearts, and minds of caregivers and persons living with dementia is bitter, honest, difficult to swallow and as true a description of where all our billions of research dollars have brought us as I have ever read.

Richard

More Information about the Conference than anyone needs to know

Am I getting mad again, or am I still mad?

RT sleeping on bus on way to “Think Tank”

Hello
Honest, I don’t have the energy to find out the chicken or egg answer - but I do know I have a growing sense of up-setness within me. I’m more impatient, and I feel uneasy. I act in the words of others agitated. Sometimes I become unexpectedly upset, and lose for a few moments my positive “spin” on my own life.

“Why?” you may rightly ask? I don’t know. Moods always come and go depending on circumstances, but of late they have taken

RT sleeping in Salvador Dali’s bed in Madrid, Spain

the form of waves rather than ripples. The pond of my feelings never seems to settle down. Is it me or the disease, or both? Am I and my chronic condition with it’s accompanying mood swings one in the same? I don’t know, and sometimes worry about worrying. Oh, oh!

Richard

Coming Events

1. I’m very close to launching The Dementia Network, USA.

2. I’m only inches away from signing a contract to publish my second book.

3. I’m looking for speaking opportunities January - June 2011.

I wish I had said that - I wish I could say that

RT and 2 million yr old fosilized tree cross-section at the National Academy of Sciences - Washington, D.C.

Hello

I’m conducting more involuntary word searches these days. I can’t find the right word, in fact I can’t find any word to describe what I want to say. “You know what I mean.” say I. “That thing, you know, that thing I was just thinking about. What is it? Where is it? Who is it?”

It’s not that I can’t find the “right word,” I can’t find ANY words to describe what I know I am thinking about, but I can’t even find the words to listen to myself thinking about it. It’s not on the tip of my tongue (the TOT phenomena). I’m not even close to finding the right word, because the harder I try the more confused I become between my ears as to what I am trying to say; and the more confused and frustrated others become trying to understand me.

RT and Cathy Greenblat (A note worthy Photographer & Socialogist) at the Washington, D.C. (N.A.S.) opening of her exhibition

I hate this condition!

I no longer seem to “will away” the symptoms. I don’t “hide” them or
“cover them us” as well as I once did.

And so the progression, progresses.

Richard

For more information:

Link to Exhibit

What does a lack of evidence really mean?

RT, Jenny Abbey,PHD, Martin Prince,M.D. Listen attentivly in Auckland, New Zealand

Hello

Recently, and again, yet another highly promoted pill turned out to be less effective that even the placebo! There were hints, half hopes/half claims, shouted expectation that this pill would not only stop the progress of the symptoms, but reverse the symptoms.

Dimebon bombed. Results varied from test site to test site, and honest, by some measures the placebo did better than the pill - at least that is what caregivers/self-reports/papers and pencils and questions and professional observations claimed.

Researches, drug companies, and some organizations betting a goodly portion of their donations on finding a cure all agreed that these results were clear proof we should spend more money, faster - because after 25 years we still didn’t have two evidence based clues to rub together and begin to form a consensus on what researchers should do next. Their conclusion - pay us to do it all, at once, and surely one of us smart folks will stumble across something.

In the mean time - little is spent on psychosocial research. Relatively little is invested in trying to identify what goes on in the minds and hearts of folks deep into dementia. Almost no attention is paid to how to discover through systematic investigation how to communicate with someone who has lost the ability to say what they might be thinking, and think what they might be saying or perhaps not speaking at all.

Could 25 years of failures mean we are barking up the wrong trees? spending our ways down blind alleys? ignoring reality and pretending what we think might be true, is in fact true - even if we can’t prove it?

Madness is sometimes defined as doing the same things over and over again - and expecting different results. Welcome to the world of dementia research.



Richard

For more Information: Dimebon the Hype
Dimebon Fails in Study
Abbey Pain Scale
10/66 Dementia Research Group

Food for Thought

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”
- Albert Camus

Richard’s Call to Action

Stand up! Speak Up! Do not become a victim of 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.
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 won’t change unless they know, and
they can’t know unless and until you
SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusader, Now!
Lead a Crusade, Now!

Thinkers from the “Think Tank”

Richard

Two new Best Friends from New Zealand:Tania & Nigel Wynn
www.richardtaylor.com
richardtaylorphd@gmail.com

“Aim above morality.
Be not simply good,
Be good for something.”
Henry David Thoreau

Attention folks living with the symptoms of dementia and reading this newsletter - Please!

Stand Up! Speak Out
If you don’t tell others what it is like to live with dementia, how will they ever really know for sure?

Save 0%

This new template I’m trying out came with this attached coupon.

Order my book, Alzheimer’s from the Inside Out and/or my DVD Be With Me Today by clicking on either of these titles and you won’t save anything off the retail price, but you will get more than your monies worth of information, insight, and a few repeatable and funny stories.

Offer Expires: February 4, 3000

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Category : Uncategorized (1) Comment

Spanish Newsletter

Posted by RichardTaylor at 3rd August, 2010

Alzheimer’s From the Inside Out
Informe de entre las orejas y desde el corazón de Richard Taylor
Una persona que vive con los síntomas de demencia
Julio 2010

Buenos días

RT en Neuva Zelandia

Y bienvenidos a mi nuevo formato de boletín. Varias personas, yo entre ellos, han sugerido que podría hacer mi vida menos estresante si yo simplificar, mi vida es, donde nunca y cuando nunca puedo. Pensé que podría comenzar con mi mensual (especie de) newsletter. Este formato es más fácil de usar,rápido para poner juntos, limiten en longitud (alguien me dijo que imprimió una de mis últimos boletines y que resultó ser 35 páginas largo!). Le prometo y yo a mantenerlos cortos.

Le prometo y yo a mantenerlos cortos. Prometo usar mi sitio web más. Ya he comenzado a puesto en el blog parte de cada semana. Voy a tratar de seguir los artículos más largos en el sitio web, para que este correo no resultan ser más de un rey tamaño hoja superior.

Hay lotes y muchos otros mejores fuentes de información de lo que puedo ofrecer, por lo que se concentrará en lo que mejor conozco, lo que es para mí viven con demencia, probablemente del tipo Alzheimer, y voy a pasar junto a unos enlaces interesantes que otras perspectivas e información.

Vio vivo 1 Kiwi Bird, y 4 millones de ovejas mientras visitaba Nueva Zelandia

Voy a tratar (nuevo?) a ser positivo, pero sabemos desde mi perspectiva hay soooooooooo mucha información errónea, hype, la esperanza, miedo, el estigma promueve como “noticias” que yo de tiempo en tiempo decirle lo que piensan y sienten sobre algunas de ellas. Y hay más de un riesgo ME enojan una hora o dos o tres. Gracias por leer esta medida. Es fácil optar fuera de esto, y es incluso más fácil y creo más interesante, agradable, útiles y necesarias para estancia optó.

Gracias por leer esta medida. Es fácil optar fuera de esto, y es incluso más fácil y creo más interesante, agradable, útiles y necesarias para estancia optó. Muy pocas personas caminando en mis zapatos hablar y decir a los demás lo es como andar en nuestros zapatos.

Richard

Otro seguro fuego, rápida y barata prueba para la demencia

RT en Espana con el Profesor Magda Tsolaki, M.D., Presidente, Asociacion griega de la enfermedad de Alzheimer y trastornos relacionados

Hola

Sí, me hace mucho tiempo dio hasta medir mi demencia y su progreso por si me podría todavía recuerdan que el Presidente de los Estados Unidos, y la rapidez podría yo cuento atrás de un millón por s. Muchas personas, incluso gente que debería conocer mejor a mí y me dicen que simplemente no puedo creer tengo la enfermedad de Alzheimer. Les pido por qué y me dicen que su porque yo no actuar como lo tengo. Lo que quieren decir es que no actúan que forma en que han visto a otros actuar y cómo generalizar su muestra muy pequeña de primera mano experiencia con las personas con demencia a los millones de personas que viven con sus diversos síntomas.

Vuelvo a decir, “si sólo conoce una persona con demencia, usted sabe sólo una persona con demencia.” Por favor dejar de tratar de apretar todos nosotros en la misma casilla o conjuntos de cajas. Nos ven como seres humanos con un único discapacidad, única para nosotros, porque nuestro cerebro no nuestros músculos o sangre u otros órganos están expresando nuestra síntomas en un orden, con una intensidad y una “spin” que es singularmente nuestro propio, porque nuestro cerebro es singularmente nuestra propia.

Yo estaba de pie en línea en el check-in en el puerto aéreo, tratando de conseguir un pase para mi nieto para andar conmigo de seguridad a mi puerta. Le dije al agente por qué YO necesitaba el pase y dijo en una voz suficiente para ser escuchado en Dallas (yo estaba en Houston) “Usted no tiene la enfermedad de Alzheimer.” Yo le aseguró que mi propia experiencia de vida y cuatro señaló neurólogos cree hice y dijo: “¿cuál es tu nombre?” me dice “Richard.” Ella contestó “Ver usted no tiene la enfermedad de Alzheimer”

RT en Plaza de la ciudad en Salamanca, Espana

AGRADECÍ a ella para descubrir una nueva, rápida, barata y sencilla, y surefire forma de prueba de Alzheimer. Le dije la satisfacción de la comunidad médica sería para descubrir que había inventado un válido y confiable prueba.

Ella dio mi pase para mi nieto y no decir una palabra después de eso. Si sólo conoce uno, dos o tres personas con demencia, usted sólo conoce uno, uno, dos o tres personas vale la pena del conocimiento sobre demencia, probablemente de tal o cual tipo.

Ensayo, medida, etiquetado son todos basada en un acuerdo conjunto de hechos de lo que se nos quiere probar, medir y etiqueta. Todo el Mundo tiene su propia idea de qué Enfermedad de Alzheimer, parece, suena como, y actos similares.

Ya nadie sabe qué causa sea lo que sea todo el mundo está tan ansioso a medida, todo el mundo parece que sólo han convenido en llamar lo que es la enfermedad de Alzheimer, y todos parecen haber acordado colectivamente no pregunta cada otros definición de ella, ni los demás teoría de qué causas. “Let’s just saltar ese paso y empezará a medir.” parece ser el acuerdo tácito entre competidores píldoras, teorías, tratamientos y percepciones y expectativas en cuanto a cómo alguien con Alzheimer, debe actuar.

Dumb luck, smart adivinar, lotes y montones de dinero puede encontrar un “cura” para lo que sea que todos queremos “curar.” En la media hora los que viven con ella entre sus oídos y/o en sus familias se preguntó a ser paciente, ser solidario, recaudar fondos para la investigación, y no lo menciono ser paciente.

No estoy en un buen día un paciente persona. Viven con los síntomas de demencia he vuelto menos paciente. No voy a recaudar fondos para curar algo que puede o no ser “curable.” Yo recaudar fondos para estudiar los problemas psicosociales y necesidades de los que viven directa e indirectamente con las consecuencias de deslizamiento las funciones cognitivas.

Admito, mi interés propio desempeña una gran parte de esta decisión. Me temo, interés propio también desempeña una gran parte de la decisión de muchos otros (o no) para buscar a los “cura.”

Richard


Para más información:
Enfermedad de Azheimer Grecia

Cuando en el mundo es Richard?
texas7 De Agosto - Demencia Verano Lecture at Atascosita Iglesia Presbiteriana de Houston, TX, contacte a Linda Purves linda@apchumble.org

oklahoma16 De Septiembre - Conferencia Anual en Oklahoma City (Oklahoma/Arkansas Alzheimer’s Association), Contacto Laurel ladinkel@cox.net


28 De Septiembre - Chappel Hill, Carolina del Norte, Contacto Lin Buettner llbuettn@uncg.edu

Septiembre 29 & 30ª - Greensboro Alzheimer’s Association Greensboro, Carolina del Norte, Contacto Lin Buettner llbuettn@uncg.edu

minnesotaOctober 3ª y 11ª - Lakeview Ranch I, II; Demencia Care Foundation en Darwin, Minnesota, comuníquese con Judy Berrylakeviewranch@yahoo.com

missouri13 De Octubre - Americare Enfermera Consulta Conferencia en St. Louis, Missouri, Contacto Tina Buckley tbuckley@americareusa.net

ColoradoOctubre 15-20th - Homeinstead Demencia Cuidador Conferencias en Northern Colorado, Contacto Kate Aiello kateaiello@comcast.net

21 De Octubre - Enfermedad de Alzheimer Cuidador Conferencia en Cincinnati, Ohio, Contacto Anissa McBreen Anissa_McBreen@trihealth.com

kuala lumpur23 De octubre-24 - 13a Asia-Pacífico Conferencia Regional, la enfermedad de Alzheimer Internacional en Kuala Lumpur, Malasia, Contacto
adfmsec@streamyx.com

texas3 De Noviembre - Health and Wellness Conferencia en Cy-fair Hospital @ 10:30, Contacto con Rebecca Whitelaw rebecca.whitelaw@tenethealth.com

wisconsinNoviembre 9a. 13ª - Milwaukee, Wisconsin
9ª - Helen Bader Foundation; Proyecto, Penélope
10ª - Wisconsin Alzheimer’s Institute
11ª y 12ª - LA Centro de la edad y Comunidad
13ª - Enfermedad de Alzheimer Cuidadores Conferencia, comuníquese con Anne
Basting
smbraden@uwm.edu


Noviembre 17-20th - Reunión Anual American Antropología Association en Nueva Orleans, Louisiana, Contacto Athena Mclean athena.mclean@cmich.edu

Próximos en 2011;

germany spain switzerland nebraska

belgium texas

Donde RT no y por qué no estaba allí
Hola

Un lugar yo no estaba en, fue el grito anual práctica de Alzheimer, investigadores. Este evento anual, que se celebró en Hawaii este año y en París el año próximo, está patrocinado por, y que resulta ser un recaudador de fondos para el Alzheimer’s Association. Cientos y cientos de investigadores, prensa agentes, empresas farmacéuticas, reporteros, y relativamente pocos cuidadores y real personas que viven con los síntomas de demencia se reúnen una vez al año y decir a cada otros cómo esperanza son, y si sólo tenían más dinero ahora seguramente una cura para la enfermedad de Alzheimer pronto, muy pronto se descubrió.

Hubo lotes de gritos y comunicados de prensa, lotes de vítores, y mucha esperanza de que pronto, nadie podría decir cuán pronto, todos estaremos viviendo en un mundo sin enfermedad de Alzheimer.

Los exámenes de sangre, brain scans, proteína etiquetado y el escrutinio, y por supuesto el ahora edades vieja teoría sobre la base de todos esos desagradables placas y ovillos neurofibrilares encontraron el cerebro de personas que viven con los síntomas del mal de Alzheimer cada uno tenía su propio vitorear secciones, y ruidosos cuerno soplar seguidores.

Ni siquiera tienen que leer entre líneas de sus vítores, escuche atentamente todas las palabras de los vítores - especialmente los cerca de la final de los vítores - descubrir la falta de una fundación para su alegría principales pirámides. Aunque los montones de promesas son cada vez más cada año, las bases siguen siendo las mismas: no probados, y no están respaldadas por mayoría de los otros.


Richard

Para más información:
DESARROLLO Conferencia
Otra Perspectiva

Interesante Enlace

De vez en tiempo del Instituto Nacional de Salud crea un grupo de expertos cuya tarea es mirar a una enfermedad grave y determinar las zonas prometedoras de investigación y tratamientos alrededor del cual hay un creciente grupo de confirmar pruebas y un desarrollo claramente consenso de expertos acuerdo y apoyo. Este año se la enfermedad de Alzheimer, pasamos a ser evaluados objetivamente.

Lo que funciona y no funciona, ¿qué píldoras son los mejores, ¿qué investigación está produciendo válida y resultados confiables y desarrollar una siguiente de otros expertos.

La línea final para el NIH es dónde y cómo deberían pasar la poca investigación fondos disponibles para ellos en el Congreso en investigar las principales enfermedades de nuestro tiempo? ¿Cómo sus investigaciones financiadas construir sobre las mejores ideas, la mejor investigación? ¿De dónde necesidad de poner un nuevo enfoque y fondos sobre modalidades de tratamiento que están trabajando.

El presidente de la conferencia, Dr. Martha L. Daviglus, profesor de medicina preventiva y la medicina en Northwestern University, Chicago. “Queremos que podríamos decirle a la gente que tomar una píldora o haciendo un rompecabezas cada día sería evitar esta terrible enfermedad, pero las pruebas actuales no soporta esta…..”

Lea el informe completo. Que las direcciones más cada reclamación, esperanza, comunicado de prensa, la oración, deseo de cada investigador, drogas rep., y otros que son el “mundo sin Alzheimer’s” porristas, esperanza generadores, etc. Las conclusiones a que llegó el NIH grupo son otra bocanada de aire fresco. Aunque el gusto de sus conclusiones dejar en la boca, corazones y mentes de cuidadores y personas que viven con demencia es amargo, honesta, difícil de tragar y como verdaderos una descripción de donde todos nuestros miles de millones de dólares de investigación nos han traído como que jamás he leído.

Richard

Más información sobre la Conferencia que nadie necesita saber

¿Estoy obteniendo mad nuevamente, o ¿todavía estoy loco?

RT durmiendo en autobus en forma de “Think Tank”

Hola

Honesto, no tengo la energía para averiguar el pollo o huevos respuesta - pero yo no sé que tengo una creciente sensación de setness dentro de mí. Estoy más impacientes, y me siento incómodo. Yo actúe en las palabras de otros agitado. A veces me convertirse inesperadamente molesto, y perder por unos momentos mi positivo “spin” sobre mi propia vida.

“¿Por qué?” puede pedir razón? No sé. Estados de ánimo siempre ir y venir dependiendo de las circunstancias, pero de

RT durmiendo en Salvador Dali, cama en Madrid, Espana

finales que han tomado la forma de olas en lugar de ondas. El estanque de mis
sentimientos nunca parece calmarse. Es que me o la enfermedad, o ambos? Soy yo y mi condición crónica con que acompaña los cambios de humor uno en la misma? No sé, y a veces preocuparse preocupante. ¡Oh, oh!

Richard

Acontecimiento venidero

1. Estoy muy cerca de lanzar la demencia Network, ESTADOS UNIDOS.

2. Estoy muy pocos centímetros de firmar un contrato a publicar mi segundo libro.

3. Estoy buscando oportunidades en Enero - Junio de 2011.

I wish I había dicho que - I wish I podría decir que

RT y 2 millones de dolares yr old fosilized arbol secciontransversal en la Academia Nacional de Ciencias Washington, D.C.

Hola

Estoy realizando más involuntarios palabra búsquedas en estos días. No puedo encontrar la palabra correcta, de hecho no puedo encontrar alguna palabra para describir lo que quiero decir. “Ustedes saben lo que quiero decir.” decir I. “esa cosa, usted sabe, que yo estaba pensando. ¿Qué es esto? ¿Dónde está? ¿Quién es?”

No es que no puedo encontrar el “derecho palabra”, no puedo encontrar palabras para describir qué sé que estoy pensando, pero no puedo incluso encontrar las palabras para escuchar a mí mismo pensar en ello. No es en la punta de mi lengua (la TOT fenómenos). Ni siquiera ESTOY cerca de encontrar la palabra correcta, porque la difícil intentar I más confundido convertirse entre mis oídos como lo que estoy tratando de decir; y más confundido y frustrados otros convertido tratando de entender me.

RT y Cathy Greenblat (Una nota digno Fotografo y Socialogist) en Washington, D.C.  (N.A.S.) apertura de su exposicion

Me gusta esta condición!

Yo ya no parecen “lejos” los síntomas. Yo no “ocultar” o “cubrirlas con nosotros” así como hice yo una vez.

Y así la progresión, progresa.

Richard


Para más información:
Hablando, la lengua y la demencia

Enlace a exhibir

¿Qué significa un falta de pruebas significan realmente?

RT, Jenny Abbey,PHD, Martin Prince,M.D. Escuchar attentivly en Auckland, Nueva Zelanda

Hola

Recientemente, y nuevamente, otro altamente promovido píldora resultó ser menos eficaz que incluso el placebo! Hubo consejos, la mitad esperanzas/media reclamaciones, gritó expectativa de que esta píldora no sólo detener el progreso de los síntomas, pero revertir los síntomas.

Dimebon bombardeada. Resultados variaban de prueba sitio de ensayo, y honestos, por algunas de las medidas el placebo no mejor que la píldora - por lo menos que se lo cuidan/self-reports/papeles y lápices y preguntas y profesional observaciones reclamada.

Investiga, las compañías farmacéuticas, y algunas organizaciones apuestas una buena parte de sus donaciones en encontrar una cura todos convinieron en que estos resultados fueron una prueba clara que debemos gastar más dinero, más rápido, porque después de 25 años que aún no tienen dos basada en la evidencia pistas a friccionar y comienzan a formar un consenso sobre lo que los investigadores deben hacer a continuación. Su conclusión - nos paga a hacerlo todo, a la vez, y sin duda uno de nosotros smart gente tropezarán en algo.

En el ínterin - poco se gasta en investigación psicosocial. Relativamente poco se invierte en tratar de identificar lo que pasa en las mentes y corazones de gente profunda en demencia. Casi no se presta atención a cómo descubrir mediante investigación sistemática cómo comunicarse con alguien que ha perdido la capacidad de decir lo que pudiera estar pensando, y pensar en lo que podría ser diciendo o quizás no hablando en todos.

Podría 25 años de fracasos significa que estamos barking hasta el mal árboles? Gasto nuestras formas down ciegos callejones? Ignorar la realidad y pretendiendo lo que pensamos podría ser cierto, es de hecho cierto -incluso si no podemos probar?

Locura es a veces definido como haciendo las mismas cosas una y otra vez - y esperando resultados diferentes. Bienvenidos al mundo de demencia investigación.

Richard

Para más información: Dimebon las exageraciones
Dimebon Falla en estudio
Abbey Escala de dolor
10/66 Demencia Research Group

Sustancia para el pensamiento

“No camine detrás de mí; yo no podrá conducir. No camine en frente de mí; no puede seguir. Sólo caminar junto a mí y ser mi amigo.” - Albert Camus
Richard Llamada a la Acción

Stand up! Hablar hasta! No se convierta en
una víctima de su propio silencio.

Hablan por sí mismo y aquellos que va a seguir.
Pedir cuidadores y amigos a hacer lo mismo.
Hoy no será nunca aquí nuevamente.
El Tiempo es la esencia!! Usar sabiamente!!

Dígale a tantas personas como posible su percepción de su
interacción con los profesionales, con cuidadores,
con amigos, con extraños, con su gobierno.

Ellos no cambiará si ellos saben,
y no pueden saber menos
y hasta que usted
Hablar Hasta!

Tratan de crear una Palpable sentimiento de cambio y de Urgencia!

Unirse a una cruzada, Ahora!
Ser un Crusader, Ahora!
Llevar una cruzada, Ahora!

Pensadores de la “Think Tank”

Richard

Dos nuevas y mejores amigos de Nueva Zelanda: Tania & Nigel Wynn

www.richardtaylor.com
richardtaylorphd@gmail.com

“Objetivo anteriormente moral.
No simplemente buena,
ser bueno para algo.”
Henry David Thoreau

Atención gente viviendo con los síntomas de demencia y lectura este boletín - Por favor!

Stand Up! Hablar si no dicen otros lo que es vivir con demencia, ¿cómo alguna vez realmente sabemos con certeza?

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Esta nueva plantilla estoy intentando salió con este cupón adjunta.

Para mi libro, Alzheimer’s from the Inside Out y/o mi DVD Be With Me Today haciendo clic sobre cualquiera de estos títulos y usted no guardar nada fuera de la menor precio, pero usted recibirá más de su dinero vale de información, intuición, y unos pocos repetible y divertidas historias.

Oferta expira: Febrero 4, 3000

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