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Hello
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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  my 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
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INTERESTING FACTS
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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
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Where in the World
is Richard?
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 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
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
 October 3rd-11th - Lakeview Ranch I, II; Dementia Care Foundation in Darwin, Minnesota, Contact Judy Berry lakeviewranch@yahoo.com
 October 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
 October 15th-20th - Homeinstead Dementia Caregiver Conferences in Northern Colorado, Contact Kate Aiello kateaiello@comcast.net
 November 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;
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Right or Wrong?
Suicide or Murder?
Wrong Questions!
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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
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Time knows all, but it isn’t telling me everything I need to know.
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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
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Coming Events
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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.
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Socialceuticals vs.
Pharmaceuticals and Wishes
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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)
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| 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.
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| The bloom is off the Lilly |
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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
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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.
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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
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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).
Richard
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Cashing in on each other’s name and checks?
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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
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The National Alzheimer Association response:
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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 rights of 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;
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My “take/response” to this sad turn of events:
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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
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More info, Links to info of possible interest to you
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 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.
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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
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 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.
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| 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
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| And isn’t my new assistant (Kari) doing a great job of designing and laying out this newsletter? |
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| 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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| 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.
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| Offer Expires: February 4, 3000 |
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Alzheimer’s From the
October 21st - Alzheimer’s Caregiver Conference in Cincinnati, Ohio, Contact Anissa McBreen
November 3rd - Health and Wellness Conference at Cy-fair Hospital @ 10:30 in Houston, Texas, Contact Rebecca Whitelaw 
American Academy of Family Physicians - Objective info about early warning signs of Dementia. 
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