Author Archive
Report from the National Institute of Health on the Status/Health of Alzheimer’s Research
Posted by at 12th August, 2011
I Can! I Will!
Posted by at 10th August, 2011
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September is World Dementia Awareness Month, Here are some real contributions we have already received, plus instructions on how you too can join us. Thanks for your support this project. Please pass the word about this project to other like-minded folks. Email your contributions to: standupspeakout2011@gmail.com.
We will gladly help you with the form if you will just send us your ideas, plus if you want a picture of yourself. Pictures make our words/ideas seem more personal! Thanks for joining other kindred spirits in creating this “best practices/trial and error” clearing house. Richard On the I CAN! I WILL! website we will publish cyber books. Each book will be filled with your suggestions for activities to raise awareness about dementia and to fight against the stigma. There will be one book with ideas that people living with the symptoms of dementia might consider implementing, plus books for their family carers and friends, medical professionals, professional carers, Alzheimer’s Associations and others. This site will develop into a resource for individuals, groups, organizations and countries to consult when they are looking for ideas of how to stand up and speak out. Suggested Format for Postings Here is the suggested format for the idea posting. If you feel comfortable doing so, please provide a photo of yourself. To give you some guidance regarding activity ideas and format, sample postings are included after this section. 1. Subject line/title: One short sentence describing your idea. 2. Introduce yourself (whatever information you are comfortable making public). For example: · Your name (at least your first name), where you live (town, state/province, country). · If you have dementia, what form of dementia (Alzheimer’s, Lewy Bodies, etc.), how long since your diagnosis. · If you are a care partner, for whom, how long, what form of dementia. · If you are a professional in the field of dementia, what do you do and where? 1. Summarize your idea or just tell us your story. You can outline your idea and the reasons behind it; perhaps you are basing your awareness-raising activity on your own personal experience. If you think that talking about your personal experience will help someone else to understand and implement your idea, then please provide as much information as you feel comfortable. 2. Who should think about implementing this idea? For example, is your idea targeted to a person with dementia, a doctor, an activity director? This doesn’t mean your idea is restricted to only being done by that type of person; this information just helps us categorize your idea and make it easier to find on the website. 3. Contact Information: Web page, book, and/or email address of the idea author A Sampling of Ideas Submitted Thus Far Here are some ideas from folks from around the world, both with and without dementia. These are real ideas, contributed by real people, and these will be live on the website when it is launched. These ideas are meant to inspire you to contribute your own ideas. Send your ideas to standupspeakout2011@gmail.com. * Hallo: I try when I can to speak up. Two months ago, I organized a meeting in our library about Alzheimer’s and other dementias. I ask my doctor-psychiatrist to talk about this disease and I was there like her patient. People could ask me and her questions about this disease. The director of library told me later that it was very successful. I am grateful that I am still able to do this. This is because I have some special form of Alzheimer’s disease, not typical as I am “young.” Secondly, I know about my problems and I can speak about it. For me being able to speak about my disease and my problems was not good at the start of my problems because the doctors thought that I did not speak true and that I fabricated the problems with my memory and reasoning and thinking. It took 9 months to find out that I have really Alzheimer’s disease! I was at many doctors and I was in hospital for observation — in Psychiatry hospital — for 3 weeks. I would also like to share with other people fighting with Mr. Alzheimer about some things that help me. Every evening I prepare my schedule for the next day. I write on paper all the activities and then I enter a reminder in my phone to inform me of a meeting or appointment. Usually I have two times reminders, just to be sure My second idea is that for every “difficult” thing like washing clothes I prepare a scheme or checklist: For example: - choose the clothes Then I do all these points and check them off as I do them. With best regards Nina Baláčková E-mail:
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Living with my late husband Alex in Florida for ten years, we have together and at home experienced his journey with Mr. Alzheimer increasingly intruding into our partnership and marriage. One problem Alex did NOT have was the kind doctors prescribe a blue pill for. He was still, in his seventies, a healthy man, full of energy, and he loved to make love. And I, nineteen years younger than him, loved to make love, too. Mr. Alzheimer didn’t change that. What changed — as one of the first symptoms showing up — was Alex becoming more and more careless about the condition of his bathroom and especially the cleanliness of his body. This turned me off. Asking Alex to read a “How to…” book didn’t help; to argue didn’t help either. Finally we found a nice solution: I moved out of our master bedroom and king size bed to a Alex did not only take a shower. He put on some fragrance and a beautiful silk Kimono, he looked great and the expression of excitement in his eyes surely turned me on, too! Best wishes to you and your family, * Hello: In the initial results of this research, I have been able to demonstrate that conversation is an activity that is influenced by the healthy conversational care partners who actively participate and help the person with dementia to compensate for their limitations. The care partners thus support the person with dementia to remain active and present in the conversation, despite the negative characteristics that many researchers have described such as: anomia, paraphasias, circumlocutions and repetitions. Thus, when evaluating how the person with dementia participates in conversation, it is necessary to also evaluate “how” and “how much” people talk around the patient.
The knowledge gained in this research has helped me to develop workshops to provide guidance tocaregivers on how to stimulate conversation with their loved ones with dementia; this type of experience has also allowed me to learn much more about this topic so I am currently drafting a guide for stimulatingcommunication between people with dementia, aimed to the caregivers and the patients families. E-mail:brvallesg@gmail.com *
Years after his death, I wish we had moved more slowly. We might have avoided stressful tests and the medicines that seemed to make him worse. I might have spent more time just being with Dad, and less time trying to “fix” him.
If you’re a caregiver or family member, I would encourage you to recognize that the science behind dementia diagnosis and treatment is still evolving, and that each person’s dementia may be different. I think it’s best to be skeptical when you hear generalizations about symptoms, diagnosis, treatment and care. Be cautious when experts talk about what “they” [people with dementia] need — consider the individual instead.
This does not mean you should ignore the needs, safety or comfort of the person with dementia. Some issues must be addressed immediately. But when you can, take the time to educate yourself about the state of the science, and try to separate hype from reality. Don’t be influenced by advertisements or headlines about the latest study. Think carefully about the risks and benefits of each treatment. Above all, spend some time listening to the person with dementia. If communication is difficult, try to think about what he might want based on his life history and current situation. Take into account his age, overall health and specific preferences. Relate to him as a person, not as a patient.
Sometimes “slow care” is best.
Best wishes on your journey, Mona Email: mona@tangledneuron.com |
My name is Nina Baláčková and I live in Prague, Czech Republic. I am 52 years old. I have a very good husband and two adult children. I have Alzheimer’s disease from 2007.
Hello, I am Tina Hackel, and I live now in my home country Switzerland.
My name is Beatriz Valles. I live in Venezuela and work as a volunteer at the Alzheimer’s Foundation of Venezuela, Chapter Nueva Esparta. I am a Language Therapist and for five years I have been investigating the characteristics of conversation between people with dementia and their primary caregivers.
Hello, I’m Mona Johnson and I live in the state of Wisconsin, in the United States of America. My father developed dementia when he was in his 60s. After reading about scientific breakthroughs and improved diagnosis, I encouraged Dad to seek testing right away, and to get the best treatment possible.
How Alzheimer’s Across the Pond is Presented
Posted by at 9th August, 2011
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Everyone affected by dementia has a unique story to tell and by sharing your experience, you can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.
The Answers are “in the bag”
Posted by at 8th August, 2011
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The Answers are “in the bag” |
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Hello, Will I “get” Alzheimer’s Disease/Dementia? How can I know before even my brain knows, or at least shows any signs of knowing? The answers claim the usual gang of suspects turns out to be in a bag of bodily fluids (mostly blood and spinal fluid), DNA, Genes, and stuff I spilled on myself while eating lunch just before I went in to the “create your own bag of bio markers” get-together.
Never mind no one claims to know why or how this happens, just be excited about the fact that some form or forms of dementia (if indeed dementia comes in forms) can be predicted before they overwhelm a brain’s ability to cover them up. Let us elevate, honor, and support this bag. Let’s base new treatments, drugs, and ways of dealing with dementia on the results of everyone’s bag of biomarkers. The fact we still don’t know what causes these symptoms, how to slow down the symptoms, and how to cure it should now be clearer to everyone, argues the bag’s promotion team of researchers, politicians, and people who claim the leadership in creating a world without Alzheimer’s.
Now at least we can identify subjects for their studies, 90% of whom will someday be living with slipping cognitive functions.
Ignore how costly, invasive, unavailable the tests to fill the bags are. Ignore the fact that the all the markers don’t appear in everyone’s bags. They just keep filling bags until they got to 90% predictability. And what was the gold standard upon which the 90% accuracy prediction rate was based? Contradictory conclusions between noted pathologists as to what they saw, and what it meant? Brains that displayed the biology of plaques and tangles, but some lives that had few if any symptoms.
Then why is everyone making such a big deal about the bag and what is inside it? We are now being reconditioned by the well intended (most of them, some of the time) dark forces of the keepers of the myths and stigmas of the label Alzheimer’s disease. Now they not too subtly turn our attention, our language, our way of talking about and thinking about dementia away from dementia and to the exclusive use of the label Alzheimer’s disease, to refer to the public health crisis that has already begun with the initial 65th birthday parties of the baby boomer generation.
This label, they promise can be, erased, it can be cured, and now they claim/hope/promise/suggest it can be accurately pre-applied to folks exhibiting no symptoms of dementia. This label can be slowed down. Yes, they now hint/suggest/hope/wonder aloud that would not it be wonderful if it could/can be pre-identified before it even applies in any way anyone can currently explain. After all if we could wish this to be true, would not it be easier to wish that once this was true than we would be closer to our wish> for treatments, pills, and better lives to be just around the corner for folks who really are living with the symptoms of dementia. Just trust this bag of biomarkers, they tell us. Let’s not rush to accept this bag, they tell us near the bottom of the press releases. Let’s just place all our hopes
Same song, different verse? Same singers, same volume, same tune, just different words in a different bag. I am just going to let this change rush by me. If those who should know better, but obviously do not, want to spend time and money playing with this bag I suppose it is more potentially useful than playing with nude mice. But I am not investing my time, interest, hopes, future in an idea whose science has not yet come - so far just the press releases keep coming and going.
You decide.
Richard
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Change comes and goes fast, very fast. For someone living with the symptoms of dementia the change I have experienced since my diagnosis about nine years ago would even spin the head of someone whose cognitive skills are not slipping. For me, since my skills are slipping and the change is literally overwhelming. Now comes the claim there is a bag of biomarkers that predicts Alzheimer’s (or is it dementia) with a 90% accuracy rate, and can predict it way, way before our brain is effected by the biology of dementia (if indeed there is such a freestanding biology). My personal believe is the biology of dementia is a part of the biology of an aging, a stressed out organ (my brain) which I am asking to keep me going longer than the evolution of the organ has evolved to support without showing some signs of slipping. My brain is being forced to hold and maintain a memory through a system that can best be characterized as amazing, uncoordinated, sometimes randomly organized, and certainly not integrated through and with the three forms of a brain I carry around with me between my ears.
Oh, and I thought this was going to be so easy to understand. After all, aren’t we going to base new treatments and drugs on this bag? Won’t it finally pull and point researcher in directions around which a consensus can be or is forming? For now at least, this is a bag “full of sound and fury, yet signifying noting,” or at least very little other than more hopes, wishes, dreams, and what ifs.
Of course readers should remind themselves I am not “the voice of dementia.” I do not claim to represent anyone’s feelings or thoughts other than my own. In addition, increasingly my representation of myself reveals more about slipping cognitive skills, and less about what I think I’m thinking about then has been the case in the past. I do know many folks living with dementia hunger for science about their symptoms/form/progress of their slipping cognitive abilities. I do know many of us fear the lack of science, fear what passes for “breakthroughs”, fear the lack of any forms of growing consensus about this or that press release and the claims it makes in the headlines. I do know many of us fear the last paragraphs of dementia research press releases that inevitably end up admitting the more we know, the less we know we know - and if only we had more money to spend faster on researcher such as this or that surely we might actually know some things worth knowing.
Just Wars are Justified by Just End and Occasionally Unjust Means
Posted by at 5th August, 2011
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Hello,
 It was Pope Clement the First who, according to Wikipedia, when troubled by all the carnage the crusades were causing on both sides, and after considerable thought/prayer/rationalization came up with the idea of the “Just War.” Drawing upon the writings of whomever agreed with him, he decided that if the enemy was bad enough, if they were “unchristian” enough, it was okay to kill them, their families; destroy their homes, pillage, plunder, the enemy because after all the Crusaders were actually just trying to create a world without sinners, infidels, and anyone else the Pope decided he didn’t think were worthy of living full, purposeful, and joy filled lives.
The real problem for the Pope was how to convince others to sacrifice their money, time, lives, and children to achieve his “noble” vision. And so the Pope and his P.R. Cardinals formed some focus groups and asked people what they were frighten of. What were the words that so enraged them, so scared them they were willing to sacrifice the lives of their family members and even themselves? What should be said about the enemy that would so scare people they would donate more to the church in order to rid the world of this awful, awful scourge? Jump now into the 21st century………. Comes now a new crusade. Not against infidels. No plundering and pillaging. Nevertheless, just as much vilifying, but this time with a 21st century twist. You do not attack the people; you attack the label of a set of symptoms the people are exhibiting. The goal is not to eliminate the people; it is to eliminate these awful, awful symptoms. The goal is to make sure these symptoms do not spread into your community, you neighbors, and as you grow older, yourself. Since this is not a communicable awfulness, we do not have to move the people to leper islands or prisons. In fact we can feel sorry for these poor souls, but not sorry enough to spend much money researching how to improve their lives - most of the donations must go to the Pope and the Cardinals -The Dark Angels - those seemingly well intended leaders whose good intentions/visions were sufficient justification for harming the quality of the lives of some innocents so that other innocents would not fall victim to the enemy. “We are at war with Alzheimer’s Disease” they tell us. It is so awful, so painful, that we must attack the enemy with our dollars, even if it means withholding dollars from those who are living with the enemy through no choice of their own.
Since this is another “just war,” there are not the usual limits about what you can say about the enemy. Claim it is going to steal people’s souls. Claim it is going to cause people to die twice. Claim that once it gets inside of you, you are no longer living; you are dying of Alzheimer’s disease. Pope Clement would be proud of how we have updated his concept of a “just war.” We will, with God’s help, a doubling of the research dollars by the NIH on Alzheimer’s disease, and your donations create a world without Alzheimer’s. In addition, what of those souls who now live with this cursed disease? Well, an inconvenient question to ponder - Remember they are dying, not living. Rationalization lives on…..and on! Richar |
Hello from Southern Illinois
Posted by at 5th August, 2011
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From the home of the fighting Salukies (Southern Illinois University) and my brother and sister-in-law, Robert and Janel Taylor. My brother has healed himself to the point where he and I can again sit down together for a week and laugh, and write, and cry, and fish, and eat together. Since several publishers and a book agent have expressed some interest in my second book (actually it’s my fourth book, but two of them are published only in German, a third is published in English, Spanish, and German, and this one will probably at least initially by published in English and German) we are reworking it, adding pieces and pictures and otherwise enjoying each other’s company. I am Richard Taylor and I am living with the symptoms of and diagnosis of dementia, probably of the Alzheimer’s type. The first issue of The Journal of the Voices of Dementia was well received. I have decided I just don’t have the time, energy, nor resources to publish the journal and this newsletter every month so I will alternate every other month with each of them. Thanks for taking the time to open this newsletter and allowing me to share some of my thoughts and experiences with me. Stay in touch, and I will do likewise.Richard “The single problem with communication is the illusion that it has taken place.” … G.B. Shaw |
Going with the flow …
Posted by at 18th July, 2011
have just returned from three weeks in Europe - speaking, listening, visiting
with kindred spirits, leaders, caregivers and family.
Going
with the flow…
We are now being reconditioned by the
well-intended (most of them, some of the time) dark forces of the keepers of the
myths and stigmas of the label Alzheimer’s disease. Now they not too subtly turn
our attention, our language, our way of talking about and thinking about
dementia away from dementia and to the exclusive use of the label Alzheimer’s
disease, to refer to the public health crisis that has already begun with the
initial 65th birthday parties of the baby boomer generation.
This label, they promise can be, erased, it can
be cured, and now they claim/hope/promise/suggest it can be accurately
pre-applied to folks exhibiting no symptoms of dementia. This label can be
slowed down. Yes, they now hint/suggest/hope/wonder aloud that wouldn’t it be
wonderful if it could/can be pre-identified before it even applies in any way
anyone can currently explain. After all if we could wish this to be true,
wouldn’t it be easier to wish that once this was true than we would be closer to
our wish for treatments, pills, and better lives to be just around the corner
for folks who really are living with the symptoms of dementia.
Just trust this bag of biomarkers, they tell us.
Let’s not rush to accept this bag, they tell us near the bottom of the press
releases. Let’s just place all our hopes in this bag, because if the bag proves
to be full of things we can someday understand than we will for sure be able to
come up with the treatments we have yet been unable to thus far come close to
discovering. After all this is the first new “wish list,” they have come up with
in twenty years. Of course they neglect to mention that the original “wish list”
of how to accurately, consistently, and without false positives diagnosis folks
with Alzheimer’s disease that they same folks proposed years and years ago never
panned out, never reached the levels of validity and reliability they
hope/suggested/wished for when they released the “old” wish list of diagnostic
criteria year ago.
It is a double curse for me to so clearly see
this happening. It curses me personally because I see this as a new rational for
not addressing the real issues of the real people now living with the symptoms
of dementia…spend more on research for the future and relatively less and less
on the psychosocial issues of today. As I become more and more aware of my
increasing inability to deal with my own symptoms, there is simply no reason, no
hope to believe the leadership of the Alzheimer’s disease keepers will stand up
and say, “Stop! We are running faster and faster away from people with dementia;
while simultaneously running faster and faster towards cures, pills, early
diagnosis.”
Richard
Heart to Heart
Posted by at 15th July, 2011
Hello,
I’m Richard Taylor and I live in Houston, Texas. I wrote a book by accident and from that accident came a new purpose to my life. I now go around as speak about what it is like to live with the symptoms of dementia. You know there aren’t many of this doing this, considering there are millions of us living with this disability. I wouldn’t recommend it is a way to earn a living, but it sure gives you a reason to get up each morning. I have something to do today that I want to do, that I can do, that I will do.
I tell folks that I am running away from my future as fast as I can, and I believe the reason I am who I am today, after living for years with the symptoms of dementia is because of this purpose, my passion, and the family, assistants, and hundreds of friends I have made that allows/encourages/motivates/enables me so every day I can make a most times successful effort to accomplish my purpose.
My blowtorch burns at both ends, and “oh the glow.”
Will you share with us through these pages something you would like others to know about you – heart to heart? Thanks,
Link of the Month Club
Posted by at 14th July, 2011
Link of the Month Club
Posted by at 14th July, 2011
Link of the Month Club Alzheimer’s Club A forum for non-censored ideas, news, research, clinics, therapy, technology, amyloid, tau, Alzheimer disease and related disorders. In memory of Mark A. Smith. Hello, AlzClub and AlzheimerCode are not-for-profit web sites for non-censored ideas, news, research, technology and clinics on Alzheimer’s disease and related disorders. Both are run personally by me, Alexei Koudinov, MD, PhD, DrSci, well known for his Alzheimer’s and basic science research, and for battling against the corruption of Alzheimer’s field, to protect public interest. Few examples are under must read links above, most notable of which are correspondence with the Wall Street Journal that yielded three WSJ articles on Alzheimers, Security and Exchange Commission (SEC) and Written Evidence to UK Parliamentary committee. My contribution to Alzheimer’s research is summarized in cholesterol failure hypothesis of Alzheimer’s and in the series of publications here.—
Alexei Koudinov, M.D., PhD. DrSc
http://www.alzclub.org/2010/12/why-there-is-no-cure-for-alzheimers.html My friend Anne Bastings, the creator of “Time Slips” offered the following links of being of interests to me and others. What’s interesting to Anne is interesting by definition to me, I thought they might be of interest to others. 1) John Michael Kohler Art Center in Sheboygan just opened Hiding Places: Memory in the Art and the show (is amazing!) and will be up until Dec. 31st .Tell your friends! 2) The TimeSlips Creative storytelling project is launching a new website that enables folks to read, write, and share creative stories. The official launch is Sept. 24th, but it will be soft launched this summer. In the mean time, just check out the current site, which is also very cool! 3) The UWM Center on Age & Community (which I direct) is hosting a Summer Institute NEXT June 24-28th (2012). Spots will be limited so you can contact the Center today to get more info. Visit their website for more info. 4) The Penelope Project has its own blog that is full of fascinating stories from the entire project. 5) Gary Glazner does the Alzheimer’s Poetry Project
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