Archive for February, 2009

Alzheimer’s From the Inside Out
January 2009, Issue #11
 

Hello
 
   Thank you for opening my newsletter. I am Richard and I have been living with the consequences of declining cognitive abilities for the past few years. I have been diagnosed as having dementia, probably of the Alzheimer’s type.

  This has been a very interesting month for me. I visited with what is surely one of the best, well developed, and largest Early Onset groups/programs (Without Warning) I have ever seen. I am sure there are others out there; they just have yet to invite me to visit with them. I also spent some time with the staff and some participants in the Memory Bridge program, another example of a “best practice.” I encourage you to click on these wordsWithout Warning and Memory Bridge and explore their web pages.

  Keep those cards and e-letters coming; I read and respond to every one of them. I deeply appreciate your affirming feedback. Please consider going to my web site and checking out its new features.

Thank you for taking the time to read this.

Richard
 

 A half a step away from the past, but is it now in the right direction! 
 
Hello
 
  The New Year’s greeting (semi disguised fund raising letter) from the National Alzheimer’s Association contained this interesting sentence:

  “We look forward to the upcoming year as we continue to provide educational programming and increase our efforts to advance much-needed research on preventing and possibly even curing Alzheimer’s disease.”

  Have they forever given up their 26-year quest to for sure find a cure for Alzheimer’s disease? What about the much-needed research on the psychosocial needs of people who are living with the symptoms of dementia? Are they really funding research on how to prevent Alzheimer’s disease? What about preventing the other dementias?
 
  Hands in the audience if you truly believe dementia can be prevented? I am trying to cope with its symptoms. I believe I inadvertently prepped my brain to better cover up the symptoms, disguise them, and work around them. But I believe “brain games” do not and will not “prevent” dementia.

  It seems as if their vision of a world without Alzheimer’s is now the vision of a world without Alzheimer’s after everyone who presently has it dies, and the Association has funded research that discovered the way(s) to prevent anyone else from getting it.

  But what if you can’t “get” Alzheimer’s or Lewy Body or frontal lobe, or any of the other forms of dementia? How can “it” ever be prevented since the only real almost predictor of these conditions is age. What if dementia is a condition of an aging brain? What can the National Alzheimer’s Association and 40-60% of its budget expenditures on research do about my brain growing older?

  And when they are forced to lay off program staff members for lack of funds, their claim to continue to provide educational support rings hollow: especially in the light of the tsunami of dementia sweeping the country. Currently they are not providing educational support to even a simple majority of folks dealing in some direct way with dementia. They can’t expand their education support while shrinking the staff that provides the services. And, the need, the demand of education services increases every year.

  It’s hard to imagine what they are looking forward to doing this year! And even harder to imagine what they can or will accomplish given their apparently shifting priorities. Most unfortunately for all concerned they still don’t seem to get “it.”

Richard
 
Hanging on to yesterday vs. being in today

Hello
 
  Stay with me Today!

  I think there is too much emphasis on helping people with dementia hang on to yesterday (something caregivers need) vs. helping people living with dementia being, understanding, and appreciating today (something all human beings, especially people living with failing cognitive skills need). We need less memory books and video and more cues, memory helps and support to know and understand what is going on around us and within us today.

  So what if we forget today 1,000 times a day. We still need to live in it. We still need to understand it and feel a sense of ownership of it. Otherwise, what is left for our minds to work on, to understand - yesterday? Twenty or fifty years ago? 
 
  It takes more time to enable and support us with our struggle to understand today. It takes increasingly more time and effort the deep we sink into the symptoms to support our need and want to stay in today. Helping us hang on to yesterday requires less time. Make us a book of family photos, put a little shadow box outside our room with things from our past in it, give us some old dolls or clothes to fondle or wear - then leave us alone, go about the rest of your day.
 
  The emphasis on memories and yesterdays unintentionally tells our ever-confused hippocampus to focus on the past and pay less attention to today. Today seems to take care of itself as far as we are concerned. Other people make decisions for us, lay out our clothes, dress and wash us, take us to the bathroom, buy our groceries, cook for us, and keep calling us finding out what they can do for us today that we haven’t/can’t do for ourselves today. So why not spend some time relaxing and drifting out of today and listening to old tunes, watching old movies, talking about the past and let today take care of itself?

  Regardless of how many plaques and tangles we each have in our respective brains we are all still what we think we are (Rene Descartes was right, sort of). Think about yesterday and guess who you are? When others around you treat you as if you were simply a carbon (sorry, Xerox) copy of yesterday or the past five or ten or twenty years, when others see us as evolving and growing old as they see themselves evolving and growing old they are naturally inclined to see in us their own need to enjoy the past, but live in the present. They sometimes escape to the past to avoid the problems of today, but then they must return to day. There is no pressure on us to return to today, because there is less and less need for us to return.

  Not so!

  Spend more times thinking of creative ways to support and enable us to stay in today, to understand what is happening around and to us, to structure activities so we must make our own decisions - today.

“Make it so.” Please!

Richard
 
Links
 
Smile, Breath, Go Slowly…. Thic Nhat Hanh
Birth Name: Nguyen Xuan Bao
Place of Birth: Tha Tien, Quang Ngai Province, Vietnam
Title: Thien Su (Zen Master)
Workplace: Plum Village
Teacher: Thich Chan That
 
________________________________________________
 
The December issue of The Journal of Alzheimer’s Disease reports studies using as subjects: aged beagles, fruit flies, a couple of new strains of nude mice, and an assortment of rabbits - both living and dead. All of these animals in one way or another “expressed” the symptoms of dementia when treated in one way or another. Some of these animals improved their cognitive functioning (the coat hanger test, food finding, fear avoidance) when given this or that experimental brain directed chemicals. 

And we are on the verge of a breakthrough in the search for the cure of the disease in human beings? We are much closer to squeaking out the cause than we were 50,000 nude mice ago? We know what tress to bark up and what trees to avoid? We all know how to and where to hop in the right direction so I can nibble on the cure found at the end of the rainbow?

I think not.
 
________________________________________________
 
 ElderCareRead Life Scenes 1 is a book combining colourful photos, text and discussion questions, for a person with moderate to advanced Alzheimer’s disease or another form of dementia to enjoy with a caregiver or on their own.   The book is designed for different attention spans. Each page contains a standalone story. Those with short attention spans and limited information-retention capabilities will appreciate the one-page stories and will feel a sense of success at the completion of a page. At the same time, the book contains twelve photographs and stories, so that readers with longer attention spans can complete as much of the book as they are able.
 
_________________________________________________
 
A source of information and support for us all - The National Council on Aging.

It is a non-profit service and advocacy organization headquartered in Washington, DC.

NCOA is a national voice for older adults - especially those who are vulnerable and disadvantaged — and the community organizations that serve them.
 
NCOA brings together non-profit organizations, businesses and government to develop creative solutions that improve the lives of all older adults.
 
NCOA works with thousands of organizations across the country to help seniors live independently, find jobs and benefits, improve their health, live independently and remain active in their communities
It’s  mission is to improve the lives of older Americans.

It’s  core values are - Social and economic justice - Respect and caring for all - and innovation.
__________________________________________________
 
New NIA Progress Report on Alzheimer’s Disease

(This link is from my friend Mona’s site “The Tangled Neuron” She is one of the most articulate, dedicated, and talented writer/former caregivers I know!)
 
Mona reports:

“When my father started to have problems with his memory, my understanding of Alzheimer’s was that it was a single and identifiable disease, and that we were close to finding a cure.  The 2007 version of the U.S. National Institute on Aging (NIA) Progress Report on Alzheimer’s Disease presents a more open-ended and nuanced view of memory loss.
 
The wording in the new report reflects the evolving views of many of the researchers I’ve talked with.  Phrases such as “vigorous assault” and “fight against AD” featured in the 2005-2006 version of the report have been replaced with phrases like “a richer understanding” and “our growing appreciation of its complexities.”
 
Some of the key changes in thinking highlighted in the report are:
    * “it is increasingly evident that there is no clear line between a completely healthy brain and a diseased brain”
    * “the course of AD varies from person to person, as does the rate of decline”
    * “AD has no single cause but develops from multiple factors that interact over many years.”
2008 brought the failure of several highly-anticipated Alzheimer’s drugs in clinical trials, and many scientists and policymakers acknowledge the need for a new approach.  The newer, more holistic view presented in the NIA report has led to some shifts in research priorities. he 2007 version of the U.S. National Institute on Aging (NIA) Progress Report on Alzheimer’s Disease presents a more open-ended and nuanced view of memory loss.”
 
_______________________________________

 From another friend of mine, Danny George who is co-author of The Myth of Alzheimer’s - a round-up of some of the more compelling brain aging stories in the news over the last week. This is a fascinating site to explore if you are interested in alternative theories of what causes dementia, and what are the consequences of characterizing dementia as a disease. Click here!

 
Who is Richard Taylor?

Richard Taylor, a retired Psychologist, was diagnosed with Alzheimer’s-type dementia at the age of 58. Now 66, he is a champion for individuals with early-stage and early-onset Alzheimer’s disease, and author of the book Alzheimer’s from the Inside Out (Health Professions Press, 2006).

He lives in Cypress, Texas, with his spouse Linda, and his Bouvier Des Flanders (dog), Annie. His son and family live across the street from him. Originally, he started to write to better understand for himself what was going on inside of him. When he is not out speaking, he writes for two or three hours every day. Even as the disease progresses, he thus far has maintained his ability to look at and attempt to understand himself.

Richard is a passionate advocate for several issues concerning the involvement of people living with a diagnosis of one of the diseases of dementia. He was a moving force in the establishment of the Dementia Advisory Committee of the U.S. Alzheimer’s Association, looking at how to better integrate individuals living with the diagnosis in the leadership, program development, and delivery functions of the Association and its local chapters. He now serves as the chair of a similar committee he helped to establish for the Alzheimer’s Foundation of America.

He continues to be a sought-after speaker at various professional conferences, assisted living and memory care communities, and public programs. He is constantly looking for new audiences, especially of professionals who work in the field of dementia, to help them with getting to know the people they serve.

Richard is an articulate, thoughtful, and thought-filled speaker to caregivers. Thousands of them have used his insights as the basis for conversations and insights into what might be going through their loved one’s minds. Many Alzheimer’s chat rooms, across the United States and worldwide, were created in large or small part with his support. He publishes his own monthly newsletter that is less news and more a chronicle of his experiences and reactions to a life that he daily attempts to live to its fullest.
His firm desire to stay in today, to seek to be enable rather than disabled, to convince others he is and always will be a whole human being, to encourage others to say “hello” rather than “good bye” when thinking about him to talking to him, to promote more psycho-social research into finding “best practices” to cope with the day to day problems of living with diminishing cogitative skills - and living and caring about and for someone living with the diagnosis of dementia, probably of this or that type - these are some of the issues about which he is passionate.

While Richard still leads a vibrant life, control of his concentration is sometimes elusive. His language facility is still mostly intact, although he increasingly searches for the right word. His granddaughter Christina is learning to read and sometimes reads to him. His garden becomes smaller and smaller each year; he plays bridge (with a cheat sheet) once a week, is about to release two DVD’s chronicling his experiences and thoughts living with dementia,  and he is halfway through writing another book, updating his journey with Dr. Alzheimer.
 
Richard
 

 
 
 
I still haven’t figured out how to label each of the pictures in my newsletter! So here are the missing captions from top to bottom:
Richard celebrating his 65th birthday with his spouse and youngest grand daughter

Richard and his German publisher, Jurgen Georg, seated in the dining room of Richard’s exchange daughter Heike Salandar.

Richard standing next to world’s largest bottle of beer in Frankfort, Germany.

Thic Nhat Hahn, many consider him to one of the most “enlightened” humans on the planet!

Richard standing next to the cathedral in Cologne, Germany.

 
What’s Happening with Richard!
 
Speaking at Calder Woods Community
in Beaumont, Texas on Jan 30th.

Celebrating the 66th Anniversary of my birth on Feb. 4th
 
Participating in an Art and Dementia project at the Museum of Fine Arts in Houston, Texas on Feb 2nd, and Feb 16th.
 
Speaking at the Old Nabisco Building in Houston, Texas on Feb 12th. 
 
Speaking to a class at TWU in Houston, Texas on Feb 24th.
 
Will be in Atlanta, Georgia Feb 26th through March 3rd.  I will be speaking at the Presbyterian Village Convention at PM on March 1st.
 
Speaking at the 2009 World Alzheimer’s Conference (ADI) in Singapore March 21st-28th.

Speaking at Johns Hopkins Medical School in Baltimore on April 4th.

Speaking at Buckner Community in Austin, Texas on April 22nd.

Speaking in British Columbia, Canada on May 4, 5, 6, 7th.

Speaking at Early Onset Conference in Dallas, Texas on May 15th.

I’m still looking for a few more speaking engagements this year. www.richardtaylorphd@gmail.com
____________________________
A Caregivers Conference without hearing from the folks which they care?

Hello

This is my response to an article from the current newsletter of the Alzheimer’s Foundation of America (AFA).

Where are the genuine and should always be “featured experts” - speakers and panels of people with dementia?  Which comes first - updates of research and treatment - practical soultions to behavioral challenges - legal and financial considerations - or ongoing attempts to understand what it’s like to live with dementia as seen through the eyes of individuals who are living with the symptoms? Who should be a partner in determining how best to meet their own physical, emotional, and financial challenges of maintaining a purposeful life while coping with the symptoms of dementia?  Even when folks are deep into the symptoms they still deserve extraordinary efforts on the part of professionals and caregivers to keep them involved in their own care.

They just don’t seem to get “it!” Yet?!  Conferences offer “respite care” for us, while our caregivers confer on how best to support us.

Richard

This is the article about which I commented:

The Alzheimer’s Foundation of America (AFA) and Partners in Care will host a free caregiver conference called “Solutions & Support for Alzheimer’s Caregivers” on February 28th in New York that will provide pratical tools to help caregivers meet the physical, emotional, and financial challenges of caring for someone with Alzheimer’s disease.

Featured experts include Richard E. Powers, M.D., chairman of AFA’s Medical Advisory Board, who will update attendees on the latest research and treatments related to Alzheimer’s disease; Dale Atkins, Ph.D., a psychologist and popular commentator on family related issues on NBC -TV’s “Today Show,” who will discuss practical solutions to behavioral challenges; and David Cutner, PC, who will address legal and financial considerations that families face as the disease progresses.

The conference includes complimentary lunch for attendees, and respite care for loved one’s with Alzheimer’s disease.  It will be held from 10 am to 3 PM at the Lighthouse Executive Conference Center, located at 111 East 59th St. in Manhattan.  To RSVP, visit www.bigeventregistration.com/
alzheimerscaregivers/ or contact Abhi Basy, at 212.299.4292 or Abhi.Basu@zenogroup.com.

 
  .
 

LLAMADA / INVITACIÓN DE RICHARD TAYLOR A LA ACCIÓN
“¡Levántate! y habla / exprésate! No seas la victima de tu propio silencio.
Habla por ti mismo y por aquellos que te van a seguir. Pregunta a los cuidadores, familiares y amigos, para que hagan lo mismo.
¡Hoy no volverá nunca!
¡El tiempo es la esencia! empléalo / utilízalo sabiamente!
Di al mayor número de personas, tus percepciones e interacciones con profesionales de la salud, cuidadores pagados, familiares, amigos, extraños y con tus gobernantes.

¡Ellos no van a cambiar a menos que sepan y no van a saber a menos que tú les digas, así que háblales!
¡Procura buscar el cambio palpable y sensible y con urgencia!

¡Únete a la cruzada, ahora!
Sé un agente de cambio, ahora!
Dirige el movimiento, ahora