Hello,
Welcome to my February newsletter. My name is Richard and I am in the early stages of cognitive decline (diagnosis of Dementia, probably of the Alzheimer’s type). Thank you for taking the time to open this epistle and reading all or parts of it.
My 66th birthday came and went, as did my Brother and Sister-in-Law (they didn’t die, just came for a visit and went home). They will be back, my 66th birthday won’t. I’m working on two presentations for the World Alzheimer’s Conference in Singapore at the end of next month. This is a really big deal for yours truly. Flying for 24 hours, stopping in Moscow, a week in Singapore - all because I am living with the diagnosis and consequences of hearing the words “you have dementia, probably of the Alzheimer’s type.”
Some folks ask me if there are any good things connected with my “thorn in the flesh.” I would not have planned this trip had it not been for the diagnosis and my response to it. But, I would rather go visit family in Chicago rather than speak in Singapore about my life living with declining cognitive functions.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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Moving right along
Hello!
From early-stage early-on-set, to late-stage-early-stage somewhat mild-on-set.
Now I’m 66 years old. I have been living with my diagnosis of dementia, probably of the Alzheimer’s type for about 6  or 7 years. What do I want/need now, that I didn’t want/need six years ago?
Please:
Help me stay focused on my larger goals, and help keep me less focused on confusing details of the day or conversation.
Help me to find the big picture of my life… help me to define it, point it out to me when I am straying from it…cheer me on when I am realizing it.
Be aware that I don’t always stay in the moment…your moment… I sometimes wander into the past, to another topic, or into confusion.
Help me come back to the here and now; know that I am influenced by my fears.
Assure me that you are here to work with me, that you accept me as is, that you love me today and tomorrow as you did yesterday and the day before.
Gently help me understand and deal with my feelings of insecurity. I am in still/more denial than I let on to.
Accept the fact that WE CANNOT UNDERSTAND EACH OTHER AS WE USED TO… LIVE WITH ME… CELEBRATE WITH ME TODAY.
Be more of a cheerleader for me than ever before. Always give me the benefit of even your littlest doubts. Trust, honor, consider, and value my intentions.
Talk about things before you argue and debate things.
Look first to me and to my understanding of what’s going on. Honest, sometimes I do know, and sometimes I don’t know.
Learn not to mourn, but rather, look for the joy in today and help me to do the same.
Worry less about the future, about money, and about my death.
Be aware (if indeed you aren’t already), there is a shift in me underway from reacting to facts to reacting to my feelings.
Richard |
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If it is seems too good to be true
It probably is!
Hello!
Can/Does playing “brain” game on the computer Stop/Slow down/Help Alzheimer’s and other forms of dementia?
Dementia Abstract: Background: Research on the potential effects of cognitive intervention in healthy elderly has been motivated by (1) the apparent effectiveness of cognitive rehabilitation in Alzheimer’s disease (AD) patients; (2) the face validity of bolstering skills eventually burdened by disease; (3)  interest in low-cost/noninvasive methods of preventing or delaying onset of disease; (4) the epidemiologic research suggesting protective effects of educational attainment and lifelong participation in cognitively stimulating activities; (5) the burgeoning industry of brain training products and requisite media attention; and (6) the aging world population.
Methods: We performed a systematic review with meta-analytic techniques to analyze randomized controlled trials of cognitive interventions in healthy elderly.
Results: The existing literature is limited by a lack of consensus on what constitutes the most effective type of cognitive training, insufficient follow-up times, a lack of matched active controls, and few outcome measures showing changes in daily functioning, global cognitive skills, or progression to early AD.
Conclusions: Our review was limited by a small, heterogeneous, and methodologically limited literature. Within this literature, we found no evidence that structured cognitive intervention programs delay or slow progression to AD in healthy elderly. Further work that accounts for the limitations of past efforts and subsequent clear and unbiased reporting to the public of the state and progress of research on this topic will help the elderly make informed decisions about a range of potential preventive lifestyle measures including cognitive intervention. (I’m sorry, but I lost the link to this information)
Richard
“One should count each day a separate life.” Seneca
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What’s in a name?
Juliet:
“What’s in a name? That which we call a rose
By any other name would smell as sweet.”
Romeo and Juliet (II, ii, 1-2)
Romeo Montague and Juliet Capulet meet and fall in love in Shakespeare’s lyrical tale of “star-cross’d” lovers. They are doomed from the start as members of two warring families. Here Juliet tells Romeo that a name is an artificial and meaningless convention, and that she loves the person who is called “Montague,” not the Montague name and not the Montague family.
Names. Everyone has one, most people have a vague idea what their own means, but few give them much more thought. The study of names is called onomastics, a field that touches on linguistics, history, anthropology, psychology, sociology, philology and much more.
When most people refer to the “meaning of a name,” they are most likely referring to the  etymology, which is the original literal meaning. When folks living the symptoms of dementia think about names they usually aren’t thinking about what the name means, they are trying to recall the name of the person to whom they are speaking or about whom they have referred.
I’ve reached, and slightly passed the zenith of my ability to recall names, to place a name with a face, to place a face with a name. Try talking to someone and you suddenly know you can’t recall his or her name, and/or you don’t know to whom you are speaking. If they haven’t noticed the blank/panicked stare emoting from your eyes than you are still probably in the early stage of dementia probably of this or that type because you can still cover up this increasingly annoying symptom of some forms of cognitive decline.
I know some folks, myself included, have never been good at recalling names, but I just don’t forget people’s names - I don’t remember even remembering them. I don’t have a clue. I can’t just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly enough I care less and less if I can’t remember it. I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you?
Some folks assume because I can’t recall their names I don’t know, or for that matter, care who they are. After all, “If you can’t remember my name, can you really remember me?” Of course this is not necessarily true, even for folks who don’t have dementia. However forgetting names produces a stronger emotional response (in me!) when I can’t remember the name of my Grand Daughter, Sister-in-Law, son’s fiance. Of course, the ultimate name failure is that on one’s spouse (I haven’t crossed that bridge yet.)
ROMEO:
“I take thee at thy word.
Call me but love, and I’ll be new baptiz’d;
Henceforth I never will be Romeo.”
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Links and much, much more!
Bruce Museum of Arts and Science, Greenwich, Connecticut Jennifer Beradino, Manager of School and Tour Services.
Email:
JBeradino@brucemuseum.org
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Cameron Art Museum, Wilmington, Delaware
The Connections Program
(910) 395-5999
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Volunteer artists enhance the cultural life of people with Alzheimer’s Hearthstone Family Foundation, Woburn, Massachusetts
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The Memory and Aging Center at University of California, San Francisco
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Museum of Modern Art (MoMA), New York City
Francesca Rosenberg, Director of Community and Access Programs
Email: accessprograms@MoMA.org
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If you live in Texas please read this:
I’ve never met a cell that wasn’t worth saving!
Every time the Texas legislature meets the citizens of Texas are at risk! One of the risks is that regenerative medicine, stem cell research (not research into how to clone your worst enemy) may be outlawed in Texas. The first ever bill proposed would have put you and your doctor in jail and/or fined you if you went outside the state and came back in after having some form of regenerative stem cell treatment (even if they were you own stem cells!).
I encourage you Texans to join and become an active member of the Texans for the Advancement of Medical Research (TAMR). Association for Medical Research.
TAMR is composed of leading scientists, physicians, ethicists, health groups, and individuals (I’m one of these individuals) who support biomedical research for the purpose of curing diseases and alleviating suffering. TAMR was created during the 78th legislative session, in 2003,in response to the threat to stem cell research in Texas. TAMR is helping to build a bi-partisan coalition within the Texas legislature that supports all types of stem cell research for regenerative medicine.
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Want to tell the President how you feel and what you think about this or that - hopefully you will mention the tsunami of dementia sweeping across the country; seeping into the federal government via Medicare; and upsetting our homes, hearts, families, 401k’s, and our ongoing efforts to maintain purpose to our lives? Go to this link and tell him! Or to partner with the President in his decision making process go to this link.
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Technology
So little attention is paid to how existing technology can enable people living with dementia to live fuller, more in-touch with today, and purposeful and purpose-filled lives I’ve decided to do my small part to improve the situation. I have no financial or personal interest in any of these links; they just looked like good ideas to me. Decide for yourself - Here are my discoveries this month:
How about a dedicated printer with its own internet connection. Send emails/pictures anytime to someone and all they have to do is pick it up and look at it. No computer/no keyboard/no pin numbers or email addresses to remember. Deliveries can be prescheduled for automatic printing multiple times a day. Reminders of appointments, medications, social plans, and love can be sent when the spirit moves you. Anytime you want to send your Mom or Dad a picture or a note or a card - visit activeforever.com and search for “Preston” A15262 Presto HP Printing Mailbox (Cost $149, plus $9.99 per month).
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This is an interesting training video for professionals on art and dementia. It’s free (my favorite type of site), it’s interesting, and it seems objective and up to date. Met Life sponsors many useful initiatives in the area of dementia. MetLife MindAlert Lecture Series: Art and Dementia
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New Site Helps Elders
Share Their Life Stories
The Life Story Center at the Osher Lifelong Learning Institute National Resource Center in Portland, Me., recently launched a new interactive site for sharing life stories. The site enables elders and others of all ages to join in creating what is planned as the world’s largest fully searchable life-story archives on the Web.
An easy-to-use format guides users through the steps of telling their own life stories — or helping others do the same. The site also makes it simple to contribute a life story to the online archive.
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Art can be a useful vehicle for self-expression for folks living with a diagnosis of dementia, probably of this or that type
Hello!
Art has always been the touchstone of the soul. Everyone reacts to colors, shapes and textures, although those with a creative streak are generally more affected than others.
Not necessarily so for someone with Alzheimer’s disease. As the disease slowly begins to destroy the brain cells, often in an asymmetric, almost whimsical way, memory and language begins to fade - but for some reason, other parts of the mind seem to spring to life.
People who have not been particularly creative in the past suddenly become avid museum-goers or artists themselves, expressing insights and skills in the realm of visual art that had never before appeared.
It is this ray of hope that new art therapy programs have begun to tap, with museums offering special programs and artists using their gifts to help Alzheimer’s patients learn to express their inner world in a new way.
New York’s Museum of Modern Art has created “Meet Me at MoMA” - a program for people who have Alzheimer’s disease, as well as their families and caregivers. The program was created in conjunction with The Hearthstone Alzheimer’s Family Foundation of Lexington, Massachusetts.
“Meet Me at MoMA” is one of about a dozen such programs in the U.S. in which the museum closes for a time in order to allow their Alzheimer’s guests to focus on the works of art without the distraction or anxiety that might be generated by other viewers around them.
“If you met these people back where they lived on an ordinary day, you simply would not see them being this articulate and this assured,” observed Hearthstone president John Zeisel, who created the program together with MoMA Community and Access Program director Francesca Rosenberg.
Richard
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The More We Get Together
The more Together I’ll Be
Hello!
Purpose, my life’s purpose, many lives of folks living in dementia is not to be able to fold socks and towels for the remainder of our lives. Although what we do needs to be looked at, enabled (sometimes reabled), and supported by our caregivers - relationships remain the source of living human (as opposed to living-dead).
The Quaker teacher Douglas Steere was fond of saying that the ancient human question “Who am I?” leads inevitably to the equally important question “Whose am I?” - for there is no selfhood outside relationship..”
Another illusion is “I am what I do …. my worth comes from my functioning. If there is to be any love for us, we must succeed at something.” He claimed that it is more important to be a “human being” rather than a “human doing.” We are not just what we do. We are who we are with others, and for others. We must be faithful to our own purpose, and the rigors of trying to be faithful involves being faithful to one’s gifts, faithful to other’s reality, faithful to the larger need in which we are all embedded, faithful to the possibilities inherent in our common life.
Helping us find “something worthwhile, interesting, and enjoyable,” should not take the place of helping us find, maintain, and grow relationships with others around us that are also worthwhile, interesting and enjoyable.
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Drink more Llama milk
The engines of innovation for a promising new class of pharmaceuticals are covered in soft hair and tend to spit when irritated. Scientists are exploiting an unusual feature of the immune system of llamas — a South American relative of the camel — to develop new treatments for diseases including rheumatoid arthritis, cancer and Alzheimer’s. Llamas, camels and their alpaca relatives are one of only two animal families that create extremely small antibodies, the molecules that are the soldiers of the immune system.
Ablynx, a biopharmaceutical company located in Belgium, has the patents on using llama and camel antibodies, which they refer to as nanobodies. The nanobodies have several advantages over conventional ones, which are large and complex. The small size and stability of the nanobodies, make them ideal to tunnel into the smaller areas of the human body. Scientists are also able to combine different kinds of nanobodies with each other or with other proteins, creating a molecule that can target different proteins at the same time. (Honest, this came from an article in the Wall Street Journal - The title is mine!)
Richard
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Where’s Richard!
-My new website is up and running so please make sure to check it out!
-Visiting Atlanta, Georgia February 26th - March 3rd. On march 1st I will be speaking at the Presbyterian Village in Atlanta at 3pm and at the Presbyterian Village in Athens at 2 pm on March 2nd.
-I will be speaking at the Memorial Herman Medical building in Houston, Texas on March 16th.
-I am traveling to Singapore from March 21st until March 28th to speak at the Alzheimer’s International Conference.
-I will be speaking at John Hopkins School of Medicine in Baltimore on April 4th.
-I will be speaking at the Buckner Villas in Austin, Texas on April 22nd.
-I will be speaking in Fort Collins, Colorado from May 4th through the 8th.
-I will be speaking for the Alzheimer’s Association in Dallas May 14th through the 17th.
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Notes on this issue: I’m sorry I messed up some of the links I saved for attribution of some of this information. I’m having more and more trouble staying in charge of my fingers on the computer and/or knowing what the hell I’m doing or have done with files and information. It’s so frustrating!
If you have 7.5 minutes (the average time folks spend on my web site) or so please cruise by it and check it out. I continue to add new features to it each month. I have cleared out all the over-sexed spam that seems to gravitate to all new web sites. I don’t always remember to check it myself every day, so if you post something and I don’t reply - post it again and/or send me an email.
My web site is: richardtaylorphd.com
My email address is richardtaylorphd@gmail.com
Ask me a question, send a comment or reaction, tell me something about your experience with dementia. Let’s create a meaningful social network for individuals living with one or more of the forms of dementia.
Things to do, if you have a few free moments and absolutely nothing else of value to do: Invite me to your church to come and speak on my experiences living with dementia. Ask you local Alzheimer’s association to ask me. If you are a caregiver of someone living in some form of assisted living ask the facility if they would be interested. Know someone in nursing school, OT or PT program, medical school? Ask them to ask me! I need to do more speaking up while I can.
Thanks!
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Captions for the pictures in this issue:
I still haven’t figured out how to put captions under the pictures so here is what you saw:
1. Yours truly celebrating his 66th birthday!
2. Linda and I
3. Some more members of my family (relatives living in Chicago area).
4. Yours truly in Germany, 2 years ago (at the ADI conference).
5. Richard and Virginia Bell - co-author of Best Friends, the second book I would buy after I bought my own book. She is a dear friend and I will lunch with her in Singapore
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| 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
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