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“So, Richard, what are people saying about your book?”

Posted by RichardTaylor at 28th October, 2009

“So, Richard, what are people saying about your book? (Alzheimer’s From the Inside Out, HealthProfessions press, 2007)  It has been several years since it was published?”


I’m glad someone finally asked me. Here are some reviews from readers posted on Amazon.Com.

By  M. Karelitz  (Georgia)
Yesterday I hear Mr. Taylor speak to a room of spellbound seniors in a bridge (between independent and assisted) home in Atlanta. One of these seniors is my 89-year-old mother, who has been diagnosed with cardio-vascular dementia. Mr. Taylor showed me, like no book or outside expert could, what a person with dementia feels and thinks inside. As he warned the caregivers not to treat their family as children, not to snatch chores and precious belongings away, not to order them about, not to show their frustration, and so many other feelings I know I have been guilty of, I knew I had been invited into a world I needed desperately to FEEL, not just learn about, but FEEL. The room full of nodding heads and murmured agreements convinced me of the harm we who try so hard to help can do to the ones we love in our rushed quest for expediency.

By  S.. Artman (Pennsylvania)
Any caregiver of a person with dementia should read Alzheimer’s From the Inside Out. It is actually good reading for anyone. As one would suspect, Dr. Taylor gives you tremendous insight into the thoughts and feelings of someone with Alzheimer’s disease. The writings reinforce the fact that there IS someone inside a person with dementia, a human being first and foremost, that deserves to be treated respectfully and is worth the trouble of doing what it takes to communicate with effectively.

By  E. McDowell (Texas)
Reading all the books I can find on this disease. This book was suggested as a must read at an Alzheimer’s seminar. I am a caregiver trying to understand and care for my mother. This is a very informative book in the eyes of the person with Alzheimer’s. Very eye opening for me. God Bless all who are dealing with this disease and those who love them and want the best for them. Thank you Mr. Taylor and may God bless you and your family.

By  A. Hall (Colorado)-
I have early dementia, fitting the criteria for Alzheimer’s. Like the author, I was a psychotherapist in my 50s when my difficulties became such that I couldn’t work. It’s incredibly powerful to read his words, and see what I would have said if I were only so gifted. Most importantly, I want doctors to read this book, as most of them relate only to dementia as it looks in the end stage, and aren’t familiar with what the early disease process looks like.

By  C. Adams (Nebraska) -
I thought it was an excellent source for where we are at in having our mother recently diagnosed with Alzheimer’s. It wasn’t a lot of fluff, very honest about what to expect now and in the future. This is one’s man account of his memory loss and deficiencies acquainted with the disease. I recommend it highly.

Average Customer Review: 4.8 out of 5 stars (19 customer reviews)

19 Reviews
5 star:    (17)
4 star:    (1)
3 star:     (0)
2 star:    (1)
1 star:     (0)

Amazon.com Sales Rank: #11,252 in Books. It has ranked as high as #400 and as low as #143,789
Popular in these categories:
#1 in   Books > Science > Medicine > Nursing > Mental Health
#3 in   Books > Science > Medicine > Specialties > Geriatrics
#5 in   Books > Professional & Technical > Medical > Nursing > Psychiatry & Mental Health
If you have read the book, I would appreciate it if you would consider posting a short review of it on amazon.com. Thanks.

Richard

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I once was lost, but now I’m found…

Posted by RichardTaylor at 28th October, 2009

I once was lost, but now I’m found, was blind but now I see - Living Long(er), Living Better With a Clear and Active Sense of Purpose


I have for sometime realized from my own life experience how important it is to have a sense of purpose, to know what it is, and to strive each day to include activities which enable me to achieve my sense of purpose.

I lost my sense of my purpose when I lost my job, my driving privileges, many of my friends, and to some extent I lost myself for a while. I did not find my new sense of purpose, it found me. Writing and speaking became my sense of purpose, without me having to “figure it out for myself.” I was sleeping longer, watching more TV - more stupid TV, and became clinically depressed.

Apparently, the day after my book came out the world thought I was smarter, more interesting than they had previously thought. Folks started to call me and ask me to speak. I thought more about what it was like for me to live with the symptoms of Alzheimer’s disease. I wrote more. I spoke more. I traveled more. I published more. I met more and more interesting kindred spirits, caregivers, and professionals.

Wham-O I had a new sense of purpose, and many of my activities of daily living now channeled me into feeling a sense of personal achievement and accomplishment, a sense of self satisfaction with myself and my life, a feeling of okayness (remember “I’m Okay,
You’re Okay?”

I acknowledge that those of us deeper into the symptoms of dementia probably of this or that type cannot by themselves redefine a new sense of purpose for themselves. They cannot by themselves create daily activities that help them achieve their sense of purpose. They may need others to assist them in the search. The will need others to find/create activities of daily living that lead them to a sense of self-fulfillment of their sense of purpose.

What follows is a report on some research on the impact a defined, achieved, and achievable sense of purpose has on our lives. This comes from the Rush Alzheimer’s Disease Center in Chicago. They have formed one of the most active, creative, and popular programs for folks living in the early stages of dementia probably of this or that type that I know of in the U.S. of A.

TUESDAY, June 16 (HealthDay News) — If you have a purpose in life — lofty or not — you will live longer, a new study shows.
It does not seem to matter much what the purpose is, or whether the purpose involves a goal that is ambitious or modest.

“It can be anything — from wanting to accomplish a goal in life, to achieving something in a volunteer organization, to as little as reading a series of books,” said study author Dr. Patricia Boyle, a neuropsychologist at the Rush Alzheimer’s Disease Center and an assistant professor of behavioral sciences at Rush University Medical Center in Chicago.

“We found that people who reported a greater level of purpose in life were substantially less likely to die over the follow-up period — only about half as likely to die over the follow-up period — as compared to people with a lower level of purpose,” Boyle said. The follow-up period averaged nearly three years.

Boyle and her colleagues studied 1,238 older adults already participating in two ongoing research studies at Rush, the Rush Memory and Aging Project and the Minority Aging Research Study. The participants were all dementia-free when the study began and averaged 78 years old. At the start of the study, the participants answered questions about their purpose in life, rating themselves on different areas meant to measure the tendency to derive meaning from life and to feel that one is working toward goals. The average score on the sense-of-purpose evaluation was 3.7 of a possible five, Boyle said.

When comparing scores, Boyle found that those with a higher sense of purpose had about half the risk of dying during the follow-up period as did those with a lower sense of purpose. And that was true, she said, even after controlling for such factors as depressive symptoms, chronic medical conditions, and disability. “What this is saying is, if you find purpose in life, if you find your life is meaningful and if you have goal-directed behavior, you are likely to live longer,” she said.

Though much other research has found that having a purpose in life is crucial to maintaining psychological wellness and can be important for physical health as well, Boyle said she believes the new study is one of the first large-scale investigations to examine the link between life purpose and longevity.

The finding follows another recent study, done by others, in which the researchers found that retirees older than 65 who volunteered had less than half the risk of dying during about a four-year follow-up period as did their peers who did not volunteer their time.

What is the link? Boyle cannot say for sure. But it could be that having a greater sense of purpose helps multiple systems of the body function better, conferring protection in the face of illness.

The findings make sense to Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in New York City. He said he often sees the effects of not having a purpose among older patients. “I see a number of people who have lost that purpose,” he said. “Their health declines.” Boyle said that in future research they hope to find out if people can be inspired to have purpose in life, perhaps by being taught to set goals and work toward them.

Richard

SOURCES: Patricia Boyle, Ph.D., neuropsychologist, Rush Alzheimer’s Disease Center, and assistant professor, behavioral sciences, Rush University Medical Center, Chicago; Gary Kennedy, M.D., professor, psychiatry and behavioral science, Albert Einstein College of Medicine, and director, geriatric psychiatry, Montefiore Medical Center, New York City; June 15, 2009, Psychosomatic Medicine

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If you only read one, two, three, four or more articles

Posted by RichardTaylor at 28th October, 2009

If you only read one, two, three, four or more articles

This is the one to read and the link to check out!

I suspect for many of you this is old news (the report came out three weeks ago). but it is very important news. It is very compelling news. It is news worthy of your attention. It is a fine summary of where we are today, what this means, and where we ought to be tomorrow.

It’s objective in a manner only the British have mastered, yet it is direct. It looks at what is through ethical and moral lenses, and at a time like now when we seem consumed looking at health care only through financial and OMG the Socialists are back lenses it is an eye opener and clears the vision of those who prefer to see blurred images of people with dementia, and crystal clear images of dollars and cents.

Please click on one of the connections below. Please consider sending on at least the summary to 10 people you know will be interested in this and ask them to send it on to ten of their involved and engaged friends.

Thanks.

Richard

New developments in medicine and biology raise important ethical issues. The Nuffield Council on Bioethicsis required, in its terms of

reference, to consider these issues. The Council has achieved an international reputation, providing advice that assists policy-making, addresses public concerns and stimulates debate in bioethics.

There is no ‘miracle cure’ just around the corner for dementia. And yet while the number of people suffering from dementia is increasing rapidly, there is a widespread lack of understanding about what people with dementia are capable of doing. This report concludes that we need to do more as a society to enable people to live well with dementia. Currently, they are not getting the support and respect that they need.

This report presents an ethical framework to help those who face dilemmas in connection with the everyday care of someone with dementia. The framework forms the basis for a number of recommendations to policy makers in the following areas:

* promoting autonomy and well-being through an ethical approach to dementia care

* including people with dementia in society

* making decisions about the care and treatment of people with dementia

* dealing with day-to-day ethical dilemmas in care

* recognising the needs of carers

For the full report click here!

For the short guide, click here!

For the executive summary, click here!

For the one page summary, click here!

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Same song, different verse, and singer

Posted by RichardTaylor at 28th September, 2009

Hello

This is a comment I cut from Mona Johnson’s,blog page. She is in my occasionally humble opinion the owner/operator of one of the finest lay-person’s blog about Alzheimer’s disease on the planet. She is bright, very bright, focused, passionate, and unlike yours truly she values brevity in her crystal clear writing. Check out The Tangled Neuron. And - Three cheers for Jackie, someone who stands up and speaks out! 

 
 

 Same Song, Different Verse, and Singer 

“Are We Stifling the Voices of People with Dementia?,” writes thoughtful Mona. “When my father was in his late 60s, he started having trouble finding words. As his memory and thinking went downhill, so did his speech. I knew it frustrated him, and sometimes I jumped in with a suggestion when he was groping for a word. 

After talking with Jackie Christensen, I am not so sure that was a good idea. I met Jackie last week at the FDA Patient Representative Workshop we both were attending. She has Parkinson’s, and wrote a great piece in the Washington Post explaining that even though her speech is sometimes halting, she can speak for herself.

This is not just a matter of her personal preferences - it is more a matter of her right to be directly involved in decisions and developments that affect her. She notes that most Parkinson’s organizations do not have spokespeople who have the disease. “I feel as if the voices of those of us who live with the disease — the main characters in this tragicomedy that is Parkinson’s — are being stifled,” she says. A lot of what she says might apply to Alzheimer’s and dementia, don’t you think? 

Note:  Jackie is the author of The First Year: Parkinson’s Disease: An Essential Guide for the Newly Diagnosed and a new book Life With a Battery-Operated Brain - A Patient’s Guide to Deep Brain Stimulation Surgery for Parkinson’s Disease She blogs about Parkinson’s and deep brain stimulation at Living “Life with a Battery-Operated Brain.”

 

Richard
 

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Sniffing out dementia, probably of the Alzheimer’s type

Posted by RichardTaylor at 28th September, 2009

“I know dementia when I see It.” several Neurologists have shared with me. One even told me he could diagnosis Alzheimer’s in a patient while he was sitting across the hall in his office and could only see the patient through a crack in the door across the hall. He made this claim because most folks who came to him for a diagnosis were so deep into symptoms it truly did not take a member and diplomat of the American college of neurologists to make the diagnosis and be accurate more than 90% of the time.  
One all too famous neurologist once told me when asked by yours truly how he “knew” someone had dementia,  “After doing this for 15 years I can smell it (Alzheimer’s that is) it.”  Dementia is a matter of degrees. It is not black and white, except when it is black and white and then you do not need a co-pay to discover it for yourself in others. The issues for folks who have fading cognitive skills are not what kind, so much as they are what can I do about it - it being the fading cognitive skills. (Yes, there is value in checking to see if the type of dementia you have can be “cured.” Yes there is some value in knowing what type of dementia you “probably” have, so you can be prepared for the symptoms, progression, and severity of the symptoms clustered around that particular form of dementia.) 

BUT, what are most useful to you to find out from a physician are the personalized answers to questions such as: What types of socialceuticals must my family and I invent to enable me to continue to live a purpose-filled life? How will you manage and support my family and me? How do you support others in your practice with my diagnosis, and can we all get together in a group on a monthly basis? How fast do you think the symptoms of my form(s) of dementia will progress? What are the signs I should look for that tell me it is time to come back to meet with you? How to you manage stress in caregivers of individuals with my diagnosis? How do you feel about using drugs to dampen agitation in people with dementia? 

Make up your own list and bring it with you. Write down answers. If they do not seem to satisfy you, tell the doctor, and if you are still dissatisfied - change physicians.  

Stand up and speak out. You are the consumer/customer. It may be that no doctor has all the answers you want/need. But, you decide. 

Richard

I sniffed at his response

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Hot Pot

Posted by RichardTaylor at 28th September, 2009

 

 

Hello

What happened to the knobs for our stove?

The pot that almost burnt down my house! Actually, it was me, not the pot, nor the stove that almost caused my house to catch on fire. As it was the house filled with smoke. I think I have reported earlier the fact that I sometimes make poor choices and that I forget more than others do, and I cannot figure things out in the same ways I did several years ago. 

So what happened? I needed to make more food for the humming bird migration that comes through Houston this time of year. My back yard will sometimes have a dozen humming birds, humming around looking for food.

To make food for them you boil three/four cups of water for every cup of sugar. When the water reaches the boiling point it binds the sugar so it will not separate when cooled. I saw the pot, the water, and the sugar. I turned on the electric burner to high. I forgot what I had done. I came in the house and smelled something and I attributed it to the fact that someone was cleaning the oven. I looked in the over, I touched it, and then I forgot why I was looking into it and touched it, so I went back outside to work in my garden. Thirty minutes later, my son came over and noticed the house filled with smoke! 

He saved our house from a fiery demise. It still smells of burnt sugar in the house. Luckily for me us the melted aluminum did not burn through the bottom of the stove, the stovetop was red hot my son reported.  

That is why I no longer have access to the knobs for our stove. I make poor choices and I forget more than most. 

Richard


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What happened to my nouns?

Posted by RichardTaylor at 28th September, 2009

What happened to my nouns? You know the words that refer to a person, place or thing? They are supposed to appear near the beginning of every declarative sentence. “Jason called while you were out shopping.” Now is “…pause…pause…called while you were out shopping.” My sentences now sometimes, especially when I am tired, sound like someone throwing a pair of dice in the dark. You know they have been thrown, you can hear the clicking, but you don’t know exactly what was thrown because you are standing in the dark.
 
Nouns are important! The lack of them makes for broken conversations. Conversations broken before they even started. “What are you talking about?” someone asks me. “You know …called…pause…pause someone, our son called while you were out shopping.” I respond.

 
It’s confusing and sometimes irritating to others when I talk this way. It’s confusing and always irritating to me when I talk this way. Sometimes I know I am doing it, and just can’t find the noun. Sometimes I don’t know I am doing, but do it anyhow. Sometimes I deny doing it after someone questions me.
 
This doesn’t seem to happen to me when I write. It doesn’t happen to me when I am reading aloud from a book or newspaper or speech. It doesn’t seem to happen to me in the mornings. I’m scared it happens more than I know. I’m fearful this is an early warning sign of aphasia. Talking is how I now earn a modest living. Talking is how I interact with my world, with my family, with my friends.
 
What if I can no longer speak in complete sentences?
 
What if I can’t speak at all, just huff and puff?
What if?

 
Richard 

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QRD-a better way….

Posted by RichardTaylor at 28th September, 2009

The right way for an Alzheimer’s Association to decide what research proposals it should fund

 
I am not proposing we should stop all research on the search for a cure - pill, or event that we should slow down research on the quest for a slow down the progression pill cocktail. I do advocate we spend proportiontely more on psycho-social research and less on the quest for the cure pill.
 
QRD - if you insist on spending some money on the search for a cure for a disease whose cause has a yet to be discovered (in spite of the fact we have been looking in earnest for it for the past 30 years), and if you insist on spending some money on finding a cocktail of pills to slow down the intensification of the symptoms of the disease in most everyone who “gets it:” if you still want to continue stumbling down these thus far blind alleys then at least please consider the British Quality Research in Dementia model may be the best way thus far to go about it.

 
The Alzheimer’s Society of the UK divides its research focus into the three C’s: some funded research for Cause, Cure, and Care (they are considering adding research into slowing the progress of the disease, but haven’t made up their minds quite yet, and are looking for a word that starts with C to describe the new emphasis).
 
All proposals for funding from researchers are first reviewed by committees composed of people with dementia and their carers. They decide the first “cut.”
 
Then another committee of research experts that also includes at least one person with dementia and one carer evaluates and ranks the proposals. All this process is transparent. If proposals are so complicated that only a few human beings on earth can understand them, then perhaps they need to be simplified. If only other members of the research club are able to appreciate them, then let the club members fund the proposals - not the Alzheimer’s Society.
 
Next this committee invites in the top proposers and interviews them - the experts, the people with dementia, and the carers are the interviewers.
 
Those proposals selected for funding are assigned a monitoring group; yep you guessed it, one expert, one or more persons with dementia and one or more carers to periodically review the progress of the research and the grant.
 
What a novel idea, trusting people with dementia, caregivers, and experts to be able to work together to decide how best their Alzheimer’s Society should spend their money.
 
The English Alzheimer’s Society spends 6-10% of their annual budgets on funding research (we spend 40-60% of the National Alzheimer’s Association funding research, but our method of selection, who and how we trust “experts” to decide who gets how much for how long couldn’t be more biased towards bench research over psycho-social research). Committees of researchers sometimes read each other’s proposals and decide who gets what. Board Members of the National Association are researchers. Employees of the organization are researchers. This closed club of folks, none of whom has Alzheimer’s disease, none of whom is required to be living with and taking care of someone who has Alzheimer’s disease, not of whom is required to first consult with people with a diagnosis of dementia, probably of this or that type - these folks decide how best to spend your donation. What about the true stake holders in all this?

 They are encouraged to sign up as “subjects” for research/experiments (sometimes they are reimbursed for their gas and oil expenditures, sometimes they get free physicals the results of which they are seldom told.) They are encouraged to support research efforts by donating money, just like everyone else who is not a stake holder is encouraged. It’s just not very encouraging, but that is how research dollars are passed around by our National Alzheimer’s Association.
 
It’s time for a change. Now!

 
Richard
 

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This Bud is for you! Bud.

Posted by RichardTaylor at 28th September, 2009

A good and thoughtful and thought-filled friend of mine, Bud, wrote me and offered a thought proving questions/observation “You haven’t changed - you still want everyone to be just like you. You give the impression that the elements of your purpose should be the gold standard for others with dementia for their purpose.” 

Can this really be true?  Are my repeated appeals to enable people with dementia to have a purpose, defined as activities that help people feel good about themselves based on my own needs to act and feel like a PhD for as long into the disease process as I can? Am I expecting, hoping, preaching that my own needs for purpose, driven by my own insecurities and my own fears of living purposeless are being projected on to and into the lives of every person living with dementia on the planet? Or have I stumbled across some universal truth that applies even to those whose minds are apparently the captive of the deepest most destructive symptoms of dementia? An interesting and very important question, raised by a good friend, which has stimulated and pushed me to think more about purpose.  

When I ask others to enable people with dementia to discover a new sense of purpose am I expecting everyone, in every stage of dementia to have a job/work like purpose, or would I accept that purpose could be for some enjoying sitting in the sun, listening to music, holding the hand of a carer, and/or just sitting still and silent without an apparent thought passing through a mind. I’m sure Buddhists would be contented with this last definition. They try hard not to try hard to get there without the benefit of declining cognitive skills.   

I accept inner peace for some is a quieted mind, but you still have a heart beat, albeit a very slow one, and you are still breathing, albeit very slowly. But that is their choice, they can return to being conscious about their world, return to being involved with the world around them, feeling good (date I say about themselves) because they have done something today that created/influenced/stimulated happiness in some other human being, and in themselves. They are in charge of themselves. They are responsible for themselves. They give and receive love from other human beings. 

I don’t want or expect everyone to be me, or like me. The content/path/intensity of purpose is different for everyone. I do want everyone who cares for me, who works with us to see as a part of their daily responsibility to me to enable me to be as purposeful and purpose-filled a human being as I can, as I want to be, as I should be. I want everyone to constantly be presented with the support to feel good about themselves, to understand and appreciate today, the moment, this moment.  But more to the point, I want everyone to have a choice as to what defines their sense of purpose. I want a full range of choices for everyone. I want a full range of support for everyone, especially those living with dementia probably of this or that type.

 

Richard 

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If I were a nude mouse, living with the symptoms of dementia

Posted by RichardTaylor at 28th September, 2009

If I were a nude mouse, living with the symptoms of dementia, probably of the Alzheimer’s type, I wouldn’t sign up right away for the Dimbeon lunch special
Because no one know what causes dementia, because no two people respond to the symptoms in the same way, because no two people have exactly the same symptoms, because no two people are overwhelmed by their symptoms on the same time-line - we can only say, but clearly not necessarily know with certainty the impact a new drug has on the progress of the disease. When one of the side effects of the drug is to increase the amount of a substance in our brain which some researchers have labeled as one of the causes of dementia, isn’t it time to say “Stop!” We gotta first figure this out before we encourage people to run a short race while knowing they are losing strength for the long race. 

So this pill slows down the progression of the disease while at the same time increases the substance that perhaps/probably is close to or may be the first cause of the disease? Hello? 

And by the way, is the same drug company now testing this new drug and at the same time buying the company that claims their vaccine will remove the substance the new drug produces as one of its side effects? So I take one drug to slow the effects of the disease, and I take another drug made by the same company to reverse the side effects of the new drug.

And by the way some of the researchers running the trials are stock holders of the new drug. And by the way the drug company testing the drug has already touted it as a “breakthrough” before the results are in from the stage 3 test.

 
Why don’t I just stick to coated fish oil tabs and a million or so units of every B vitamin I can find?* 

Richard 

Note: In case you forgot or did not notice, I am not a physician, and this is not intended as medical advice. If you are confused, go see your doctor and ask/let her/him explain this to you. It should be an interesting conversation, well worth your co-pay.  

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