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Hello!
I am Richard Taylor and for the past seven years I have lived with the diagnosis of dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome. I discovered that thinking, speaking and writing about what it is like for me to live with this disease has become the new purpose of my life.
Every month I send out this email, and every month I receive two or three hundred responses from people who agree or disagree with me. I answer each of them. Instead of the N.Y. Time crossword puzzle or trying to beat my granddaughter playing my Wii - I think, I write, I talk, I listen, to and with others who share the diagnosis of dementia, probably of this or that type.
I hope that after you have read this month’s writings you too will think, write, talk, and listen to others who live with the diagnosis of dementia, probably of this or that type. Speak Up! Speak Out!
Thanks.
Richard
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Don’t just sit there! Jog or play Bingo or do something!
Hello.
Recently the National Institute of Health released a report on what they thought caregivers should do with and for people living with dementia. “Keep them (us) busy!”
“Help him/her to find a new hobby, volunteer somewhere doing something, fold and refold all your socks and/or towels, play Bingo with himself or others.” say the professionals to our caregivers.
“What about jogging in place, or writing 500 times: “I’ve lost interest in life, especially my own life. I’m scared; I’m lonely” I sarcastically reply.
Why don’t “they” (whoever “they” may be in your life) get “it”? When you leave your job, you can’t drive, you must of necessity ask for help doing things you did by yourself in the recent past - when this cosmic convergence of restraints comes into your life following the words. “You have dementia, probably of this or that type” you (we) (me) lost our sense of purpose. Our reason for waking up in the morning, and staying awake all day sometimes quickly, sometimes slowly, but always inevitably erodes and eventually disappears. Our reason for feeling good about ourselves, the reason for working at staying alive, fulfilled, growing, and fully being goes away.
Activities, especially those suggested by people who have no idea who we really are, what our purpose was previous to diagnosis, how we went about realizing it, activities are not a substitute for purposeful activity. Everyone knows this! Everyone knows the difference for themselves.
Please spend a little time engaged with people with dementia helping us figure out what are the elements of our purpose (new and/or old), and how we can participate in activities that fulfill our need to lead a purposeful and joy filled lives. Thank you very much!
Richard
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This Little Light of Mine
Hello.
What would the world be like if one day the 6 billion + people who inhabit our planet woke up and suddenly everyone agreed there was no such thing as Alzheimer’s disease? Would the lives of the five plus million people in the United States and millions more around the world who are already living with the diagnosis of Alzheimer’s disease significantly change? Would the lives of their caregivers change? What would change if there was universal agreement there was no such thing as Alzheimer’s disease?
For me, a person who has lived with the disease and the diagnoses of the disease are more than five years I doubt that anything would change. My mind would still wander when I didn’t want it to wander. I would still wander when other people didn’t want me to wander. I would still be unable to recall events, to recall the order of events, to understand events in the same general way that those around me understood the events.
The current discussion centering on the reality of the disease called Alzheimer’s seems to me to be irrelevant and in fact distracting to me and to others. Certainly there are financial consequences, certainly there are egos involved, certainly there are jobs and reputations and even the survival of large organizations dedicated to fighting Alzheimer’s disease at stake. These are indeed real issues for the scientific community to address, and for the media to exaggerate and exploit.
Still, I wake up each morning with symptoms, with the syndrome, with a similar set of cognitive deficits that I seem to share with millions of others. With the general, erratic, and sometimes unpredictable timeline. With an almost random selection of symptoms relative to the symptoms other individuals experiencing. I wonder why don’t I do that, when others who have the disease to it. And I know they wonder the same of themselves as they see me and others. There must be answers I tell myself. There must be truths, certainty, a rational explanation of what why when and where and how to understand, predict, change if necessary my behavior in the next five or six years.
The more people who share my diagnoses I spend time with, the more I am convinced there is no truth to this disease in the sense that the medical model and we are sure or is there, we have just yet been unable to discover.
It may turn out that we discover the brain is smarter than we are. Maybe Hal lives in all of us. Maybe we are smarter than we think or our brain is letting on. But always in the end we are left with ourselves. With our sense in our knowledge of we are, what we are, and how we are. I just don’t have those senses with clarity I did for the past 50 or so years. That’s a real fear of mine. That’s the darkness I feel between my ears and deep within myself.
I still yearn and search for the light. I don’t like living in this flickering twilight zone. I wish I could adapt. The light seems dim, sometimes bright, increasingly flickering. I can’t depend on steady illumination of what is going on around and in me. Perhaps the song I learned as a child was right…
“This little light of mine, I’m gonna let it shine,
Don’t let any one blow it out, I’m gonna let it shine
Carry it all over the neighborhood, I’m gonna let it shine, let it shine, let it shine, let it shine!”
Richard
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When is the best time to start paying special attention to your favorite organ?
Hello.
When I went to my general practitioner the year I turned 50 I couldn’t help but notice that my annual physical was longer, more extensive, more expensive, and focused on organs of my body that prior to my fiftieth birthday no one including myself seemed to have paid much attention too.
We spent 15 minutes talking about my prostate. We spent 10 minutes talking about the density of my bones. We spend five minutes talking about the frequency and ease for me to pass water, and almost a full ten minutes exploring in detail my bowel movements, past-present-future. Cholesterol got kicked up the list of priorities of things to worry about. Stress tests were discussed as a definite possibility. And “Oh by the way,” said my GP “Don’t forget take your own blood pressure every few minutes; worry about clogged arteries, blood clots, glaucoma, blood clots, glaucoma, COPD, IBS, RSLS, ABC, XYZ; and last but certainly not least pay special attention to the frequency, duration, and intensity of my sexual experiences. “
All these concerns were measured by tests and charts comparing them against the “norm” of other 50-year-old males, and discussed with me at great length. I left the office with a handful of new prescriptions another handful of pamphlets and the admonition that it was really important for me now that I was 50 years old to have a complete physical every year.
Two weeks after my fifty-eighth birthday I was diagnosed with dementia probably of the Alzheimer’s type. It had taken bevy or a gaggle or at least large group of highly qualified and trained specialist to collectively agree on the diagnoses.
Wouldn’t it have been wiser of me and my general practitioner to pay more attention to my favorite organ (my BRAIN) when I turned 50? It is past time for many of us baby boomers to establish a baseline of our cognitive functions. How well do we remember. How well do we understand. How well can we figure things out? How “well” is our brain - compared to other brains of other human beings who are the same sex and age,
I now believe that everyone upon living to attend their 50th birthday party should ask their doctor to include testing the various cognitive functions of their brain that year and every three years for the rest of their lives.
When we are experiencing the symptoms of cognitive disorders or deficits it certainly behooves us to immediately ask to be screened for the various forms of dementia. But most certainly having a baseline to compare these results to would be very useful to our physician and to ourselves to appreciate and understand what was going on between our ears.
There is a barrier when applying for long term care insurance if you have previously been tested, screened, and/or mentioned the word dementia in your doctor’s presence. Get the insurance before you turn 50! Currently there are semantic games being played between physicians and insurances companies concerning if they will pay for tests that establish a base line, as opposed to screening to confirm or disconfirm a possible diagnosis of Dementia, probably of this or that type.
I haven’t found the right word to describe screening without saying screening. Many people actually say they are frightened to ask to be screened for dementia. Many people are frightened to the point where they won’t even say the word dementia. A giant step towards lessening those fears would be to include brain screening, establishing cognitive benchmarks, on our fiftieth birthday and then comparing them by using the same instrumentsevery three years thereafter.
Richard |
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I had a Dream…
Remember John Denver or Simon and Garfunkel signing: “Last Night I had the strangest dream, I ever dreamed before?” (Ed McCurdy wrote it). http://www.youtube.com/watch?v=BcwAJZGXsk
Well, last night I had the strangest dream. I dreamed the leaders of the Alzheimer’s Associations, Researchers, Congressional Leaders, and a host of other professionals all sat down and agreed to sit around the table until they came to some consensus on how to lead this Nation through the greatest public health crisis of the first half of the 21st century.
I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:
The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,
Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease -
Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!
Richard
Links:
Yours truly was recently interviewed for a local news paper, here is the link:
http://www.chron.com/disp/story.mpl/life/main/5783431.html
The Myth of Alzheimers:
http://www.themythofalzheimers.com/
The Tangled Neuron:
http://www.tangledneuron.info/
Groups to Join:
http://health.groups.yahoo.com/group/alzheimers/
http://health.groups.yahoo.com/group/dementiarescue/
http://health.groups.yahoo.com/group/DASN/
http://health.groups.yahoo.com/group/Best-Friends-Alzheimers-Disease/
Two sites that are organized, timely, and PWD friendly:
http://www.alzheimersweekly.com/
http://www.healthcentral.com/alzheimers/?ic=6002
Online Press Kit which contains some writings from my book:
http://www.healthpropress.com/media/taylor/index.htm
Online homepage for my book Alzheimer’s From the Inside Out:
http://www.healthpropress.com/store/taylor-9233/index.htm
Make It Happen Now!
http://wwwmihonline.org/
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Brain Freeze!
Hello.
At a recent conference on Alzheimer’s Disease, advocates were told the old/new strategy (justification for spending lots more money on research) is not necessarily to cure the disease right now, let’s at least discover enough pills so that if people will take them, and they can afford them, and there are side effects which people are willing to live with, and did I mention if they can afford them - then the symptoms of the disease will be sort of frozen - they won’t get any worse, they won’t get any better - folks just won’t have to deal with more of them.
In the mean time researchers will be working day and night to discover the elusive cure for the disease(s). They will be working on ways to reverse the course of the disease. The goal is to live in a world without Alzheimer’s disease and a world with no one living with the symptoms of the disease caused before we discovered a way to cure it.
“Oh!” say I and 10 million people already living with the disease, “Why didn’t you just tell us what you wanted to do to and for us in the first place?”
So now the justification for lots more money = lots more research = more results is: “we won’t necessarily cure the disease, just halt its progress.” So a “world without Alzheimer’s,” while still the goal, will first become a world with lots of Alzheimer’s, only the progress, severity and number of symptoms will be slowed, or perhaps even frozen in place.
If we can’t figure out what causes it - maybe we can figure out how to slow it down to the point where we can maintain people in the disease (with whatever symptoms they are currently living with), perhaps even keep them at home for an extra year before they “must” be institutionalized (that would save the government big Medicare bucks).
What if folks can’t afford the twice a day hands full of pills needed to “halt the progression?” We can give them a tax credit.
What if the progression isn’t being halted, only the outward symptoms are being held in check? Isn’t this essentially what current medications claim? The disease progresses at about the same rate in everyone, but take these pills and it will be awhile before you quickly catch up (symptom wise) with folks who haven’t taken the pills. We can all be thankful they didn’t act like they were getting worse.
Maybe, with the extra year or two we can “buy” with these pills we will discover a cure! Maybe we will discover how the brain works!
Maybe we will discover what happened the second before the big bang!
Former Speak of the U.S. House of Representatives Gingrich told us we are going to know five times more about the brain in the next six years than we know today. Surely more is better…or perhaps more is simply more. And….therefore….perhaps……
Maybe, maybe, maybe.
What about today, damn it! What about tending to the real needs of today’s citizens? Have we already done our best to figure out how best to live with the disease? How to find a new purpose in life living with the disease? How to be happy in a nursing home? How to convince families to honor, respect, and invite into their homes their own parents? Of course not.
Research, effort into these current problems of real people is not as glitzy as discovering the “breakthrough” that leads to the cure of the disease (if indeed it is a disease amenable to a cure in the sense that “here take this pill and you will be better, cured as it were”).
It’s harder to figure out - too many variables - too complicated. Well that doesn’t keep us from throwing more and more money at brain research. Save the brain and ignore the person, the family, the community in which the brain lives.
Maybe we will and maybe we won’t, figure out how the brain actually does and does not work. The point from my perspective as one living with the disease is how easy it is for people who don’t have the disease to convince themselves living with the disease for a year or two or three or four more beats not living with the disease for a year or two or three or four more because they died. Shouldn’t someone ask us? Shouldn’t we be included in these initial huge decisions being made by of all the people the folks who have the least to benefit from the decisions from the point of view of the consequences of the disease but the most to gain from it for a variety of mostly well intended but certainly with more than a teaspoon of self interest?
I don’t questions anyone’s motives, I question their 100 year history of failing to involve the people in whose name they act in the decision making process. Now we’re talking big bucks, now we’re talking about the survival of Medicare as we know it. Now, and always we are talking about adult human beings - not children, not beings, -human beings. This current national dialogue that has taken 100 years to begin, began with one person with dementia speaking up and then…..Let’s get back to “the experts.”
Let’s talk to knowledgeable caregivers, to M.D.s to representatives of organizations dedicated to funding the search for a world without Alzheimer’s, let’s talk about the NIH, lets talk about waste and fraud. But first and last let’s talk to people who are living with the disease. Let’s get them on the committee. Let’s work with them.
I tire over trying to think through some of the cock-eyed rationalizations self-interest groups think up to justify giving them more money, while ignoring their lack of progress and their lack of a consensus even amongst themselves that what they are doing is the “best” course of action. We won’t be here tomorrow. We won’t be the leaders. But, we are here today, and others will be here tomorrow. It isn’t right to expect people with dementia to be the “voices of reason” in the setting of National priorities concerning their disease. It also isn’t right to exclude them.
Wait a minute, at least a minute, perhaps even two or three before we rush off trying harder (this time with an adjusted justification), still without a strategy other than more must be better, still without a consensus of where best to spend all these extra bucks we found somewhere, still without knowing how or even if we can deliver something we discover to the parts of the brain we have yet to identify, and now acknowledging the best we are now hope for is to freeze human beings in whatever state they are with the disease (no one dares to say we are actually going to “heal” the brain when it comes to dementia).
So here I am. Here are almost 10 million people living within one of the disease of dementia, trying to get through the day, around our symptoms. Watching a national debate from the sidelines about us.
Am I the only one who thinks “they” (whoever they is) keep making stuff up as they go along? Blind to the sides of the boxes they helped to build around themselves. Defensive when other stake holders (dare I say the real stake holders - the people with the disease) ask (increasingly demand) to be part of the process - not advisors.
Is that what leaders do?
Richard
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