MAGNIFICENT METAPHORS OF WHAT IT’S ALL ABOUT

Two articles in Alzheimer’s Reading Room captured my attention this morning. They are entitled:

1.     The Long and Winding Road -- Alzheimer's Disease

2.     Keeping The Love Alive: The Sacred Stand-In

Click on either to go to Alzheimer’s Reading Room to read them or click on Archive where I have posted them both for reading.

I entitled this post commenting on the two articles as Magnificent Metaphors of What It’s All About. The purpose of this title is as follows:

In The Long and Winding Road, Bob Marco, the writer and the person responsible for the Reading Room writes of a trip from Geneva to Interlaken in Switzerland. He took the scenic but difficult mountain road not realizing there was an easier, straighter, flatter road through the valley to Interlaken.  

Not having a choice at the time he took the scenic route because he did not know of the easier non-scenic route. He mused what road he might he have taken had he known of the other. He then spoke of what he would have missed had he taken the easier route.

This is the key to his metaphor. As a caregiver, it happened, he did not choose. He found himself there and he responded choosing to look around and get the most out of the experience as he could.

This is the essence of being in the World of Alzheimer’s. You are there whether by choice or by happenstance. It is not a question of where you are but what you make of it that is worth the thought and the pondering of it.

Bob notes the experience of it laying it in its real practical fact. The next article, Keeping the Love Alive Sheryl Lynn describes a wonderful gift found along the way. In the course of caretaking her mother with dementia, she happened on a neighbor and in that meeting between them they both evoked an interlude of love while in the encounter. The article describes this gift wonderfully.

Bob speaks of the harder road. We all know of that road whether we be caretakers or the person afflicted with Alzheimer’s Disease (AD). The road we take is difficult but strewn with jewels. It is ours to look down to see them and take for ours those we will. Sheryl speaks of her taking but one of those jewels.

As I have been sailing through this stormy sea of AD I have become aware of the jewels available for me.

They are, each one of them encountered, there for my taking. The grandest jewel encountered has been love. The love available in the giving is the most wonderful feature of the jewel. Mirrored as you look through the cut facets of this jewel you can see and feel the love returned. It is as if AD has cleared the mist of business that obscured my capability of appreciating the power and warmth endemic in love. 

Like a virus AD infects you with so many wonderful things accompanying the terrible parts of it we know so well.

It is these wonderful parts, made available only while on this difficult mountain road that AD is, that we become privy to gifts available for the taking.

It is this aspect found on the difficult path that is ours in the world of AD that shades this misfortune into the gift, the blessing that it can become.

Both Bob and Sheryl describe the wonders of making it a gift and finding its blessing.

CHICKEN OR THE EGG, Which Comes First?

I am posting five articles in my Archive. All five are foundation for my comments in this post.

The five are:

1.     Stress may increase risk for Alzheimer’s disease

2.     Food for Thought: Diet and Exercise as a Preventive Strategy for Dementia

3.     The Power of Music in Alzheimer’s Disease

4.     Facts as seen by Alz.Org

5.     50 Fascinating Aging Facts for Older Americans Month

The first three articles are significant. They represent so much more now being written about care of people in the Early Stage of Alzheimer’s Disease (AD) a proposition which in 2010 received very little acceptance and the powers in AD such as the National Institute of Health and both the national and the local Alzheimer’s Association did their best to dispute saying none of the plans worked, nothing worked to delay the progress or AD or prolong a person’s time in the functional Early Stage

.

Stress qualifies in my book as a cause of my AD. I have no family background, I have none of the indicators that it was or could be developing. However as I look in retrospect, look back years before my diagnosis many were the times I experience anomalies to my usual order of things that I could not explain. Accordingly I filed them away as unexplained instances.

With the hindsight of diagnosis and the changing of opinion going on in the 5 years since my diagnosis I am able to now see the slow steady development of this disease in me. Had I had an earlier diagnosis I wonder what might have been possible in slowing the development of the disease.

As it is my diagnosis was the product of early detection. My driving became such as to alarm my wife. Finally after too many near misses I agreed to see our doctor and inquire whether or not something was amiss. It was, he told me not to drive, following a simulated driving test which I flunked miserably, following a series of tests culminating in a Neuro Psychometric test confirming my neurologists prognosis, it was evident I had AD.

 

The Neuro Psychologist who conducted the test and told me mine was an a-typical AD explained it this way. My limitations although profound were not emanating from the part of the brain that AD damage first appears. The limitations manifested in the test would be demonstrated in my functional areas of multi-tasking, executive function and visual perceptive. A strong memory component was not manifested in the damage to my brain. The interesting part of this prognosis is that it was exactly the symptoms my wife and I related to the Neurologist who told us it was AD.

Now five years later publications are catching up. My diagnosis was subject to question because it lacked a finding of significant memory. Lacking the memory loss I did not fit in to the definition psychologists gave AD in their Diagnostic and Statistical  Manual (DSM 4). It required in order to call a group of symptoms AD the diagnostician should find memory loss and one other of a list as existing.

It set the following out:

First, multiple cognitive deficits must be present, one of which must be memory impairment. In addition to problems with memory, one or more of the following must be displayed:

Aphasia -- a deterioration of language abilities, which can manifest in several ways

Apraxia -- difficulty executing motor activities, even though movement, senses, and the ability to understand what is being asked are still intact

Agnosia -- an impaired ability to recognize or identify objects, even though sensory abilities are intact

Problems with executive functioning, such as planning tasks, organizing projects, or carrying out goals in the proper sequence

Currently DSM 4 is being re-written into DSM 5. Although not final as yet some of the language being proposed is this:

One (or more) of the following cognitive disturbances:

a. Aphasia (language disturbance)

b. Apraxia (impaired ability to carry out motor activities despite intact motor function)

c. Agnosia (failure to recognize or identify objects despite intact sensory function)

d. Disturbance in executive functioning (i.e., planning, organizing, sequencing, abstracting)

What finally results will be interesting although it won’t be dispositive. The fault of what is at this time is the making of all of the professionals, the Medical, Health Care, Psychologists and myriad other professional particularly those in the AD support and consulting field spend too much protecting their opinions and justifying their actions, not based on results or successes but rather on the way they have always done it.

In the changing picture I see I call attention to another article I posted May 18, 2011 in my Archive and the corresponding comment in my Blog. They are  Memory Loss May Not Be the Only Sign of Early Alzheimer's  and The Continue Saga of Doing Nothing About It! Click on them to go and read them.

The article on memory loss and the fact it may not be the only sign is succinctly stated this way in the first paragraph of the article carried by WebMD on May 16, 2011:

More than one-third of people who develop early-onset Alzheimer’s disease may experience initial symptoms such as behavior, language, or vision problems rather than memory loss.

This fits my experience like the proverbial, “Fine Kid Glove!” Dispute existed as to whether I really had it or not. More things were ruled out and AD was the only diagnosis left standing. This troubled me deeply at the beginning. I knew I had something, it was not good, it was progressing, ever so slowly, to the point now where only now 5 years after diagnosis am I starting to have demonstrable memory loss.

I see this as a disservice to me by the professional community. I have gotten so much solace since having brain damage of one kind or another diagnosed in me writing about it advocating on the issue concerning it.

Having this terrible change cast over me by using it for some good I have been able to tolerate it so much better.

The squabble behind what is this and what is that, should it be in or out and all of the other petty bullroar going on serves none of us with AD any good. It strokes egos that I personally do not care about. What I do care about is the lack of attention given us with the disease.

So much needs to be done and can be done if ever they get around to doing it. We need to have effort to keep us early stagers right there as long as possible. One way is earlier and earlier diagnosis, which with current recognition of myriad symptoms manifesting its grip, seeing this as evidence of AD developing will aid early detection and early diagnosis.

It has been said numerous times that this would prolong our stay in functional early stage five more years than otherwise. The other leg needing attention desperately is breaking the hold hi-finance has over institutional care. We need to find ways that will provide care at costs we can afford. Taking the gratuitous profit schemes out of creating the infrastructure of care is one large step needed to be taken.

That is where the last two articles I have noted in my list of five these are noted for the way they describe what is happening to all of us and why we need act.

4.     Facts as seen by Alz.Org

5.     50 Fascinating Aging Facts for Older Americans Month

FINIS! The End of my Series on AD Needs

I have been working on a series of essays dealing with what I believe is needed in our country to cope with a growing epidemic of numbers of people with Alzheimer’s Disease (AD. AD has gone beyond possibly, beyond probably and is becoming a calamity in the making soon to become a national economic catastrophe. The numbers are there, they add up to the impossibility to handle the number of people who will soon be AD patients in need of institutional care.

The purpose of my essays has been to look at the crisis, evaluate its validity and to see whether or not there is a way out of the disabling paradox it poses.

I have now written nearly 30 essays and it is time to wind it down. I could write endlessly, do another 30, but at some point it all becomes redundant. This struck me yesterday as I posted a comment on an essay appearing in The New York Times entitled Our Irrational Fear of Forgetting. My view of it was stated in the comment that I posted about it entitled “Beyond the Pale” in the realm of “Irrationality!” Click on either to go there to read.

For the past five years I have followed much of what has been written about AD and in the last two plus years have commented some 498 times and posted some 382 articles about which I was writing.

I have been concerned that nothing but raising funds to find the cure was getting anything more than lip service in the professional support community. What prompted my writing of this series is currently seeing this changing, seeing the development of efforts to care for Early Stage AD Afflicted, if for nothing else to keep them out of the irrationally high cost of care. This has been accompanied by a growing concern for changing the style of treatment, getting away from warehousing people afflicted when the need care.

There is a growing concern to find ways to keep the AD Afflicted in their homes and serving their needs there.

There is a strong move toward Early Detection and Early Diagnosis for those afflicted with this disease. This expands the window in the course of the disease stretching it back to an earlier time in order to provide treatment when it has a greater opportunity to help the person diagnosed

This all suggests the Nation Now Notices the Need to help the people who have this disease and not concentrate solely on funding research to find the cure for those who will in the future face a diagnosis of AD.

This growing Sense of Concern offers the greatest likelihood that we as a society, those of us bound together in our respective communities and the greater community comprising our country are willing to face the problem and act to do something about it.

Then we see an article like the one in the New York Times. Stating a premise on supposition and anecdotal instances of which the author has learned, based on this along with the fun had dealing with her Mamma who apparently has it, she writes a diatribe that does more harm to folks affected by AD and the country then good. Nothing is more flagrant in mis-characterization than any I’ve seen since the adoption of the stereotype of AD being that guy caught in the corner unable to get out. It breeds irrationality, knee jerk bias in the form of denial, and is completely Pollyannaish in the author’s view of the AD world.

For reference I include the outline I followed in writing this series:

Topical Outline for Series of Essays on Issue of Needs of People Affected by AD

I.     The Programs for Alzheimer’s Disease (AD) as they are today.

a.       AD is recognized as a dementia

                                                               i.            Components, losses or effects:

1.      Memory impairment

2.      Cognitive dysfunction, diminished cognitive acuity

3.      Visual spatial dysfunction

4.      Balance and flexibility problems

5.      A variable but progressive rate of mental and physical deterioration in the greater share of cases.

                                                             ii.      Dementia defined:

Dementia ^[1]

·        Dementia is not a disease. It is a general term that describes a set of symptoms that may be caused by a number of different brain disorders. These symptoms involve mental decline severe enough to disrupt daily life that affect more than one of the following core brain functions:

·        Recent memory — the ability to learn and recall information.

·        Language — the ability to write or speak, or to understand written or

·        spoken words.

·        Visuospatial Function — the ability to understand and use symbols, maps and the ability to correctly judge where objects are.

·        Executive Function — the ability to plan, reason, solve

b.      Progression of AD:

                                                               i.            Experts have developed “stages” to describe how a person's abilities change from normal function through advanced Alzheimer's.

1.      Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline [2]

2.      Stage 5 is unfortunately where AD is most often diagnosed, at which time not as much can be done to prolong its course and add to quality of life.

3.      Before Stage 5 with early detection much can be done to prolong independent productivity and functionality of person impaired

c.       Cause of AD:

                                                               i.            Amyloid deposits interrupting functions between cells in the brain

                                                             ii.            Brain cell damage

                                                            iii.            Vascular insufficiency

                                                           iv.            Brain atrophy

                                                             v.            Greater part UNKNOWN CAUSES!

d.      Treatment and remedy

                                                               i.            Medication

                                                             ii.            Healthy Diet

                                                            iii.            Exercise

                                                           iv.            Stimulating social, intellectual and creative activities

                                                             v.            Attitude

                                                           vi.            Change of care consideration by invoking a different approach and thinking about care designed to actually help people with AD

>> At least to the same extent as is spent in time searching for a

 cure.

1.      Programs for Earlier Stage Patients

a.       Starting with early diagnosis

b.      Informational followed by active programs in place to assist and help the people in early stages to remain functional and independent

2.      Invoking programs for remediation along with current programs of palliation

a.       Remediation:

                                                                                                                                       i.      Programs publication and forums to inform and to teach

1.      How to accept

2.      How to cope

3.      Value of medication

4.      Value of best practices

5.      Active programs for ESAD:

a.       Programs designed to prolong functionality and maintain good quality of life.

b.      Programs to enhance brain health and brain therapy akin to stroke therapy

c.       Programs to institute grass root initiatives of care  emphasizing volunteerism, local government authority, including financing authority and use of vacant infrastructure in place.

b.      When Remedial measures exhausted and/or in supplement, Palliative Care designed to make the patient comfortable.

e.       Current incapability to deal with overall problems of AD.

                                                               i.            Too much emphasis in Funding Research for a Cure

                                                             ii.            Too little emphasis on helping those already with AD

f.        The need for a radical paradigm shift seeking Economy in Care

                                                               i.            Adopt as a new Mission Statement: “How Can I Help, What Can I Do for You?” instead of  current attitude: “Take Care of Your Own Problems Yourself, Don’t Be a Bother!”

                                                             ii.            Ways, means and purpose:

1.      Prolonging functionality thereby saving cost of professional care

2.      Providing local economized care in grass roots formats, eg, Cities, Villages, Neighborhoods, Multiple Dwelling Buildings and Complexes Churches, Synagogues and Mosques as well as other Eleemosynary Groups organizing the sharing of services and finding as many volunteers to supplement help and reduce cost.

3.      Find new formats and infrastructure for assisted living and nursing home care, not centralized into federally financed, regulated and financially designed as good investment vehicles as 67% now are, causing the cost to rise to the heights that are both prohibitory and confiscatory as they now are.

4.      Open this effort as the New Moral Frontier as WE DO FOR ONEANOTHER!

---

[1] Page 1 2010 Taking Action e-book.pdf

[2] http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

For anyone having the interest to read more concerning these issues I have the essays all posted on the following named Blog Site: ALZHEIMER’S HOPE A Working Primer of Care Of ALZHEIMER’S DISEASE.

Click on the this title ALZHEIMER’S HOPE or paste this WebSite address to the WebSite window at the top of your browser to go there and read them.

“Beyond the Pale” in the realm of “Irrationality!”

Looking out of the window of my house in AD World, looking beyond our boundaries into Normal World the view is enough to make one throw-up, literally. Our Irrational Fear of Forgetting an article appearing in the Stone, the philosophy column of the New York Times, goes “Beyond the Pale” in the realm of “Irrationality!” The opinion of the writer, purporting to write on philosophy is an exercise in ignorance of the issue.

Years ago I heard it said the New York Times was written at a level of understanding in which a 12 year old could understand content. It seems the writer in this article is not only writing from that level but thinking and reasoning below that level.

I hope the writer and her Mamma get along in their cubicle of halcyon removal from the rest of us fighting real issues as they concern Alzheimer’s Disease (AD) the current curse of our time.

Little does the writer seem to know the crushing conundrums of Prolonging Early Stage, or, just giving up and waiting for the van to take us to the nursing home? Paying for the nursing home is paradoxical on its own. No one pays it but us, it then leaves our spouse without the wherewithal to survive. Do we continue with the system as is and trust they find a cure, or, should we look at the system of care and try to get it down to a level where we, our communities and country can afford to pay it.

The future bodes bankruptcy in the end as the Silver Tsunami of AD engulfs us.

I could go on ad infinitum, but, I am tired of saying it all the time. I will say this, I need to say this: The tenor of the article is “Have fun, Don’t worry, most of the crap about AD is Balderdash.

The biggest singular issue we face today is getting the criteria of AD organized sufficiently so it can be identified, and identified early. With Early Detection and the opportunity of diagnosing it early there is multiples in possibility of working with it and prolonging the Early Stage where we can be the most functional, care for ourselves with minimal caretaking and no expense of professional care.

Putting The Best Practices into Practice!

Reason alone will tell you the truth of the proposition laid out by Bob DeMarco in his article entitled Alzheimer's, Exercise, Lifestyle posted on Alzheimer’s Reading Room. Click on the article to go and read it, then click on his second article entitled “Brain Healthy Eating” Tips for Baby Boomers in Celebration of National Mediterranean Diet Month to go and read that too. 

Both Articles are also posted on my Archive which you can click on and go to both posted in succession.

 The  recommendations made are part of a three pronged recommendation that makes a world of sense. The proposition: Called the “Best Practices” advocates “Eat Right, Exercise Daily Become Involved in Stimulating Intellectual, Social and Creative Activity.” It is that simple and it works.

Each of these admonitions make sense, exercise makes the most sense. Need more be said than a regular exercise program produces so many living perks it doesn’t make sense not to do it. Whether you consider the lift to your mood produced by the increased chemistry in the brain that promotes calm, serenity, relief of stress or the increase in overall energy, the effect is salutary.

Sidestepping the point of Bob DeMarco that exercise and the Mediterranean diet delay the onset and progress of Alzheimer’s Disease (AD) which it certainly does, I think we have to add to the support for the proposition the collateral benefits that result, each of which, all of which, contribute directly to a slowing of the progress of the disease.

The reasons it does support a slowing of the progress is simple enough, it is attitude. Exercise lifts the moods, puts us back in our driver’s seat from which we were rudely removed by diagnosis. It gives us something to make of our new and different lives in AD World. Yes, it contributes in large part to increasing a Quality of Life that was all but destroyed in having to accept the reality of AD infecting every aspect of us.

It is the lubricant that allows us to pass through the portal of what we once were, to the gift of what we can become. Sound Crazy, no doubt, but not really. Think about it. All of our life we have chased the tail of what we should be or what we have become. Everyone does it; it is part of the human aspect of occupying this life in time and space.

We pop into a world at birth about which we know nothing. We immediately start adjusting to it, learning how to function in it, learning what we are. Acquiring a handle on that we then shift to learning all we can about this world in order to serve us in the best possible way. We are driven by some force saying “Learn this, Become that!” In this period we do, wondering what will become of it.

Then we are in those middle years and we realize we have become. That same voice that directed we “Learn this, Become that” changes its admonition. It now says “Hold on to what you have acquired, work hard to live up to what you have become.”

This completely occupies us until we hit the unique period known as our Senior Years. If we stop long enough to smell the roses we might even see the pressure is off. No longer are we called on to strive the way we had all of our lives. We can stop, slow, open our eyes and take a look at all that has happened to us. I call this the time of adding it all up.

Adding it up amounts to this: What all did I do with this time past? Was there purpose in it? Did I fulfill any purpose by doing what I did? Where does this all fit in with making this time and effort purposeful and provident.

Many can look and see wonderful accomplishment; purpose providently full of many good things done. These lucky ones can close the ledger take a sigh of “Well Done!” and await the end which most certainly comes.

Then there are those who like me are only half done. We have left some part of our living purpose falling short. In my case I have not done as much as I should or would for others. I did plenty, many good things, but, I always knew I was falling short in the arena of doing good for others. Wanting to fill this gap in my life I knew I would find what more I had to do, or, it would find me as life has always done.

It did; It did; I was told I had AD. I knew almost immediately mine was to do some good with this terrible diagnosis. I committed myself early to writing and advocating AD, using the unique spin of doing so from the inside, I found myself uniquely equipped to speak out. I found myself better equipped to do some good with it.

Five years down the pike with this diagnosis, with this unwelcome cancer like disease growing in me, I continue with the cognition necessary to read, to write and to reason what is happening to me.

This I see as evident as the nose on my face, I have been challenged in such a way that I forced to fill the void left open in me. This has been my opportunity to combat the devastation happening in me to make some good of it.

It has worked for me. For five years in the doing of this I have experienced more peace and serenity than I ever felt possible. I have a sense of fulfillment I have never had before. 36 years ago while recovering from the curse of Acute Alcoholism, finding I was ecstatically happy because of it,  I heard it told me in the AA halls that what I was experiencing was the Pink Cloud period in recovery.

That is the time when you are well enough to see the world is good and you are welcome in this good environment. When this occurred for many of us the old hands would tell us, “Sit back, ride that cloud as long as it carries you. It can carry you far.”

With AD I am now riding AA’s Pink Cloud and intend to ride it as long as I possibly can. Whatever happens in my future I can now look back and know in these last five years I have filled the void and am now complete in this life I have lived.

I hope of course that this continues, for me, for my loved ones about me. It has been time well spent. Yet, I know, for the time spent, I can now join those others of whom I spoke earlier:

Many can look and see wonderful accomplishment; purpose providently full of many good things done. These lucky ones can close the ledger take a sigh of “Well Done!” and await the end which most certainly comes.

Use It or Lose It Strikes Again

Bob DeMarco at Alzheimer’s Reading Room posted a thought provoking article to day entitle: Alzheimer's and the Wiring of My Brain Click on the title or on Archive to read it.

In this article Bob makes observations on rewiring the brain. He raises some unique insight about the way we operate and the way we can operate and the choice we have between the two. He describes himself as operating the way we can do it and not the way most do it. He raises the issue of why do people get it right and the others flounder in holding tenaciously to what they are used to?

I learned in my professional life people are different in how they deal with the challenges of life they encounter. With the encounter there are four different types: The creative ones, the managers, the technocrats and the followers. (Something like that.) I reduced it further to seeing most as drones, operating within a hive mind where “the way we do it” predominates all other styles of choice in life’s encounter. This majority group are countered by the creative ones who look for the way with the most possibility of being effective, and do it that way. They look for efficacy and not for safety.

The drones make up the last three of the above list of four. The other than the “Hive” consist of the creative ones. These are few in number, always under attack by the drones, too often defaulting out in the attack of the drones because they couldn’t care less. They leave the leadership and the power to the drones who crave it and sustain themselves with it.

The creative ones are dedicated to carrying out the next new idea and seeing what can be done with it. Unfortunately in the end it is the creative ones that succumb to the attacks of the drones the result of which the drones stay in charge and the way of the hive rules.

That rule is “Do it our way or no way” Our power is more important that any good idea that might be useful.

The creative ones are doing it the right way. But try as they might too few will listen

This raises further thought for all of us in Alzheimer’s World. When faced with diagnosis we are confronted by what we must give in to and what we must overcome and move on. It is the brain that is being damaged giving rise to what must be accepted. It is the brain, this marvelous organ which is a conduit to our mind that we can utilize to overcome so many of the limitations we are forced to accept because of the disease damage in progress.

Alzheimer’s Disease (AD) has proved to be both a curse and a catalyst for me. The curse has to do with its causing me the loss of everything, no more to lose. The catalyst has to do with the freedom and the absolute change caused by AD which both plagued me and challenged me to choose. Do I become overwhelmed by it or do I do something about it. It is the later, do something about it, which calls on the creative part of me to act. Action is the challenge I give my brain. Successfully coping with AD, doing something with it, doing something about it is my blessing evoked out of this encounter.

The brain when provoked has the wonderful capacity lying in its plasticity, its innate power to learn, to train, to overcome functions lost to damage, to find new pathways, and to generate new tissue to do what it has become incapable of doing by reason of damage.

This produces a new life for us in doing it, two lives in one if you will. In the first life I followed the rules doing what I should. I grew learning the ways of the world and my way in this world. As an adult I worked very hard at what I came to be holding on to all I had acquired.

Now as I grow old and approach the final phase of my life I have been transformed into an altogether new and different life by reason of contracting AD. No longer need I deal with the old rules of doing what I should. There is no longer any applicable “Should.” I face the challenge of making new rules if I choose to do so.

It is in this that I am gifted. I have both the willingness to seek out what is new, what is different. I am forced by my disease to do so. I am empowered by this magnificent organ that is mine to recondition it to find the best way to do all that remains available to me to cope, survive and make the best of this new life.

This is the gift for all willing to take the risk to choose it. Again, life shows us in adversity the benefits that can be obtained through living it.

Village Movement Sweeping the U.S.

You Just Wouldn’t Believe It; Just Read It!

Newt Gingrich said it, may the gods forgive me for saying anything good about him, “You are going to see a lot of things starting to happen in the care of Alzheimer’s Disease (AD).” This is what he said and he is so very right,

 “Way to go Newt!”

This article entitled Village Movement Sweeping the U.S. Read it in the Alzheimer’s Reading Room where it is posted by clicking on the title in hypertext. It describes one of the things that are happening in the care of AD at the grass roots for those of us affected by AD that is affordable and is practical in the way it is set up.

I have been advocating for at least 2 years on the need to “Do It Ourselves” because we can’t rely on anyone else to do it. The Government won’t, if it could it wouldn't, the professional support groups are concentrating all their efforts on Raising Funds to Find the Cure. No one is concerning themselves with the Economy of Care which is a dismal oversight on the part of all of us.

This article describes a movement that fits our needs like a fine tailored suit. It is grassroots; it is in touch with the people needing it; it is not another high cost high return for profit venture. It asks “What Can I Do for You?

'Penny Wise, Pound Foolish' Report Highlighting Government Funding Shortfall for Aging Research

I emailed the following inquiry to Alzheimer's Daily News in an effort to get more detailed information about the significance of the articles they were featuring  namely 'Penny Wise, Pound Foolish'  To read the article click on Alz.News or on the hypertext'd title to go there where it is posted.

My inquiry was this:‘

Having read and reviewed the comments and back up publication of the article “Alzheimer's Foundation of America Issues 'Penny Wise, Pound Foolish' Report Highlighting Government Funding Shortfall for Aging Research” can you answer the following questions I have or direct me to where I might find answers?

My Questions are these:

The article entitled ‘Penny Wise, Pound Foolish' reports the following:

And yet, out of each dollar appropriated to the National Institute of Health (NIH), only 3.6 cents goes toward supporting the work of the NIA, one of the 27 institutes and centers of the NIH and the lead institute on Alzheimer's disease research.

Can anyone detail the significance of a 3.6% share of NIH’s of its appropriation given to the NIA? It would appear the NIA shares with 27 other institutes. What do the 27 other institutes and centers of the NIH do?

The report says the NIA is the lead institute on Alzheimer's disease research. When dealing with the 3.6% share received by the NIA.

Of the 3.6% appropriation shared what percentage is given the seemingly bottomless pit of “Research to find the cure” and research on caring for those with AD and efforts to prolong their time in Early Stage when they remain relatively functional and do not incur the confiscatory cost of institutional care. How much is given to research to find Economy in Care, which, with the coming Silver Tsunami will break the economic back of the country?

Is any given to researching the probable time before the families affected, their communities and our country are bankrupted by the Silver Tsunami? Is any given to researching the probable time of “Finding the Cure?”

Which of the two will occur first? If we are bankrupted before finding the cure does that even matter anymore?

I write a blog named  My Alzheimer’s Afterthoughts  it is at http://im-mike.blogspot.com/  Your need follow but one of the two hypertexts by clicking on either to go there.

I run excerpts from Alzheimer’s News often giving you suitable credit. I am running the foregoing question today with copies of your report referenced as posted in my Archive viz: MY ALZHEIMER’S ARCHIVE OF ARTICLES AND MEMORANDA http://ic-mike.blogspot.com/

I would like to elaborate on the significance in this article. It fits squarely within a theme about which I have been writing endlessly, namely, our need to deal with the short term of prolonging functionality in the early stage as selectively seeking funds to Find the Cure which may or may not happen at some time in the future.

I am AD Afflicted, 5 years post diagnosis, and many more post contraction. I am deeply troubled by the Cost of Care for which none of us are suitably prepared.

The article entitled ‘Penny Wise, Pound Foolish' reports the following:

And yet, out of each dollar appropriated to the National Institute of Health (NIH), only 3.6 cents goes toward supporting the work of the NIA, one of the 27 institutes and centers of the NIH and the lead institute on Alzheimer's disease research.

Can anyone detail the significance of a 3.6% share of NIH’s of its appropriation given to the NIA? It would appear the NIA shares with 27 other institutes. What do the 27 other institutes and centers of the NIH do?

The report says the NIA is the lead institute on Alzheimer's disease research. When dealing with the 3.6% share received by the NIA.

Of the 3.6% appropriation shared what percentage is given the seemingly bottomless pit of “Research to find the cure” and research on caring for those with AD and efforts to prolong their time in Early Stage when they remain relatively functional and do not incur the confiscatory cost of institutional care. How much is given to research to find Economy in Care, which, with the coming Silver Tsunami will break the economic back of the country?

Is any given to researching the probable time before the families affected, their communities and our country are bankrupted by the Silver Tsunami? Is any given to researching the probable time of “Finding the Cure?”

Which of the two will occur first? If we are bankrupted before finding the cure does that even matter anymore?

The Continue Saga of Doing Nothing About It!

The article entitled  Could a healthy lifestyle protect against Alzheimer’s? written by Bob DeMarco at Alzheimer’s Reading Room is prescient of what is starting to occur suddenly in the field of concern for those affected by Alzheimer’s Disease (AD).Nice work Bob!  

To read it click on the title to go to my Archive to read it or on Alzheimer’s Reading Room to go there to read it.

Just reading this morning in Alzheimer's Daily News I found 3 interesting variations on the same theme. They were:

1.     Last Word from NIH Panel on AD Prevention 

2.     Memory Loss May Not Be the Only Sign of Early Alzheimer's 

3.     How to Square Budget Cuts, Need for Aging Research

(Click on the title of each to go to my Archive to read them)

Many of us have been taking issue with the National Institute of Health (NIH) pronouncement this past July 2010 “It is not scientifically proven that any of the things we do will prolong the process of AD.” In the first article The Alzheimer's Foundation is reported as taking issue with this, at long last!

In the second article the growing opinion based on finding:

More than one-third of people who develop early-onset Alzheimer’s disease may experience initial symptoms such as behavior, language, or vision problems rather than memory loss.

This defies the rigid classification that too many Medical, Scientific and Health Care Groups want to make of AD. There are as many kinds of AD as there are people who have it. It cannot be classified as one set of symptoms and no other. Research needs to grasp not one but many different magic pills necessary to combat it.

Until they are found, who knows whenever that will be; we are faced with a catastrophe in the making desperately needing our attention. This dilemma we face is discussed in the third article.

In this article Bob DeMarco characterizes it best saying the following:

One statistic that always catches my attention is this one -- if the onset of Alzheimer's were to be pushed back by five years the number of Alzheimer's patients would be cut in half.

The dilemma discussed in third article in Alz.News has to do with the money to pay for what is needed to deal with the crisis of AD coupled with the cut backs occurring in National Budgeting that will leave the AD effort short.

What we need to do is written clearly on the wall. Let’s hope we can heed it better than the Babylonians did in the Bible’s story of Daniel.

What’s written on the wall is this:

·       Government is not able to come in and pay the fare any better than we are, our families or our communities are. With the increase of people entering the age of risk of getting AD the cost of caring for AD will bankrupt all of us.

·       We need desperately to find methods and modalities to keep people out of the institutions and their confiscatory costs. These costs are mindboggling having no reason for being so. Their high costs are directly related to the manner in which Government has fostered the High Return, Big Box, Profit Oriented style of Institutional Infrastructure.

o   All the money goes into the formation and promotion and not enough is left to care for the people in them who in spite of that face irrationally high fees.

o   Does it tell you anything to learn that 67% of Nursing Home Institutions are privately owned for profit?

o   Where are the non-profits, the religious and social service groups that once predominated in this field?

·       We need to concentrate at the local, the grass roots level to:

o   Utilize every possible means to prolong those of us afflicted in the early stage while we remain functional and not in need of the Nursing Home.

o   We need to find ways to promote In Home Care on a less expensive more direct style so Home Care does not cost more than institutional care as it does now.

o   We need to find ways to establish Day Care, Assisted Living and Nursing Home Care so it can be provided at an affordable cost.

o   We need as a society to think less in terms of protecting the competitive edge which is now starting to eat us alive by profit takers and introduce our social action out of the need to Help One Another.

What do we do with all this?

We have to get more serious about current care needs of people affected by AD. 

It will not be done for us, it needs to be done by us. I have said this before and it is worth repeating.

We are but the Canary in the Coal Mine. When we are in trouble as we are now, the trouble will spread to the rest of you. Take heed, take action now, when we still are positioned to do so.