IT EATS YOUR HEART OUT!

It eats your heart out. You have the disease! Like a tsunami washed through leaving all that was stripped clean away, nothing left, it is all changed. Changed it is and not at all nice to have to deal with!

Resolve learned from a life of surviving adversity tells you accept it, make the best of it, overcome as much of the disruption and make things better. That in mind you seek the help of the community. You find support, you are enormously pleased!

You work with “the help.” You are dismayed. While they seem to know what they are doing they confine their actions. Only that tested and proven, only that known to be effective……

It is like drawing against a stack deck. An even harsher metaphor, it is like playing Russian Roulette with a fully loaded revolver. You are just not going to win. “Their Way or the Highway”, and while your on the highway do not distract, divert or question!

This is the view from the inside out of Alzheimer’s Disease (AD). It is frustrating to say the least.

Yesterday I posted a report from the New York Times citing some good news as contained in a new book “The Alzheimer’s Action Plan,”. Today I read the New York Times Report entitled: Years Later, No Magic Bullet Against Alzheimer’s Disease. Click on the Magic Bullet to go to the article which I have posted in the archive. Go to this Blog’s posting yesterday to see what I wrote about the book.

The Times article “No Magic Bullet” is dismaying to people like us trying to deal with the frustration of knowing we are caught in the vortex of this debilitating disease.

The article notes the Conclusion of the National Institute of Health (NIH) after their jury of experts decided, because there is insufficiently convincing evidence that any of the measures considered to prolong an AD sufferer in early stage to stay there for a while without getting worse. Because of the insufficiency, in their infinite wisdom, the leap to the decision that it DOES NOT! Because there is the absence of evidence proving these measures that proves they do not.

Unfortunately this is a step taken too far. The NIH takes a negative, namely, insufficiently convincing evidence. It is on this negative they formulate the conclusion medication and other measures, essentially taking medication, following a program where you Eat Right, Exercise Daily, and Participate in Social, Creative and Intellectually Stimulating Activity, do not work.

These measures will not prolong one in the early stage. Nothing can be done but wait the coursing of the disease. It is for this reason a conclusion cries out why diagnose it, why tell anyone the have it, why try to treat it. Give them all the soporifics they can tolerate to anaesthetize them to the loss and ultimate death that will come unremittingly.

God! What a return to the dark ages. This is unbelievably a stupid, ignorant insensitive exercise of medical and professional arrogance! A negative is held to prove a positive scientifically the net affect of which is to deny people suffering the most calamitous disease faced in the 21st century any hope, care or support.
“Put ‘Em All In ‘Da Warehouse, Heh, Where Ya Don’t Have To See ‘Dem No More!”
This is the bad news today.

It prompted me to dig up the memo I prepared noting what we proposed on the panel in which Diane and I participated before the National Alzheimer's Association and the AoA (Federal Agency on Aging) in Washington DC.

The memo is entitled Action Needed On The Alzheimer's Front. I have posted that memo on my archive and strongly recommend its being read. Click on the memo title to go there.

Take note of my ending of the menu wherein I say:

f in fact it is not scientifically proven dispositive, it is psychologically sufficient. Its efficacy is sufficiently suggestive of contributing to my prolongation in Early Stage. It enhances my Quality of Life helping me to stay in the present lane as slip into the next more debilitating lane.

My alternative life style is depression. Having it and waiting for the next shoe to drop does nothing but hurry its fall. It produces further debilitation into the more harmful stages of AD. That fall is mid-stage, late stage, institutionalization, mindlessness then death.

This kind of depression is predicated on the proposition “Why not get on with it if nothing can be done for it, get it over with for god’s sake!”

“The Alzheimer’s Action Plan,”

I ordered it Today; I ordered the book cited in the title to this blog article after I read the article in the New Old Age Column of the New York Times Today. The column entitled The Caregiver’s Bookshelf: The Beginnings of Alzheimer by Paula Span who writes the column and reports on this book in it. I have posted the article on my archive, click it to read it.

The authors:

dispute the notion that since there’s no cure for Alzheimer’s, diagnosis and treatment are pointless. “Studies suggest that people who start treatment early usually remain better off than those who start treatment months later,” they write. So they’ve mapped out strategies for seeking a diagnosis and maximizing the usefulness of a doctor’s appointment. They explain conditions that can masquerade as Alzheimer’s but aren’t. They offer very specific advice on medications, not only Alzheimer’s drugs but antidepressants and antipsychotics.

Although I have not read it the synopsis and review of it suggest it scores a point that too many in both the public and private sectors that deal with Alzheimer’s Disease either don’t accept or simply don’t see.

Programs and planning have been off the mark. From the inside out of the Early AD Experience it seems they do not see we are here, that we have needs and positive results can be garnered not only by us but by the entire community by serving those needs.

It seems this book is addressing the root cause of this oversight. Something can be done that is not being done.

The reasons are many. I believe the primary reason is the misconception that early diagnosis does little more than introduce the pain of it far earlier than necessary. It does so for the erroneous reasoning that nothing can be done for it if you have it. Better to leave the patient, parent or person not advised so they not suffer the painful consequence of the label.

The answer to this is my experience having had an early diagnosis and finding ways to treat it with the wherewithal to prolong my stay in the early stage. This has secured Quality of Life longer for me. It has benefited me, my loved ones and my community by keeping me quite functional and not in need of the costly care that comes with the later stages or the depressing malaise produced by its normal progress and complicated by the hopelessness dealing with it.

I find particular satisfaction seeing the subject matter of this book and one of the authors of it, Lisa Gwyther. Kudos for Lisa who moderated a panel of Early Stage AD members then serving as advisors to the National Alzheimer's Assoc before it jointly with the AoA (Federal Agency on Aging) in Washington DC. My wife Diane and I were on the panel. After the panel discussion which included personal testimony about what it is like and what we believe can be done about AD, Lisa (Considered the GURU of AD) stated she learned more from us in a couple of hours than she has learned about AD in her entire 30 year professional career.

It is wonderful seeing the books topics, its recommendation and certainly the feeling if we are not being heard here crying from the hinterland we are having our please validated by some the leaders in the field.

Thank you Paula, thank you Lisa.

The Quagmire Called Sound Fiscal Management In Which We Find Ourselves !

I am writing a bout this topic because I have Alzheimer’s Disease (AD). I believed as I was diagnosed I had done all the right things and all the proper safeguards were in place so my wife, family and myself individually were protected.

I spent 43 years as a successful attorney, running a substantial practice and acquiring what I believed to be sufficiency to give us a good and fulfilling retirement.

Was I ever wrong! Was I so duped by those who mentored me, informed and educated me, advised and counseled me! I believed I had successfully winnowed all the chaff from of the grain (cut through the bullshit!) Finding how wrong my beliefs were II am so angry!

Following retirement I have seen so much of our financial wherewithal dissipating over the mistakes of the last 30, 50 or 70 years.

Between our cost of living needed for what we have left, the cost of health care, our ability to pay it, the government and society’s inability to provide it, I feel doubly duped. First this disease followed by this rude real awakening.

I do not lament my diagnosis, in fact, I thank it. It forces me to take this platform of crying “Foul” you did us wrong!” I’ll have this satisfaction for having this last word in the last period of my life!”

In the humble partially informed, educated but not sophisticated economically, this 73 year old says: “Hey Right On!” Right On to the context of the article entitled Fiscal Austerity and America’s Future appearing today in the New York Times written by SIMON JOHNSON

The article is posted on my Archive. Click on the name of it to read it.

It strikes me, here in the Midwest, this Essay is asking the right questions. Not so much as answering it raises points worth the thoughtful review of the reader It brings home the complexity of what we face in the coping with and/or curing the open wound left bare by the current financial crisis.

Did we do right following the depression? Was it the war more than the social/fiscal policies of the ‘30’s that saved us economically? Whether one the other or both, was the 30+ years following the war and the policies employed good husbandry of the 20 year depression/war financial success?

Did the next 30 year period we have just been through put us closer on course to where we should be going? Or, did de-regulation, tax cuts, deficit spending and the attempts to “Starve the Beast” squander what gains we have had?

Is Capitalism sound and the singular answer? Is Socialism any more sound and the singular answer? Is there some other guiding theory or mix of them that might serve us better?

The only silver lining around the catastrophic mess we are in is it forces us to get out. Do we do it with half measures, full measures? Certainly we need to take the right measures because our only direction otherwise is falling to deeper levels of morass in this devastating quagmire.

I have posted a second article in the Archive entitled Social Security and Younger Americans. Click on it to read it.

This article discusses one of the issues before us in our coming National Discussion we might call, “So what to do now?” Obviously an issue that will arise, I find it interesting to note the result of a poll measuring attitude about a program under such heavy attack.

We depend on it. We will continue to depend on it. Our young people support it as well as all other ages. The most refreshing statement in the article is the following:

More than 80 percent said that even if they believed they could do better investing on their own, they saw their Social Security payments as contributing to “the common good.” On behalf of their parents and grandparents, I appreciate that. Among all non-retired adults in the survey, about half say they’re willing to pay higher payroll taxes now to ensure that Social Security remains available for today’s older people and for themselves when they retire, a proportion that varies little by age.

I take this thought out of the foregoing context and pose this query:

Is it possible more are asking, “What can I do to help?” as demanding the process protect what they believe to be theirs?

BRAVE OLD WORLD!

I received the nicest email this morning from a reader of this blog. I will quote her anonymously so as not to violate her privacy. At the same time I want to acknowledge it, acknowledge her kindness, say thank you and let it be known how much I appreciate this kind of comment.

Hi Mike,

I just watched the series on aging that was launched today. The interviews on dementia that you, Mimi and others did were great, but I wished that the interviewers had allotted much more time than they did to your comments. I read that they had thirteen hours or more of interviews. I hope we will be able to see more of them down the road.

I continue to receive so much benefit from your blog. You do such a marvelous job of culling the literature in print and online that is pertinent to our transformed lives, and your passion makes it all exciting. Whether I always agree with you is irrelevant. It engages my neurons and that's what counts. Keep up the good work!

Thanks for all that you do.

The series on aging is available to read and see on the net at Brave Old World click on it to go there. I am one of those who appear a number of times in that section entitled What We Know About Dementia Click on this title to go there, click there to see and listen.

I was honored to participate in the project as was my friend Mimi Steffen with whom I served on the National Board of Early Stage AD Advisors to the National AD.Org.

It is both satisfying and fulfilling to be heard and know what we have to do and to say is having its effect. This is the purpose of this blog, it is the purpose of the acceptance I made of Alzheimer’s Disease (AD) on first diagnosis.

Now four years I am finding more purpose than ever I had in the past 73 years that were filled with accomplishment. Of all of them, and some of my successes were noteworthy, some quietly wonderful, none of them as full as the help I sense doing as I am plagued by this disorienting disease.

Brave Old World was guided among others by Paula Span the writer of the New Old Age column in the New York Times, about whom I have become a fan.


August 23, 2010, 2:01 PM
How Seniors Live Now: Six Portraits
THE NEW YORK TIMES
by Paula Span


For the past few months, 10 journalism fellows at Columbia University have been delving into a subject that readers of this blog know all too well: aging in America. Among their reports, just completed, are six video portraits of seniors living in a variety of circumstances — off the grid in the backwoods of Montana, for instance, or under the care of a home health aide in New York. The videos are engaging not just because of their subjects, but also because, taken together, they show something of the diversity, and resilience, with which Americans approach the final chapters of their lives.
Watch the videos, and share your thoughts in the comments section. Find more of the fellows’ multimedia work at their Web site, Brave Old World, which makes its debut on Tuesday.

Published: August 23, 2010
New York Times


How Seniors Live Now

This summer, 10 fellows at the Columbia University Graduate School of Journalism reported on a graying nation for News21, a national initiative to promote innovation in journalism. The results included these video portraits of the many ways older Americans live, from an off-the-grid couple felling trees in rural Montana to a woman who requires assistance to leave her nursing home bed each morning. Find more of the fellows’ multimedia work at their Web site, Brave Old World, which makes its debut tomorrow, August 24.

REALITY BY INTENT

Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.
SHANTIDEVA

Accepting my disease, using it to make a commitment to help others has produced a sense of peace and serenity I never knew possible for me. It is providing a fulfillment I had not had before this.

Having it and using it in this way now makes sense of all of the events of my life leading to it. It makes sense finishing my life having this disease.

This disease allows my, by accepting it, to fill a cup I always believed half empty when it came to caring and doing for others than myself.

I don’t believe it could be said I was selfish. Deluded is a good word that would apply to me. I spent all of my time from first cognizance as a child to the time I was diagnosed with Alzheimer’s Disease (AD) doing what I believed I was supposed to be doing.

A child I did what my mom said. In school I followed the direction of my teachers. In my spiritual life I followed the formulas dictated by my priest. In my early, mid and senior years I did what my parents, my wife, family, job, community, peers, all expected of me. Everything I aspired to be or wanted to have I would mold myself to be what I believed a person who gained that needed to be.

Nothing was left undone, everything controlled. I was in charge of the agenda. My agenda was to be anything but who I was!

In the course of my years I had good times and bad. The bad seemed overwhelming and I struggled with each such event. I tried to overcome that not what I thought should be. In this I was some times successful, often not.

The worst event I faced was being overcome, completely beaten and defeated by Alcoholism 35 years ago. The acceptance of turning it over learned in AA delivered my out of this impossible abyss.

I learned much from this, applied it to my life after my recovery. It was a long uphill struggle, the bad kept happening with uncanny repetition. The only difference seemed the watershed that recovery from alcoholism meant to my life. Leading to utter defeat as alcohol took me over, each step of the way was down. Following recovery each step of the way was up. Things did get better each year for the 35 of them sober; after 38 years of going downhill into becoming an abject drunk.

Throughout these years after recovery, although far better than before, I still felt something missing. I did all that I was supposed to do but none of it filled me with complete satisfaction. Everything, the whole lot of it, came up short.

I knew what it was too. I had not done enough for others. I did for my own what they said I ought to do; nonetheless I did not freely give to others sufficiently.

I knew something would happen forcing the issue of getting it done. I had tried various activities to do good, none of them came to full fruition through no fault of my efforts. When AD struck me down, I knew my mission had arrived.

It was simple enough, take this curse, turn it over, accept it as I did Alcoholism and build on the broken shell left afterwards. I have done that living my AD fully. I read, I write about it, above all I share and advocate in an effort and with the hope by doing so I might help someone.

My disease is terrible. There are so many limitations I experience, but much memory and more cognition remain intact, decreasing ever so slowly. This allows me to join issue with this disease and communicate to others what it is like to have it, what is needed to help with the disease, and let folks know the earlier the diagnosis allows us with AD to attack it and prolong the quality time we yet have left.

RECKONING GROUND

Before official diagnosis a knowing sensitive Doctor (mine) told me not to drive. I thought both he and my wife out of their bloody minds.

I took a simulated driving exam at the hospital. I was going to prove them wrong. I flunked miserably the three tries I made of it.

This brought me to the reckoning ground. Accept it or scream 'til you are silly.

What followed was more docs and finally diagnosis. When it all was over I felt I had lost everything, and I was dead right.

Wonderful thing about that is this:

When you have lost everything you have nothing more to lose. On MY reckoning ground this was the most freeing realization of my entire 69 years. I no longer had to be whatever I thought I was supposed to be. I was only who I am with nothing to lose.

I have been building on this ever since. Having had a life of too much travail AD was the final straw. "Why me?" I asked.

Answer was simple as I have experienced it consistently this past four years. There is far more peace and serenity in accepting where you are and the challenges before you. Accept and help others, that is now my key.

Problem with this facility is that they are sky high in costs

Reported today on a bulletin board the thread of which was entitled:I visited an assisted living place today My response posted on the thread is consistent with by blog-post yesterday:

“Problem with this facility is that they are sky high in costs.”

4,000 x 12 = 48,000 annual.
48,000 x 10 = 480,000 ten year survival

7,000 x 12 = 84,000 annual
84,000 x 10 = 840,000 ten year survival

Let’s average this out? Average between 560,000

Family savings, both spouses at risk for private pay of nursing home/assisted living costs

$1,000,000
- 560,000
= 440,000 Left for second year.

If it isn’t spent for the following:

Home Budget to which spouse continues obligated to pay:
• Medical Dental and Drug Expense
(Health and Extend Care Insurance Premiums, co-pays, deductibles, non-covered, out of system costs, Drugs, gaps, co-pays, non-covered, Dental Expense, Supplementary health care and assistance in the home.etc)
• Rent, Home Ownership cost:
(RE Tax, Maintenance, Dues, Assessments, Insurance, Utilities, etc, Mortgage payment)
• Travel: Cost of car and/or other travel expense
(Insurance, garaging. maintenance, insurance, gas, obsolescence and/or lease or mortgage payment)
• Income Taxes. (Social Security payments included)
• Groceries, Clothes, normal recurring living expense

Anything left for a movie or for groceries to have the kids over?

Calculate it all it speaks for itself!

The concern and talk in this regard? I reported a little of it on my Blog yesterday.

See:

Alzheimer's Caregiving and Medicaid
Cost of Care and Medicare/Medicaid, a Conundrum

Cost of Care and Medicare/Medicaid, a Conundrum

An article entitled Alzheimer's Caregiving and Medicaid appeared in Alzheimer’s Reading Room that merits your read. Click on it to read it on my archive where I have posted it.

It covers in breadth the foundation for understanding the dilemma of Government Involvement in Health Care and People Care in the U.S. Historically it has been acceptable in our society to help in the face of critical need but not for any other reason. We adhere time and again to the application or the principle “The least government is the best government.”

Only those times there is an economic benefit accruing silently to a political benefactor is there any cause from deviating from the rule. Everything is ok is we remain relentlessly rigid allowing nothing more than the fittest to survive.

When facing Critical Need the problem is this: Who pays for the cost of alleviating the need?

Should we pay, should government pay or someone else pay for our care when we face the catastrophic costs of having Alzheimer’s Disease AD or some similar condition jeopardizing the integrity and the tranquility of our lives? The question is simple enough on its face. It is complicated in its application.

Historically government was not the financer of health care people care or any of its vasiations. We do not want “Socialism or Socialized Medicine!” We have said that until we are gray in the face and slack in our otherwise gritted jaw.

This is but a part of our many redundant “We Do Not’s:”

• We do not want government designing and dictating our care
• We do not want government taking control of such a large network in our economy that Health Care comprises. This was evident in the strong opposition to single pay system proposed as part of Health Care Reform.
• We do not want to have to be dependent on Social Security for retirement.
• We do not want more taxes.
• We do not want government intruding in our lives any more than it does.
• We do not want to be sick and certainly are not right now.

So, our answer is “No, not right now!”

However:

We do not want to suffer, go without cared for, and be abandoned when we can no longer care for ourselves.

Families are First Stops! Good if they can do it. Not when they cannot afford to, are too far or without room, or ability to provide care.

Charitable and religious care groups: Good if they can, if they do it competently, if the have enough funds from their normal revenue sources to do it, and fulfill their other needs that demand funding.

Private Pay: Great if there is money with which to do it. If the doing of it doesn’t bankrupt the individual’s spouse, family or other source for paying it. It is no good to pay for one and put the other out in the street.

Paradoxical Impeders:

Cost: Made prohibitively high in large part by Governments willingness to involve itself piecemeal in funding projects that help. Too often the ones that can help are the ones that are prey of entrepreneurs seeking profits over providing care.

Regulation: Government’s foot print favors those who lobby massage the process to encourage largeness, uniformity of care modalities and expense of individual care which can be done with less overhead and greater overall profit.

The Rock and the Hard Place: This is where too many of us are. We have too much to qualify for aid, too little to pay the cost and leave enough for the surviving spouse to live. You pay for one put the other in the street and hope for benefits.

This list could go on. From a rational moderate/conservative point of view the historical reasoning is sound and favors continuance of this attitude and its policies, if it had any chance of working. With the many injustices that are the product of avarice bilking the system for the benefit of those same voices that spout the “Don’ts” there is no cause to continue it. The programs are supported by the subterfuge of sound policy which undercover is ravaged by greed.

Finding a more kindly way that doesn’t suck the system dry in the same way would be good cause to continue our history and build on it.

The purity of capitalism having now been legislated into a Rite of Exploitation by the Favored Few we need to look for other ways to formulate our economy. We need to find a way somewhere between the Sacred Right and the Chaotic Left. One where we can ask: “Is there anything I can do to help?” and be able to follow through.

It Takes A Village, A Person, And A Lot Of Heart!

Consistent with an oft recurring theme in my blog, another article captured my attention. In the New York Time New Old Age Column an endearing article entitled “The Caregiver Nest Door” was posted on 8/10/10.

Her first overture to my dad was, “Do you eat soup?” After years at the deli, Jo Ann cooks in quantity, vast pots of vegetable and potato and cream of broccoli soup in winter, piles of macaroni and potato salads in summer. She began leaving plastic containers of food at Dad’s door; now, she leaves them at eight or nine doors.
Appearing in this article Jo Ann the “Care Giver” is a resident in a complex consisting of many 80 year olds. Accustomed to cooking in quantity, retired, with more time on her hands she directed her energy time and attention to caring for her neighbors.

“I am not my neighbor’s keeper!” the variation of an aphorism quoting Cain’s responding to the whereabouts of his brother Abel.

We are part of a society and a many century culture of survivalists. Only the fit survive. Competing with one another for your own advantage is the singular way for both the Individual and the Group to make it happen. If all compete with each other they balance out a single person gaining advantage over another. The group acting together sees to this.

A person’s selfish desire is always opposed by the self interest of another keeping both competitors in check.

This bias imposed on us by our acculturation makes it hard for us to do for one another. We are not naturally given to asking another “Can I help?” Doing so and then depended on for this could impinge one’s freedom and blocking his sacredly endowed self interest.

It is for this reason alone Jo Ann’s commitment is refreshing. It does go deeper for us on the receiving end of this kindness. They will ultimately find themselves in the same position as us. By helping they are laying in the pattern that will serve them in the end.

We have needs we can no longer fulfill ourselves. We become vulnerable needing the help of others. Often we get that help, many times we do not. Without it we go without!

In so many different ways our society is not positioned to help the growing number becoming dependent on it. Alzheimer’s Disease (AD) is exponentially enlarging this need. There are neither funds nor government programs sufficient to satisfy the need. Religious and altruistic groups are not able to do all of it, there is just too much to be done.

Making it worse is all of the classes of parasites profiting from the programs as they are being publicly funded making both the cost and the sufficiency of what does exist. They are too entrenched and in control of the political process to provide any give for fulfilling their purpose of doing good, beyond the good of their profit taking.

It is this that makes Jo Ann’s commitment double, triple, quadrupally, wonderful. It is also sorely needed if we are to survive our dotage with any grace or comfort.

It is at the grass roots from which we must act in our own interests. We must do it for all of us in of us now in need; we must do it for all the others who will live to that age where they become our age and thereby acquire our same needs. If we don’t undertake it we will not see it done.

Currently services are spare for my generation but not impossible. As the cost continues to rise and the public support is stretched or made more stringent, and the numbers increase, it will become far worse if not catastrophic.

To be prepared we must be ready which means we start now. We need to try out new methods of providing care on cooperative and local levels that both gives the needed care, the empathy that needs to accompany it, at the lowest possible level of cost where we can afford it. We need to winnow that which doesn’t work form that which does.

We need to concentrate on providing measures and means to enhance Quality of Life, Economy in Care, and programs designed to keep folks in their homes with adequate care until they must be placed in homes for care.

The programs need also to provide Early Diagnosis, Medication and emphasis on the Best Practices, namely, “Eat Right, Exercise Daily, Become Involved in Stimulating Intellectual, Social and Creative Activity.”

NEWS: The Giant Mediator Of What We Think About Alzheimer’s Disease

This mornings New York Times posted an Editorial entitled: “Early Detection of Alzheimer’s” Read it by clicking on the hypertext’d title.

This announces as new news something that is not entirely new, a test performed by lab analysis of spinal fluid to see if it contains deposits consistent with people who have Alzheimer’s Disease (AD).

This information has been around and known for some time, it is not necessarily new other than a new research paper it reports. This test like other tests such as MRI, CT Scan and others is indicative but not determinative of the existence of the disease in the person whose spinal fluid is analyzed not does it rule AD out. It is a good indication yea or nay.

The only difference bringing it to the newspapers is it caught the Media’s attention.

On matters I advocate about AD I sometimes have a sense of defeat. I try to raise reasoned arguments about the needs of those of us who suffer this disease (AD). I would like to believe I am being heard.

The message I often advocate is called “Best Practices,” viz: Eat Right, Exercise Daily get involved in Stimulating Intellectual, Creative and Social Activities. Put together they are reflected in the following formula: Best Practices = Prolonged Early Stage AD = Enhanced Quality of Life for all of us affected and Economy of Care, namely, Savings for the Community, (BP = PES = [EQF + ECSC].) It is an easy formula to understand easier to implement with a bounty of good results.

The Suits and the Lab coats however say no. This is not so. They say it isn’t proven. Therefore it isn’t. Best Practices do not prolong a person’s stay in Early Stage AD we hear often repeated by the Experts because there is not sufficient data to absolutely prove it.

This is the application of ludicrous science.

Following the scientific reasoning of the Cabal of Suits, Lab Coats and Professional Support types, we wouldn’t have AD. It has not been proven to exist either! Therefore it does not exist. Somehow it is these voices that live off the existence of AD however unproven as it may be. If the experts applied the same rule they do in Nay Saying Best Practices do not work, there would be no reason for their existence. Somehow different criteria are used.

Hey Already!!!!

Although this is not NewNews, nor something to hang your hat on, it is helpful as I see it.

Good will come from this recent Dead Days of August News Grab.

In Spite of Katie Couric’s erroneous statement on CBS News making the same announcement a few days ago, saying “Even though we can identify and diagnose AD earlier by way of spinal taps, this will not lead to anything because there is nothing that can be done for the disease.”

A group in MN, with my signature as and AD Patient, is sending a letter to CBS but contesting the error of Katie’s.

We do not have sufficient data that goes beyond theory and hypothesis that Best Practices will prolong Early Stage AD which we firmly believe to be true.

We nonetheless know the following.

• There is a multitude of individual accounts, including mine, that say it does.

• The enrichment of the quality of life for those of us affected alone can prolong our stay in Early Stage. We do not sit in seclusion waiting for the mid stage shoe to fall, we our out and about enjoying that it is no worse than it is in early stage.

• The earlier AD is diagnosed the better the opportunity for current medication to do some good.

This is a short short list of what I believe can come from all of the waves Media’s Attention on Spinal Taps is bringing, even though it offers nothing new, nor is it determinative.

It is in the by-product of national discussion of the benefit of Early Diagnosis that will come of it. We need more discussion and then action on the nitty gritty of prolonging the Early Stage of AD.

"The Home"

This is so difficult, often so needed and is the ultimate reality of our disease: "The Home." That is our final transitional point as this disease robs us of our mind then our body before it kills us. Hey: Pleasant thought this?

It can be a somewhat better experience if looked at in different light.I was moved by the insight of Kerry Runyeon in an article she did in Alzheimer’s Reading Room entitled “Many Faces of Lily.” Read it on my Archive by clicking on Hypertext’d Title.

The Institutionalized, Homogenized, Over Structured and Over Populated "Home" is a pain in the butt. The homes that are designed to help as opposed to those that provide warehousing, coupling them with a hopeful attitude from the loved ones instilled on the afflicted ones can help immeasurably in this final step. Help from the community, volunteers, to spread some joy is the frosting on what can be a cake.

I have advocated for constructive help for Early Stage on the need of it with the pretext of the savings to community because it will prolong our stay in Early Stage. My second platform in advocation has been finding Economy of Care when it is time to be institutionalized, namely, consigned to “The Home.”

So much of Home Care, Assisted Living and Nursing Home Care, is prohibitively overpriced taking it out of the range of what most of us can pay unless we qualify for Medicaid. We of course will earn our qualification by paying ourselves when our funds run out which the will at current costs. Unfortunately this leaves our spouse out in the street.

Does this cost need to be so high? Does regulation, one of the contributing factors, be such as to force homes and business groups into large operations to secure enough cash flow to produce profit? Does the regulatory design produce infrastructure that attracts the profiteers who draw off their profit in the building and organizing facilities without the enough left to adequately operate them?

This seems to be the case as I see it. But I could be wrong. My reason for suspicion is the experience of uncontrolled escalation of cost of necessary service since business corporations seem to have become the ruling oligarchy of our Government.

The proof of this pudding is seen in the Financial Crises from which we are still reeling in its second year.

Lamenting the foregoing does nothing for the task of making the reality of “going in” any easier. Attitude is an ingredient that can go further than most elements mixed into the recipe for tolerable nursing home experience. This kind of attitude is well expressed by Kerry Runyeon

More Grass Roots Help for Early Stage

It is wonderful to see the kind of an undertaking to help those of us with Alzheimer’s Disease (AD) which is described in the article entitled: Trying Improv as Therapy for Those With Memory Loss. Read it in my Archive by clicking on the hypertext’d title.

The program Improvisation Therapy is described as follows:

The Memory Ensemble takes that template a step further with theatrical improvisation, a method that treats all words as useful and welcomes the expression of feelings that emerge on the twisting path of memory loss — terror, frustration, even joy.

These kinds of programs do so much for us. The advantage of early diagnosis of AD is finding us in the Early Stage of it when we still are able to function both physically and cognitively quite nicely. The Mantra often heard and repeated among us is “Eat Right, Exercise Daily, and Get Involved in Stimulating Intellectual, Social and Creative Activity.”

Following the Mantra produces two very important by-products. It does prolong our stay in Early Stage which enhances our quality of life immeasurably. This beats hell out of having to be institutionalized.

The other by-product is cost. We don’t cost our families, communities or government the prohibitive cost of institutional care.

Three cheers for this kind of grass roots innovation designed to help. We see a lot of programs for finding the cure, far too few programs for helping those of us already with it.

It Is Ours To Do, At The Grass Root Level As Allow Being Left To Wither Away On The AD Vine!!!

I am posting a repeat on my Archive that merits re-reading. “What are the Symptoms of Alzheimer's Disease?” Click on the title to go to the Archive to read it.

It offers nothing knew. It reminds me as I read it how my disease manifests itself in so many different ways validating the comment: There are as many kinds of Alzheimer’s Disease (AD) as those with it.

It happens for no known reason. It has defied cure. It robs us inexorably, in super-slow motion, of our minds, our bodies and our lives. It is unforgiving in its relentless unconditional certainty. The only variance that seems possible is the ability to prolong the Early Stage of the disease and thereby enhance the quality of life left to us before it consumes us.

That is in our hands, something we are able to do, and I can state in my case it certainly seems to be working. I retain my cognition, my ability think, to read, to write, to do art work and advocate of those of us with AD.

If I must have this disease I thank my higher power for the gift of having it this way. My body is breaking down with physical infirmities scheduled for later stages than currently occupy my creative and cognitive mind. It is the latter that I hope last me the longest.

I recently posted on a bulletin board I follow a variation of what I posted on this blog entitled: One Doctor's Efforts to Prevent Alzheimer's The post in the bulletin board: “Message Boards Forum Index Have Alzheimer's or Other Related Dementia Critical Need: More Treatment for those with AD” states as follows:

One Doctor's Efforts to Prevent Alzheimer's

The article entitled One Doctor's Efforts to Prevent Alzheimer's speaks loudly for a need not being met. Read it by clicking on the hypertext’d tile where I have posted it in my archive. I have also posted a review of the author’s book which might be interesting to need

What is the need? The plight of those of us with Alzheimer's Disease (AD) particularly those of us in the Early Stage whose quality of life could be enhanced which in turn would produce a huge savings for the community.

So much is concentrated on raising money for the cure so little for treating those already with that which is sought to be cured.

This article speaks of one of far too few who would redirect the effort in the field of AD and address a real problem lost in the dust by the "Race for the Cure"

This article was reported on the Tangled Neuron recently. Nice reporting Mona Johnson at Tangled Neuron, nice work Ken Kosik. You are on the money

One Doctor's Efforts to Prevent Alzheimer's

Summary: In the absence of a near-term cure for Alzheimer’s, Dr. Ken Kosik believes we should focus on lifestyle changes and managing chronic disease to try to prevent or slow cognitive decline. He thinks “neighborhood cognitive shops” can provide one-stop shopping for the medical and non-medical services people need to support these healthy behaviors. His center for Cognitive Fitness and Innovative Therapies (CFIT) in California is the first such shop.

He is also in the early stages of developing related online services. His experiments with community-based efforts for dementia prevention may help answer broader questions about the future of healthcare.

Read it in my MY ALZHEIMER’S ARCHIVE OF ARTICLES AND MEMORANDA Blog Archive

To the response received so far I posted the following this morning:

It saddens me to hear "I can't" to a post I initially made about the need to:
The plight of those of us with Alzheimer's Disease (AD) particularly those of us in the Early Stage whose quality of life could be enhanced which in turn would produce a huge savings for the community

Mimi's response:
Most people that I talk with have excuses why the 'best practices' aren't for them

Let's not get caught up in what we are doing or can't do with regard to the best practice. They are recommendations for a practice with proven results. If you are not interested in these results by all means do not practice the practices.

Mimi and I have been preaching the best practices for more that a year if not two years. They work, they do not depend on anyone to do for us but ourselves, they are free.

There is so much we and the community can do nonetheless, for us and all of those affected by this retched disease.

That is initiate programs at a grass roots level of such things as:
quote:
1. First Stop Programs: For people newly diagnosed to explain and offer help in coping.
2. Support Groups: Tiered to stage of AD, monitored by the group, a professional if available, but structured in reliance on a core group of supportive, enthusiastic, like minded AD patients.
3. Volunteer Coordination: Organized effort by some capable social service agency to find volunteer positions and place AD folks in them
4. Structured Wage Earning Workgroups: Organized effort by some capable social service agency to find salaried positions and place AD folks in them
5. Creative Programs: intellectual, creative and socially stimulating programs to the AD affected.

The foregoing are mine. They are currently being considered by Jewish Children & Family's Service after our local Alz.Ass'n thought them great ideas but went no further than that lip service.

We can't depend on Alz.Orgs or Government; we need to start this on our level.

This remains in our hands. If we have it, AD, it is ours to do for us. No one else can. We can start somewhere in the arena of what I propose to my AD Bulletin Board Members.

One Doctor's Efforts to Prevent Alzheimer's

The article entitled One Doctor's Efforts to Prevent Alzheimer's speaks loudly for a need not being met. Read it by clicking on the hypertext’d tile where I have posted it in my archive. I have also posted a review of the author’s book which might be interesting to need

What is the need? The plight of those of us with Alzheimer's Disease (AD) particularly those of us in the Early Stage whose quality of life could be enhanced which in turn would produce a huge savings for the community.

So much is concentrated on raising money for the cure so little for treating those already with that which is sought to be cured.

This article speaks of one of far too few who would redirect the effort in the field of AD and address a real problem lost in the dust by the "Race for the Cure"

This article was reported on the Tangled Neuron recently. Nice reporting Mona Johnson at Tangled Neuron, nice work Ken Kosik. You are on the money

One Doctor's Efforts to Prevent Alzheimer's

Summary: In the absence of a near-term cure for Alzheimer’s, Dr. Ken Kosik believes we should focus on lifestyle changes and managing chronic disease to try to prevent or slow cognitive decline. He thinks “neighborhood cognitive shops” can provide one-stop shopping for the medical and non-medical services people need to support these healthy behaviors. His center for Cognitive Fitness and Innovative Therapies (CFIT) in California is the first such shop.

He is also in the early stages of developing related online services. His experiments with community-based efforts for dementia prevention may help answer broader questions about the future of healthcare.

One Doctor's Efforts to Prevent Alzheimer's Kenneth Kosik, MD

A Blessing Made Real!

A blessing made real, applied where sorely needed, capable of reaping benefit for all of us. What is it? It is described in the article entitled Helping Seniors Stay at Home. (Click on title to read in it in my Archive.)

It appeared in the Minneapolis Star August 1. It tells of grass root organizing, volunteer contribution, directed towards keeping seniors in their homes and out of institutions. It includes discussion of the corollary benefit of the savings accrued from in home care over institutional cost, and the quality of life enhanced for those receiving it.

Finding a cure sometime in the future, although a necessary undertaking, does nothing for dealing with the emergency that we now have before us. For those who need help and are unable to get it because of cost, people able to provide it, numerous other reasons, they present the problem. They are the cannon fodder for escalating the cost because they have little recourse but to be institutionalized.

It makes me proud of my Minnesota. This is ground work needed throughout our country. You have heard repeatedly on this blog: We need to address the issue of care before the numbers and costs take it off the table and throw us into unremitting chaos.

We see so much done in support of Alzheimer’s Disease (AD), so much of it directed to funding, enacting legislation, all in effort to find the cure. In turn so little is directed to finding efficient and economical care. Currently, care in our country is substandard and ineffectually expensive!

The care is needed and must be given. It is too big an order for a grid locked political system. It leaves it to social, church and charitable undertakings. The movement growing in Minnesota speaks to this.

This was eloquently underscored by Arthur Kleinman in an article quoting him appearing in Alzheimer’s Reading Room, a copy of which is posted in my Archive and can be read by clicking Arthur Kleinman on Alzheimer's Caregiving

…Caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge.

Caregiving is about skilled nursing, competent social work, rehabilitation efforts of physical and occupational therapists, and the hard physical work of home healthcare aides.

Yet, for all the efforts of the helping professions, caregiving is for the most part the preserve of families and intimate friends, and of the afflicted person herself or himself.

We struggle with family and close friends to undertake the material acts that sustain us, find practical assistance with the activities of daily living, financial aid, legal and religious advice, emotional support, meaning-making and remaking, and moral solidarity.

About these caregiving activities, we know surprisingly little, other than that they come to define the quality of living for millions of sufferers