My Alzheimer's Afterthoughts!

Virtual Support Groups on the Net!

2012-02-01T17:24:00.001-06:00

Bob DeMarco posted an interesting article on Alzheimer’sReading Room (ARR) on 1-29-12 entitled: Alzheimer'sSupport Groups and Google Hangout which you can find by clicking on thetitle to find it on ARR or clicking on Archive to go there to read it.

What he describes is a new feature of Google+ that providesan interactive service for visual chat over the Net. It is simple enough, involvesinstallation of no software; it is just a matter of joining then organizing your own group for discussion.

This can be attractive for Dementia affected folks, namely,those afflicted who spend most of their time at home with little or nothing todo, or, their Caretakers who have so much to do that loneliness intrudes forlack of the time to maintain social contact. Both groups have so many commonproblems needing discussion that it would be a wonderful avenue for having a virtualsupport group where a real one is impossible. For the Caretaker it would bemore than helpful.

For those like me with Dementia it would be an invaluabletool for obtaining the socialization, intellectual and creative stimulationthat is so vitally important but often not available to us because of thelimitations imposed by our disease.

DeMarco in his article asks these questions:

1. Would you beinterested in participating in an Alzheimer's support group online using GoogleHangout?

2. Would you beinterested in moderating a Google Hangout for Alzheimer's Caregivers?

3. Do you think this is agood idea?

4. Should I considerstarting a program that would help readers of the Alzheimer's Reading Room tostart Hangouts?

5. Do you think nursinghomes and memory care units should be offering Google Hangouts so thatin-patients can talk to one or more of their family members on a scheduledbasis?

My answer is a resounding yes to all of the questions. Ihave already gone on and registered a site for a hangout. My difficulty isdeciding who I want to invite to be members.

People with dementia I have found have a very hard timeopening up without a moderator to guide and encourage conversation. I have beeninvolved with support groups since joining AA 37 years ago. At these meetingsit is difficult to get folks to shot up and pass the conversation on.

When I tried support groups with AD (Alzheimer’s Disease) Iwas floored by the reticence of so many. It could be attributed to the level ofdeterioration of each person but I do not think it is. Too many of my peers inthe early stage just do not have whatever it is that eases discussing theirdisease.

So as I look for folks to join. I will be looking for folkswith an interest in sharing their experience of the disease and talking aboutit. I have dealt with a number of bulletin boards concerned with people whohave dementia and these have been good for sharing. But the depth reached witha group can be difficult. Too often they howl if your responses are more than amini paragraph. It seems all of the bulletin boards I have participated in havethis impatience.

I could accept the concern producing the objection isbecause of what I have to say or that I am just objectionable in the way I sayit, but I see others getting the same treatment if they go to any length intrying to say something. The reason for howling too often occurs because theothers say they cannot give it their attention over the time it takes to readit. To remedy this I have cut my contributions to segments and posted them seriallyand separately. This acceptance when I do this is better than suggesting theysimply not read it if it is too long.

I would expect with a group virtually coming together for aset time on a set day or days of the week perhaps greater sharing and depthmight become possible. A good support group offers this.

Whether such a group should be limited to those afflicted, atthe same level, anyone affected or just caretakers is another question seekingresolution.

I do intend to dive into this with the hope we can fashionsomething that works. I hope Bob takes the lead in teaching us how.

This all being said I ask these additional questions: Whatframework should such a virtual support group have? What kind or level shouldthe people of the group be comprised? Should it be stage of the disease, or,mix of caretakers and afflicted, or some other criteria?

NAPA and the National Plan—Is Your Input Getting Through?

2012-01-31T12:21:00.001-06:00

(A very interesting article was posted today on Alz Research Forum entitled NAPA and the National Plan—Is Your Input Getting Through? for which comment was asked. The following is my comment. The article can be seen by clicking it's title or clicking ARCHIVE to go there where I have posted it)

Although I am not involved in research trying to find a cure,I am but a retired lawyer with 6 years’ experience fielding the debilitatingeffects of Alzheimer’s Disease (AD), I have chosen to not respond to any of therequest for feed-back about NAPA.

I have not because I am but one in a mass whose concern issecondary to the important ones reporting in on NAPA, just as this articlesuggests. As I read it LEAD appears to be a clearing house for all researchideas coming in from the many different sources professionally involved withAD. It is one tier on top of many tiers refining and organizing the impact ofall of its subordinates.

I sometimes feel the professionals and the other veryimportant spokesman have absconded with our disease and we are all lost in thebackwash.

My concern about AD and all of the Dementias is this. I haveit, I don’t want it, but I have learned to live with it. My disease isclassified as atypical AD ‘cuz I still have lots of cognition, memory, I canread, analyze and write about my experience with this disease and have beendoing so for some years on my Blog: My Alzheimer’s Afterthoughts @ im-mike.blogspot.com. You might call mybackground “Empirical.” I do believe I have something to say!

What I have to say is this:

Research to find the cure is important, vitally important tothose who follow us onto this terrible disease’s path. Altruistically researchand finding the cure is important to us too! But on the same plane there areother matters of equal concern to those of us with AD or the other Dementias.

Dr. Rudolph Tanzi Professor of Neurology at Harvard University has been recently quoted assaying:

“By 2015 to 2020,somewhere in there, there's a tipping point where our healthcare system willcollapse under Alzheimer's alone.” (Are We Near a TippingPoint in Alzheimer's Disease Research? Alzheimer’s Reading Roomhttp://www.alzheimersreadingroom.com/2012/01/are-we-near-tipping-point-in-alzheimers.html)

We need help and help can help us, but little help is givenus to help us cope with the disease and prolong ourselves in the early stageswhile we remain functional and not an economic drain on our families, communityand Nation. This drain will break the economy of the nation before thelikelihood of finding any cure at which time the funds to do the furtherresearch will dry up short of finding the cure. This is the “Catch 22” ofconcentrating on Raising Funds to Find the Cure by Research and doing nothingelse!

Time and effort is needed to institute Programs to ProlongEarly Stage. This together with doing research to find a cure are spokes oneand two of the wheel to overcome AD & Dementia.

The third spoke is doing something about the runaway cost ofcare whether it be Home Care, Day Care, Assisted Living Care or Nursing HomeCare. We need to find Economy in Care before that too becomes “Catch 22” of theplight faced by all of us Afflicted by, Affected by or eventually to becomeImpacted by this disease.

Right now the issues concerning NAPA are at war with eachother as to priority of importance.

We need to see the professional cut the crap of infightingand trying to control the process for their own needs and come down to agreater altruistic framework!

Richard Taylor’s Way of Spending the Rest of His Life, Actually Spending the Rest of his Half Life!

2012-01-23T17:42:00.000-06:00

Whatis each of us going to do about out this? What are some of us going to do aboutthis? What should all of us do about this?

…

Icommit to spend the remainder of my public life pointing out the fallacies,half-truths, myths, and stigmas these folks are creating and reinforcing out ofone side of their mouths, while out of the other side comes their promise toundo what they persist in creating. Of course they can still suck through astraw in the middle of their mouths your support, donations, and prayers. Andthey can occasionally burp out a false hope or two every so often.

…
If we continue to buy the lie that Alzheimer’s Disease is sole cause ofthe public health crisis we are doomingmore than another generation to feel “left out” of the dementia discussion, of the dementia research, ofthe dementia support (such as it is) provided by organizations and governments.
…

If we continue to but the hoaxes, half-truthsand myths promoted by organizations and researchers that all that is need is 13more years, lots and lots more money spent quicker, and a committee or two towatch over the assured progress we are dooming the rest of the dementiacommunity (those with a diagnosis of probably Alzheimer’s) to a life muchemptier of quality, meaning, and joy while we wait for the clouds to part andthe cure pill to come tumbling down on January 1, 2025.

…

Let us stop watching this happen. There is noplan, there is no science, and there is no growing consensus outside of arelatively small group of researchers, to find a cure on or near January 1,2025.

Let us stand up and speak out.These emperors of Alzheimer’s are not the leaders who will address the dementiapublic health crisis.

So says Author, Psychologist, and person afflicted withDementia, probably of the Alzheimer’s Kind, in the article featured this week inthe Alzheimer’s Reading Room entitled: LifeCan Be Awful. Now It Has Gotten Worse! Richard Taylor

The foregoing indentedentries are taken from the article all of which I found “Epic” in their impact!The above quotes centers on the message and quality of the entire message whichI recommend for your reading.

That together with the Article entitled: Alzheimer'sin the Year 2025, or I Can't Believe Its Yogurt written by Bob DeMarco, who writes and manages the Blog Alzheimer’sReading Room speaks a message all of us need to hear.

Click on either title to go to the Reading Roadto read it.

One other article tackled me in my morningreading in the Huffington Post, a repeat of which article I recommend toBob and/or Richard for comment. That Article is entitled: MindingOur Second-Favorite Organ. It also can be accessed by clicking on its title.

All Three of these articles concern the draft of the documentreferred to as: “DRAFT FRAMEWORK FOR THE NATIONAL PLAN TO ADDRESSALZHEIMER’S DISEASE.” Richard explains it like this.

They have undertaken to:

Write a plan to plan to write a plan (now towrite a draft of a plan to plan to write a plan) of how the Federal Governmentshould lead/fund/Create the efforts of a few to “create a world withoutAlzheimer’s on or just before or after January 1, 2025."

Its undertaking is Bold,it will be interesting to see what will unfold.

DeMarco in sum says:

At the end of the day, it is going to be upto us to do somethingabout this. I'll write more about that at another time.

In support of the above DeMarco says:

I havea first important question. Where is the money coming from to finance thisambitious plan?

It is notunusual for a family to go broke while caring for a person living withAlzheimer's. This usually means Medicaid. Where is the money coming from tofund Medicaid for Alzheimer's patients? Correct me if I am wrong. Aren't we inthe process of cutting funding for Medicare and Medicaid?

Does the committeeknow how many spouses exhaust all their savings, sell or lose their home, andend up "dead stone broke" themselves while caring for a person livingwith Alzheimer's?

Are we expecting them togo homeless and live under a bridge or in a tent city? Any actual plan toaddress this issue?

We need a real plan to keeppersons living with Alzheimer's at home without bankrupting their spouses orfamilies. Should we wait until 2025 to do this?

How did the committee arriveat the target date 2025 to "Prevent and Effectively TreatAlzheimer’s Disease"? Ouija board? Dart board? Where is the moneycoming from? If we can do it by 2025, what would it take to do it by 2020?

He talks of the cost of the open hole that is raising fundsto find a cure. He asks a simple question, after it breaks the families thenthe country do we wait the 13 more years to find a solution that has defiedresearch to date, namely, finding the cure?

These are important concerns and it will be those of usaffected and those of us afflicted to do something about it because thedrafting committee seems to be doing the same old bait and switch, namely, sayone thing then moving in support of another.

The third article to which I refer, viz., MindingOur Second-Favorite Organ recommends:

But the evidence is strong,if not incontrovertible, that whatever the genetic underpinnings, theepigenetics of Alzheimer's -- the exposures that influence how genes behave --are of profound importance. By and large, Alzheimer's is a vascular disease. Byand large, the practices that prevent cardiovascular disease -- eating well,being active, avoiding tobacco -- slash the risk of Alzheimer's. (Click on the title to go to Huffington Post toread it.) (All three articles are also posted in my archive.Click on Archiveto go to the three of them to read and review. I have also posted the “Draft.” Itis the fourth post on my Archive.)

The article states what so many of us have said,following the leadership of people like DeMarco and Taylor, that the concern wemust have as a nation is the affect it is having now. Being prepared for thefuture, whether it is 2025, 2020 or even 2035, is important if not vital, thereis no excuse for overlooking the acute suffering that is occurring now withpeople with dementia.

No secret agendas, no bias, no “my way not your way”consideration belongs in the mix.

I am afflicted with Dementia of the atypical Alzheimer’skind. The disease is mine, the pain it causes belongs to my family and friendsas well as me, it does not belong to the “My Way” bunch whose only answer is “raisemore funds for more research, we will find the cure and make this disease goaway.”

I am angry with the all of those who have absconded with myDisease!

Medusa, whose beautiful hair was changed to a head of hissing serpents each called “Stigma”

2012-01-12T12:37:00.003-06:00

I am still writing and rewriting chapters in my bookentitled Brave New World of Dementia. It is still in a lot of re-writewithout a lot of new chapters. It is more of an undertaking then I anticipated butI am enjoying it immensely. I will post parts from time to time as they arenear or are finished.

In the meantime I am starting a new corner for commentsand articles that come up in the course of my reading. This will happenrandomly with no regularity. When I see or write something I like you will see itposted.

The first in my column of what’s new or interesting is thefollowing:

Bob DeMarco wrote the following comment on Alzheimer’sReading Room. I responded along with 9 others with my view on Stigma. Ihave hypertext’d the Reading Room so you can click on it, go to it, and readeverything.

Alzheimer's is hard todetect. Hard to diagnose. Hard to understand. Most of all its hard to accept.

By Bob DeMarco
Alzheimer'sReading Room

Istheir a stigma attached to Alzheimer's?

If so, how does this stigma effect a personliving with Alzheimer's (or any type of dementia)?

How does this stigma effect an Alzheimer'scaregivers ability to care, or function?

How have you been affected by Alzheimer's?

I am interested in learningif you believe there is a stigma attached to Alzheimer's?

How does this stigma effect you? What effect hasit had on the reactions of your family and friends?

Do ignorance and denial play a role in thisstigma?

If Alzheimer's was better understood would thisstigma go away? Or, be reduced?

Are people prejudiced against people withAlzheimer's disease?

How do you think the stigma associated withAlzheimer's could be reduced, or eradicated?

Please take the time to use the Add New Commentbox below to share your thoughts and feelings on this issue.

Medusa, whosebeautiful hair was changed to a head of hissing serpents each called “Stigma”

Like Medusa whosebeautiful head of hair was changed to a head of hissing serpents, stigma is thesame kind of head whose hair are the same serpents as those occupying Medusa’shead. They seem to be all different flowing for myriad reasons by our lovedones, acquaintances and public in general who react badly to Dementia andpeople with it.

They are the crowd who say the worst thing thatcould happen to me would be to have Alzheimer’s Disease (AD). That is theironly impression, only response, they never grow beyond that even when looking ADin the face.

Their knees jerk screaming “shun,” “get awayfrom me,” you just imagine you have it, quit dramatizing and seeking sympathy,”“I don’t know what to do, what to say, so I don’t, lest it be wrong.” Thisrendition could go on into infinity.

Fear, control, possessiveness, denial…. are buta few of the reasons for it and for it staying with a person even when someoneknown to them all of a sudden is diagnosed with it. It is a paralysis thatkeeps them from learning anything about it; they simply want it out of theirpresence. “Put it away” the say! “I can’t handle it!”

The sorriest part is those who prey on ourcircumstance with their own agendas that embed the stigma more deeply in us.This is the no hope, no cure, nothing we can do but raise more funds to findthe cure bunch.

They accentuate the worst of AD, which is easyto find and describe and scare the pants off everyone not exposed to it. Theiragenda in doing this is to scare people into believing they too might get thisawful malady unless they contribute money to avoid it. Painted with thispurpose this just ncourages more stigmas.

Harry John’s, CEO of the Alzheimer’s Associationsaid it 1-27-11, short in days to a year ago:

“Alzheimer's will darken the long-awaited retirementyears of the one out of eight baby boomers who will develop it. Those who willcare for these loved ones will witness, day by day, the progressive andrelentless realities of this fatal disease. But we can still change that if weact now."

A year ago? And, what I quote was said in apublic pronouncement accompanying the release of the latest compilation offacts and figures about AD. Does that have an effect on Stigma? You answer thatone.

BRAVE NEW WORLD OF DEMENTIA Chapter Three

2011-12-30T11:53:00.001-06:00

On this bench, withthis person, in the place, in nowhere, Lorli kept on expounding.

Inour recent past we had other terrible diseases that took lives randomly ravagingour society and were able to find drugs eventually to cure them. We saw noreason that we could not do the same with DD. It had a fairly common course andseemed to attack the brain in similar if not the same ways.

We tried and came upempty. Too many years of research produced little but some drugs that couldslow the process down. When we were reaching the point of diminishing returnwhere too many were being cared for not enough being cured; at a cost thatcommunities and the State along with the families could no longer afford to dowe realized we had to find something or end up seeing these patients end uphomeless and in the street.

We were doing no morethan treating the patients palliatively. We were giving the afflicted drugs tocomfort them, institutionalizing them for their safety, accepting theuncontrollable consequence of the disease and waiting for them to die. It wouldhave saved money to euthanize them but mercy killing was prohibited by law andno one was anxious to change that even for special exceptions like this.

An internationaldialog started discussing whether or not there was value in continuing fundingresearch to find a cure or time to accept it was a lost cause.

Instead of arriving ata yea or a nay the argument turned to trying alternative ways to attack thisdisease. We had to find another approach; we need to find if anything elsecould be effective.

Therehad been many arguments about life style changes in diet, in physical activity,in socialization of people afflicted, all of which might make a difference. Inmy field we looked specifically at how the brain operated. We asked, is itpossible to get the organicity of the brain to overcome the injury the brainwas sustaining from the disease.

What finally bridgedthe chasm between those who wanted to continue putting all their effort into researchand raising funds to find a cure and those who wanted to look for somethingelse, when a comment was published by an editor of a country weekly newspaperthat found its way into this dialog.

That comment wasretrievable from the kiosk that had delivered a copy of the article ResearchBrief: Hippocampal Hyperactivity referred to in thelast two chapters.

The text of thatcomment was this:

Not If, Not When, But, Why Don’t We Start

Before It Eats UsAlive?

Itis not a question of “if”; It is not a question of “when” are they going tohelp? It is an issue of “Why” don’t they see they are so needed, if only for aninterest in us if nothing more. I speak not from the standpoint of a caregiver.I speak for the one who is cared for. God Bless the caregivers we have and thefolks that continue with an interest in how we are and how we get along.

Virtualabandonment is one of the worst anomalies we must deal with after we’rediagnosed as having a Dementia. It is equal to the feelings of the Caregiverwho is also abandoned. The only difference is we do not suffer the exhaustionand the total lack of validation a Caregiver gets doing the thankless job theyhave taken on.

Weat least have the loving concern of our Caretakers.

Why?There are a million reasons out there, too many to count. Many emanate from amisguided Society in which we are acculturated not to care for anyone else butourselves. If we are imbued with a lot of altruism it may manifest itself inconcern and care for our spouses and families, but generally it goes nofurther.

Weare the guy in that story of the executive who suffered a near fatal heartattack. When he had recovered sufficiently he was released to go home. His wifeasked as she came to pick him up: “Are you anxious to get home?” He said “wouldyou drop me off at the office, I will call you when I am ready to go home.”

Thisis the guy who will have the epitaph on his tombstone: “He Worked Hard andSupported His Family Well.”

Whywould a person be so honored in his death remembrance? After more than 500years of living the rule of the survival the fittest, since we canonizedCapitalism as our way of life, we have been acculturated accordingly. We havebecome assimilated to a political, social, and cultural way of life that turnsus intoourselves. We have completely embraced this way of life implicitly in a formulato protect us and give us the greatest return.

Wehave been brought to believe so long as we concentrate on acquiring as muchwealth as we can at the expense of all others, and so long as the other guydoes the same thing, this will force a balance among us in which all receivethe greatest measure of return as possible.

Itis for this reason we live on personal islands and connect with others onlywhen it is in our self- interest to do so. We are responsible only to those wehave allowed on our island.

Thefact is this self-indulgence is taking its toll. The abandonment of our sickand elderly, of the demented, is evidence that our system is failing us.

Tosuggest Capitalism has not produced what it proposed would be suicide.Capitalism is not the perfect check and balance on keeping parity, onmaintaining a balance of fairness. There are better ways if only we have thecourage to adopt them. Too many who are prospering through advantages and voidsin the balance would vehemently oppose such thoughts. "Commies” used to betheir charge, now it is simply “Liberals”.

Thiscoupled together with broken thinking, broken families, broken outlooks,philandering institutions all taking advantage of us, together they are majorcontributors. Our society centers on “me”. If I do my best I will both succeedand keep everyone else in check as they try to succeed.

Likeone that galls me too often: We are told to simply to stay in the guidelines ofthe rules, like “Know love and serve Him in this world and be happy with him inthe next”.

Thenthose who tell us to “do this don’t do that” do the contrary in spite of whatthey say. The Church, (RC), promotes sexual abstinence then we see the celibateclergy use aberrant forms of sex for abuse. We see bankers under the color ofprotecting us actually extorting us. The politicians say they will serve us andturn around and do what their puppet master secretly pay them to do.

Isit any wonder this duplicity spoils our outlook and action? There is no senseof responsibility leading us. We follow a rule of “protect your tail” andmanage to get ahead anyway. Avoid anything painful unless it is biding the timenecessary to nurture your success.

Thisis and historically has been our way. It follows a formula we trust. It is infact a formula that is eating us alive. No one is around asking “What canI do for you? Or “Can I help?” The formula will not work that way. Help comesfrom those who help themselves!

Isit any wonder that any but the closest care when someone checks out of therace. They have not time but to continue the race until it is too late and theyare the ones checking out.

When I returned I readan article in Alzheimer'sReading Room entitled Alzheimer'sand The Invisible Siblings that put me inmind of the comment Lilo made on her history about what happened to DD in“Nowhere”

Read it by clicking onthe reading room or the article title to read it.

BRAVE NEW WORLD OF DEMENTIA Ch. 2. Encounter

2011-12-23T11:54:00.001-06:00

By Mike Donohue

Having no idea where I had beenin my first foray into the unlabeled world of wherever, I was intrigued beyondmeasure. Where in the world was this? It was certainly no yesterday or any timebefore in the past. It could be the future, but the differences of everythingargued with this. It didn’t quite have roots in or earmarks of what I knew tobe “now” to qualify as something in which “now” had grown into in the future

Was it a lost continent likeAtlantis? Hardly! This world we live in has been just too explored and mapped.

Nonetheless its peculiarity hadme captured. I wanted to know what it was and where it was. Fortunately I hadmarked all the settings on the unlabeled buttons and dials that had taken methere so I was positioned to repeat that effort. If I wanted to know where I hadbeen it was better I go back to the same place if the dial settings would takeme there. I would go there for a longer time and investigate a little more.

I was also puzzled by thedirectory that gave but one entry relating to AD or Dementia, “Clubs for folksaffected by Dementia” was all there was. Nothing else pertaining to the diseasewith which I was afflicted. It seemed odd, no Alzheimer’s Association, noDementia therapy entries, no nursing home or other services for folks withDementia or AD was listed. It was absent but for the one “clubs” entry.

This was another factor urging togo back, look around and answer the question I had concerning Dementia and AD.

Impulsive as I tend to be I setthe dials again the same way. I did this for all but the one I assumed to befor time of stay. I put that one at a setting not too high but high enough formore than a day. I hoped for three days so set it similarly to that setting ona labeled dial. I packed a nap sack with food, a change of clothes, some money,a compass and a digital camera. I included a note book and a number of pens toboot. I also had the foresight to throw in some AD literature.

With everything set I switchedthe on button and Wham. I was off and there in an instant. I knew it was thesame place because I was again outside, no home of mine to be seen, andeverything looked the same. I had a plan this time. I was going to find outwhere this was, why it was the same and why it was different all at the sametime.

First on my list of plans was tostrike up some conversations with some people. This seemed the simplestsolution to identifying the place. It also seemed possible because of the manypleasant expressions I saw on people’s faces.

I was dressed in jeans and asummer sweater. This fit the climate I left and the climate and temperature inthat place I happened on the last time. I found conditions to be the same onthis excursion making me adequately attired.

This did not match the apparel ofthe people I encountered. There were variations in attire all of themdifferent. The men seemed to wear some arrangement of leggings hugging theirlegs and a tunic like top. Longer and fuller than a shirt, they seemed to be madeof a light material like a silk or rayon. Their dress tended to be colorful in brightpatterns and solid colors.

The colors were different,nothing quite the same. Reds were absent, but something close to it waspresent. The same was true of blues, yellow, browns and greens. There were ofcourse many more variations and styles.

The women dressed altogetherdifferently. You could tell they were women and the men were men, because thewomen had a far more alluring look to them, a look that accented themdefinitely as women, bodiced bust and other body proportions demonstrated inthe clothing styles making it impossible to mistake a woman for a man.

The attire and appearance ofchildren mimicked the adults; however their dress lacked the allure of womenand the showiness of men.

Again everyone walked about; Icould see no style of conveyance in the area where I wandered. I did seeevidence of roadways lying out further from the built up areas but could notdetermine for what kind of transportation they were used for.

There were buildings all aboutwith a hard surface walkway akin to a cement or tarvia surface, but notactually either one. It was hard but like everything else it was a littledifferent. It had a soft feel to it. It was almost as if there was safety builtinto it to avoid injury should one fall or be dragged on it. I didn’t test thisaspect; it just seemed to have that quality to it.

The buildings I saw were made ofa singular substance almost as if it had been poured plastic. They were not thesame, colored differently, different architectural styles, different adornmentand different appurtenances as well as different utility. Some were obviouslyhomes, more multiple dwelling than single family dwelling, some were evidentlystores and others gave the appearance of offices, factory, service space andwarehouses. As I walked about I could see they were zoned somewhat to use andthe greater crowds of people were in the commercial and office areas.

After looking about I centered myattention on a woman sitting on a bench. She had been conversing with a numberof people passing by. I figured I had a better shot if I followed the manner ofothers walking by and offered her a similar greeting.

I was concerned because of mydifferent appearance, not wanting to scare her or in any way appear to beaccosting her. At the same time my clothing was similar enough to her garb so Idid not see this as an impediment.

As I neared her I waved andsmiled and said “Hi.” She looked up, gave me a very puzzled look probablyhaving to do with both my dress and my word use. I actually had heard no other“Hi’s.” She returned a greeting, what it was I have no idea being very shook atthe time by my forwardness. I knew her greeting to be friendly by the big smileshe gave me and the conversation she immediately started with me.

She first invited me to join heron the bench which I did graciously. I was floored that she was so open with menot quite fitting in with everyone else. It didn’t seem she had any fear that Iwas a mugger, a pan handler or some other nefarious type, she was open andfriendly. Wow!

She immediately started asking mequestions. Who are you? You are surely not from here? Where are you from? Whydo you look so different and sound so different? You don’t have any accent Ihave ever heard, but your intonation and language is very different. You aredressed in a way I have never seen before.

Expecting to be repulsed as soonas I tried to explain I talked around her questions. I first remarked on theweather than on her. I complimented her dress and appearance noting howdifferent but the same as much I had seen before. I then complimented her lookssaying she was quite attractive. That one will either get you cracked over thehead or immediately liked so I took that chance on the first conversation Istarted.

She smiled and said “Thank you”making no similar assessment of me. We kept talking, she with a new set oftwenty questions about my difference, me with one change of subject andconversation dodge after another. Finally with evident frustration she asked mewould I answer anything I was asked or was she talking to the breeze?

I decided it was time to quitbeing fancy and get down to business. I told her she was right, I was not fromhere. In fact I had come from a long way from here where everything was quitedifferent. I said because of the difference, the society I lived, differentfrom what I saw here, I came to study it. I was concerned to find out how itcould be the same and so different in so many ways.

She responded with “quit funningme, I have been around many different places in the world where differentlanguages are spoken and people both dress and act differently. You break themold!”

I decided this was the time forbrutal honesty, tell the truth and have her throw me to the lions.

I said “I have no idea where I am.It is almost like I am in a different world.” I told where I come from. I thentold her of my machine, its ability to take me forward and backward in time. Itold her I had other settings I put on it when I built it. I did it in a surgeof high intellect but didn't have time to identify the other switches and dialsettings because my episode of high intellect had passed. I was left to thewaning cognition of a disease with which I was afflicted.

With all that I told her themachine delivered me blind to here where I found myself.

She did not call for the “whitecoats” the police or just run from me. Her brow furrowed as she asked just whatkind of a disease is it that I suffer. I explained my Dementia to her, told herI had been diagnosed with an atypical dementia of the Alzheimer’s kind. It wasa disease where there was no known hope of recovery and one for which there wasvery little treatment or help. “We are left to be while we are still functionaland when we can no longer function we are put in warehouse like homes where weare drugged into somnolence and pretty much left to vegetate until we die.”

I went on to tell her that Iexperienced an episode where my mind was really cooking with far more sentiencethan I ever had which lasted for about a month and then passed. During thistime I had the very creative idea to build this time machine that could take meback and to future times. I also had the knowledge of how to do it. When I wasnearly finished I lost my super sentience. I returned to my state ofdiminishing cognition and found me and the machine with a number of executionswitches not labeled. I had no idea what they were for. I said this isconsistent with what dementia is for me.

She listened with rapt attentionand then said: “How interesting! How much more interesting it is that youshould happen on me to talk to. You see I am a Doctor, a Specialist of the Mind.I treat people with functional difficulty of their thinking process.” Was Ioverwhelmed or was I overwhelmed, which I will speak about later, just not now.I have to tell you the entire story of our first meeting.

She said her name was Lorli. Shehad been practicing her profession for some 30 years and was considered one ofthe foremost authorities on thinking disease.

She didn’t stop here. She went onto say at one time in their past they had a disease they treated similar tomine that no longer afflicted people. They called it Dementia Decline or DD.

At first they tried to find amedicine to cure it. When they found they were not really finding any cure theyreduced and re-direct their search and testing. There were too many kinds ofDementia with too many dysfunctions causing them to develop. They realized theywere dealing with a generic classification leading from a variety of causes.Most of the Dementias were caused by different conditions all having to do withorganic cerebral dysfunction.

Assigning the different kinds tothe one classification then concentrating on each one, they developed differenttherapies to redirect the dysfunction into normal function. They weresuccessful on overcoming every one of these processes leaving each patient witha mild residual of the many limitations the patient once had.

All that eradicated they wereleft with but people mildly affected, very functional, able to care forthemselves and be productive. They do however maintain clubs to of peers withsimilar Dementias to help cope them with their very mild differences.

There was no shutting up Lorli.She went on to describe what was happening to me that produced the building ofthe time machine. She quoted one of the articles that were delivered to me fromthe kiosk, namely: Research Brief:Hippocampal Hyperactivity Tied to Early MCI Atrophy. Click onthe title to go to my Archive to read it.

Rather than recite what she saidI will quote the article directly;

Functionaland structural imaging evidence continues to push back the start of Alzheimer’sdisease by years, even decades, before memory problems emerge.Just before the steady decline in hippocampal activation thatoccurs as dementia sets in, this brain region shows a surprising frenzy ofactivity. With functional magneticresonance imaging (fMRI), Sperling and others have seen hippocampalhyperactivation in seniors with MCI) or mildly impaired memory, peoplewith familial or genetic AD risk, and even in young . Research presentedat the recent Society for Neuroscience meeting, also suggests that brainchanges revealed by functional imaging could signal future dementia

The machine was undoubtedlyproduced by a surprising frenzy ofactivity! I certainly digressed after my creative fugue.

BRAVE NEW WORLD OF DEMENTIA Ch. 1. Time Machine

2011-12-21T13:12:00.002-06:00

I have heard nothing from anyone. I do not understand the reticence. I will right now for my own pleasure starting over with the story line for Brave New World of Dementia. It will appear chapter by chapter with other posts some times placed in-between

By Mike Donohue

You see, I had this episode of super cognition andblazing intellect. Where did it come from? I have no idea. I conclude from allof my experience, training and education that the brain we carry around has thecapacity for this to happen.

As our spirit winds its path through this temporallife our brain is capable of so many functions we have yet to discover in theprocess of its evolving from generation on to generation.

This is my only answer. Added to this was myexperience of an epic month where my cognition instead of wasting away from mydisease of Dementia it had a surge of fullness that I cannot even try toexplain. I knew as soon as it hit my brain and opened my intellect so much morethat I was equipped to do some brilliant things. I also knew that eventuallythis doggone disease Dementia would eat it for dinner. I would once more returnto the slippery slope to incompetence and oblivion.

It was therefore my decision to make the most of itwhile I had this open channel to whatever it was that burst forth for me.

One of the things I used this super sentience for wasto build a time machine. I had every bit of the knowledge I needed to do it. Ialso had the foresight, thank you SuperS, to make the time machine simpleenough that my demented mind could handle it. That meant switches with labelsaccompanied by plates engraved with instructions about what would happen if theswitch was turned on from off, and what to do when I turned the switch.

Just as I finished and was putting labels on all ofthe switches and plates with instructions, the cloud covered the bright lightof perspicacity. My mental acuity passed. I returned to the limitations ofdementia curtailing my cognition,

In my return to my demented cognitive state I able torecognize my time machine and was able to read labels and directions for two ofthe switches.

One switch was for going forward in time, the secondfor going backwards in time. I remembered my purpose in doing the labeling andthe instructions. I only wished I had more time to cover all of the switches Iinstalled.

After the fugue of brainpower passed I could rememberthe untagged switches; I could remember they were put there for the same reasonas my two labeled switches, namely the time before and the time after. Whatthey did completely escaped me. It was obvious they were not for the timebefore or the time after.

It was just like being unable to access the name ofsomething familiar which happens too often because of my Dementia.

I decided to try the machine out. I would use theswitches that had guidance and make a plan for the other buttons later.

My first step in doing it was to read the labelsmarked for the switch “Past Times”. I reviewed the plate with instructions. Ittold me to sit in the chair of the machine, put the head gear over my head soit covered my brain cage, set dial 1 for the exact time and date to where Iwanted to go.

The instructions then directed me to a second dial with an outer wheel and aninner wheel the instructions said I could set longitude with the outer dial andlatitude with the inner dial for the place where I wanted to go.

The last dial was to set a time in which I wanted toreturn to the machine and a final dial to actuate if I wanted to set place forsomething other than the place I started from.

This seemed clear enough. So I set down and turnedthe dial set the time and place and asked to be returned to the starting pointin one minute. I set the time and place to go to Galileo’s trial by theInquisition for heresy in 1633 in Rome.

It worked. I was there in the midst of a clericalconvergence akin to an underground meeting. The room was hot and clammy,smelling of unwashed bodies, hate, arrogance and fear. In their midst stoodGalileo Galilei. I had difficulty over the course of a minute understanding thearchaic Latin that was the language spoken at the trial. I did get the gist ofit, one of the Cardinals roaring “Anathema!”

When I returned I entered the detail of theexperiment in a journal. I then started plans to try the second switch withlabels and directions that would take me to “Time to Come”.

I followed the same procedure and set everything forone year into the future. I set the time for 10 minutes, the location to returnwas back to my time machine. It took me to what appeared to be a year in thefuture.

Oh my, was it something. There was not a lot that wasdifferent and at the same time there was so much that was different. It wasweird almost surreal taking it all in.

Theplace I found myself was remarkably clean, finished, picked up, nothing undoneand dangling. Nothing appeared old, worn or obsolescent. I saw people and theywere all dressed in a variation of clothes current in my time.

This was all I could observe in ten minutes when Ifound myself back sitting in the time machine.

I spent a short time taking trips back and forth,staying longer times, exploring and checking reliability of the machine ingetting me there and bringing me back.

I also wanted to evaluate my personal safety. I didthis by taking short trips to a time and place; evaluate the degree of socialsafety, the type and kind of clothes to wear and what else to bring with me toassist my time there and to use for my personal safety.

I entered my escapades in my journal each time I wenton a romp and had that to review before further exploration.

I then had to investigate at least one of the otherswitches to see if it would take me anywhere. I now had confidence in thebefore and after trips I had taken so I scheduled this trip for a day.

I found similar dials for the third switch. The dialswere the same as the two labeled switches. So I assumed they followed the sameorder and I acted accordingly. I set the day before as the place to go. In thatway, having been there before I already knew the ropes and would be virtuallysafe.

I made all the settings, albeit blind, and wham I wason my way. Having arrived I looked about and it appeared as it appeared to beyesterday. I would experience everything I had already experienced. As Iassumed this to be true everything I looked at then failed to make sense atall.

I was not in the room with machine, I was out of doors.My house was nowhere to be seen. I saw people about. They were all walking, nocars or other conveyances around. The clothes worn by everyone, theiradornment, hair styles, their looks and appearance were different but notaltogether that dissimilar.

The architecture, the paths and walkways, thelandscaping all had a park like look to it although I could sense it was not,it was just a normal outside.

I wondered where I was. It was too different to be myworld if I was but a day before as I set the time dial.

I looked about and saw a kiosk standing in a centralsquare that had what looked like a directory on it.

By the grace of all that was holy it read in English,unlike English in my experience with many words written differently. A greateremphasis was made to visually present the phonetic sound of the word written. Icould tell this because like English, it followed the alphabet of my world.

I looked at it with utmost interest. It seemed tohave buttons after each entry that could be pushed for making contact with allthere was to be contacted in whatever limits or each area serviced by thedirectory.

Considering that I lived in Dementia World I lookedfor something associated with Dementia or Alzheimer’s Disease.

The closest I found was “Clubs for folks affected byDementia." It looked good, therefore I hit the button. Would you believethe directory turned into a computer monitor which offered me furtherselections.

Daily Literature about therapy, treatment, activityfor anyone affected by Dementia, many other dementias related topics werelisted. It had a number of options one of which was to “press here” forimmediate delivery of transcript of literature to kiosk from which you arecalling. I thought what the hell and hit that.

Instantaneously delivery was made of two articlescoming from an outlet immediately appearing on the screen as if it had alwaysbeen there.

They were entitled:

1. The Bupa Health Foundation And Alzheimer’sAustralia Have Announce The UK Launch Of A World-First Brain App. The LatestDigital Tool To Help In The Fight Against Dementia.

2. Research Brief: Hippocampal HyperactivityTied to Early MCI Atrophy\

I kept copies and have downloaded them into myArchive. Click on them to go there and read them.

What’s It All Worth?

2011-12-20T11:28:00.002-06:00

Richard Taylor A leading writer in the dementia field, inhis latest monthly Newsletter for December 2011 stated the following:

Every month I honestly feel andbelieve I have nothing new and different to say. And every month thus far Ihave proven myself wrong. Some months are deeper, or funnier, or more profound,or shallower than others are.

I cannot seem to predict or controlthe quality, nor the quantity for that matter! There is a growing part ofme that whispers "you have run out of new things/insights/experiences”. Of course I could: Stop…. (“Alzheimer's Fromthe Inside Out” Newsletter )

I have been saying the same to myself, As a result I havestopped keeping my Blog current. I have not posted for a week. During the weekof no posts people have continued going on the site and spending time there.

3 of the last 4 posts were the start of chapters of a new fictionstory I am writing. I entitled it the Brave New World of Dementia, borrowingfrom Aldous Huxley’s classic Brave New World title.

The protaganist “I” is about a guy with Dementia having abrain surge instead of the steady brain death by deterioration typical of ourdisease. I based the idea on an article I read about the brain temporarily regeneratingthe hippocampus as part of its process of dying. You will find the article onmy Blog Archive entitled “Research Brief: Hippocampal Hyperactivity Tied toEarly MCI Atrophy” found at the following WebSite address http://ic-mike.blogspot.com/2011/12/news-search-research-brief-hippocampal.html.The article describes how during the process of brain loss the brain has asurge of temporary cognition is acquired. It gives the person having it greatutility in their brain power.

My protagonist had such a surge. During it he built a timemachine with his Super Sentience.

The time machine completer, he had labeled two of multipleswitches before the SuperCharge passed. In the labeling of the two heidentified what the switches did and also gave instructions on how to set itbefore switching it on. The enhanced intellect was over before he could domore. He had “before” and “after” time labeled, the rest of the buttonsremained unlabeled.

He could not recall what these other switches did other thanknowing they provided a variety of options. He therefore used the two labeledswitches to go into PastTimes and into TimesFuture. Then having ridden two ofthe horses he started on the third switch setting it up the same way he haddone for the two labeled switches.

He found himself in a similar but different world. Afterinitially going into it he came back a second time to spend greater time forexploration. He wanted to know where this place was.

He struck up conversation with a lady sitting on a parkbench who seemed amenable to talking with a stranger.

The gist of the conversation included disclosure of hisDementia. She in turn said she was a Physician whose training and specialty certificationis that of a Brain Specialist. A discussion ensued about her telling how theyhad eradicated most limitations from Dementia in this world.

I have not disclosed the discovery by the protagonist thathe is an alternate universe as yet. I am using the current interface with thisworld’s resident expert to explain how therapy, programs, and care broughtabout control of the disease where researching to find the cure was wastingtheir time and money. They did find the means with which to cure many people’sdisease when they separated out enough of the major yet different types of ADand Dementia and attacked each individually.

From there I will work on the other unknown labels andswitches to explore Dementia in each of the places the machine delivers theprotagonist.

Because I was repeating myself so much on issues I hadadvocated in the story I wondered if those reading my blog were being bored outor found the story format at least equal to the essay format. I had been writingthe blog in essay form the last 3+ years.

In my last blog post I asked: “Do you like this format ofstory form? Would you rather I go back to the essay form?” I said I would putthe blog into hiatus until I received comments from my readers with somedirection. In a week I received nary a peep or a comment. Strangely enough theblog reader and reading time count remained high during the week of no posts.It only started waning is the last few days. Before that 30 – 40 people werereading and turning pages on the blog each day. I was mystified by no responseto my inquiry.

This leads me to these questions:

I am told I am a good writer. My cognition remains prettygood as does my ability to analyze, read and write. I have something to say.With my background as a successful trial lawyer I am equipped to advocate myview which is this: We must change our approach dealing with AD before itbankrupts us by the runaway costs of all the kinds of care, treatment, medicalattention, drugs and everything else pertaining to AD.

Takea look at my Blog. The three chapters of the story I am discussing are these:

BRAVENEW WORLD OF DEMENTIA

BRAVENEW WORLD OF DEMENTIA Chapter Two

BRAVENEW WORLD OF DEMENTIA Chapter Three

Iwould appreciate anyone kind enough to take a look at it respond to me eitherby email at mhdonohue@comcast.net orby commenting on this site where my query appears. Tell me with brutal honesty,is my writing of a quality that is worth reading with something to say or is ita lot of drivel? Then tell me what do people having a sufficient interest inDementia and willing to read about it want to hear.

Ilike to write, but like Richard Taylor I am feeling redundant in what I have tosay. I have many other topics in which I have an interest in writing about. I wantto use the time left me productively. My first desire, having Dementia, is toshare my experience as one with Dementia.

Ifit is of no avail then I need to write about my Plan B, namely other topics.

Re-evaluation

2011-12-12T20:05:00.002-06:00

I am subject to the mood swings of my disease. I don’t likethe swings in the down direction when they happen. They are part of the disease.Part of the acceptance in having this disease is tolerating them as theyhappen.

From my current mood, looking up over the crest of the gullyI am in, I wonder about the direction I have taken in the last three posts,namely the story about the BRAVENEW WORLD OF DEMENTIA.

My intent is to weave a story of a society like ours in analternative universe, that developedmuch as we did, but took a different course over the pending calamity of thedeluge of cases of Dementia. It parallels our world in first simply trying tofind the magic pill to cure it and finally recognizing that was not likely tohappen. Recognizing this they took a different course to care for people withthe disease and make changes. The changes were deep social-philosophical modificationsin commonly held beliefs and simpler variations in programs of care andeconomies in the cost of care.

This course will likely take Lorli on muchexpounding and sounding as if she were giving lectures. This, like the lastpostBRAVE NEW WORLD OFDEMENTIA Chapter Three could induce a lot of boredom especially redundancy. I do not know whereLorli will take the story, I like many writers have no idea where a story linewill go until I start writing it, then only know it by how it ends up

If the folks who follow my blog have an interest in thisform of blogging for a while, during which time we see where Lorli takes us, Iwill continue. If this is coming off as boring and sophomoric, I will take avacation and go into hiatus for a while.

There will be no posts until I get some comments from thosereading this about what they want to hear or if they have heard enough.

I like to write, but I have many things I can write, theblog not being necessary in my need to write. My reason for doing the blog isto direct the writing activity to my disease as it is in progress to give thereader some of the experience I am having on the inside of this disease. Ifthis is valued it makes this sharing worthwhile and fulfills my mission to usemy disease for some good. If it has worn out this purpose it does not makesense to continue.

So please let me hear from you!

BRAVE NEW WORLD OF DEMENTIA Chapter Three

2011-12-10T21:52:00.001-06:00

On this bench with this person in the place out of nowhereLorli kept expounding.

She said some years ago they were suffering the ravages ofDD (Dementia Decline) and finding no relief. It was devastating so much of thepopulation, the seniors and the middle aged in epidemic proportions, wesearched and searched and could not find a way of stopping it.

We had other terrible diseases that took lives and ravagedsegments of our society and were able to find drugs eventually to cure them. Wesaw no reason that we could not do the same with DD. It had a fairly commoncourse and seemed to attack the brain in similar if not the same ways.

We tried and came up empty. Too many years of researchproduced little but some drugs that could slow the process down. When we werereaching the point of diminishing return where too many were being cared for ata cost that communities and the State along with the families could no longerafford to do we realized we had to do something or put all these patients inthe street.

By this time we were doing no more than treating it palliatively,giving the afflicted drugs to comfort them, institutionalizing them for theirsafety, accepting the uncontrollable consequence of the disease and waiting forthem to die. It would have save money to euthanize them but mercy killing wasprohibited by law and no one was anxious to change that even for specialexceptions like this.

An international dialog started discussing whether or notthere was value in continuing funding research to find a cure or time to acceptit was a lost cause.

Instead of arriving at a yea or a nay the argument turned totrying alternative ways attack this disease and see if this approach could bein any way effective.

There had been many arguments about life style changes indiet, in physical activity, in socialization of people afflicted which might make adifference. We also adopted a wider study of processes in other diseases thatwould help. Finally in my field we looked at how the brain operated. We asked,is it possible to get the organicity of the brain to overcome the injury thebrain was sustaining from the disease.

What finally spanned the chasm between those who wanted tocontinue putting all their effort into raising funds to find a cure, and thosewho wanted to look for something else, when a comment was published by aneditor of a country weekly newspaper that found its way into this argument.

That comment was retrievable from the kiosk that had delivereda copy of the article ResearchBrief: Hippocampal Hyperactivity referred to in the last two chapters.

The text of that comment was this:

Not If, Not When But Why Don’t We Start Before It Eats Us Alive

It is not a question of “if”; It isnot a question of “when” are they going to help? It is an issue of “Why” don’tthey see they are so needed, if only for an interest in us if nothing more. Ispeak not from the standpoint of a caregiver. I speak for the one who is caredfor. God Bless the caregivers we have and the folks that continue with aninterest in how we are and how we get along.

Virtual abandonment is one of theworst anomalies we must deal with after we’re diagnosed as having a Dementia.It is equal to the feelings of the Caregiver who is also abandoned. The onlydifference is we do not suffer the exhaustion and the total lack of validationa Caregiver gets doing the thankless job they have taken on.

We at least have the loving concernof our Caretakers.

Why? There are a million reasonsout there, too many to count. Many emanate from a misguided Society in which weare acculturated not to care for anyone else but ourselves. If we are imbuedwith a lot of altruism it may manifest itself in concern and care for ourspouses and families, but generally it goes no further.

We are the guy in that story of theexecutive who suffered a near fatal heart attack. When he had recoveredsufficiently he was released to go home. His wife asked as she came to pick himup: “Are you anxious to get home?” He said “would you drop me off at theoffice, I will call you when I am ready to go home.”

This is the guy who will have the epitaphon his tombstone: “He Worked Hard and Supported His Family Well.”

Why would a person be so honored inhis death remembrance? After more than 500 years of living the rule of thesurvival the fittest, since we canonized Capitalism as our way of life, we havebeen acculturated accordingly. We have become assimilated to a political,social, and cultural way of life that turns us inward to ourselves. We have completelyembraced this way of life and believe implicitly in a formula to protect us andgive us the greatest return.

We have been brought to believe solong as we concentrate on acquiring as much wealth as we can at the expense ofall others, and so long as the other guy does the same thing, this will force abalance among us in which all receive the greatest measure of return aspossible.

It is for this reason we live onpersonal islands and connect with others only when it is in our self- interestto do so. We are responsible only to those we have allowed on our island. Thefact is this self-indulgence is taking its toll. The abandonment of our sickand elderly, of the demented, is evidence that our system is failing us.

To suggest Capitalism has notproduced what it proposed would be suicide. Capitalism is not the perfect checkand balance on keeping parity, on maintaining a balance of fairness. There arebetter ways if only we have the courage to adopt them. Too many who are prosperingthrough advantages and voids in the balance would vehemently oppose suchthoughts. "Commies” used to be their charge, now it is simply “Liberals”.

This coupled together with brokenthinking, broken families, broken outlooks, philandering institutions alltaking advantage of us, together they are major contributor. Our societycenters on “me”. If I do my best I will both succeed and keep everyone else incheck as they try to succeed.

We do not have rules of engagement;in this we simply compete. There is no overall moral or spiritual good given usin our training for life, we are given rules, with too few explanations fortheir reason. We are told to simply to stay in their guidelines, like “Knowlove and serve Him in this world and be happy with him in the next”.

Then those who tell us “do this don’tdo that” do the contrary in spite of what they say. The Church, (RC), promotessexual abstinence then we see the celibate clergy use aberrant forms of sex forabuse. We see bankers under the color of protecting us actually extorting us.The politicians say they will serve us and turn around and do what their puppetmaster secretly pay them to do.

Is it any wonder this duplicityspoils our outlook and action? There is no sense of responsibility leading us. Wefollow a rule of protect your tail and manage to get ahead anyway. Avoidanything painful unless it the biding the time necessary to nurture your success.

This is and historically has beenour way. It follows a formula we trust. It is in fact a formula that is eatingus alive. No one is around asking “Whatcan I do for you? Or “Can I help?” The formula will not work that way. Helpcomes from those who help themselves!

Is it any wonder that any but theclosest care when someone checks out of the race. They have not time but tocontinue the race until it is too late and they are the ones checking out.

When I returnedI read an article in Alzheimer'sReading Room entitled Alzheimer'sand The Invisible Siblings that put me in mind of the comment Lilo gave meand on her history about what happened to DD in “Nowhere”

Read it byclicking on the reading room or the article title to read it.

It’s Mild Cognitive Impairment. Now What?

2011-12-05T12:47:00.001-06:00

Mild Cognitive Impairment (MCI) is it a worthwhilealternative as a working diagnosis, or does it create more confusion andconstitute an impediment to treatment of Dementia? It is this question that produces a forest ofparadox when dealing with the “Now What?” of acknowledging the possibility ofDementia by way of diagnosis.

My diagnosis was a gift in the wrapping of a Curse! I waslucky! I was very early on with diagnosis at age 69. Now 75 I have had thetime, the reflection, the fortitude to recognize the gift nature of it.

The gift is in the end of life challenge it has given me.There is nothing boring about this last stage of my life. In the Curse WrappingI found the Gift in the challenge it made of me. I had two choices in dealingwith it. Berate the gods for it or make the best of it. I chose the latter andthat made the curse into something at least tolerable.

All of this came to mind as I read: It’sMild Cognitive Impairment. Now What? An article in the New York Times. Ihave posted it in my archive, click on it to read it.

As I started doing what I could with it and not lamentingabout it, I started to realize purpose because of this. All my life with manysuccesses and equivalent number of failures, I came up empty on the satisfactionside. Something was missing. I had no idea; just the sense of something interms of satisfaction was not there. I was always in need of something more!

Came the blow of blows, equal in torment to a diagnosis ofAlcoholism 30 years before. I started my course of dealing with it, learning tocope with yet another limitation.

In the course of this last five years I came to realize: Ihave accepted it. It is purposeful in that plan of living I seemed to befollowing (certainly not my plan because of all the painful crap it entailed).Its purpose seemed to be having something to work at that put me into contactwith some form of Transcendence. Wow!

What was the nature of this producing such a sensation?

1. Thegood I was doing for others by advocating, speaking and writing about theexperience of it.

2. Thegood it was doing me doing something creative and intellectual week in weekout.

3. Thesense I was finally leaving a track I could be remembered by.

What a blessing this turned out to be. I am still on adownward swing, not near as fast as I expected and filled with a quality oflife unsurpassed in all of my 69 years that preceded it. Recovery fromAlcoholism made me whole. Involvement with the destiny given me by Dementia putblossoms on that plant growing for the past 69 years.

The peace and serenity, the sense of purpose of it all hasbeen a wonderful experience.

Now the question is: Howdo I get others to believe it is there for the taking?

Inthis I believe some direct change of what orbits around Alzheimer’s Disease (AD),Dementia, Senility, all the other clothes this very common syndrome has worn isnecessary.

Thefirst change is to quit sensationalizing AD. When one hears mention of Dementiain public a mild reaction is produced in us. When AD is mentioned an intensereaction is incurred. Why?

AD hasacquired a Stereotypic Definition. Its definition is of one who is totallyincompetent unable to care for themselves or be coherent in any way.

Thishappens. It will happen to me. When I think about that I work harder on thebest self-help plan out there called the “BESTPRACTICES: Eat Right, Exercise Daily, Get Involved in StimulatingIntellectual, Social and Creative Activity, Take your Medication.” So far mylife has had more quality to it than any other time in it.

In the effort to raise more moneyto find the cure the professional support groups have emphasized thesensational side of AD. They say: “It makes you crazy, incompetent, youcontinue to exist forgetting everything and everyone around you, then you die,No Cure, No Relief in sight, you are simply left to suffer through it with theonly thing able to be done is be kept safe and palliated like bring on thedrugs!”

There next step in this scenario followedtime and time again is: “We need you to contribute more so we can eradicatethis horrible disease or you will get it! We can’t do anything for you but keepyou safe until we institutionalize you than we can dope you up to feel no painat all until you croak!”

With this working definition of ADanyone told they might have it can only react to the cataclysmic view of whatit is made out to be. The fact is, and I can say this on the experience of it,it is far better to know what it is rather than denying its possibility andconstantly working harder to keep up. Form experience I can say as others do,all the time it was developing before diagnosis I was quite aware something wasawry with me and I had no idea what it was. I just knew I wasn’t getting thingsas quickly, and I had to work so much harder on things that were so easy in thepast.

I have heard this from so many andcertainly it was my view, I felt so much better when I know the reason thingswere awry. It was a relief to have a reason, to be able to say yes it is thedisease and not me. Funny, it is all me, but thinking in terms of not me butthe disease comes as a relief to so many of us.

This is what allows us to tolerateour diagnosis and work on slowing its development. This is the value of anearly diagnosis. It returns to you the quality of life that somehow wentmissing.

I know what my ultimate future is,unless I am blessed with death before that happens. I do not know when theultimate future will happen. I am doing all in my power to slow it fromhappening.

I have the confidence and thesatisfaction that when it comes about I will be better cared for and more atpeace because I have learned how to deal with this disease and refuse to let itbe a burden to me. I also have the hope that when this happens the constantcare I will need will be of a type and kind that is affordable and producesfurther quality of life.

I believe my small contributionwill help in reaching this goal.

How to Face Fear with Knowledge Part X

2011-12-03T19:53:00.001-06:00

“Keep them safe as long as we can then place them in theinstitution when this becomes no longer possible” (Dr Alois Alzheimer1902)

“There isnothing we can do but keep them safe as long as we can then place them in theinstitution when this becomes no longer possible” (MD specializing inGeriatrics Jan 2011)

We’ve come along way, eh Baby?

I started this series dealing with the question I hadleaving the office of my Doctor who told me I have Alzheimer’s Disease (AD).

What should I do about it? What can I do about it?

I have beendiscussing this in the previous nine installments dedicated to this topic. As Iam now at the end and ready to sum it up to conclusion, I see not much haschanged in the past 5+ years.

The big issues remain about AD the scourge. If you got it,there is no hope for you. Nothing will cure it. Nothing will slow it down. Youface letting it run its course following the medical advice established morethan a hundred years ago and not much changed since then.

There is nothing we can do but keepthem safe as long as we can then place them in the institution when thisbecomes no longer possible

We remain characterized as the guy standing in the cornerdrooling, unable to find his way around the two corners of the wall that traps him.

There may be dispute about myforegoing opinion as stated: “not much has changed in the past 5+ years!” Iread one article today in fact, entitled: TheAlzheimer's Generation: What We've Learned in 30 Years. It is posted inmy Archive, click on the title to go there to read. It is well worth it and Ihope the writer is right. In the article she states:

By the early 2000s, a fewassisted living companies identified a need for specialized programs and servicesspecifically designed for residents with Mild Cognitive Impairment (MCI) orearly stages of Alzheimer's disease. These programs were designed to assistseniors with early signs of memory loss to engage in activities that promotecognitive stimulation, social engagement, mutual support and stress reductionwith a goal of delaying memory loss. Not until recently did studies suggestthat lifelong learning, mental and physical exercise, continuing socialengagement, stress reduction and proper nutrition may be important factors inpromoting cognitive vitality.

She goes on to conclude:

Everyoneis hopeful that this generation will be the one where a cure is found. While the search continues, there will be even more emphasis onprevention and controlling contributing risk factors. Until then, one of the most important advances we can make is tocontinue educating, training and supporting everyone who is touched byAlzheimer's disease and other forms of memory loss.

In the rest of the article she describes how we have changedthe approach to caring for AD. In one part she states:

Activities in memory care have also transitioned away from thelarge group, one-size-fits-all approach to more intimate small groups thatfocus on shared interests and promoting a sense of purpose and belonging. Mostcare also now centers around social engagement with well-designed activities toincrease quality of life.

This is veryencouraging but I believe it doesn’t cover so many of the important aspects ofcare. Is it true “Most care also now centers around socialengagement with well-designed activities to increase quality of life.” My nursing home experience is not sufficient to make this kind ofa blanket statement. I do read a lot and I don’t see a lot of the foregoing goingon in most care situations. We are still warehousing patients to simply keepthem safe and drugging them soporifically to keep them quiet. Conversely, forsuch a statement to be made suggests this is a trend starting to happen.

The article does fail to outline care outside of the NursingHome directed to programs to prolong the earlier stages and keep the afflictedout of the Care Homes.

If I am to reach a conclusion in all I have reviewed it isthis. So much is there yet to done; it can no longer be overlooked. There ismore to supporting people affected by this disease than raising money to doresearch to find a cure. Although this remains very important so much else isat least equally important and in the futility to date of finding the cure itmay make better sense.

The key to this is probable best said in an articles andpost made some days ago. In the post Howto Face Fear with Knowledge Part V I quoted articles on the issue ofwhether or not AD is really curable. Click on:

1. BroaderDefinition of Alzheimer's Could Help Doctors Diagnose it Earlier

2. IsAlzheimer's disease really curable?

3. Alzheimer's:What if there's no cure?

These article posted had much to say on this issue like:

"tremendous social pressures" have pushedscientists to target Alzheimer's as a curable disease.

Although intensely investigated over the lastthree decades using cutting-edge technologies, the “pathogenic cause” ofAlzheimer’s disease has not been found.

deemphasize the quest for a cure and to look instead foreffective prevention and treatments that focus on dementia as part of the agingprocess. They stress the importance of controlling risk factors, suchas diabetes and hypertension, that are believed to make peoplemore vulnerable to developing Alzheimer's, and energizing the aging brainthrough social activities.

Scientists would be remiss if they weren't constantly reevaluating theirmission and direction and reconsidering funding priorities. They shouldcertainly seek more effective treatments for Alzheimer's, and there's everyindication that they are

Our future lies with these recommendations if we are to withstandthe epidemic AD is quickly becoming. The last phrase emphasized in this blogcaptures where we are at and the forgoing becomes what we should do about it

As the baby boom generation ages, dementia will become alarger social and healthcare problem.

I believe this is beginning to happen. In another article Ijust reviewed, entitled: MAKS:Drug-Free Prevention of Dementia Decline this position is taken as itrecites:

The MAKS system consists of motorstimulation(M), including games such as bowling, croquet, and balancingexercises; cognitive stimulation (K), in the form of individual and grouppuzzles; and practicing 'daily living' activities (A), including preparingsnacks, gardening and crafts. The therapy session began with a ten minuteintroduction, which the researchers termed a 'spiritual element' (S), where theparticipants discussed topics like 'happiness', or sang a song or hymn.

MAKS therapy is able to extend thequality of, and participation in, life for people with dementia

How to Face Fear with Knowledge Part IX

2011-12-01T13:46:00.001-06:00

My question: What should I do?

I have this disease.My neurologist said it was Alzheimer’s Disease. I had 4 to 8 good years to gobefore major deterioration sets in. Deterioration is already in progress. Intime it gets worse interfering with my life even more. As it does it will affectme emotionally, cognitively and physically. I will at some point need outsidehelp like home care, day care, assisted living care and finally nursing homecare.

What should I do?

I faced this question 5+ ago. I am still looking for theanswer!

I first followed the regimen ofwhat is known as BEST PRACTICES: EatRight, Exercise Daily, Get Involved in Stimulating Intellectual, Social andCreative Activity, Take your Medication. It seemed to me this formula worked.Then that was shot down.

The shot came from The NIH(National Institute of Health) reporting in July 2010:

… there is currently no evidence ofeven moderate scientific quality supporting the association of any modifiable factor—dietarysupplement intake, use of prescription or non-prescription drugs, diet,exercise, and social engagement—with reduced risk of Alzheimer's disease. Theevidence surrounding risk reduction for cognitive decline is similarly limited.Low-grade evidence shows weak associations between many lifestyle choices andreduced risk of Alzheimer's disease and cognitive decline.

This seemed to speak “Ex Cathedra” as the Catholics ascribeinfallibility to the Pope. If you could not believe the major GovernmentalAgency that deals with Alzheimer’s Disease (AD) who could you believe.

Nonetheless I doubted. I have said it before on this Blog,before in this series: Too much of the effort behind the support for AD,Government and Public Support Groups, seemed so focalized on raising funds tofind the cure, and not much else, it was as though it were contrived. Nothing else would help AD, people with it,people affected by it; nothing is done to acquire economy in care.

When I see such one sided promotion my trial lawyerbackground kicks in and I start looking for hidden agendas, other purposes notstated, for purpose in non-disclosure of reason for this focalization

I have held positions and worked with the National Alzheimer’sAssociation and our local Alz.Assoc. I have served on a State Commission forre-writing legislation that apparently adopted by the legislature in Minnesota,but never signed by the Governor.

In all of my activities I have seen them go nowhere,everything going through the motions but never coming to completion. After thiscontinuing experience these past 5+ years I have concluded we are made a part,but no more than at a level of patronization. We are made to feel we areimportant, look like we are important and used for any flag wavingdemonstrations. We are just like a fascist directed crowd, waving ourselves asspecimens of this horrible disease, wearing purple Alz.Org T-Shirts, logoedwith AD, waiting on queue to make boisterous affirmation of whatever cause ofAD we are gathered for.

Having this disease is not demeaning enough. We are debased furtherby this aberrant use made of us, made to feel of no more account than we are aswe are shunned by all the normals who are not affected by this disease. Eventhe shunning has its source in the use made of us and in the publicity given itlike that of Harry John’s President and CEO of the National Alzheimer’s Association:

"Alzheimer's is a tragicepidemic that has no survivors. Not a single one," (1-27-11)

Who then went on to use the facts of the epidemic level AD isreaching to solicit more funding for research to obliterate the diseasealtogether. This is of course wonderful; ideal if a cure is close. But is it?When will it happen? Is the history of research such as to anticipate the likelihoodof this soon?

This takes me to the next thought I have been mulling over.That is the question: What is AD? Is it a specific disease? Does it have acommon cause? Are all cases of AD essentially the same? If they are differentsuch as Early Onset, genetically caused, fast acting, slow and plodding indevelopment, all have the same characteristics, same limitations produced inthe progress of the disease?

If there are differences is it reasonable to expect to finda magic pill that is a cure all? If this is not query enough, think of this!

There is little or no disagreement that all AD fits withinthe genus Dementia. There are a number of Dementias. The proposed Diagnosticand Statistical Manual of Mental Disorders V (DSM-V) lists thefollowing conditions that fall under the genus Dementia:

Please findbelow a list of disorders that are currently proposed for the diagnosticcategory, Neurocognitive Disorders. This category contains diagnoses that werelisted in DSM-IV under the chapter of Delirium, Dementia, Amnestic, and OtherCognitive Disorders. The Neurocognitive Disorders Work Group has been responsible for addressingthese disorders. Among the Work Group’s proposals is the recommendation that thecategory be divided into three broad syndromes: Delirium, Major NeurocognitiveDisorder, and Mild Neurocognitive Disorder.

S 00 - 11 Delirium

S 00 Delirium

S 01 - 10 Substanced-Induced Delirium

S 11 Alcohol Withdrawal Delirium

S 12 - 23 Mild Neurocognitive Disorder

S 12 Mild Neurocognitive Disorder

S 13 Mild Neurocognitive Disorder Associated with Alzheimer's Disease

S 14 Mild Neurocognitive Disorder Associated with Vascular Disease

S 15 Mild Neurocognitive Disorder Associated with Fronto-Temporal Lobar Degeneration

S 16 Mild Neurocognitive Disorder Associated with Traumatic Brain Injury

S 17 Mild Neurocognitive Disorder Associated with Lewy Body Disease

S 18 Mild Neurocognitive Disorder Associated with Parkinson's Disease

S 19 Mild Neurocognitive Disorder Associated with HIV Infection

S 20 Mild Neurocognitive Disorder Associated with Substance Use

S 21 Mild Neurocognitive Disorder Associated with Huntington's Disease

S 22 Mild Neurocognitive Disorder Associated with Prion Disease

S 23 Other Specified Mild Neurocogntive Disorder

S 24 - 35 Major Neurocognitive Disorder

S 24 Major Neurocognitive Disorder

S 25 Major Neurocognitive Disorder Associated with Alzheimer's Disease

S 26 Major Neurocognitive Disorder Associated with Vascular Disease

S 27 Major Neurocognitive Disorder Associated with Fronto-Temporal Lobar Degeneration

S 28 Major Neurocogntive Disorder Associated with Traumatic Brain Injury

S 29 Major Neurocognitive Disorder Associated with Lewy Body Disease

S 30 Major Neurocognitive Disorder Associated with Parkinson's Disease

S 31 Major Neurocognitive Disorder Associated with HIV Infection

S 32 Major Neurocognitive Disorder Associated with Substance Use

S 33 Major Neurocognitive Disorder Associated with Huntington's Disease

S 34 Major Neurocognitive Disorder Associated with Prion Disease

S 35 Other Specified Major Neurocogntive Disorder

[http://en.wikipedia.org/wiki/Diagnostic_and_Statistical_Manual_of_Mental_Disorders]

This introduces the direction I will next take with thistopic namely the confusion and ambiguity involved with AD in the professionalcommunity.

Can You See ME?

2011-11-29T16:12:00.001-06:00

The poem that follows appeared on Alzheimer's Reading Room this morning. It is on the mark. I also follow it with the comment I posted to it.
I am still working on my theme How to Face Fear with Knowledge. It requires research. It has to do with the professional community surrounding Alzheimer's World trying to categorize the class they assign to it in a workable definition to aid research in finding the cure. The more they can define what Alzheimer's Disease is not the more quickly they can refine the disease for research making it have less triggers that start or exacerbate it. This is helpful in finding the cure but does not do a damn thing for the person who has Dementia that does not fit in.

If the shoe doesn't fit you are screwed. Only Cinderella need apply!

Can You See ME?

I am sitting here withmy eyes open, though you speak as if I am not here.

I am here! Can't yousee me?

I AM still in here!

Touch me with yourhand, Please, my skin still feels. Rub my arm and pat my hand. I CAN feel you.I long for human contact.

I AM in here.

Talk to me. I am aloneand isolated in this chair. I am lonely but I cannot tell you. I feel helpless,I can't move by myself.

I sit here all daywith no stimulation, only the sound of alarms and intercoms.

I am bored! PLEASETALK TO ME!

This poem was written by Anne Marie a womansuffering from dementia. The poem was sent to us by Judy Berry, Lakeview Ranch.

Can You See ME

Read the poem “CanYou See ME?” then tell me why! Why is Alzheimer’s Disease (AD) treated likeleprosy and those of us with it shunned like lepers? This poem tells it likeit is.

Is there an answer for this? Is there any reason why?

We have allowed sensationalism to be made of our disease, trustedothers to make it's shock value such as to get response. That response iscontribution of money to find the cure. The shock value is intended to createfear; afraid you might get AD if it you do not contribute and make it go away.

In this way we are used and abused for no good coming to us. Onlythe ones getting a financial return from raising money are getting a return onthis characterization.

We are the losers in the poem. We are the losers because there isno hope. We get the disease; we are placed on the shelf where there is nonotice of us, no programs to help us maintain our functionality in the EarlyStage. When it is time for the “Home” nothing is done to keep the institutionalcost within reason.

Why? There is nothing that can be done but to keep us safe andthen be committed to the institution when this is no longer possible. This iswhat Dr Alois Alzheimer said in 1902. This is what too many professionals thinkand sat today.

Because of the fear of it as it is increases in number thenmelodramatically characterized as even worse no one wants to be in the sameroom with an untouchable.

How to Face Fear with Knowledge Part VIII

2011-11-27T18:49:00.001-06:00

[A note to my reader: I have reviewed the last seven installments and find I have committed some redundancy in what I have said. I see this particularly as I quote Harry Johns in this post and have quoted him before. I do have Dementia and those of us with it are given to redundancy. There's not a hell of a lot more I can say!]

When I joined the AD Club I assumed I would find a diseaseprocess about which there would be specificity and concrete recommendation onhow to deal with it. AD has a historyreaching back to 1902 when Dr. Alois Alzheimer first gave it his last name. Ithas been around longer than Alcoholics Anonymous (AA). At the time I wasdiagnosed with AD I already had 31 years of intimacy with AA. I was a recoveredalcoholic active in the AA program. I assumed I would find AD World much thesame as AA World.

I quickly learned how wrong this was. As AA accumulated amassive data bank about alcoholism and an equally large mass of data on how todeal with it, stay successfully abstinent and learn how to rebuild your life; Ifound nothing similar in the knowledge base of AD.

My doctor did the standard take this and I’ll see you in 6months. Giving him credit he did give me more than most doctors do. It is usually“take this and come back in 6 months or a year.” Giving my doctor the credit heis due, in addition to medication he told us what was out there able to give ushelp in dealing with it. He recommended I continue with the OccupationalTherapy I was getting at Sister Kenny Institute and that I get aneuro-psychometric evaluation that I already had on order.

I was set to dive in and take care of myself. I did it oncein my life with alcoholism; I knew the tools; I put them to work on AD. Withinthree days I was writing about it, then in a personal journal. My wife Dianeand I started calling around for help from Alzheimer’s Association and from anyexisting support groups that might assist.

My experience with AA was this: They knew what to do; theyknew how to do: they had specific guides and sign posts to follow in recoveringfrom the acute phase of Alcoholism. One of the key tools was attending AAmeetings. Equally important was their admonition: Turn your life and youraddiction over to the care of a “higher power” who could and would take care ofit for you.

I followed the rules closely and it produced a wonderfulrecovery of 31 years of sobriety now 37 years. I learned what works, what doesn’tand stuck with the plus side of that column.

Older brother AD had nothing of the same. In fact it wasdoing nothing but leaving us to swing in the wind with it. What few supportgroups there were 99% were for caretakers. I attended one early on, saw itthrough its limited run and tried to organize a permanent support group out ofit. I found no help from the people running the program nor interest in theother of those early stage afflicted who attended.

I continued the directions of my doctor. As part of my ofthe occupational therapy we were interviewed by the Neuro-Psychologist who Ifirst tried to see for a Neuro-Psychometric test but he was too booked up. Iwas nevertheless able to get in to have a consultation.

I arranged to have the narrative of the Neuro-Psychologistwhat had tested delivered to this second Neuro-Psychologist. I had it in hishands before the consultation and asked his office to have him review it beforemy appointment. I had the narrative accompanied by the test results a copy ofthe Raw Data taken in the testing process and all of my medical records senthim.

I had learned in dealing with Neuro-Psychologist andNeuro-Psychometric Tests in the Courtroom that the Raw Data was the mostimportant data to be reviewed by another Neuro-Psychologist. Reviewing the RawData a second examiner could interpret the test and validate or discount thefinal conclusions and diagnosis of the initial tester.

When we were in for the appointment this doctor took ahistory, said he had reviewed my neurologist’s records and the records ofOccupational Therapy including the driving test results and other testconducted by them. I asked if he had reviewed my Neuro-Psychometric recordsfrom Dr Holker who conducted my Neuro-Psychometric test. He said he was unawarehe had the records. He checked and found he had them but no one had told him.

He did a quick survey of these while we were sitting there,set them aside and said “I have as much as they had to offer me and do not needthem any further for this consultation.” He completed the consultation thentold me: “You do not have AD!” He went on to say “I can’t say what it is youhave. You have something that is some kind of Dementia. I could follow you, domy own Neuro-Psychometric test and see whether I can classify your dementia,but this I cannot guarantee. There are just too many Dementias out there to beassured I could find which one is the dementia you have.”

We elected not to have him follow me. His “Brouhaha” his quickconsultation and his cursory review of Dr Holker’s records of me including theRaw Data of the testing received review by him of no more than 2 minutes ifthat.

Knowing what can be done with this accumulation of data byanother Neuro-Psychologist from my experience with them in lawsuits I knew somuch could be done with them. I had no confidence with this character. I knewhe had no clue about this previous testing that had at least validated mycomplaints and should have been helpful. He was also too into himself and hisopinion to be impacted by the view of another professional. This position wasvalidated on return and review of it with Dr Terrell, my neurologist.

I went two years relying on Terrell and discounting the aberrantNeuro-Psychologist choosing to believe I had an atypical variety of AD whichaccounted for any difference in my symptoms for others at the same stage as me.

This lasted for 2½ years until I was tested by another Neuro-Psychologist.At the time I was seeing a partner of Dr. Terrell, Dr. Golden who was theclinics expert on AD. Dr. Terrell was the clinic’s expert on Stroke treatment.Dr. Golden wanted my condition updated and made the clinic’s Neuro-Psychologistavailable to me.

This third guy was not as arrogant and flamboyant as theprevious one but he did agree with the conclusion of the second guy. He did notagree with the first Neuro-Psychologist.

This threw me for a royal curve. “If not AD what the hell doI have, what should I do about it?”

I carried this question back to Dr. Golden. He told me the twoNeuro-Psychologists that followed

Dr. Holker were wrong I should pay them no attention.

He went on to say there were as many different kinds of ADas there were people with it. Not one of them is quite similar with any of theothers. Most Psychologists rely on an agreed set of symptoms adopted by theBoard of Psychologists. These are contained in the Diagnostic Statistic Manual (DSM)classifying all mental diseases into groups put there by their similarity ofsymptoms. This is periodically updated by the Board of Psychologists. Too manypsychologist rely on matching complaints of a patient to the list of symptomsthe DSM requires before making a diagnosis of AD. The DSM is rigid and too manypractitioners are equally rigid in trusting the results of the comparison andmatching as trusting their own clinical judgment.

He finished telling me I could rely on Dr. Terrell an experton stroke who could tell my problems were not altogether stroke related. Dr.Holker in turn made a very detailed study of me and came up with the same thingthe next two guys did, but called it properly atypical dementia of the Alzheimer’s Kind.

The field of medicine wants to be a science. In doing sothey must adopt tests, make measurements, analyze tissue all with an agreedupon format and a range of results agreed to be significant in determining whata malady a given result is.

This is wonderful if it works. But, in medicine there are somany gray areas of a kind best described by: “It could be this; it could be that!” It is inthis the practice of medicine needs to be above all an art form depending onthe expertise of the practitioner to take all of the data before her/him anddraw a reasoned conclusion in diagnosing the condition.

The definition that accompanies the disease of AD is prone toerror because it takes something general in character and tries to make itspecific to the exclusion of anything that does not fit within the confines ofthat definition.

This of course is a purposeful result of a specific agenda.Unfortunately it is an agenda that has nothing to do with treatment or care ofthe disease process. It has everything to do with sensationalizing the diseasein order to draw in contributions for research.

The disease is presented to the public in such dramatic waysto produce fear and alarm in the public about succumbing to it. As the peoplehaving it grows finding a cure becomes more urgent. The professional supportnetwork has maintained this melodramatic characterization to cause alarmintended to produce more funds in research.

This was dramatized by Harry Johns President and CEO of theAlzheimer's Association who, on January 27^th 2011, declared: "Alzheimer'sis a tragic epidemic that has no survivors. Not a single one!" He madethis statement which was accompanied by a journal giving the statistics of therampant growth of AD as it has reached epidemic proportions. He went on the saythere was nothing that could be done to arrest the disease or even slow itdown. The only way to control the epidemic is to eradicate the disease byfinding the cure.

This subject will continue in mynext post consistent with what I have been saying as part of this topic, namely:

My topic is Alzheimer’s Disease (AD) and/or Dementia. Myposition is this: In Advocacy and Definition of so much about AD Dementia issimply all wrong!

There are too many other schemes going into the servicing of theneeds of AD and those affected to produce competent and adequate treatment.

How to Face Fear with Knowledge Part VII

2011-11-26T11:06:00.001-06:00

My topic is Alzheimer’s Disease (AD) and/or Dementia. Myposition is this: In Advocacy and Definition of so much about AD Dementia issimply all wrong!

There are too many other schemes going into the servicing ofthe needs of AD and those affected to produce competent and adequate treatment.

When I was re-born inDementia World (namely diagnosed with atypical Alzheimer’s Disease) I wasappalled by the confusion in definition of what in fact is AD what is Dementiaand whether or not the two are the same, different, or one part of the other.

There was clarification of what it was that I had. I had anumber of limitations associated with dysfunction in parts of my braindisclosed by history and validated by testing. It included primarilylimitations in Executive Functioning, Multi-Tasking and Visual Perception.Memory and cognition had faults but were not abnormally low like the threepreceding functions.

In many ways my diagnosis told me what my dysfunction wasnot. It was dementia; it was not typical dementia; it was not typical AD. Thefinal conclusion was it was atypical dementia of the Alzheimer’s kind.

As a result I knew I had limitation in the way I functionedwhich produced limitations in what I could do and not do. I could not drive. Icould not ride my bike. I could not handle money or keep account of it. Ibecame too anxious in reviewing financial matters, became too anxious incrowds, felt intimidated when I was with normal people as I tried to keep upwith conversation, activity and normal social interchange.

At the same time my cognition remained good, my memory wasgood, my ability to read, to write, to speak publicly to generally care formyself with the help of my wife Diane remained good.

In the five years since diagnosis I have deteriorated some.I have difficulty finding words; my spelling which was near perfect has turnedatrocious; I tend to become more anxious in a variety of instances. One of theinstances is emotional upheaval; I cannot take it and get very depressed whenit happens.

It is really typical of the residue of stroke damage. I havea history of mini-strokes (TIAs). It is for this reason I chose the neurologistI did. He had treated me for these strokes, and his specialty is stroketreatment. I am however told by my neurologist and the first neuro-psychologistalthough it had earmarks of stroke the findings were more consistent with atypicalAD

Early on following diagnosis I was treated by a clinicalpsychologist who had specialty qualification in AD and Stroke. When I pointedout my cognitive acuity and questioned it as AD he told me I was justmanifesting a high cognitive reserve. He explained that due to my basicintellect which was on the high side, coupled with my education andprofessional experience I had a large cognitive accumulation. The diseaselikely damaged my cognition but there was a lot left after this which I couldwork with. This is what accounted for what appeared as undiminished cognitive ability.

This made sense. It made more senseas I followed the recommendations about how best to retain and or increasecognitive ability. I adopted the formula for enhancing cognition the rule knownas the BEST PRACTICES which consistsof this: “Eat Right, Exercise Daily, Get Involved in Stimulating Intellectual,Social and Creative Activity, Take your Medication.”

I have endeavored to follow each ofthese admonitions, the hardest of course, maintaining a consistent exerciseprogram. Reading and writing is probably the greatest of my involvement.

The writing I do on this blog andin other publication, which involves analyzing much of what I read has been anexcellent activity for me. I write almost 2 – 4 hours a day. I socialize andadvocate within AD circles. I attend the Gathering, an excellent one day twicea month program put on by Oak Knoll Lutheran church. I maintain my friendshipwith the four amigos, AD peers of mine. I do a lot of artwork, and work withand/or attend tours with two Art Galleries.

This not only helps me, it has mademe an advocate for the overlooked needs of Early Stage Dementia sufferers whohave been virtually abandoned by the professional community. Those, togetherwith the high cost of care and the absence of economy in care, have been thetwo issues that have sparked my passion as a writer and an advocate.

This has effectively given me a cause with which to finishthis final phase of my life. It could be depressing were I not to have it. Inhaving it and learning to cope with it I have learned what is truly importantin living. Before my diagnosis I was in charge of my future, I saw to myhappiness. This is typical of all of us. An adage of mine has been: “A young person wonders what she or he willbe. A middle age person strives at whathe or she has become. An old person ponderswhat was its worth?”

I never found satisfaction doing this; everything alwayscame up short! I crossed the river into Dementia World and this all changed. Irecognized in what I was doing I had found my purpose in being alive.Everything that preceded this was foundation for where I was and what I had toand could do with what happened. I dedicated the remainder of my life towriting about Dementia from the unique position I was in, namely on the inside!

This background leads me to my next subject which will be inmy next post. It will be a greater fleshing out of the two paragraphs with whichI started this post, namely:

My topic is Alzheimer’sDisease (AD) and/or Dementia. My position is this: In Advocacy and Definition ofso much about AD Dementia is simply all wrong!

There are too manyother schemes going into the servicing of the needs of AD and those affected toproduce competent and adequate treatment.

How to Face Fear with Knowledge VI

2011-11-25T15:48:00.001-06:00

Is It aDisease of “The Alzheimer’s Kind?”

Thoughts:

The practice of medicine is a formof art. It is a practice of seeking a solution to the reason for the symptoms aperson has by identifying its cause and treating both the symptoms and thecause.
Its method as executed by the practitionerof it includes his/her taking the entire history of the person suffering including the part of the history whichbrought the person in seeking medical care.
The practitioner than enters afterthe history a list of all of the possible maladies the symptoms could be.
The practitioner then orders any testsqualified to reveal facts about the complaints bringing the person in seekinginformation not otherwise evident from symptom history or manifested onpresentation or during examination. He/she also performs any tests for thedifferent maladies appearing on the list of what the problem might be.
Initially as the tests are able torule out any of the maladies they are removed from the malady list.
The practitioner then consults andtakes note of all the medical knowledge available concerning the history andcomplaints and the test results along with the practitioner’s own knowledge andexperience concerning the suspected maladies.
Once all of this is completed thepractitioner will then go back to whatever is left on the malady list nototherwise eliminated and consider anything left as a likely candidate forcause.
From all of this the practitioneris then able to analyze all of it and form a conclusion defining the problem soit can be treated accordingly.
Based on the foregoing procedurethe practitioner can also make a diagnosis by default using whatever is left onthe list of maladies.
The key to a good diagnostician inthe practice of medicine is having an analytical mind that can take in all ofthe facts and circumstances and make a reasoned decision about what theysignify, if anything.
In more recent time the medicalfield has been inundated with scientific tests that purport to give exactmeasures in the results of what they test.
These aids have been most helpfulfor those using them as an assist. They are fatal to the practitioner whorelies on them and nothing else in the symptom collage the patient presents.
The unfortunate turn of events thathas accompanied this testing availability is too many practitioners and most ofthe public see the practice of medicine as a science. They expect of it theexactness the system of science often is. They cannot tolerate the ambiguityoffered by the dubious practice of an art form which in fact medicine is.
They want answers. A “could bethis or could be that”, or, “take this and call me in the morning” are notsatisfactory.
As a result more practitionersrely on dials and dip sticks rather than their training and experience.
It is in this that the Diagnosisby Default often occurs. The malady list, after all other possibilities areruled out, can be determinative of diagnosis. Under the rules of “Good MedicalPractice” and within the definition of “Medical Certainty” whatever remains on themalady list of can diagnosed the cause of the symptom complained of.
No independent knowledge or factneed exist to qualify this as a reliable reason. The medical schools call thisDifferential Diagnosis. It is taught in the first year as the primary tool fordiagnosis disease. If the formula if followed flawlessly the practice ofmedicine says what remains is IT!

It is in this framework we haveexperienced the following:

A 110 year effort to classify alldementia that can be called “of an Alzheimer’s Kind” into one illness. Each persondiagnosed as stricken with it must have a similarity of symptoms to those theprofession has predetermined to be the symptoms typical of one with Dementia “ofthe Alzheimer’s Kind.”
This reduces down to making adiagnosis of inclusion. It reduces the symptoms that might fit. It makes asurer diagnosis. It makes the class of the disease far more workable for theprofessionals.
This leaves the rest of theDementias in the class of exclusion by default. It makes no determination as towhat the symptom collage might be; it determines what it is not and leaves itswinging in the wind right there.
The purpose of all of this is totry and find the cause of the disease they have crowned with a name. The fewerdifferent symptoms involved the more likely one mechanism can be discovered tobe the cause and this be attacked with a magic pill if and when one isdiscovered.
This does nothing for the rest ofthe Dementias or the people suffering a similar disease that does not qualifyas AD. Theirs is just as intrusive and damaging a disease. It produces the samelimitations. It requires the same attention. It needs the same caretakers andsupport symptoms. It will affect families, communities and our country in allof the same ways.
Its only difference is it is not adisease of “The Alzheimer’s Kind” and therefore does not qualify for a name, supportor and concern whatsoever. It doesn’t count!

How to Face Fear with Knowledge Part V

2011-11-22T19:26:00.001-06:00

(We Have Come so Far these Past 80 Years, NOT!)

I AM USED, ABUSED,BUT MOSTLY CONFUSED! That is my view five years down the road to greater envelopmentin Dementia World.

The articles listed below which I have posted on my archiveeach deal with the next phase in my discussion.

Click on each to go to my Archive to read them.

1. BroaderDefinition of Alzheimer's Could Help Doctors Diagnose it Earlier

2. IsAlzheimer's disease really curable?

3. Alzheimer's:What if there's no cure?

That phase of my discussion bears on what to do until acure is found for Alzheimer’s Disease (AD) and/or Dementia? The articles go astep further suggesting a cure may not be found. What then? The question thenbecomes even more critical!

To add to the discussion I refer you to How to Face Fear withKnowledge Part III which discusses a post to my archive entitled Challenges AcceptedApproaches to Research in Senile Dementia (Alzheimer’s Disease. It is the context of these article and others like it that cause greatconcern in me. This together with what I consider the hidden agenda of thegovernment and public support groups create my need to speak out.

We with the disease, our familiesand those who care for us, suffer more consequences of this disease than wedeserve. We face an extremely unfair and high cost for care not given by ourfamilies. These costs produce profit for investors and drain our funds tonothing. If we received some of the attention given to raising money for thecure, if attention were also paid to efforts to find economy in care, we couldall be better off.

It is costing us now. This willaccelerate as the numbers with the disease increase exponentially. A quantitativeincrease will result as diagnosis is made earlier and as the “Boomers” entertheir senior years as they have this year. Boomers will be reaching age 65 forthe next eighteen years.

Costs currently are confiscating ourpersonal funds. Once we are wiped out financially we will go on the “Dole”collecting public funds to care for us. As the number of those afflicted increase,this will obliterate public funds to the point of exhausting all backup fundsfor care.

This is serious! Absolutelyserious, as we blindly follow yesterday’s path which led to nowhere andcontinues leading to nowhere now. It seems folly to apply more funds to researchuntil the researchers produce some concept of cause of the disease more thanthe assumptions currently made that have produced no result in the past 20years.

Is the foregoing no more thanposturing?

I have been on watch for the pastfive years since my diagnosis.

Fortunately I can still read, understand, analyze,draw conclusions and write about it. I have served on the National AdvisoryBoard during 2008-09, appeared part of a panel before a joint fact findingmeeting of the National Alzheimer’s Association and the Federal Agency on Agingin 200; I have been active at the local level of MN-ND Alzheimer’s Association andI served on a committee appointed by Minnesota’s Governor to draft legislationfor an overhaul of services for AD in this state.

Throughout all of this involvementand all of this work I have become convinced that those of us with the disease who are called on to participate are called because we are specimens; we are something to wave as asensationalized flag, piping “this guy has it, if you are not careful you willget it too, unless you give us money to fund research to find the cure, and wecan make AD disappear.”

It is in this I feel very used, andabused by the use made of me and my disease. I have been interviewed by media locally,nationally and always my plea has been, give us more programs, more help, concentrateon finding Economy in Cost before we all individually, as a community and as acountry are broken financially.

The four articles noted and posted are rife with statements ofthe futility and subterfuge of public support and governmental activity to dealwith AD. They but deal with one issue, money on more money. “We do not havetime for programs; we can do nothing about cost” they say. They say this as wesuffer the cruel reality of it.

When we start to recognize the subterfuge of it, the usemade of us to sensationalize their efforts, the way we are exploited, it is nowonder that we are shunned and abandoned in our community and circle of familyand friends. As Dr. Alzheimer’s said in 1902 and doctors continue to say in2011, “There is nothing we can do for them but keep them safe andinstitutionalize them when that is no longer possible.”

I quote from the four posted articles as a “teaser” of whatcontent they have:

Although intensely investigated over the last three decadesusing cutting-edge technologies, the “pathogenic cause” of Alzheimer’s diseasehas not been found. While many research “breakthroughs” have been claimed andhigh-profile drugs trials carried out, why does the promised “cure” still seemto elude scientists?

[How to Face Fear withKnowledge Part III]

For the first time in 27 years, healthauthorities have expanded the definition of Alzheimer's disease.

The change, announced last week by the National Institutes of Health andthe Alzheimer's Assn., is intended to help doctors diagnose patients in thevery early stages of the neurological disorder, including those who have yet todevelop any outward symptoms. The new approach could ultimately help millionsof older Americans spend more years with their mental faculties intact.

By the time a patient becomes demented, it is"too late" for medications to be of any help, says William H. Thies, chief scientific andmedical officer of the Alzheimer's Assn. in Chicago. So researchers are tryingto develop drugs that could slow the progression of the disease, for whichthere is no cure.

[Alzheimer's:What if there's no cure?]

The decision by health experts to separate Alzheimer's disease from age-related dementia and deem itpotentially curable "opened a Pandora's box" and may have misdirectedresearch for decades, a team of scientists suggests in a new analysis of thefield.

Despite great efforts to find treatments tostop or slow progression of the disease, there are only a few medications forAlzheimer's disease and they only help mitigate symptoms, not the diseaseprocess.

[IsAlzheimer's disease really curable?]

Dr. Ming Chen at the University of South Florida suggeststhat "tremendous social pressures" have pushed scientists to targetAlzheimer's as a curable disease. Despite all the research, however, they saythe cause of the condition remains unknown and "there seems no majorprogress expected any time soon." The researchers are not proposing giving up on treatingAlzheimer's. In fact, just the opposite: They believe scientists should refocusefforts from searching for an underlying villainous pathogen to manipulatingneurotransmission in the brain.

In other words, to deemphasize the quest for acure and to look instead for effective prevention and treatments that focus ondementia as part of the aging process. They stress the importance of controlling risk factors, suchas diabetes and hypertension, that are believed to make peoplemore vulnerable to developing Alzheimer's, and energizing the aging brainthrough social activities.

As the baby boom generation ages, dementia willbecome a larger social and healthcare problem.

Scientists would be remiss if they weren'tconstantly reevaluating their mission and direction and reconsidering fundingpriorities. They should certainly seek more effective treatments forAlzheimer's, and there's every indication that they are

[BroaderDefinition of Alzheimer's Could Help Doctors Diagnose it Earlier]

How to Face Fear with Knowledge Part IV

2011-11-20T09:02:00.001-06:00

Quality of Life IS Possible After a Diagnosis of Dementia

So says Judy Berry on life after dementia. Judy is theoperator of Lake View Ranch in our state. She has national recognition forrunning an operation caring for the difficult behavior patients afflicted withDementia. Click on the title to go to the Judy’s article on Alzheimer’s ReadingRoom or click on Archive to read it there.

Judy starts the article with a number of key affirmations thatcaught my eye:

Importance of earlydiagnosis. It is EXTREMELY important for anyone experiencingany of the symptoms of dementia, for example, memory loss, confusion,personality changes--to seek an appropriate medical diagnosis. Somediseases--uncontrolled diabetes, some thyroid conditions, medication sideeffects and many others--mimic symptoms of dementia, yet are completely curableand reversible.

Moreover, the early diagnosis ofAlzheimer’s disease, vascular dementia or other types of dementia facilitatesearly interventions that can maintain the highest possible quality of life andconsiderably delay the onset of debilitating symptoms.

Dementia as a familydisease. As along-term caregiver for my own mother, I absolutely understand the tremendous disbelief,denial, frustration, fear, and anger associated with being a caregiver forsomeone with a disease that appears to rob us of the person we have known andloved because they lose the ability to communicate in a way we understand. Iknow first-hand how hearts are torn and emotions worn thin trying to deal withfeelings of helplessness and hopelessness. Dementia is a family disease: as acaregiver or family member

She then goes on to advice for caregiving which is good in allcases, superb when dealing with behaviors that are difficult to happen. Thereis so much that can be done for us at all stages other than dealing only withthose in Early Stage.

Judy’s Lakeview Ranch operation concentrates on this and offersthose who would not otherwise have quality of life a full quality of life.Her’s is affirmation and direction in the field of the many needs we have inliving day to day that are currently so vastly overlooked.

In my next post I should get back to what I said in my lastpost, namely:

“This leads me to the next topic I will deal with in my next post.Well-meaning as all of the professionals are, particularly the fund raisers,something fundamental seems awry. I have believed a silent agenda exists thatis the reason for the singular approach of the Alz.Assoc. I am deeply troubledby the sense of being used as one afflicted with this disease. We are listenedto appointed to serve in an advisory way on a variety of boards, but we are notheard. We are patronized, patted on the head and made available to the media togive personal testimonials in the nature of “A Day in the Life of One Afflictedby Alzheimer’s”

How to Face Fear with Knowledge Part III

2011-11-19T12:49:00.001-06:00

Alzheimer’s Disease, since first identified in 1902 by DrAlois Alheimer, was not then understood. It is not understood much more today.Generically it is a name given to common symptoms of brain damage or braindysfunction that starts out gradually and progresses to the point that it takesthe mind then the body and then the person afflicted with it. When it is donewreaking its vengeance the person dies.

It falls under the class known as Dementia. There are otherkinds of Dementia, the most numerous diagnoses is of those said to have AD. Theprocess is nonetheless the same. The brain and the body go than goes the personwith it. In the later stages little can be done for the person with it otherthan trying to make that person comfortable. In the earlier stages much can bedone to secure the person afflicted with a good quality of life, and keepher/him functional and out of institutionalization as long as possible. Thisadds to quality of life and saves society the cost of care which is intolerablyhigh.

The history of AD treatment and diagnosis is checkered.Until the late ‘60’s and early ‘70’s little was known or discussed about it. Itwas an old people’s disease, contracted only by the person old enough to haveit, and then it was considered more likely senility, a simple aging breakdownof the brain’s ability in cognition. No great attention was given it, if youwere “lucky” enough to live long enough it is something that came with that geography.

In 1970 the numbers grew enough to create concern in the professionalcommunity. As related by a charter director of the National Institute of Health(NIH) in an address of his I attended he stated that it was around this timethe government started to fund the NIH with the directive that they deal withAD. Getting into the field the NIH found research deficient as toidentification of the mechanics of AD and/or how to deal with it from a carestand point. They were particularly concerned about the total absence ofknowledge about what happened in the body to bring the apparent brain celldamage about, and how to arrest its progress in doing that.

He explained that the NIH did not have the mandate to do research.Research of AD was horribly deficient. They could not expend their funds to doresearch. Therefore, in conjunction with another group trying to form a groupto deal with AD, they formed the Alzheimer’s Association. They gave it thedirection to become involved in raising money to fund research on AD.

Very quickly the funding activity narrowed to that ofraising money to find the cure. This is why they were formed; (according to therep from NIH) this is what they were charged to do. They have been doing thatever since.

I was floored when I heard this. I have found nothing tovalidate this statement and serve as another source until doing research forthis article. I found a published article entitled New Study ChallengesAccepted Approaches to Research in Senile Dementia (Alzheimer’s Disease). Youwill find it in my Archive by clicking on the title.

Noteworthy portions of the article said the following:

In an effort to address this question(the author’s) undertook an independent and systematic analysis of theunderlying research assumptions against the established scientific principles. This analysis led them to hypothesize that perhaps the main problem is the research community’s perception of the disease.

…the authors suggestthat when the National Institutes of Health separated out dementia from othersenile conditions and redefined it as a distinct and “curable” disease —Alzheimer’s – in the 1970s, it opened a Pandora’s box and may have misdirectedresearch for decades. It triggered the search for pathogenic factors andcures, and disregarded the role of demographic change and its diverse endresults in the elderly.

The authors argue that senile disorders – diseases occurringafter age 60 and eventually affecting the majority of the elderly, such astooth, hearing or memory loss – are caused by aging, thus differ fundamentallyfrom distinct diseases by origin, study paradigm and intervention strategy…

… “Lifestyles and other risk factors are the key. So we think that senile dementia may be explained by ‘advanced aging plusrisk factors.’ This model points to a new direction for prevention. This means we must support the elderly in healthy lifestyles. And weshould develop medications to extend the lifespan of old neurons, ratherthan looking for ways to inhibit far-fetched ‘pathogenic’ factors.”

…Since they have not taken into account the fundamentalroles of aging and risk factors, it is clear that these theories, though highlyappealing to the public and researchers alike, are of little relevance to thescientific nature of senile dementia.”

“The two overwhelming concepts, senile dementia as adistinct disease and the Ca2+ overload hypothesis, have effectivelyblocked any meaningful progress in senile dementia research, and have inhibitedthe self-correcting mechanism of science,” concludes Dr. Chen. “Anindependent scrutiny on the field may be helpful.”

The agenda of the Alz.Assoc to raise money to fund researchis a wonderful mandate to follow.

Nevertheless it should be stated bythem openly instead of sensationalizing the disease as they do in an effort toraise funds. Each of the state satellites of Alz.Assoc is charged with raisingmoney, was required to pay over 40% of what they raise which has now beenincreased to 60% I have read . (See: TheLocal Versus National Alzheimer's Presence by clicking on it and go to myarchive where I have an article discussing this by a person from Wisconsin)

Not disclosing the cut and thesingular agenda raising funds is tantamount to fraud. Worse than that it isexploitation of those of us with the disease to work for the funds and wave ourlimitations before the public.

Never do we hear from the Alz.Assoc “Let’s help out thefolks afflicted by the disease remain functional.” The absence of such commentsand the further absence of meaningful programs for early stage validate this.There is no attempt to attack the cost of institutionalization or find economyin care. They are just too busy with fund raising activities.

Some local chapters becoming aware of this discrepancy inactivity have been withdrawing from the Alz.Assoc and refusing further fundingto them. This seems be heard because all of a sudden we are seeing activitystarting to fill this gap.

As recently as January 27^th of this year HarryJohns President and CEO of the Alzheimer's Association made thefollowing comment as a news release:

Alzheimer'sis a tragic epidemic that has no survivors. Not a single one,

As part of that release he went on to say, almost quotingAlois Alzheimer, there is nothing we can do for them but keep them safe andmake them comfortable when finally we must institutionalize them. Based on thissupported by a publication of the Assoc. that stressed the numbers and thecoming epidemic level that AD will reach, he stated only option to stave of thenegative affect is raise more money to find the cure.

In my career as a trial lawyer I have heretofore stated Ilearned a lot about medicine. One case I handled in upper New York State was thatof a child with a pre-natal developmental disorder. My friend the doctor whoworked with me put me in contact with one of the top experts in the country atHarvard. His field was Pre-Natal Developmental Disorders. I retained him, senthim all the information he needed and asked his advice and direction. I wantedto know what I was dealing with.

He told me there were as many different pre-nataldevelopment disorders as there we children born with them. Each one wasdifferent than the others. The medical practice dealing with them tries tocategorize them under similar symptoms. He used Down’s syndrome as an example.Everyone believes this is one illness. It is not, each one is different. Thereare similarities like so-called Mongoloid eyes, short lifespan, limitedcognitive ability etc. But each one is different from all the others. Thesedisorders do not have a singular source of cause and singular way of treatment.

I remembered this when I encountered AD. It seemed to me ADwas as generic as Dementia. The fact the Dementia included AD, this made itlarger in number than AD but little else made each person having it differentfrom all the others. It struck me that it each case has no common cause. Someof the causes are genetic predisposition, early onset, later onset, different limitationand different courses of the disease.

How could the professionals hope to find one medication thatwould get at the core of the cause of the disease in order to put an end to it?

This leads me to the next topic I will deal with in my nextpost. Well-meaning as all of the professionals are, particularly the fundraisers, something fundamental seems awry. I have believed a silent agendaexists that is the reason for the singular approach of the Alz.Assoc. I amdeeply troubled by the sense of being used as one afflicted with this disease.We are listened to appointed to serve in an advisory way on a variety ofboards, but we are not heard. We are patronized, patted on the head and madeavailable to the media to give personal testimonials in the nature of “A Day inthe Life of One Afflicted by Alzheimer’s”

How to Face Fear with Knowledge Part II

2011-11-18T18:38:00.001-06:00

In my professional career, that of a trial lawyer, I learneda lot of medicine. Particularly in the ten years I was National Counsel forthird largest chemical company in the world. It was in that period that I had aDoctor with certification in the field of Industrial Medicine who was assignedto give me 100% of his time. He was charged with teaching me the medicine ofeach case we handled, researching the medical issues of each case andconnecting me with the top specialists in each field of medicine to help and totestify on the medical issues raised in the case.

We travelled together from state to state, case to case, andhad a lot of time to discuss medicine. I took advantage of the source andlearned all I could. It was this background and training and the balance of my43 years of practice with which I came to this new world of Alzheimer’s Disease(AD).

When I arrived I was appalled by the confusion in definitionof AD, the explanation of what it was that I had. Definition was all over theboard, supported by the biases of the person having an opinion and giving adefinition. It also seemed loaded with hidden agendas.

I did the usual thing I did then and continue doing now. Itotally immersed myself in the field participating in every way I could. Whenfirst diagnosed my wife Diane made contact with our local Alzheimer’s Chapter. Asfollow up I met with an officer who had recently been appointed and chargedwith organizing their outreach program.

Starting there I was put in contact with other’s carryingthe same diagnosis as mine. Soon I was participating in a meeting given toinvestigating ways and means of helping people diagnosed in the early stages ofthe disease. Most of the social service groups in our metro area wishing to provideservices for us were in attendance. Those of us with AD were there as the real livespecimens.

We learned a lot. Out of those meetings I met 3 other guyswith AD who participated. We started to pal around together and formed asupport group of the four of us and our wives our caretakers. Three of us wereex-lawyers, the fourth an officer with an international construction company. Above is a picture of us showing the "Three Amigos." First is Jerry, second Earl, I am on the right. At that time our number dwindled to 3 Alan, the fourth having deteriorated very quickly and had to enter a Nursing Home. His disease had the genetic component which in his case produced a whirlwind of deterioration. The others of us are going more slowly.

We were contacted by a representative of a group who did DayCare Programs. She met us at the meetings held at Alz.Assoc. The particular DayCare Program was conducted at Oak Knoll Lutheran Church in Minnetonka. It wasknown as the Gathering. It was operated by a Lutheran Group formed by congregationsin the metro area. We were told it would suit us well, geared to Early Stage folks.We became involved and found it was no more than a baby-sitting service.

Not given to sitting back we objected and started meetingwith the director. I was one; the construction guy was the other. Our point ofobjection was the operation was geared to mid and late stage AD, not to thoseof us in early stage. For us sitting in a chair doing exercises, watchingreruns of “I Love Lucy” having one of the volunteers go through the morningpaper explaining the news articles and a variety of other infantile activities wereboring and insulting. They were not consistent with the program as representedto us when we were asked to join.

The director had us meet with all of the volunteers todiscuss our concerns. I am pleased to say they all heard us and started tomodify the program. They also invited us to join in the program planning whichwe have done enthusiastically.

That was more than three years ago. Now the program isexcellent and every one of us looks forward to attending every other week as itis scheduled. There is plenty of activity involved in the meetings, thatinclude field trips, one of our favorites is going in group to a program called“Feed our Starving Children” which prepares and packages food for starvingchildren in Africa. We go there and spend a half a day packaging the dried foodfor shipment.

We are offered the opportunity to conduct programs as well.I am actively involved doing computer art. Jerry, the construction guy, and Iput together a program demonstrating doing art on computer with Photo Elements,an easier form of Photo Shop. We arranged computers for everyone and we went towork as artists.

One of the volunteers is an active graphic artist. He oftenleads us in activities in the graphic arts. We have 4 year olds from the daycare program conducted by Oak Knoll come in every time we gather and spend anhour with us. Each child brings a craft. We work one on one helping themcomplete the craft project.

Wehave grown to love these kids. Last Christmas we put on a Christmas party forthem. We had games, a little gift exchange, trimmed a little Christmas Tree andI gave each of them a copy of my children’s story entitled “How Philip theFirefly Saved Christmas” which was also read to them at the party. For anyoneinterested the book is available on amazon.com, click on HowPhilip the Firefly Saved Christmas to go to Amazon to look at it.

For May Day we puttogether a program for the kids making May Baskets. We put together a simple papercup, silk flower and pipe cleaner kit for each of the kids and they made this:

Jerry built a MayPole and we conducted a May Pole dance with the kids:

My purpose in detailing the Gathering is this: It fits ourneeds so well. It came from our involvement in working within the system tohelp ourselves and getting the system to help us. In the five years I have beeninvolved in AD World I have seen many changes for the better. Nonetheless thereis so much in which they are missing so many good things that can and need bedone.

This introduces the next phase of my topic. That is thehistory of what has not been done and the confusion I have for one person as towhy this happens to be.

How to Face Fear with Knowledge

2011-11-17T12:34:00.001-06:00

I was diagnosed with Alzheimer’s Disease (AD) in 2006. Theonly quasi objective testing conducted was a simulated driving exam I took at theSister Kenny Institute at Abbott Northwestern Hospital in Minneapolis MN whereI live. Outside of that test the neurologist we consulted finished ourinterview that included his taking a very detailed history with a diagnosis “Youhave AD!” The neurologist we saw was the one who treated me for two of the fiveor more mini-strokes, (TIA – Transient Ischemic Attack) I had. We went to himfully expecting a diagnosis of some Dementia from the TIAs.

Both TIAs for which I sought treatment involved thetemporary loss of sight in my right eye. Amorosis Fugate they called it. Theother three TIA’s I was conscious of occurred prior to the two affecting myeyesight.

Having dealt with the Neuro-Psychometric Test in lawsuitswhen I was a trial lawyer I knew immediately I wanted one. In fact knew it sowell that I had set it up and had it scheduled before I saw the neurologist.After sitting through 4 – 5 hours of neuro-psychometric testing, after theevaluation of the “Raw Data” by the Neuro-Psychologist by the name of ErinHolker, at the U of M Hospital she diagnosed me as having atypical dementia ofthe Alzheimer’s kind.

In the course of reading the exam results she ruled outother dementias including vascular dementia which I expected it to be. Shediagnosed it as atypical because I did not have the memory deficit typical ofnormal AD. There were other limitations, such as, very low score inMulti-Tasking, Executive Functioning, and Visual Perception, giving cause toassessing the problems described in my history as AD. It wasn’t limiting enoughon memory to be able to call it a typical AD.

My wife Diane and I left the hospital continued on testingand another consultation with the neurologist, Ron Tarrel, startedtaking Namenda and we were off on our merry way to learn what we could about ADand what we should be doing about it.

It with on this undertaking that we entered the Sea ofConfusion about AD.

The first element of confusion in what I had been diagnosedas having. I had a second neuro-psychometric a couple of years later to markprogression of my deterioration. This time we went to the psycho-neurologist atthe clinic where Tarrel practiced and where the neurologist I switched to inthat clinic practiced. I switched to Dr Richard Golden,who was considered the AD expert in our area.

After the second Neuro Psychometric exam the NeuroPsychologist said I probably did not have AD although he could not rule outA-Typical. I received another negative determination from a Psychologist,considered the expert on AD in the Abbot Northwestern (aka, Allina) system,shortly after the exam at the U of M. I very carefully made sure this secondneuro psychologist had the test results and the raw material taken down intesting. I wanted him to have the benefit of what was done when I couldn’t getinto see him earlier, which prompted me to go to the U of M to an examiner whocarried an excellent reputation.

When I saw this second guy who started sounding off with mywife and me, I asked if he had received the material from Dr Holker. He didn’t know.He did know that he had not reviewed it. He then checked and found it in myfile which he supposedly reviewed before his exam of me.

I suggested he take the time to review it. He said he didnot need to, he could see enough from Dr Terral’s notes and the corresponding history.From that without further history from us he could conclude I did not have AD.I had dementia but it was not AD.

I left this guy quite upset by his supercilious review andoff the top of his head diagnosis. I gave no credence to it whatsoever. Thentwo years later, the second exam and the same diagnosis this put me in a quandary.I had gone quite public with my disease advocating, speaking and writing up astorm about my experience having AD. If I did not in fact have it as twopractitioners now opined, was I perpetrating a fraud with all who listened tome and read my material?

I therefore went back to Dr Golden who had ordered thesecond exam and who had reviewed both the first and the second. I wanted toknow was I duping all who listened to me or read my material presented from thefoundation of someone experiencing the disease and able to relate theexperience and write about it.

Dr Golden said I should pay no attention. Everyone in thehealth care field wanted definitive findings before declaring they were AD.Diagnosis is still an art form not a science. Based on his background,education, treatment of patients, etc. he put it altogether into making adiagnosis. He went on to say there are as many different kinds of AD as thereare people who have it.

He said everything I have fits an AD diagnosis. Keepwriting, keep speaking and pay no further attention to experts spouting awaydemanding absolute criterion before diagnosis. This put me at ease on issues ofhonesty, but still left me swinging in the wind.

I am so different than my peers with this disease. This continuallyputs me in quandary. My cognitive skills remain fairly intact; I read well, Iam told I am a good writer. I can speak and retain organization of what I havesaid and want yet to say. I have been writing almost daily the past four years.My writing skills have improved telling me I am learning from what I am doing.

Time and again I am told “You can’t have it, you are just toowith it to have it!” This is disconcerting each time it occurs and always putsme into the dilemma I periodically have with my diagnosis.

I still have the limitations I had when I started this path.I am prone to fall. I did so recently, simply lost my balance. It took multiplesutures to stop the flow of blood. I still can’t handle money well, can’t keepa check book, can’t drive or ride my bike; I can do but one thing at a time ifI try more I lose my way on both tasks. I do forget, not nearly as bad as otherof my peers but it is progressing right along.

Nothing has changed and I am severely limited from the guy Iwas who conducted a National Trial Practice, managed and office of 60, spentten years living in hotels and airplanes doing my trial work across the countryand managing my office by telephone and fax. A good trial lawyer needs to beable to balance many balls in the air all at once and continue to be up on thecase he is trying. I was a master at this known as Steel Trap Jaws, so-called becauseI never let anything slip by.

Now, all of this is way beyond me…

What I have written is prequel to my primary topic whichwill be covered in the posts that follow. The topic will be that of the screwedup field of AD Advocacy and Professional Definition of what in fact AD is.

It is my position that there are too many other agendasgoing into the servicing of the needs of AD and those affected to allow themaking of a competent and adequate treatment plan.

I have posted anarticle by Deepak Chopra entitled: Alzheimer'sDisease: How to Face Fear with Knowledge (Part 1). In the essay Chopradescribes what AD is in his view. The article is well written, fits themainstream of opinion on AD and is a good starting point. I will follow withissues raised with the so-called mainstream view.

Help for those who need it, Where is it?

2011-11-14T16:11:00.001-06:00

A person posted this on a bulletin board I follow:

Hello,

I just finished reading Still Alice, by Lisa Genova and found it very
helpful. My husband was diagnosed with Alzheimer's last spring. He is taking
Namenda and seems to be stable most days.

I thought I could join this group onhis behalf because he doesn't do computers/e-mail, but is very open to discussinghis condition and willing to share. Right now we are experiencing very littledisruption in our daily life and we are grateful for the early diagnosis andmedication which seems to be "helping".

I think Genova's message about the patients themselves needing support is valid.There seems to be much support for caregivers (which I don't even considermyself as YET), but no dialogue for the ones who have it.

Thanks for this opportunity. Mary

I answered this post in the way that follows thinking bothwould be excellent for a post today.

I have been delinquent in posting the last few days. My wifeDiane and I have come down to Texas from Minnesota to spend three months tohelp our youngest who is at the age of 37 pregnant for the first time. She iscarrying twins as she and her husband are here on an assignment that has Chris,her husband, building a building complex for a company client from Wisconsinwhere the kids live.

In a new place where they know no one we figured it makesense to come down and help out. This was a good reason. It also served as awonderful excuse to come down and get into the action.

Because of the business I will not be posting as much as Ihave. I will keep up some regularity.

My Post back is as follows:

Hi Mary; Your observation is righton! I am one with Dementia. Like your
husband I am very open to discussing my condition. In fact take a look at
one of the discussions I conduct by going to the Blog I write and post on
often.

Named: My Alzheimer's Afterthoughts you can find it at: <http://im-mike.blogspot.com/> .

My concentration is on what needsto be done for those of us not pre-buried in the "Home." We can stayout of the "Home" with help. My second concentration is on the Costof Care. It seems in our profit intensive society the fat cats are taking allthe money for establishing service for us, so much so there is nothing left to paythe help and we end up the ones screwed a second time by the conditions of our disease!

My primary topic centers on the need for services for those of us with
dementia at home who are yet somewhat functional. We need the help we can't
provide ourselves and our loving caretakers can't because they have their
hands already full beyond belief.

Many kinds of help need to be organized for us. The kind we need are those
that involve exercise, eating right, activities and programs stimulating to
our brain in the arenas of intellectual, creative, and artistic. These do
wonders for us as does simple social activity. Social activity is best with
our peers who our limited as we are. We do not need to keep up, instead, we
can socialize in a laid back atmosphere.

This not only enhances our own quality of life and that or our caretaker, it
has the proclivity to prolong our time in which we are functional in the
early stages. This is a huge factor keeping us out of the "Home" andsaving
the cost all around.

You are dead-on in your comment

Genova's message about the patients themselves needing support is valid.
There seems to be much support for caregivers . but no dialogue for the ones
who have it.

I believe this to be so true throughout the country. We the so-called
Demented have become the next generation of those to be shunned by our
culture. We were preceded by those with aids, before that I do not recall
other than by generation we hail back to the "Lepers" of history. The
shunning we get at all levels, including professional and family, is both
unbelievable and unbearable.

Dealing with Dementia from the Heart

2011-11-11T17:08:00.001-06:00

There is something engaging in reading about a more thansensible program. Initially published in the AARP Bulletin, posted in myarchive the article RestoringMemories Through Movies is so basic at the same time it is such a greatidea for a program. Click on it to go to my archive to read it.

The article describes program as simple in its aspect as “Let’sgo to the Movies!” It is something we grew up with. Many of us can recallpaying a dime to get in to see “the Show”, 12 cents, if you are 16 or over. Itwas probably less before but this is beyond my life’s memory.

The program is not just going to see a movie. It includessocialization, such as, singing along with popular theme songs in the old movie.It includes getting out, sharing an event with others, contributing to theevent, getting a kick out of doing it, lacing an otherwise routined life with a unique enjoyable event along with ahost of other benefits.

To interject my experience:

I attend a so called day care activity every other weekcalled “The Gathering.” It provides aprogram where the volunteers running it and those of us with Dementia planactivities together for each time we meet. We haven’t done the movie bit buthave done other group activities involved with arts, crafts, cognitive and intellectualactivity and the most enjoyable, Field Trips!

As a group we have volunteered at “Feed Our StarvingChildren” a local division of a larger group packaging and supplying food for starvingchildren in Africa. We split into teams to do packaging for shipment while weare there.

We have gone and taken in the beauty of the Arboretum inMinneapolis, operated by the U of M Horticultural Department and volunteers.

We have done art work at an art lab at Walker Art Institutealong with touring it with a Docent filling in what we see but don’tunderstand. This is quite helpful in a gallery dedicated to Modern Art. The MIA,the Minneapolis Institute of Art, initiated this program in Our Town with whichwe helped in developing a tour activity for folks with Dementia. We worked withtheir department of docents.

The program described in the posted article noted twoobservations that caught my eye, mixing that with my own observations from myown experience:

Families give up on these people and don't do anything tostimulate them… "Our program isn't going to cure them of Alzheimer's, butit opens doorways to their memory. They are totally present in the moment andanswer questions correctly."

Care partners get to see that theirmother, father, husband or wife can still be engaged in arts and culturalprograms and have their own personalities and life stories and not be definedby their diagnosis,"

This second I read and posted entitled: St.John’s Green House Project Brings Elders Back To Their Communities can befound and read by clicking on the title and going to Al Powers Blog or byclicking on Archive and going there.

The writing of this article is not as clear and descriptiveas the first article I have referred to. It speaks of a Green House, part of aprogram called the Green House Project designed to bring elders back to their communities.It becomes clearer by accessing the WebSite of the project it describes,namely, http://thegreenhouseproject.org/about-us/ or on Archiveto go to the project’s home page where it will provide a more complete description.The hypertext’d title links you to the full website that provides a multitudeof information about The Green House Project.

The green house of the project is essentially this:

Each Green House residence isdesigned to be a home for six to ten elders (twelve with a financialhardship exception), blending architecturally with neighboring homes

The project described in its WebSite is such as to make aperson going to it feel as if he were going to another home, an alternative tothe home he/she is leaving. There are untold advantages that the article andthe WebSite will describe, but the best is contained in the following:

….he came out to the Green House in a wheelchair van andafter a tour, he was transferred with a fair amount of effort into a chair atthe dining room table.

When the time came to leave, Don’s wheelchair was broughtover and he quickly stood, and with minimal help from one staff member,transferred back to his wheelchair. Rebecca said, “Hey Don, what’s the deal? It takes twopeople to help you transfer at the home!”

Don slowly replied, “Well…I guess I’m supposed to be sickover there.”

Is there a lesson here? Youbet!!!

We are human and one of our many common traits is to fit in. Thisincludes unconsciously giving the appearance of what we are supposed to be.This is as reactive with us as when the doctor raps us with the rubber hammerbelow the knee and the knee jerks.

As an example: do you act like a kid when you’re an adult? Do you act like a bum when you are aprofessional? When I was a lawyer, God forgive me, I carried myself as one. Ipride myself now, unable to drive particularly my lawyer car my old whiteMercedes, I am just another guy on the bus. Should I act the lawyer there? NoWay!

We have Dementia, those of us so afflicted. Do we act the part? To somedegree we do, simply acquiescing in something we cannot deny from ourexperience of symptoms. At the same time we do not act like the guy trapped inthe corner of the room just standing there and drooling. If we are in a functionalstyle of life, we act as functional as able and even push that a bit.

To the same degree, if we are a nursing home resident, just try it,you will act it, unconsciously, but fully nonetheless. If not they will giveyou drugs enough so you do. If you tried to be other you would simply not fitin. You would be as subject to being shunned by your fellow residents as youwere by your old acquaintances when they learned you had dementia.

In a home setting you will act it, as if you fit right in there. Youwill act functional because you as Don do not have to be sick anymore in thissetting.

In the first of the two articles, going to the movies connected theone afflicted with another better time; the time the old movie was shown at atime the person attended the movie. But a kid, being there and participating inthe activity allows the kid to act the kid and as such able to be more like theperson had been. Back in the environment of the home it is natural to hold tothe pleasure of the movie outing and. You continue the person as he/she was tosome degree.

Alzheimer's Disease -- The Front Row

2011-11-10T11:22:00.001-06:00

My last blog post I finished with this paragraph:

The next article: Alzheimer'sDisease -- The Front Row deals with a viewpoint of seeing the diseasein the negative light of the next limitation to show itself, finally in thefailure of the afflicted one to even recognize the caretaker and loved ones.

This post is about that article. Click on the title to go tothe reading room or click on Archiveto go there and read it. My reaction to it is at best describable with the word“bemused.” I was bewildered and confused after reading it. Are we that hard onour caretakers as Bob DeMarco characterizes it in this article?

Bob DeMarco is the guy who edits and writes most of thearticles in Alzheimer’s Reading Room, one of my favorite on-line sources fornews on Alzheimer’s Disease and Dementia. Bob does a marvelous job with thesite and with his consistent run of articles posted daily on the site. He isalways up-beat in his writing. This is the first post of his that has been adowner of the many that I have read.

Bob was a successful professional on Wall Street. When itbecame evident his mother Dotty needed help because of her AD he resigned hisposition and came to Del Ray Beach to care for her. He has been doing this forthe last 8 – 10 years. In that time Dotty has aged to 95 years and is probablyin better shape physically, mentally and cognitively than many stricken withthe disease and living it for the same amount of time.

Bob’s care of Dotty is the reason for this. It is constantand positive. He has concocted many personal innovations in care that he describeson his day to day blogging. He writes humorous, loving essays of Dotty, how sheis doing and what she is doing.

His up-beat view of caretaking, at least as he describes itto be in his writing contradicts the tenor of the current posted article. Asyou read it, if you have not been a caretaker you will forever be careful aboutbecoming one.

Not that caretaking is any fun, it isn’t! It is three timesas hard, on a day to day basis, as it is having this disease. The Caretakercontinues with her/his normal tasks. Then added to that is taking care of thenormal tasks of the afflicted one. It is topped by the impossible task oftaking care, living with and responding to one with this disease day in and dayout. It is a constant no win, no reward, no gratitude of the sick one or thebalance of the family who tend to carefully keep their distance for fear youmight quit the job.

At the same time it can be personally rewarding. Some havewritten of the positive strokes they get from doing it. In fact looking over mypast blogs I find one responding to a blog of Bob Demarco’s from Alzheimer’sReading Room. My post is: TheStrange Realm of Forced Transmogrification. The post on the Reading Room towhich it responds is: Alzheimer'sCaregiver Unleashing the Strong and Deep Desire Within You. Click the titleto go to the Reading Room or click on Archive togo to either Site to read it.

A second Post by Bob DeMarco can be read in my archive by clickingon: Alzheimer'sDisease, Love, and the Spirit Within You. This post was repeated under thetitle Alzheimer'sCaregiver Grief, Love, and the Spirit Within with substantially the samecontext. Click on either title to go there to read them.

Both articles opened with this statement:

In order to become thatbest Alzheimer's caregiver you can be, you must go deep down inside yourself.You need to dig out your feelings and emotions; then, recognize and accept them-- one by one. This can be a long and drawn out process that takes time --sometimes years.

It goes on with a number of statements worth reading themost striking of them being this:

Once unleashed, this"deep within you" brings to you a feeling that you could neverexpect. You are the ONE and along with this understanding comesAlzheimer's caregiver love. What was once an unwanted burden now becomes alabor of love.
The labor of Alzheimer's caregiving at its best and most wonderful.

This view has been the consistent view of DeMarco. This iswhy I was surprised as I read this particular one and choose to use it for mypost today.

Irreversible, irrevocable, irremediable, irreparable, irredeemable,irrepressible, etc. are a few of the adjectives that come to mind when readingthe DeMarco blog. In the context in which it is all recited, the life of theCaretaker is absolute, unforgiving and unchangeable by the afflicted or theaffected. The worst of it all is it assumes a dire terrible state entered intoby the Caretaker one which makes the Caretaker and the person afflicted both victims of the disease and victims ofeach other.

If I must live with that having AD please ship me off to theHome or to the bone yard where they give Strychnine and Hemlock.

Reading between the lines, reading past posts, knowing theresponse of many caretakers, put together with my remaining ability to see,analyze and comprehend their responses I see in caretakers as well as myself,one afflicted, a change in process, not unlike the change to which we adjust inthe course of having AD or Dementia.

In order to become that best Alzheimer's caregiver you canbe, you must go deep down inside yourself. You need to dig out your feelingsand emotions; then, recognize and accept them -- one by one. This can be a longand drawn out process that takes time -- sometimes years.

Lost in this maze of emotionsand confusion is love. There is no substitute for the love of an Alzheimer'scaregiver. Along the road from grief, to caring, to Alzheimer's love you mustcome to the understanding that you are the ONE? You arethe ONE that is receiving the call.

You see, Alzheimer'scaregiving is a calling. You may ask yourself, why me? You may wonder, why me?The answer to this question lies deep within you.

Once unleashed, this "deep withinyou" brings to you a feeling that you could never expect.

You are the ONE and along with this understanding comes Alzheimer'scaregiver love. What was once an unwanted burden now becomes a labor of love. Thelabor of Alzheimer's caregiving at its best and most wonderful.

The ONE within us is buried very deep. It is justwaiting for the call. It remains up to you to reach deep down inside and toaccept this calling. It is up to you to unleash this power within. Tounleash this spirit within you. This spirit brings with it the strengthto Love.

Know this. Once this spirit is unleashed it will change theway you look, feel, and perceive the world around you.

In effect, theunleashing of this spirit will change your life and the way you live your lifenow and in the future.

To my way of thinking, reading between the lines of DeMarco’scurrent post and blending in the view stated in his previous posts, includingmy judgment based on my experience having the disease and seeing my wife Diane dealwith its consequences as my caretaker, this is my view:

The curse of AD, of Dementia, can be changed into a gift ofthe afflicted and/or the affected. It can be dealt with as an opportunity tomake the most of it, deal with it as such, and turn it into a gift. It, like somany other events of our lives is terrible to experience, but becomes better inthe result it produces giving us the wherewithal to transcend this space/timedimension into the higher existence called by so many names,names ranging fromCosmos, to the arms of God.

Cure, Hope, Recovery, Survival

2011-11-08T13:36:00.002-06:00

Two articles were posted in Alzheimer’s Reading Room, onehopeful the other dour beyond belief. This essay deals with the opposite polesof viewpoint illustrated in both of these articles dealing with Alzheimer’s Disease(AD) and/or Dementia. The two articles are:

1. Cure,Hope, Recovery, Survival

2. Alzheimer'sDisease -- The Front Row

Click on the name of either to go to the Reading Room toread them or click on Archive1 which will bring the first then Archive2 which will bring the secondarticle up for reading.

The lead in these articles speaks to different views theydiscuss.

Cure,Hope, Recovery, Survival leads with this statement by the author: “I envision a time in thefuture when patients and their families would know they aren’t doomed.”

Alzheimer'sDisease -- The Front Row leads with this statement by the author: “Knowing that the day is comingwhen your loved one -- won't know you-- is the most horrific feeling of themall for an Alzheimer's caregiver.”

I wholeheartedly agree with the view of both authorsseemingly opposed as they are. The first, Mary Gazetas, the author, states whendealing with her sister diagnosed with breast cancer, undergoing surgery forit, working on getting back to “normal” she often heard the words “Cure, Hope, Recovery, Survival” used inreference to breast cancer and used in conversation with she and her sisterwhen referring to the process of diagnosis, treatment, and prognosis of thedisease.

Gazetas found thelanguage and the attitude behind it refreshing. Her article compared this todealing with AD. She said she is intimately familiar with AD being caregiverfor her husband who is afflicted with AD. She described the language andattitude of living with AD quoting her husband’s own assessment of his disease:

…world of Alzheimer’s - aworld my husband once described to me as being in a state of “less than minus.”

The object of her article was this:

I envision a time in thefuture when patients and their families would know they aren’t doomed.

Instead, it would be a time similar to the many brave women who develop abreast cancer that is curable.

I too look to a timenot in the future but now in which we know we are not doomed by this disease.

Unfortunately thetenor of the optimism of Mary Gazetas seems to be predicated on a Cure! This isa conclusion I draw based on the language “I envision a future… when patientsand family would know they are not doomed.” I assume her reasoning to be afuture in which there is a cure. I might be unfairly reading that into it, if Iam I apologize to Ms Gazetas.

If it is not, it wouldbe clearer and free from ambiguity if she said: “I look forward to a change in attitudeof everyone about this disease where we no longer view it as being doomed tohave it.

It will likely be sometime before a cure is discovered. Until that time of a cure, and only if themagic pill can cure AD already in progress. Those of us who have it or get itin the intervening time, remain “The Doomed!”

Refusing to accept thisnow, or ever, I for one am not doomed by my disease and not about letting mylife become that. I am affected as are my family and loved ones. Because ofthis I must deal with the negative side of having it. To classify myself as Doomedis something I refuse to accept when there are so many positive things about mydisease. It needs to be accepted, worked with, and used to make my lifeinteresting in an altogether new sort of way!

We have to dosomething in the meantime to correct the nihilism evidenced by the phraseology “whenpatients will not feel they are doomed”. This is extreme; it is an unnecessarilyaggressive characterization of someone dealing with the state of being afflictedby AD.

We who have it; we whochoose to deal with it as it is, do not feel doomed. We feel changed, yes,abruptly altered, challenged more than at any other time in our life, but ruined(a synonym for the word doomed), NO WAY!

It seems everyone elsefeels we are doomed. It contributes to the overall stereotype others have ofwhat we are. It is this stereotype, “nothing we can do about them but keep themsafe and institutionalize them when it is no longer possible” or the person whotells you “You can’t have it, you are just too normal.” That person and toomany others see us as the guy trapped over there in the corner drooling unableto go anywhere. If you are not that you don’t have it!

Because there isnothing they can do or we can do in their perception of what we must be we areseen as “The Doomed!” It is time for all of us to know we are not doomed. We arechanged and we must react, accept and cope with the change. This is nodifferent than life has ever been for any of us since the day we were born andwill remain the same until we die.

It is as much part ofour human nature, trapped in a time and space dimension for the duration,charged with a responsibility to use the time well and allowed to use the timepoorly. In this life we are given YinYang, ( "yin and yang", is used to describe how polaropposites or seemingly contrary forces are interconnected and interdependent inthe natural world, and how they give rise to each other in turn. Opposites thusonly exist in relation to each other) [http://en.wikipedia.org/wiki/Yin_and_yang]

This concept of YinYang manifests itself in life wherein wehave the free will to do good or do bad. We were charged in this way both beforeand after diagnosis of AD. After AD this life’s responsibility is in no waychanged. Challenged differently it is, but change in terms of our need to dealappropriately with it, there is no change.

The damage done by the concept that we are “The Doomed” doesnothing more than add to the pain and difficulty of coping with this disease. Thereare limitations and changes caused by this disease but doom is not one of them.It is so unfortunate when the world treats us as if this were true.

If having this disease as the world sees us having it doomsus it is an unfair insult added to our burden that offers no hope, justresignation and inaction when it comes to us or for us.

I look to the time when, in lieu of social abandonmenthaving this disease prompts an offer of help for us, for our families andcaretakers to cope with the effects of the disease and helping us improveg ourquality of life while having the disease.

The next article: Alzheimer'sDisease -- The Front Row deals with a viewpoint of seeing the disease inthe negative light of the next limitation to show itself, finally in thefailure of the afflicted one to even recognize the caretaker and loved ones.

WHAT SHOULD YOU DO WITH A ROTTEN APPLE?

2011-11-06T12:53:00.001-06:00

There is so much the can be done, so much that we can do, toease they intrusion of Alzheimer’s Disease (AD) or Dementia. There are verypersonal reasons if you have it; there are very public reasons too many tolist, but the following head up that list: to save the wear and tear on yourfamily; to save the cost incurred by your family for your care; to save yourcommunity and your country the cost of your care.

The key reason to do anything is to continue to have a Qualityof Life. Life does not end with diagnosis. It certainly changes, abruptly,completely, almost as if you have entered an altogether different world. Itcompares to the concept of Bardo, a Buddhist belief, that this life is but onephase of existence, as are the many phases our consciousness passes through inits process of enlightenment. As such, this time in the space-time limiteduniverse bordered by our birth and our death are but another Bardo.

Living a life without Dementia is one entire life that endswith your diagnosis. That life is over, it will never return. Anotheraltogether new life starts after diagnosis if you are able to let go of youpast life and accept this diagnosis and the new life it places you in.

It is this change that I am writing about; I am writingabout our need to embrace the change; I write about the new and differentparadigm we find ourselves in. I have learned the best way, at least for me, todeal in it is to make the most of it while I am here. This is what accepting itis all about.

Looked at through a lens of objectivity;seeing it for what it in fact is; opens a new door through which we can enterand give our life different purpose and different meaning. It is in doing thisthat we are able to enhance our Quality of Life and prolong it in that qualitystate. Eventually the Beast Dementia will take over, take our minds, ourbodies, our loved ones (as we fail to know who they are) and finally our lives.Until then there is quality for us. It comes with new and different challenges,different goals and the wherewithal to partially step into a wider and moretranscendent universe. In other words we can feed our souls in a far morecomplete way while still occupying this temporal plane.

If we simply resign ourselves to that on diagnosis, lamentwith an attitude of why me, we miss all the personal opportunity Dementia canoffer our souls. We come to nothing by reason of having Dementia other thanabject suffering as we pass through it.

The object of this series of essays I have been posting isto identify the ease with which we can, in a practical way, take the steps toimprove our life post dementia and prolong our time in the state of improvement.It is something all of us afflicted with this disease need to do, need to getabout it on our own and hope eventually help will come along.

The Article entitled: How cannutrition help prevent Alzheimer's? which appeared in CNN a fewdays ago offers nothing new that has not been said on this blog already. But itdoes in a unique, orderly and thorough sort of way detail how to incorporate

…lifestyle factors including diet and exercise … (to) planan important role in prevention.

Eating a heart healthy diet like the DASH diet or theMediterranean diet is essential, as brain health and heart health are veryclosely related.

Read the article in my Archive where I have posted it byclicking on its title.

It covers food choices that are worth including in yourregular diet and gives the reason why they are helpful.

It states of exercise “Being fit has been shown to decrease brain shrinkage”

It finishes with this statement:

Make changes to your lifestyle today, and be consistent,to decrease your risk of Alzheimer's disease. All of the things that Imentioned work much better for prevention than for slowing of progression ortreatment.

Although the foregoing conclusion recommends life stylechanges for folks to utilize to avoid contracting Dementia, which is a newrecommendation different from so many I have read, it does qualify the positivestatement it otherwise makes regarding the help it affords if you already haveit. It is just like Sanjay Gupta did in an earlier article from CNN, where thewriter states:

“All of the things that I mentioned work much better forprevention than for slowing of progression or treatment.”

I have been following this subjectfor the last 5 years, since shortly after my diagnosis. Always the statementhas been: “Although good for everyone to follow the ‘Best Practices, namely: Eat Right, Exercise Daily, Get Involved inStimulating Intellectual, Social and Creative Activity, Take your Medication,’this is a necessity for those of us stricken with Dementia if we wish toprolong our time in the Early Stages of the disease.”

This is a continuing conundrum Icannot solve. Why is there such a need to qualify what’s good for us? It isakin to the way we as a culture deal with a rotten apple. Ever since Dr.Alzheimer’s declared in 1902

“Keep them safe as long as we canthen place them in the institution when this becomes no longer possible”

Ever since Dr. Alzheimer set this standard in 1902 we havehad an almost universal reaction to another being diagnosed with this disease.Shun the person, leave him/her be. There is nothing we can say; there isnothing we can do for them.

This pernicious attitude has continued ever since 1902 inthe medical, health and support community with very little change. Knowledge ofthe disease has changed in the last 109 years; knowledge of remedial help hasbeen added to this field of knowledge.

This knowledge offers more help than social and professionalabandonment as though we were rotten apples only to be left to rot and separatedso as not to spread our rot!

I could go on over this but what has been said will sufficefor now. We are too often given to the hive mind in the way we perceive so wedon’t have to intuit or exercise any original thought ourselves. Too often thissaying is followed: “If someone else says it, particularly more than one, itmust be true!”

Antidote for the Alzheimer's Epidemic

2011-11-04T21:08:00.000-05:00

An article Antidotefor the Alzheimer's Epidemic appearing in BrainToday posted in myArchive “hits the mark,” “zeroes in,” “is on the money” like no other I haveread. Click on the name of the article to go to Brain Today where it appears oron Archive where I have posted it.

The commentary is simple and to the point. I started mycolor code of computer style underlining and could have underlined the entirearticle. I refer you to the article for the underlines.

What is refreshing about the article is its informativestyle. It gets to the point and avoids any extraneous musing or qualification asfound necessary by Sanjay Gupta in my last post.

After reading the substance of this article I return to aview I have had ever since I was diagnosed with Dementia. I do not understandthe contradictory positions taken by the professionals in dealing with Dementiaand/or AD.

We face a coming epidemic. The epidemic will be the resultof numbers of people entering into the age of high risk for Dementia. This willbe caused by a combination of the coming of age of the Baby Boomers and thepattern of earlier diagnosis made to allow for earlier treatment of Dementia.Currently the threat of this epidemic has been used by the professional communityto focalize on fear of getting Dementia and thus scare folks into greatercontributions and government into greater appropriations for Research to Find aCure.

Mind you, this is so important that we find the cure andfund the necessary research to do it. It is however equally important that wecare for those of us already stricken with Dementia. We need to do this out ofpure human concern and also to prolong the stay of people stricken in EarlyStage as long as possible. This is one great way of finding economy in care,namely, keeping folks with the disease out of the orbit of needing institutionalcare as long as possible.

This presents a classic “damned if you do and damned if youdon’t” paradox. If we concentrate on research to find the cure and make noother effort in any other direction, we set ourselves up for success only ifthe cure is found in such a timely way to help the millions already sufferingthis terrible disease.

The chance of not finding it has been manifested by the lasttwenty years of search with nothing found. If nothing is found for cure, or notfound for many years, the many people now stricken with Dementia and the manymore soon to get it suffer this disease with no quality of life, no hope andare the cause of untold expenditure for care before they die.

The article states of the 36 million demented people in the world … 28 million ofthem are undiagnosed. This is cryptic, so many with the disease notunderstood for what they are suffering, denied any opportunity at all for anyquality of life, they are but left to the slippery slope to oblivion.

This absence of any empathy, and/or, the adroit obscuring ofa hidden agenda, is unacceptable and does not fit with the refinement andsophistication we are supposed to have attained in this modern age.

A second article caught my attention. It is entitled Put TheElderly On Ice? It was in CNN Opinion dated 11-1-11. Click on the titleto go to my Archive to read it. It side steps the issue of Euthanasia for theElderly, but turns around and raises the question through the back door.

This article is chilling. It considers scenarios produced byhigh medical costs and fruitless procedures where the patient is likely to diesoon after the procedure is performed. It considers the pain, distress anddiscomfort of both procedures to preserve life and the equivalent pain,distress and discomfort of living the life that has been saved. It speaks oflimiting care to no more than palliative (comfort care) for anyone 80 years orolder.

It suggests that if age is a factor in limiting care thispresents the opportunity for a sliding qualification scale based on youngerages as resources become scarcer as is happening already. This is inevitable becausecost is the basis for invoking the limitation of care. This will quickly befollowed by introduction of the right to terminate life as an act of State whencost and the time in the institution becomes a consideration.

Is this all bad? I am one of those of the group soon to beconsidered for limitation of care. I have progressive dementia. It wasdiagnosed more than five years ago, probably was processing in me years aheadof this. It is progressing, not standing still. It will eventually render meincoherent; I am physically impaired already. I am 75 years old. When I turn 80there is strong likelihood I will be one of those ripe for the picking, eithersoporifized (given soporifics [heavy duty tranquilizing drugs] so I but vegetateand make no trouble for anyone). It will be this or I will simply be relegatedto the needle then to the ovens.

Is this all bad I ask? Not really. I sure do not want to bespending my last time in a fetal position costing my family or countryunreasonable cost for my care. I would rather be dead! At the same time, lookedat from the standpoint of the big picture, this is a terrible remedy for aproblem that can be remedied so much more easily.

That remedy is to place emphasis on care at the samepriority level as raising funds to do research to find the cure. Using the wordcare I am not suggesting the Institution, Nursing Home, Assisted Living Home,or the other very expensive kinds of in house care provided mostly by the BigBox Chains that now provide 65% of that service in the U.S.

I am talking about supportive care for early stage designedto keep folks in early stage as long as possible thereby giving them a betterquality of life and saving everyone the cost of institutional care because theydon’t need it.

So much can be done,should be done, if only there was more encouragement and initiative coming fromthe professional community. The other leg of need requiring attention isfinding less costly ways of providing Nursing Home, Assisted Living and HomeCare so it doesn’t bankrupt us.

As we proceed down the singular chute of raising funds forresearch we are risking everyone with Dementia, likely to get Dementia and allaffected by Dementia.

Dementia, What When How?

2011-11-03T19:06:00.001-05:00

What to do about Alzheimer’s Disease (AD), what can we doabout it, what we need to do because no one else will. This post continues thesame theme.

I read an article 11-2 on Pat Summit and as I finished it Iexclaimed “There you have it!” Pat Summit, our certified AD Poster Girl! Thearticle is entitled Dementian otslowing me down, Summitt says as season begins. Click on the title to goand read it or click on Archive to go there and read it.

The caption for this picture if used as a poster for ADcould easily read:

Dementia is NotSlowing Me Down!

We need publicitylike this. We need Pat and others like her to make news about how they have ADand remain quite capable of continuing to function. This does so much toovercome the stereotype that anyone with AD is nonfunctional, is incompetent.

It is a sadtestimonial to self-interest the degree to which those purportedly supportingAD go in there effort to raise funds to find the cure and do little else.

This is why the PatSummit article and more so what Pat Summit continues to do with AD is so very important.

I cite the followingquotes from the article which support my view of the good Pat Summit is doingby going public:

“I wake up and I go and drink my coffee, and I do about12 puzzles before I ever go into the office,” Summitt said Thursday. “When Iget there, my mind is sharp. And that’s important – very important.”

Summitt, long revered for her success, earned plaudits forcoaching on. SI.com’s Kelli Anderson wrote that Summitt can add toher legacy by bringing attention to Alzheimer’s in the way other sportsfigures – Jim Valvano, Kay Yow and Lance Armstrong for cancer; ArthurAshe and Magic Johnson for HIV/AIDS – did for their diseases.

USA Today’sChristine Brennan: Summitt’s experienced staff will help her

No typical job scenario exists for early-onset Alzheimer’spatients, in part because the disease progresses at different rates fordifferent patients, Dr. Patrick Lyden, chairman of the neurology department atCedars-Sinai Medical Center in Los Angeles, told CNN inAugust.

CNN’s Dr. Sanjay Gupta said that there’s plenty ofevidence to suggest that medication and mental exercises such as puzzles can helpto slow the progression of the disease, for which there is no cure.

Sanjay Guptaqualifies the foregoing statement with the following:

“But it’s a progressive problem, typically, so what (Summitt’s)memory is like now … may be different five to 10 years from now,” Gupta said.

The need forqualification by Gupta typically heard from professionals is the result of thedearth of understanding of what AD is. This impedes initiative and progress in seekingout forms of treatment of AD other than rushing headlong into raising money tofind the illusive magic pill that will cure AD.

Two points must bemade in this regard:

1. There’splenty of evidence to suggest that medication and mental exercises such aspuzzles can help to slow the progression of the disease, for whichthere is no cure. Gupta has said it; many others have said it; so many of usafflicted or affected by the disease know it. It does work.

Sothe qualification, what is that about? Gupta is right in what he says: “memory… may be different five to 10 years from now,” OK, it might, it probably willseeing how this disease progresses, but even this is qualified by speculativelanguage. This is so typical in dealing with this disease. The reason, after110 years of dealing with it, so very little is known about it.

2. Thesecond point is this: Help instead of disregard based on the erroneous beliefthat nothing that can be done goes along way to prolonging one afflicted with AD staying in the Early Stage,functional, and a long way from needing institutionalization. Continuing with agood quality of life is probably the best tonic in dealing prolonging the goodtime available with AD.

The simple answer is this. We must expand our horizons onwhat we are willing to do about the disease and start exploring alternative modelson how to deal with it. Gupta is speaking of:

THE BEST PRACTICES: Eat Right,Exercise Daily, Get Involved in Stimulating Intellectual, Social and CreativeActivity, Take your Medication.

This is but one alternative, thereare so many others.

We Need to Get Serious and Do it Ourselves!

2011-11-01T20:20:00.003-05:00

As I redirect my series to “What can be done?” “What shouldwe do?” “How?” I came across two articles in Alzheimer’s Reading Room on music.I have written numerous times about the good affect music and the arts can havestimulating our brains. I have also theorized, using myself as an example, themechanics of it, I have come to believe this:

As the left brain experiences the loss of function by lossof brain cell with Alzheimer’s Disease (AD), the right brain is called in tohelp.

The left brain is our data device. It takes data in,categorizes it, evaluates it, remembers it and reuses it in its day to day activity.

The right brain is a way different dude. It has functions wemay never use. It is the dreamer, the singer, the artist, the consciousnessthat is in the “Now”, never progresses serially from one thought, one event,even one day to the next. It sees all as one huge event happening. It is thatpart of us from which we draw and artistic ability, paint, sing, see beauty,intuit things. All of our esoteric abilities emanate from the right brain.

When the right brain is called into action by the left brainto help out, it brings not only help, it also brings everything else of whichit is capable. It is in this way the artistic talent comes along witheverything else in the properties of the right brain. As this happens we can discovertalent.

This comes with two edges to it. The talent comes on line,we have brought it on line working on stimulating our processes that arefaltering. We stimulate our cognition, our camaraderie, our deep thought andour artistry. This brings the talent of our right brain over and into ouraction interfacing our world as it is dramatically changing. In turn as we usethis right brain function this stimulates it to offer us more in the way of itsintense potential. It is a symmetry that happens.

This is the case with me. I was a lawyer, I did ok at it. Infact I built a nice size practice in the Midwest. The practice did a lot trialwork. In my trial work I experienced success nationally. Trying a lawsuitincludes much memory, retention of data, quick retrieval of remembered data,and many more functions which tend to be primarily left brain activity.

A good trial lawyer also needs to be creative. He/she needsto see things other folks don’t see. I often said in my days of practice to begood in trial work you need to be both focal and global. That is you need to beable to see all the small stuff, put it in order and make it work for you. Atthe same time you need also to see the big picture of what all the little stuffmakes up.

The data, the use of the data and knowing where you want thedata to take you marks your ability in the Courtroom.

I was both very good on a focalized level, but equally goodon a globalized level. Even more important I was able to work both levelstogether and move back and forth within each.

I did no artwork, I cannot sing or play an instrument, neverhad the knack for it. For this reason after AD I was surprised to see myselfdoing art work, getting into color and form, really getting into putting togetherpictures art working with paints, drawings and computer programs for digitalart. I could not believe some of the things that just come together for me.

Where did this come from?

I am convinced it is the symbiosis the two hemispheres ofthe brain are forced into when navigating through AD World. It is this thatmakes me such a believer in the need we have to keep stimulating our brains,ourselves, intellectually, socially, artistically. It is my experience that itworks!

I have posted two articles on my Archive. Both are takenfrom Alzheimer’s Reading Room. The first I posted is entitled: Nota Ghost of A Chance -- An Alzheimer's Disease Out of the Box Moment. Thesecond is: TheNeuroscience of Music and Alzheimer's. Click on either one to go to myarchive or go to the reading room to read them.

Both articles are worth the reading if for no other reasonthey list in hypertext numerous articles written on music and its help with AD.Like music there is another wealth of articles on painting and doing otherworks of art that also aid AD.

This post starts my essays on what can be done. I have spenta great deal of time on what needs to be done. I will now follow with my ideason what can be done. Earlier I wrote about the support system for us withAlzheimer’s Disease (AD) asking why did they seem to know so little; why dothey do less?

I have no answer for them but I have an answer for us. Theforegoing is one, I will follow with others, always pointing in the directionof: We gotta do something, there’s things to be done, I will start with ideas,I hope this starts other ideas.

I would love some comments from my readers. Those who followthis blog is growing, I sure would like to know what is liked and what is not.But, above all, keep reading. I am driven to share; it will keep coming; Iwould enjoy some interchange.

The Magic Bullet Brought to you by the People at Alzheimer's!

2011-10-31T17:17:00.000-05:00

Have you everwondered? Does anyone really know whatAlzheimer’s Disease (AD), what Dementia, really is? Does anyone have a clueabout what they can do about it? If anyone does why aren’t they doingsomething?

I have the disease, had it forfive years. Having retained my cognition and my ability to analyze what isaround me, I set out to learn what I could in order to survive thisdebilitating disease as long as I could. I took Namenda and Aricept, I ateright, i.e. the Mediterranean Diet, I stimulated myself with social,intellectual and creative activities. Yes, I even exercised. In an effort tostay sharp I spoke out about AD, advocated and was received quite nicely. Ideveloped the ability to do art work. This picture is what Iconsider my crowning achievement:

I am bright, analytical, as asuccessful trial lawyer I acquired a relatively thorough medical educationhaving a doctor assigned to me by my client the third largest chemical companyin the world. I was handling pesticide lawsuits all over the U.S. for tenyears. This doctor kept me on top the all of the medical aspects of what wewere dealing with. I say this to make this point: I have a good handle onmedicine.

In the more than five years I havecarried this illness, which has been taking my body and mind ever so slowlyminute by minute, year by year, I am bewildered by the lack of medicalknowledge, by the lack of Health Care formulas, of the absence of any sensibleprograms to care for those of us suffering this disease and help us stayfunctional as long as we can.

All I see is the feverish activityto raise money for research to hurry the finding of the cure for this disease,the magic bullet pill that will eradicate it and make it go away.

I go to the neurologist and expectdirection and counseling on what to do, what to take, what kind of progress mydisease is taking, and where might I expect it to go? All I hear is “come backin six months” or “come back in a year.” I haven’t been going back. I believe Iam better off saving the time.

I have a disease that is killingme, day by day it whittles me down. It will continue doing so until I am allwhittled away which is when I will croak, a day I sincerely look forward to. Isthere help out there to get me through this terrible trek? The absence and thesilence chills me to the quick.

Will they find the pill? Can I takeit and make it go away? They figure according to the article I have posted inmy Archive that they hope to have something in 2020. Wow, I got 8-9 years togo, wow!

Yeah wow! Should I live that long,will I be a vegetable 14 years post diagnosis?

The article posted The Alzheimer's Bullet which was on Alzheimer’sReading Room can be read by clicking on the name to go to the Reading Room orclick on my Archive where it is posted.

In the article Bob DeMarco, the editor of the Reading Roomwith the day job of caring for his 95 year old mother Dotty has been hercaregiver the last 8 years. He discusses LifeAccording to Alzheimer’s as it is today, and as it is about to get worse.

This is real and the point of the article which leads offwith a picture of an Ostrich is you can deal with and plan for the reality ofit or you can put your head in the sand. It’s your choice.

WhenAlzheimer's disease strikes the entire family suffers. Alzheimer's disease ishard to understand, hard to comprehend. As a result, it is not unusual forfamily member to deny its existence. This leads to additional heartache andsometimes leads to the disintegration of family units. A large fraction ofAlzheimer's caregivers say they are not being helped by family members, andthey often feel abandoned.

You can stick your head inthe sand and suffer the devastating consequences. Or, you can get out in front of the disease and make a plan that allows forthe person suffering from Alzheimer's to live their life to the fullest degreepossible.

In having it I have learned this. The earlier it is detected the better.The Earlier you are in the Stage of it there is more that can be done to live …(your) lifeto the fullest degree possible.

The longer we are in the Early Stage the longer we can avoidinstitutionalization and stay able to care for ourselves. This adds to ourquality of life and it saves everyone money. The cost of care is unreasonablyhigh.

This is a formula that works. You won’t learn it at the doctor’s office,at the health care clinic, or from any AD support professional. The latter willtell you what an awful disease it is and we should raise money to do researchand make it go away.

Where will it end, and what set of Quonset house will we find ourselves living in?

2011-10-30T11:29:00.000-05:00

I am trying to get off the soap box delivery of the last fewposts I have made on this blog. My last three posts are these:

· Can They be Trusted?

· AKIN To Beating a Dead Horse!!!

· Words Can Smack You Right In Your Face!

Each one of these posts speak of our dire times and ourimpossible options. They muse about our coming Armageddon when the Tsunami of Alzheimer’sDisease, now starting, gains full strength. That is when this epidemic level ofAD will break us all, individually, family, community and yes, Country! I don’twant to sound the Crepehanger (Defn’d: defeatist,depreciator, downer, gloomy, killjoy.) I am driven by what I see and theabsolute reality of it occurring.

The article reported in the New York Times 10/24 says it better than I havesaid it countless different ways on this Blog. Still No Relief in Sight for Long-Term Needs is posted on myArchive. Click on the title to go there. For this reason I am staying on topicfor at least one more post.

Why do I write this Blog? Why does it sound like I am the prognosticator ofperil and doom? Am I Cassandra with no foundation?

(In Greekmythology, Cassandra was the daughter of King Priam and Queen Hecuba of Troy. Her beauty caused Apollo togrant her the gift of prophecy. However, when she did not return his love, Apolloplaced a curse on her so that no one would ever believe her predictions. She isa figure both of the epic tradition and of tragedy,where her combinationof deep understanding and powerlessness exemplify the ironic condition ofmankind.) Wiki…

I write to get fulfillment.My fulfillment is not an ego thing. It is rather a need to balance the life I’velived on earth by doing some more good things. I have sensed my balance sheetweighted too lightly on this side. Therefore when AD hit by way of diagnosismore than five years ago I knew why I had it and what I was called on to dowith it.

Looking at my form of thisdisease I recognized I had it in a unique and different way. I was an earlydiagnosis and my symptoms and findings defied the experts. One expert wadedthrough it, a Neuro Psychologist at the University of Minnesota named Dr Erin Holker,and after a 4 hour battery of the Neuro-Psychometiric exam she gleaned from thefindings that I had atypical AD.

My experience of thisatypical variation has left me loaded with disabling deficits resulting fromloss of brain tissue, but the least daunted by the loss has been my cognition,my memory, my skill to read, write and analyze. I recognized this positioned meideally to talk about it from the inside describing to those outside what it islike having AD and what is needed for those of us with it.

This gives me the sense ofdoing some good for anyone interested in learning more from hearing me orreading my material.

Why did I choose to do thiswith my AD? 37 years ago I was a raging Alcoholic. I could not quit drinkingand abusing mood altering drugs. Unable to do anything, finally realizing I wasan out of control Alcoholic, knowing at age 38 if I did nothing I would die,leaving a wife and three children with nothing to live on, I recognized I neededhelp so I joined Alcoholics Anonymous (AA).

I learned a wholly new anddifferent style of life, one in which I submitted to the help of my higherpower. I learned all I needed to do was ask my higher power for help and itwould deliver. This was done in spades and an entirely new way of livingensued. I learned all must be turned over and when honestly and respectfullydone it worked. Over the next thirty years this was emblazoned in me. It workedand I worked with it.

When AD came along I knewimmediately what must be done: “Turn it Over!”

One of the views I get of ADon the inside is the calamity AD will cause us. All of what I have writtenbefore, such as, the population surge, early diagnosis, the absence of anyEconomy in Care, the dearth of programs to help people with AD, comes togetherin an impending catastrophe soon to happen.

This article Still no Relief in Sight describes onemore element of unnecessary pain our society relegates to us. The long termneeds bill failed because it was booby trapped from the start via accommodationof the opposition and then failed support from the inside of Congress for lack of anything coming back tothe Congressmen if they should make it work.

Just think of it. Today it isreported in the news that many generic drugs will not come to market becausetheir market right to purvey their generic look alike has been sold back to thepatent holder, leaving the high cost patented item the only available producton the market at its high and probably getting higher cost.

How in the good god’s namecould something like this get by congress, get by the agencies? Well it did.

Long Term Care is off to thesame bone yard. It wasn’t defeated by vote it was defeated by subterfuge renderingit impotent, impossible to perform.

The article posted says manythings worth taking note. It speaks of a $72,000 annual cost for the “Home.” At another place in the article it speaks of an increase to 7,000 a month.Multiply 7,000 by 12, you get $84,000 a year. How long will a retirement nestegg stand this type of a drain?

The article talks about thepenury of the spouse after paying all she/he has to keep the other in the home,leaving them nothing to live on.

What follows are excerpts Ihave taken from the posted article, the repeat of which make the point:

Unlike the rich, whocan afford to pay for services themselves, or the poor, who get help through Medicaid, the federal and state program for low-incomepeople, many members of the middle class have to look after disabled relativesthemselves, or pay someone to do it. Polls show that many people believe that Medicare, the federal health program for those 65 andolder, pays for such care. Actually, Medicare stops paying nursing home billsafter 100 days.

More than 10 millionpeople in the United States already have long-term care needs, and two-thirdsof the costs are paid for by government programs, mostly Medicaid. Studiesestimate that unpaid family members deliver an evenlarger share of the care, and the cost of nursinghome care averages $72,000 a year…

Less than 3 percent of Americans now buy private long-term careinsurance.

The government’sversion of long-term care insurance shared a basic flaw with commercialoptions: It was voluntary, with benefits to be paid entirely by premiums.