Dementia Endured

  

I am changing the name of my Blog! After my neurologist diagnosed my disease Alzheimer’s Disease (AD) nearly 6 years ago my experience has demonstrated having this name for my disease is counter-supportive.

My public identification of having AD places me in a pool hijacked by the Public Support Groups, Drug Companies, competing Research Foundations and Companies, Healthcare Industries formed for profit, Wall Street, Lobbyists, Government leaders, Elected Officials and the Bureaucracy, all working together in their own Power and Money schemes of self-interest.

The self- interest of this Cabal (def: secret or exclusive set of people) drives the interests and goals which is profit for the “Club.” This is done under the guise of supporting the unfortunate cursed by this disease. It is the name that has taken on stereotypical meaning that is key to this drive.

If you have AD your appearance is that of the proverbial person standing in the corner, drooling, captured by the two walls of the corner, unable to get out. This erroneous perception feeds the next stereotype publicly fostered by the “Cabal” that there is nothing that can be done for these unfortunates so they are left alone, waiting to go into the nursing home when their caretaker can no longer cope.

t is in the nursing home that the profit curve rises dramatically for the investors in For Profit operated homes. 65% of the nursing homes are operated for profit, average cost runs 80 – 100,000 a year.

On 1-27-2011 Harry Johns, President and CEO of the Alzheimer's Association, was reported in the Media as saying:

"Alzheimer's is a tragic epidemic that has no survivors. Not a single one,"…

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

“According to the new Alzheimer's Association report Generation Alzheimer's, it is expected that 10 million baby boomers will either die with or from Alzheimer's, the only one of the top 10 causes of death in America without a way to prevent, cure or even slow its progression. But while Alzheimer's kills, it does so only after taking everything away, slowly stripping an individual's autonomy and independence. Even beyond the cruel impact Alzheimer's has on the individuals with the disease, Generation Alzheimer's also details the negative cascading effects the disease places on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.”

In an address by a former director of the National Institute of Health (NIH) it was stated which I paraphrase as I heard it:

The NIH was mandated by the Federal Government to conduct research to find the cause and cure of AD. They couldn’t take on this task without help from the research communities outside the NIH. They could not raise the funds for this themselves by reason of Federal Law. They therefore participated with others to form the Alzheimer’s Association to do the fund raising task and turn the money raised over to the NIH. In turn the NIH with the funds could then contract research services to fulfill their mandate.

It is the position of NIH, in my view, that the sole purpose of the AD Association (ADAssoc) is to raise funds for research.

After my 5 years of involvement in the ADAssoc it is my belief that raising money to “Find the Cure” remains the primary goal of the ADAssoc. This is wonderful and everyone wishes them God-speed in attaining their task.

The unfortunate twist of this is the state of public and private help for those of us afflicted or affected by AD Dementia. Money is being raise, research is being funded, however findings from the research remain elusive. The last 20 years of funding research has resulted in no definitive findings of the cause of AD or anyway to eradicate it. It is wonderful for those future folk who may benefit from all of this after the cure is found. But that does nothing for us now!

There is so much needed by us. Help also has the capability of prolonging those of us in the Early Stage of AD saving us and the country the cost of the current rapid transit to the Nursing Home with the confiscatory cost of it.

Only now as the outcry of those of us affected is being heard are we seeing changes occurring with the ADAssoc. They are starting to recognize people with the disease and are starting to do some program development. This too is wonderful, but so much more is needed.

The next need after Help remains completely untouched. That is breaking the Washington-Wall Street connection operating a silent agenda to make more profit in the health-care, drug, insurance, banking and investment field.

Health Care and the cost of it should remain local, and be done on a not for profit basis. Washington’s involvement should be limited to adopting and enforcing standards of care and tax and other fiscal incentives to all care organizations helping folks affected by Dementia.

This could be a start!  For anyone having interest in much of what can be done take a look at my free online book Hope, a Primer of Care for Alzheimer’s Disease.

The “Hijack” of our disease as they operate their silent secret agenda has skewed everything about AD.

Essentially AD is a category of similar symptom complexes of brain disease. There seem to be as many kinds of it as there are people with it.

Too find but one mechanism causing it, and/or one drug able to cure it borders on ludicrous and has little more than built in failure to it. The awful stereotype of the disease and the “Cabal” that promotes this misapprehension is blatantly serving their own purposes. Namely, their self-interest is profit gleaned off our misfortune. This cries to heaven for vengeance.

Since diagnosis of my disease I have fought tirelessly against the deceitful concept promoted of

AD. Take a look at my Blog. I have posted 683 posts on the subject since February of 2009. My accompanying Archive has 511 Posts since June of 2009. That too is worth a look at. Both the Blog and the Archive are about the disease and what needs to be done to help! They dwell on the simplicity of programs and actions that can and should be done.

I do not have AD. I have a Dementia that has been classified as atypical AD. I am not sure of what that is. I am not sure what having AD is. I am sure of what Dementia is. It is having brain damage resulting from any number of causes. The disease identifies itself in limitation in functions of the brain that was heretofore functional.

It is for this reason I change the name of my Blog to Dementia Endured. I endure it; get along quite nicely coping with it. I would just as soon not have it, but I do and there is not a thing I can do about it but make the best of it!