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 go
before major deterioration sets in. Deterioration is already in progress. In
time it gets worse interfering with my life even more. As it does it will affect
me emotionally, cognitively and physically. I will at some point need outside
help like home care, day care, assisted living care and finally nursing home
care.
What should I do?
I faced this question 5+ ago. I am still looking for the
answer!
I first followed the regimen of
what is known as BEST PRACTICES: Eat
Right, Exercise Daily, Get Involved in Stimulating Intellectual, Social and
Creative 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 of
even moderate scientific quality supporting the association of any modifiable factor—dietary
supplement intake, use of prescription or non-prescription drugs, diet,
exercise, and social engagement—with reduced risk of Alzheimer's disease. The
evidence surrounding risk reduction for cognitive decline is similarly limited.
Low-grade evidence shows weak associations between many lifestyle choices and
reduced risk of Alzheimer's disease and cognitive decline.
This seemed to speak “Ex Cathedra” as the Catholics ascribe
infallibility to the Pope. If you could not believe the major Governmental
Agency 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 to
find 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 lawyer
background kicks in and I start looking for hidden agendas, other purposes not
stated, for purpose in non-disclosure of reason for this focalization
I have held positions and worked with the National Alzheimer’s
Association and our local Alz.Assoc. I have served on a State Commission for
re-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 this
continuing 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 are
important, look like we are important and used for any flag waving
demonstrations. We are just like a fascist directed crowd, waving ourselves as
specimens of this horrible disease, wearing purple Alz.Org T-Shirts, logoed
with AD, waiting on queue to make boisterous affirmation of whatever cause of
AD we are gathered for.
Having this disease is not demeaning enough. We are debased further
by this aberrant use made of us, made to feel of no more account than we are as
we are shunned by all the normals who are not affected by this disease. Even
the shunning has its source in the use made of us and in the publicity given it
like that of Harry John’s President and CEO of the National Alzheimer’s Association:
"Alzheimer's is a tragic
epidemic that has no survivors. Not a single one," (1-27-11)
Who then went on to use the facts of the epidemic level AD is
reaching to solicit more funding for research to obliterate the disease
altogether. 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 likelihood
of 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 a
common cause? Are all cases of AD essentially the same? If they are different
such as Early Onset, genetically caused, fast acting, slow and plodding in
development, all have the same characteristics, same limitations produced in
the progress of the disease?
If there are differences is it reasonable to expect to find
a 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 within
the genus Dementia. There are a number of Dementias. The proposed Diagnostic
and Statistical Manual of Mental Disorders V (DSM-V) lists the
following conditions that fall under the genus Dementia:
Please find
below a list of disorders that are currently proposed for the diagnostic
category, Neurocognitive Disorders. This category contains diagnoses that were
listed in DSM-IV under the chapter of Delirium, Dementia, Amnestic, and Other
Cognitive Disorders. The Neurocognitive Disorders Work Group has been responsible for addressing
these disorders. Among the Work Group’s proposals is the recommendation that the
category be divided into three broad syndromes: Delirium, Major Neurocognitive
Disorder, and Mild Neurocognitive Disorder.
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This introduces the direction I will next take with this
topic namely the confusion and ambiguity involved with AD in the professional
community.
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