[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!]
I quickly learned how wrong this was. As AA accumulated a
massive data bank about alcoholism and an equally large mass of data on how to
deal with it, stay successfully abstinent and learn how to rebuild your life; I
found nothing similar in the knowledge base of AD.
My doctor did the standard take this and I’ll see you in 6
months. 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 he
is due, in addition to medication he told us what was out there able to give us
help in dealing with it. He recommended I continue with the Occupational
Therapy I was getting at Sister Kenny Institute and that I get a
neuro-psychometric evaluation that I already had on order.
I was set to dive in and take care of myself. I did it once
in my life with alcoholism; I knew the tools; I put them to work on AD. Within
three days I was writing about it, then in a personal journal. My wife Diane
and I started calling around for help from Alzheimer’s Association and from any
existing support groups that might assist.
My experience with AA was this: They knew what to do; they
knew how to do: they had specific guides and sign posts to follow in recovering
from the acute phase of Alcoholism. One of the key tools was attending AA
meetings. Equally important was their admonition: Turn your life and your
addiction over to the care of a “higher power” who could and would take care of
it for you.
I followed the rules closely and it produced a wonderful
recovery of 31 years of sobriety now 37 years. I learned what works, what doesn’t
and stuck with the plus side of that column.
Older brother AD had nothing of the same. In fact it was
doing nothing but leaving us to swing in the wind with it. What few support
groups there were 99% were for caretakers. I attended one early on, saw it
through its limited run and tried to organize a permanent support group out of
it. I found no help from the people running the program nor interest in the
other of those early stage afflicted who attended.
I continued the directions of my doctor. As part of my of
the occupational therapy we were interviewed by the Neuro-Psychologist who I
first tried to see for a Neuro-Psychometric test but he was too booked up. I
was nevertheless able to get in to have a consultation.
I arranged to have the narrative of the Neuro-Psychologist
what had tested delivered to this second Neuro-Psychologist. I had it in his
hands before the consultation and asked his office to have him review it before
my appointment. I had the narrative accompanied by the test results a copy of
the Raw Data taken in the testing process and all of my medical records sent
him.
I had learned in dealing with Neuro-Psychologist and
Neuro-Psychometric Tests in the Courtroom that the Raw Data was the most
important data to be reviewed by another Neuro-Psychologist. Reviewing the Raw
Data a second examiner could interpret the test and validate or discount the
final conclusions and diagnosis of the initial tester.
When we were in for the appointment this doctor took a
history, said he had reviewed my neurologist’s records and the records of
Occupational Therapy including the driving test results and other test
conducted by them. I asked if he had reviewed my Neuro-Psychometric records
from Dr Holker who conducted my Neuro-Psychometric test. He said he was unaware
he 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 need
them any further for this consultation.” He completed the consultation then
told me: “You do not have AD!” He went on to say “I can’t say what it is you
have. You have something that is some kind of Dementia. I could follow you, do
my 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 be
assured I could find which one is the dementia you have.”
We elected not to have him follow me. His “Brouhaha” his quick
consultation and his cursory review of Dr Holker’s records of me including the
Raw Data of the testing received review by him of no more than 2 minutes if
that.
Knowing what can be done with this accumulation of data by
another Neuro-Psychologist from my experience with them in lawsuits I knew so
much could be done with them. I had no confidence with this character. I knew
he had no clue about this previous testing that had at least validated my
complaints and should have been helpful. He was also too into himself and his
opinion to be impacted by the view of another professional. This position was
validated on return and review of it with Dr Terrell, my neurologist.
I went two years relying on Terrell and discounting the aberrant
Neuro-Psychologist choosing to believe I had an atypical variety of AD which
accounted 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 the
clinics 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-Psychologist
available to me.
This third guy was not as arrogant and flamboyant as the
previous one but he did agree with the conclusion of the second guy. He did not
agree with the first Neuro-Psychologist.
This threw me for a royal curve. “If not AD what the hell do
I have, what should I do about it?”
I carried this question back to Dr. Golden. He told me the two
Neuro-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 AD
as there were people with it. Not one of them is quite similar with any of the
others. Most Psychologists rely on an agreed set of symptoms adopted by the
Board of Psychologists. These are contained in the Diagnostic Statistic Manual (DSM)
classifying all mental diseases into groups put there by their similarity of
symptoms. This is periodically updated by the Board of Psychologists. Too many
psychologist rely on matching complaints of a patient to the list of symptoms
the DSM requires before making a diagnosis of AD. The DSM is rigid and too many
practitioners are equally rigid in trusting the results of the comparison and
matching as trusting their own clinical judgment.
He finished telling me I could rely on Dr. Terrell an expert
on 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 thing
the 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 so
they must adopt tests, make measurements, analyze tissue all with an agreed
upon format and a range of results agreed to be significant in determining what
a malady a given result is.
This is wonderful if it works. But, in medicine there are so
many gray areas of a kind best described by: “It could be this; it could be that!” It is in
this the practice of medicine needs to be above all an art form depending on
the expertise of the practitioner to take all of the data before her/him and
draw a reasoned conclusion in diagnosing the condition.
The definition that accompanies the disease of AD is prone to
error because it takes something general in character and tries to make it
specific to the exclusion of anything that does not fit within the confines of
that 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 of
the disease process. It has everything to do with sensationalizing the disease
in order to draw in contributions for research.
The disease is presented to the public in such dramatic ways
to produce fear and alarm in the public about succumbing to it. As the people
having it grows finding a cure becomes more urgent. The professional support
network has maintained this melodramatic characterization to cause alarm
intended to produce more funds in research.
This was dramatized by Harry Johns President and CEO of the
Alzheimer's Association who, on January 27th 2011, declared: "Alzheimer's
is a tragic epidemic that has no survivors. Not a single one!" He made
this statement which was accompanied by a journal giving the statistics of the
rampant growth of AD as it has reached epidemic proportions. He went on the say
there was nothing that could be done to arrest the disease or even slow it
down. The only way to control the epidemic is to eradicate the disease by
finding the cure.
This subject will continue in my
next post consistent with what I have been saying as part of this topic, namely:
My topic is Alzheimer’s Disease (AD) and/or Dementia. My
position is this: In Advocacy and Definition of so much about AD Dementia is
simply all wrong!
There are too many other schemes going into the servicing of the
needs of AD and those affected to produce competent and adequate treatment.
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