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.
When I was re-born in
Dementia World (namely diagnosed with atypical Alzheimer’s Disease) I was
appalled by the confusion in definition of what in fact is AD what is Dementia
and 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 a
number of limitations associated with dysfunction in parts of my brain
disclosed by history and validated by testing. It included primarily
limitations in Executive Functioning, Multi-Tasking and Visual Perception.
Memory and cognition had faults but were not abnormally low like the three
preceding functions.
In many ways my diagnosis told me what my dysfunction was
not. It was dementia; it was not typical dementia; it was not typical AD. The
final conclusion was it was atypical dementia of the Alzheimer’s kind.
As a result I knew I had limitation in the way I functioned
which produced limitations in what I could do and not do. I could not drive. I
could not ride my bike. I could not handle money or keep account of it. I
became too anxious in reviewing financial matters, became too anxious in
crowds, felt intimidated when I was with normal people as I tried to keep up
with conversation, activity and normal social interchange.
At the same time my cognition remained good, my memory was
good, my ability to read, to write, to speak publicly to generally care for
myself 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 turned
atrocious; I tend to become more anxious in a variety of instances. One of the
instances is emotional upheaval; I cannot take it and get very depressed when
it happens.
It is really typical of the residue of stroke damage. I have
a history of mini-strokes (TIAs). It is for this reason I chose the neurologist
I did. He had treated me for these strokes, and his specialty is stroke
treatment. I am however told by my neurologist and the first neuro-psychologist
although it had earmarks of stroke the findings were more consistent with atypical
AD
Early on following diagnosis I was treated by a clinical
psychologist who had specialty qualification in AD and Stroke. When I pointed
out my cognitive acuity and questioned it as AD he told me I was just
manifesting a high cognitive reserve. He explained that due to my basic
intellect which was on the high side, coupled with my education and
professional experience I had a large cognitive accumulation. The disease
likely damaged my cognition but there was a lot left after this which I could
work with. This is what accounted for what appeared as undiminished cognitive ability.
This made sense. It made more sense
as I followed the recommendations about how best to retain and or increase
cognitive ability. I adopted the formula for enhancing cognition the rule known
as the BEST PRACTICES which consists
of this: “Eat Right, Exercise Daily, Get Involved in Stimulating Intellectual,
Social and Creative Activity, Take your Medication.”
I have endeavored to follow each of
these admonitions, the hardest of course, maintaining a consistent exercise
program. Reading and writing is probably the greatest of my involvement.
The writing I do on this blog and
in other publication, which involves analyzing much of what I read has been an
excellent activity for me. I write almost 2 – 4 hours a day. I socialize and
advocate within AD circles. I attend the Gathering, an excellent one day twice
a month program put on by Oak Knoll Lutheran church. I maintain my friendship
with the four amigos, AD peers of mine. I do a lot of artwork, and work with
and/or attend tours with two Art Galleries.
This not only helps me, it has made
me an advocate for the overlooked needs of Early Stage Dementia sufferers who
have been virtually abandoned by the professional community. Those, together
with the high cost of care and the absence of economy in care, have been the
two issues that have sparked my passion as a writer and an advocate.
This has effectively given me a cause with which to finish
this final phase of my life. It could be depressing were I not to have it. In
having it and learning to cope with it I have learned what is truly important
in living. Before my diagnosis I was in charge of my future, I saw to my
happiness. This is typical of all of us. An adage of mine has been: “A young person wonders what she or he will
be. A middle age person strives at what
he or she has become. An old person ponders
what was its worth?”
I never found satisfaction doing this; everything always
came up short! I crossed the river into Dementia World and this all changed. I
recognized 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 to
and could do with what happened. I dedicated the remainder of my life to
writing about Dementia from the unique position I was in, namely on the inside!
This background leads me to my next subject which will be in
my next post. It will be a greater fleshing out of the two paragraphs with which
I started this post, 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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