Consistent with the name change I have made from “My Alzheimer’s
Afterthoughts” to “Dementia Endured” for my Blog; delving deeper into the
reasons for this change; more discussion is called for to explain the change. Therefore,
as I return to more active posting I am going to do that in the next number of
posts.
From the “GitGo” June 30th 2006, mine has been
consistently diagnosed between the two neurologists with whom I treat as “Alzheimer’s
Disease” (AD). After a Neuro Psychometric battery given me by the neurologists’
Neuro Psychologist, at the end of 2008 I was told in no uncertain terms this is
not AD. “Can’t say what it is!” said the psychologist. It seems closest to a
brain damaged by the two diagnosed and the four undiagnosed mini strokes I encountered
in the past 10 to 15 years he said.
I had been active writing about my AD. I had been more
active advocating with the local and national Alzheimer’s Association (AlzAss)
about AD and my experiences with it. After the neuro psychologist’s firm denial
of the diagnosis by the two neurologists of the same clinic; both of whom referred
me for this analysis, I was as agitated and troubled as I was when I was
initially diagnosed and been assigned the label “You have AD!!!”
First I had to cope with an AD diagnosis that struck me out
of the blue. Then I had to deal with the fact that I had been a living fraud
for 2¾ years. The fraud was simply this: The foundation of my writing suggested
I knew something of the experience of having and coping with AD. Now that I was
told I did not have it, how in God’s name could I speak with any authority
about it!
In my view I lost my standing to participate in the AlzAss.
I could just see my fellow afflicted saying, “Ya, easy for him, he can still
read, write; he still has cognition; he can analyze! He can’t have what I have,
he is scamming when he says he does!”
I was not ready for this; too often in my life I had been ostracized
for “being different.” This wasn’t going to happen this time. I was outta there
before they could ask me to leave! I said nothing but quietly removed myself
from AD activity.
After proscription by the psychologist I was back in to the
neurologist to review the offending Psychometric Exam. I told him how
devastated I was by the diagnosis. He said not to worry, I had AD. He went on
to say there are as many different kinds at AD as there are people who have it.
“Go back to writing about AD; go back to activity with the AlzAss” he said.
My status remained
intact until 2012 when my wife Diane and I voiced the same concern that had existed
unspoken between us for some time. I was not going the way the other folks in
my AD acquaintanceship were going. There were two of us in this group that were
kind of hang-gliding with the disease.
Both of us hang-gliders believe it has
been because of our following the Best Practices: Eat Right, Exercise Daily, Get Involved in Stimulating Intellectual,
Social and Creative Activity, Take your Medication.
Nonetheless, analyzing I can still
do and analyze I will.
I went to the neurologist who first
diagnosed AD in me. Both Diane and I questioned him about the blessed irregularity
of my AD the nearly six years since he diagnosed it. Could I have limitation
similar to that of AD but in fact it be the result of the micro strokes I have
had? He sent me for another Neuro Psychometric with the same guy who did it in
late 2008.
I got the report which contained
the same although more forceful diagnosis: “It is not AD. It is more than
likely vascular, the result of serial undiagnosed micro-strokes that continue
causing deterioration in brain function similar to AD.” This was his diagnosis and comments.
Now, more background for this
discussion:
I have limitations, many and
significant. I do not see things in
plain sight or at least do not interpret them quickly. Example: after driving
through the stop sign I look back wondering why the hell I didn’t stop. For
this reason I can’t drive; I can’t ride a bike; I fall down a lot tripping over
something I fail to see, or losing me balance which is tenuous at best. This
has broken bones and lacerated me badly.
I can’t handle money; I can’t keep
my accounts, even my check book. I get very emotional to the point I need to
take a tranquilizer periodically, far more than I like to do. I can’t stand
crowds; I can’t keep up with the conversation of normals; I need to keep a
routine in my life or I cannot function.
This and more was confirmed in my
first Neuro Psychometric exam by another Neuro Psychologist. She confirmed the
same findings as the guy who did the subsequent exams. Her conclusion was
however different.
She said I do not fit into the
normal AD findings regime. At the same time she ruled out all other causes. I
had more frontal lobe damage, but did not have the specifics for a frontal lobe
diagnosis. She ruled it all out.
I had decent memory findings. Executive
functioning and visual perception were off the scale below the bottom. It put me
into the intellectually challenged level in both arenas. My judgment was bad; I
had difficulty finding words to express myself. I had to go slow determining
what is said to me, I don’t understand much that is said without taking the
time to interpret it. My spelling is abysmal. I was the consistent spelling bee
winner in school competition.
All considered, test findings,
history, presentation, positioned this first psychologist to diagnose me as
atypical AD. I didn’t follow the pattern but my symptoms did not fit anywhere
else she said. This made sense and it made sense at the time to my two neurologists.
Having that background, coming back
to my present concerns, this all now has me back in the neurological office a
couple weeks ago following up on my third neuro-psychometric. I was into see
the neurologist who first diagnosed AD six years ago.
He acknowledged: I had not followed
the course he would have expected based on the diagnosis he made of me in 2006.
I do not have enough findings for him to label my symptoms as resulting from
vascular insufficiency. With the history I have I could easily have a dementia
the result of mini-strokes. I could easily of some AD and some vascular
dementia together. The only difference is names given what I have. I finished
with a diagnosis consisting of a shrug of his shoulders.
What is significant about the
foregoing?
My experience is not uniquely my own.
Many of us afflicted by dementia have the same confusion. We ask “What do I
have? Where do I fit? Who can help?”
If you are beyond what is called
Early Stage, you know it and if not everyone else knows it. Then it is too late
to do anything about it!
In the early stages there is so
much that can be done to slow the disease, to suspend the rapid deterioration,
to save us all, person, public and country, the high cost of care. But instead
of making this available all of those who are ostensibly helping are busy
raising money to find a cure for the people in the future who get it.
This brings us to the conundrum we
are soon to face. What do we do as the baby boomers stampede into their senior
years and start getting one form of dementia or another? At present-day prices,
current costs of care, there is not enough personal wealth, not enough insurance
proceeds for those smart enough to have gotten long term care insurance, not
enough public money either locally or nationally to foot the bill.
Where will this end?
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