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I Have Alzheimer’s or Another Dementia
I did have a very hard
time with the words and stories. But if they gave me hints, I often was able to
remember some. I did much better when they asked if certain words were said.
But just coming up with the words myself unaided, I really was very poor.
That seemed to be fairly
worse than last time. But everything else may be the same. Just can't remember.
I do feel that I have declined in the last few years. I just can't cope with
organizing, and I stop mid sentience and don't know what I was saying. I
misplace things a lot. I feel significantly dumber. If that makes sense. I
really don't like being with others because I feel like they look at me funny.
Does any of that seem
familiar to others?
Much of that seems very
familiar. I was diagnosed with Major
Neurocognitive Disorder (not mild, or moderate), which is the new fancy term
for dementia. The lady who did the report
thought possibly due to physical health condition, but subjected that to being
ruled out. The Neurologist I saw, just
ruled out the medical part and said is Alzheimer's. I too am Young Onset, since I am under the
The difference between MCI
and AD is one of degrees. My
understanding is it goes MCI > Mild Neurocognitive Disorder > Moderate
Neurocognitive Disorder > Major Neurocognitive Disorder. However, when I think back to 4-5-6 years
ago, there is a HUGE difference in my ability to function in my daily life
between those times. 6 years ago, I
likely would have been MCI. Mine has
been a steady progressive decline.
You make complete sense to
me. The wait is hard. The results are harder. The aftermath hard too. One day at a time.
The best advice I got, is
that you are still you no matter what the test says. The test is just one snapshot in time. Whatever you have, you had before the
test. And you will still be you, after
the test. YOU, your you-ness, does not
change because of the test.
While you wait, a
proactive thing you can do is to start researching and coming to understand
what each of the various parts of cognition are (ie working memory, executive
function, short term memory, etc.), and what they really mean. It will help you to understand your high and
low scores, and how that actually translates into impact on your life.
Learning the various parts
of cognition also helped, I found, to answer what was my ever-present question
at the time - why are some things so easy and some things so hard, even on the
Taking on the task of
organizing can be daunting and hard, being organized can help a great
deal. Regarding misplacing things, I
made rules for myself, that certain things only ever go in certain
places...like my keys by the door, or to never set my phone down in an unusual
place. It can help to label things. Sometimes, certain adaptations seem silly
(like labeling things), but then...after you do it, there is a relief. Sometimes it is hard to gauge the stress of
carrying information around in our heads with us.
Stress makes cognition
worse. So maybe spend the next couple
months doing some nice things for yourself.
Maybe read a good book. Things to
distract you and help time pass.
Sounds like you have had a
report before, but if not, what will come back will be a lengthy, somewhat hard
to decipher step by step set of numbers of each of the test results. If you are lucky, the author will
parenthesis the tests in various comments they make. They will be a diagnosis in the back, along
Somewhere in there, it may
use the word "probable" that is the highest, most affirmative answer
they can give you...as they can only be sure on autopsy..."probable"
means you have it. It does not answer
why you have it, or if it is something fixable like Normal Pressure
Their will be a section on
emotional and mental health, and at the go-over, you will want to ask upfront
and be clear, could depression or anxiety cause this - because those are
fixable. Either way, you will appreciate
knowing that answer over time and in many varying contexts.
I thought I aced parts of
the test, only to find I had really low scores in them. Maybe little girding yourself in prep for
that. The report often stings a bit.
The stories, I could only
follow the first paragraphs...could answer none of the questions after a
time. How you say about with help, my
report says that I am much better when cued than when I try to freely recall
information. <--- This is where CG's
and others could be especially useful, and helpful.
Feeling dumber, totally
makes sense to me. My IQ dropped from
163 (or to 86.
Withdrawal is pretty
normal. Hard to stay wanting to be
around people when it is obvious you are struggling. I think it is a self-preservation instinct.
Hang in there. What will be will be...and two months really
will pass...and the sun will keep rising.