Saturday, August 18, 2018

alzheimers news-lets talk about it

ALZHEIMERS NEWS-LETS TALK ABOUT IT
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about 8 years ago i was blindsided by my diagnosis
mild cognitive impairment due to alzheimers disease

this diagnosis was based on
a normal memory testing followed by a series of abnormal ones
a strong family history of alzheimers diease
a positive spinal tap for the bad beta amyloid and tau protein
a positive amyloid pet scan called amyvid
a positive genetic test for the apoe 4 gene which puts you at an increased risk of getting alzheimers

this is how you diagnose this disease in 2018

once diagnosed i was overwhelmed since i had seen it up close in my mother and brother
so i knew first hand what was in store for me in the future

i really thought it would be full blown alzheimers disease by now 2018
8 years is a long long time in alzheimers years

somehow i feel like i have gotten a reprieve
why
im not sure

maybe its because my diagnosis was done so much earlier than most people by luck i guess
well maybe luck is not a good word to be used when you talk about this disease

maybe because i got real motivated to take care of my health
so
i
changed my diet my sleep my stress level did a lot of things i enjoy doing
went on a regimen to improve my health and make sure everything lab wise was normal
well my b12 and vitamin d3 was low
but i fixed that

i also entered this study now 18 months ago
the biogen aducanumab study using antibodies given as infusions to remove all that amyloid or some of it from the brain
i either got the placebo or the real stuff
i feel like i got the real stuff

do i notice some memory issues
yes
but it seems no more than anyone who is my age
i do well on the memory tests
not 100% but i pass them
my scores are better than some of your scores

so now that im diagnosed
now that im better or stable
i feel like i have gotten a reprieve
i am thankful for the last 8 years
i want another 8 like these last 8

all ive done is enjoy retirement
maybe more than most do
i really really appreciate what ive been given
and
i like talking or writing about it

its seems when folks get a terminal disease they just do better and their friends and family appreciate it when you are open and talk about it and yes even joke about
yes i make jokes about it
after all
laughter is the best medicine you know

dont ask me about alzheimers
ill talk your ear off
ill talk until you just turn away and walk off
hoping that some of what ive said sunk in and maybe helped you or your family

i like talking to folks about this disease
especially the less formal question and answer sessions
especially small numbers

folks ask me about
side effects of the medicines
i got that one for sure since i can tell them from personal experience and of course as someone who has prescribed those meds
what and when to get an evaluation
as early as possible i say
should i have genetic tests
only when you are ready emotionally socially and financially
its a little overwhelming
like some one who has the huntingtons disease gene test
if its positive you know what you are in store for
so it is with alzheimers

but
to slow this disease down
to get to it soon enough
it seems now
you have to know long before i knew
you have to start doing things to improve your health
and
when the new drugs come you have to start them long before your memory loss starts

we all need to be talking about this
alzheimers thing
those of us who have it
those of you who will have it
and
talk freely about it

dont be afraid to
its therapuetic

the organicgreen doctor

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