i wrote this blog 8 years ago on my younger brothers birthday april 8 2011
he was 60 on that day
he was in the throes of alzheimers disease
in the blog i write about calling him on his birthday knowing that on the next one he wouldnt be able to even talk on the phone with me
a little over 2 years he was gone
just a few years earlier my mother had died in the final stages as he did in 2013
i was about to enter the adni study in the mild cognitive impairment group portion of the study
i was about to have my genetic test for alzheimers done
the adni study did it but i wasnt given the results so i would have it done in a private lab
i was about to have a spinal tap for the amyloid and tau in the spinal fluid
i would have to send my spinal fluid to a private lab to get the results
it was a month or so later that i got those results
spoiler alert
i was apoe 4/apoe 4 which puts me at a high risk for having late onset alzheimers disease
the spinal fluid sent to a private labs showed my amyloid and tau levels consistent with alzheimers disease
later when i qualified for the biogen aducanumab study my amyvid pet scan was positive for amyloid
another positive finding that showed my diagnosis to be alzheimers disease
today i know for sure
back then it would be awhile before i knew for sure
i knew they would be all positive
i think i was ready for the word
i do sit here this morning thinking wondering what my state of mind was when i made that call
i was talking to me in a few years when i talked to him
this all seemed surreal that day i think
i also that day wrote about caregivers the lost ones in the alzheimers stories
they need your support
dont forget them
04-08-2011
ALZHEIMERS STORY
today is a close relatives birthday
ill call him and wish him a happy birthday
he wont remember it though
he has alzheimers and is in the mild-moderate stage
ill call him anyway as its the right thing to do
i feel like somewhere inside he will know i called him
ill send him a belated birthday card
its something he can look at maybe more than once
maybe he will know its me
he was diagnosed over 5 years ago
he has gradually progressed in his disease
i want to reach him while hes reachable
i want to wish him a happy birthday today
dont forget the caretakers in all of this
they are the one that suffer the most
they are the one that have to take over everything now
the cooking, cleaning, finances, home maintenance and repair,
shopping, going to medical appointments for both, having all the
emotional aspects of the disease to themselves with no partner to
share it with, car maintenance, socializing by themselves if at all
if you know a caretaker be there for them
it can be a long haul for them
any reprieve for them is helpful
it doesnt get better
remember you will be affected by this disease in some way
its too prevalent
if you are a caretaker reach out for help
use friends, churches, local organizations, the internet, and the
alzheimers association website-www.alz.org
the alzheimers website has a good caretakers discussion group
they are lots of people in your shoes out there
it helps to get involved or at least read the postings
there is also information where you can get help
seek it out
dont forget to take care of yourself in all of this
dr oz did a show on alzheimers yesterday
it may be related to diabetes of the brain ie insulin receptors
being affected may be the cause or one of the causes of this
disease
i think it has multi causes and is definitely genetically transmitted
ie the tendency to get it
he preached diet
diet can help but like a lot of this it has to be started when
people are young to have its major effect
where am i with my diagnosis
i am still on aricept 10 mg a day
i have a genetic testing that is pending for the apoe gene which
is the most common one associated with alzheimers
i have an appointment in 10 days to start a new research study
at ut southwestern in dallas
during that study i will have a spinal tap and studies will be done
to test for amyloid protein and tau protein
if abnormal then my diagnosis of alzheimers will be certain
i will post all of this when it is completed
it probably will be all completed in mid summer
there will be alzheimers walks to raise money for research in october
encourage everyone to get involved
a lot is happening in research now with this disease
november is alzheimers awareness month
again remember you will be affected by this disease
i will on the panel that day with other people diagnosed with alzheimers
each person present with their spouse will represent different stages of the disease
what do we think about all this is what we want those in the audience to hear
here is the link to the conference
here is the link to my team and the walk site
click and donate and or join us
or
donate or join your local walk where you live
the organicgreen doctor
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