alzheimers news-update and more

ALZHEIMERS NEWS-UPDATE AND MORE

i am now 8 days post infusion
having received the first aducanumab infusion
well i might have got the placebo instead
eventually ill find out which i got

for those who dont know what aducanumab is
its an antibody against the bad beta amyloid
that is thought to be the cause of alzheimers disease
at least based on the amyloid theory

the antibody binds the amyloid and removes it from the brain
if it works the scans for the amyloid is clear
the memory gets better

the two symptoms i have noticed so far
are
a low grade headache that i occasionally have to take acetaminophen
to relieve
fatigue that worsens as the day goes on
both
i can live with

now i have a low grade iritis an inflammation of the iris of the
eye
that also can cause these symptoms
i control it with daily steroid eye drops
however
i dont think this is a flare of my iritis

heres hoping my headaches and fatigue continue
it could be that i am getting the real medicine and not
the placebo
i sure hope so
i dont want to lose 18 months of treatment until
all of us in the study get offered the read deal aducanumab


i have been following
karen garner
in her blog called
missing jim confessions of an alzheimers wife

jim died over a year ago
she occasionally blogs to let us know how she is doing

i suggest you click on the above link
to get the feel of what its like to deal with a loved one
with this disease
even a year after their death

i am afraid folks that this diseases effects on caregivers
and loved ones
never ever go away
her blog still oozes with sadness
she is one of thousands so affected


then
last week
now i have thought about this a lot
since i was diagnosed
it was even a segment on the alzheimers movie still alice

someone with the disease
reaching that point
i sitting here today can see where that point is
but
like in the movie still alice
when that point arrives
you are usually to gone upstairs
to carry it through

here is the link to article on how a husband of an alzheimers patient
recognized when she reached that point

was is he guilty

i say yes and no


then
you know when someones heart fails to work anymore
its called heart failure

when someones kidneys quit working
its called kidney failure
now
when someones alzheimers disease advances
its called brain failure

thats what alzheimers disease is and leads to

brain failure

the organicgreen doctor

it was his day

IT WAS HIS DAY

missingjim.com

on the right side of this blog is a blog written by a wife
whose husband was diagnosed with alzheimers disease
in his early 50s
its called missing jim
she and he have two young kids still to raise
im afraid she will finish up their teenage years all by herself
she works and over time has now also become a caretaker
of her husband who has gradually lost the ability to safely drive

this is his birthday today
he and his wife are in washington dc today
he agreed thats what he wanted to do on his birthday
they are advocating for alzheimers disease
he being a prime example of why we need more money for
research so we can find a cure and treatment for this disease

it will not happen without more federal funding much like what
happened with cancer research when the feds declared war on cancer
lets call this one the purple war
a war on alzheimers disease

ill call this blog today
missing joe

the similarities between the two are similar
although my younger brother joes kids were already married
and had kids themselves when he was diagnosed with
alzheimers disease

he like jim was robust and healthy
well liked
a professional fireman and later a policeman
struck like jim in the prime of his life
heck my early 50s was my prime its when all the work we had
done came to a point so we could say we were successful
we were able to enjoy my 50s as this peak occurred
jim and joe did not
nor did their families

joes wife like jims wife worked full time while trying to take
care of him the finances the house and all it entails
jims wife in her blog writes down what its like
it disturbs me at times to read it as
i know thats what his wife and his family went through
its just not all written down for everyone to see

i also know that one day i will probably be a jim or a joe
im just hoping that it goes smoother than theirs did
you after all really cant prepare for this emotionally

so today
its jims day in washington advocating for us all
his birthday
happy birthday jim
and
its joes day
as we remember him
his fight with alzheimers disease
what a good guy he was
what his wife did and did so well and caring for him

we miss you joe
you wont ever be forgotten
happy birthday

thanks jim for helping us

the organicgreen doctor

one makes me angry the other one sad

ONE MAKES ME ANGRY THE OTHER ONE SAD
there are two groups in our society that are vulnerable
and sometimes folks do take advantage of them
thats
the young and the elderly
especially those elderly with memory issues and dementia
such as alzheimers disease

this article made me angry and sick
click here to read it

this is the reason why i lost faith in big pharma
i know for years as physicians weve used medicine off
label for health problems not approved by the
fda

respirdal (respiradone) was originally approved by the fda for
use in schizorphrenia
its now more widely used for other things
thats right in the young and the elderly

it was originally sold by johnson and johnson and its janssen
pharma subsidiary
now its generic

they are now paying a $2.2 billion dollar fine
for aggressively marketing respirdal for use in behavior problems
in dementia patients through an elder care sales force designed
to target nursing homes and doctors who treat the elderly

allegations are off label marketing and kickbacks to doctors
and pharmacies

i was given it recently at a real low dose to see if it
could help me sleep at night
since i have sleep loss from taking the aricept (donepezil)
it folks knocked me on my arse
i slept for two days
so i guess it helped some
but i was non functional
kinda like when i was taking vicodin and valium for my
ruptured disk
dont remember a dam thing when i was under their influence

please take the time to read this article
it will make you sick so you might have a barf bag ready

then
i follow a blogger who is married to a man in his early 50s
who has early onset alzheimers disease
her blog is called
missing jim confessions of an alzheimers wife

(if you really want to cry this am just click on the
video jim in his own words to the right side of the blog)

they have two young kids
she writes about her daily struggles with dealing with her
husbands illness raising her kids and working full time

you can just feel the stress extruding from her blogs

recently her son and her went to the library and got books
one he chose was
the disease book a kids guide

later he said mom read the section on alzheimers disease

she opened this kids book and read

alzheimers disease has been called the cruelest disease that
humans have ever faced for it gradually destroys the brain

simple bouts of forgetfulness may be the beginning
but the ending is always the same

kids get left out in seems in dealing with alzheimers
in family members
the alzheimers association has a section dealing with
kids and teens on its website www.alz.org
heres the link

im sure she wishes she had had him watch these videos and
read the information on this website instead
of reading what was in that book

kids and teens are really affected by this disease
for years

lets find a cure
they are the ones who will get to see this disease lessens its
grip on our society

the organicgreen doctor