my story revisited #90-they would say go for it

MY STORY REVISITED #90-THEY WOULD SAY GO FOR IT

i wrote the blog below 5 1/2 years ago which is 6 years after i was diagnosed
at the time i was in the middle of my evaluation to be in biogens aducanumab (now officially called aduhelm) study

i recognized a few years before that this drug may be the one that would get approved first and may actually potentially help slow down the alzheimers disease that was growing inside my brain

i had recently before i had written that blog linked below gone off my aricept (donepezil) for a period of time because of a bout of nausea and other reasons

i got a reminder that the disease was still up there as the aricept (donepezil) was wearing out of my system
a gentle reminder to me that it was helping to slow down symptoms
but
a gentle reminder that it was still there

i eventually got back on the aricpet (donepezil) and my mild symptoms signaling memory loss resolved

the same thing happened last year when i was sick with what i think was covid 19

as a reminder
aricept (donepezil) doesnt treat the disease directly it just slows down symptoms
it does this by raising acetylcholine levels in the nerve endings in the brain making the brain cells that are working to work better

aduhelm (aducanumab) actually treats the alzheimers disease process by removing the amyloid plaques from the brain
these plaques are the beginnings of the disease process
it also may slow down tau protein unwinding some the second part of alzheimers disease 
it also may slow down the inflammatory reaction some thats the third part of alzheimers disease

so
i have stayed on aricept (donepezil) and will remain on it
then
i will take aducanumab infusions monthly for at least 2 years as the plans are to do right now
that length of treatment may get extended i hope in the study i am in

i may begin those infusions as early as next week
i should know soon 

it is always interesting to read what i was thinking in the past and compare it to todays thinking

5 years ago i was thinking correctly since i seemed to have guessed right
__________
12-30-2016
ALZHEIMERS NEWS-WHAT WOULD THEY SAY
 
recently i ran across this article on
what would an alzheimers patient say to you
if you were caring for them as we approach the new year

for some reason as i read it it resonated with me

recently for multiple reasons i went off my aricept (donepezil)
one was a severe case of nausea that lasted for several days
i just couldnt tolerate taking the donepezil
it just made it worse

i know i know
ive written and have said so in my talks
dont let your loved ones go off their aricept (donepezil)
why
if they stay off too long
the benefit you gain from taking it gets lost

restarting it again
they dont return to the level of memory they were at
ie
they are worse

that warning rang in my head for two weeks
until i restarted it

so what did i notice

i started noticing subtle things that got a little worse
after a couple of weeks
i definitely was noticing i was missing things
not recalling conversations
it was a little disconcerting to me

what i wonder would i be like right now if i wasnt
ever put on the aricept (donepezil) 6 years ago
would i be worse off
i think i would

then
i returned back on the aricept (donepezil)
there they were again
just like 6 years ago
all those side effects
the vertigo like feeling all day
the blurred vision with movements of the head
trouble focusing
nausea much worse than usual
leg cramps
fatigue
sleep disturbances worse than usual
more vivid dreams

then
all of this got better
it took about 2 more weeks for this to happen
now
i seem to be leveled off in regards to the side effects
back to where i was a month ago
my memory seems slightly better than it was a few weeks
ago
but
as documented on memory tests
its below where it should be for my age

so
for me this transition off the meds
then back on
well
it was a scary one sort of
i realize what may be under all the effects of this medicine
that it is making a difference
and
im not ever going to stop it again
no matter what

so i realize that for me
this study i am trying to get on
the aducanumab study
its almost imperative i get on it
since there is not a better option for me and others like me
out there
that we can access right now

now there are a lot of potential things in the works
but
i am afraid like others that our train has left the tracks
for getting benefit from those

our hope lies in this one

i should know soon whether i get to move forward
if accepted i should receive my first of 48 monthly infusions
within six weeks

now back to that article
here is the link

if you are caring for someone with memory loss
or
will be in the future
then
read this
and
remember what they want you to know
as you care for them
__________

i consider myself one of the lucky ones
i wasnt too early to get aduhelm (aducanumab) and i wasnt too late either
i feel for those patients and their families whose loved one advanced too far to be helped

i feel lucky to be honored to be able to get these infusions

remember those of you in the alzheimers world
this is one reason you do clinical trials of alzheimers drug studies
you
might 
be 
like me
one of the lucky ones 

the organicgreen doctor