my story revisited #193-what if it came true

MY STORY REVISITED #193-WHAT IF IT CAME TRUE

when i wrote this blog 8 years ago i was a year away from being accepted in the biogen aduhelm or aducanumab clinical trial where i ended up eventually receiving first 18 months of placebo then 35 monthly infusions of aduhelm or aducanumab
aduhelm removes amyloid plaques from the brain

what does that mean for me
my final amyloid pet scan i will have done in 2 weeks should show most if not all the amyloid plaques should be gone from my brain

then
two weeks after that i will have a tau pet scan

in the process of developing alzheimers the amyloid plaques accumulate and damages and kills brain cells first then later tau proteins in the nerve cells unwind and form tau tangles that kill brain cells then
later inflammation occurs which also kills brain cells

as the tau tangles spread around the brain where they end up determines what symptoms you will see in your loved one who has alzheimers disease

the aduhelm infusions also removes and prevents some tau tangles from forming but only to a small degree

if i could see the tau pet scan i could tell how widespread the alzheimers disease was in my brain
i dont get to see the results since its protected by the study
when the study ends biogen will decide whether to release them
usually they do not release them
so
i will have to just wonder about the scan

the end result will probably be that all those treatments will have slowed down the disease some
how much we wont know for awhile 
when they rescan folks like me who have been treated to see how long it takes the amyloid to reaccumulate they will know
some estimates i have read is around 10 years

maybe something else will get me before then

when i wrote that blog i was excited at all that was ongoing in the alzheimers research world

today i am even more excited
________
05-01-2015
WHAT IF
there was a cure for alzheimers disease in the next 10 years
thats the gist of
this article from the wall street journal

we actually could be that close if a lot of the studies
going on right now shows that the treatments used
work

we already are finding out that aggressively doing healthy things
can not only prevent or slow down not only alzheimers disease
but also heart disease and stroke

like
the mind diet
control of blood pressure cholesterol diabetes weight stress
anxiety depression sleep abnormalities
correcting abnormal labs like thyroid b12 homocysteine vitamin d
exercising
staying mentally active

there are several big studies going on right now using the
new alzheimers vaccines mainly in people who are
destined to get alzheimers but have no symptoms
if it works this will be part of the new approach

drugs that shut down the production of the bad stuff
beta amyloid that is found in alzheimers patients
these studies are ongoing now

a new anticancer drug seems to slow down the progression
of alzheimers disease

a drug given to patient with strokes that clears up tiny
blood clots in those patients may also work to clear
things up in alzheimers patients brains

a combo of vitamins and supplements may help slow
down the progression of the symptoms in alzheimers
more research on this is needed

etc etc etc

so what if
this all works

first
half of all nursing home beds would be emptied
saving the government and individuals millions
and millions of dollars

second
all those caregivers would be released from the stress
emotionally and financially of caring for their loved ones

third
those research dollars for alzheimers could be shifted to
other diseases

fourth
millions of patients destined to have the disease
will not
they can continue to be productive human beings

fifth
the fear of getting this much dreaded disease as one
ages would not exist

so i think about this
hoping that it will happen
in time for me and my siblings

we can all hope
_________
i get asked frequently what folks should do

here is my advice
presume you are going to get it and do all those healthy things mentioned above in my blog
even if you dont get it you will get other health benefits from it like less chance of a stroke or heart attack or kidney failure etc

if you get tested for the apoe 4 gene be sure you know what it means
it means you are at risk for getting late onset alzheimers disease
you can overcome that risk by yes doing all those healthy things listed above
also knowing your apoe 4 status also scares the  heebie jeebies out of you to
yes you got it do all those healthy things above

if you are at risk due to family history or risk factors you might consider finding a treatment trial for folks who have amyloid plaques in the brain but have no symptoms
those studies are ongoing now across the usa

aduhelm leqembi donanemab are all doing those studies now

it seems from study results that the earlier in the disease you seek treatment the better the results
i feel like i am doing as well as i am because i have been aggressive in my treatments

i expect that most of my relatives a generation below me will probably be in that category 

i expect these 3 drugs will apply for fda approval to be used in prealzheimers if the clinical trials show that they work to slow down the disease by starting before symptoms start

they are working on injections of these drugs that can be given at home for mci and mild alzheimers
leqembi will probably get that approval next spring

if you arise having symptoms please get evaluated early in your symptoms
there are other things that affect memory like depression anxiety medications stress loss of sleep low b12 low thyroid to name a few
treatment can improve your symptoms from these non alzheimers causes

think of alzheimers like its cancer
early detection can make a difference

if you do get diagnosed and you are early in the disease consider treatment with one of these anti amyloid drugs

soon to arrive are anti tau drugs anti inflammation drugs maybe crispr gene therapy and oral versions of anti amyloid drugs

the future treatment will be an anti amyloid drug plus an anti tau drug plus an anti inflammation drug

so 
yes
there is more hope than when i wrote this blog 8 years ago


starting november 15th consider donating to our fundraiser for our community garden for which i am the volunteer garden manager 
even a $5-10 donation  will be helpful

i consider i am treating my alzheimers disease by being the volunteer manager
by being
socially active
physically active
mentally active 
a stress reliever

doing garden meditation
having access to organic fresh produce

 seedmoney.org allows community and school gardens to fundraise then allows them to compete for grants of up to $1000
eg we spend about $1000 a year on supplies to grow our veggies for planting and our plant sale

go to this link to see our crowdfunding site
https://donate.seedmoney.org/8831/trinity-gardens

on or after november 15th  please consider donating to help keep our good work going
all our produce we grow goes to those in need
the more we raise the higher a grant we qualify for

the organicgreen doctor