my story revisited #88-newsletters on alzheimers

MY STORY REVISITED #88-NEWSLETTERS ON ALZHEIMERS

the alzheimers newsletters would come out every few months from the alzheimers center at ut southwestern
ucla as well as other centers have similar newsletters

in the one mentioned in the blog below they wrote about sleep and its effect on alzheimers and the effect of blood pressure control especially in patients with the apoe 4 apoe 4 gene the one associated with late onset alzheimers disease

this made me think of this linked newsletter that was about my story that ut southwestern did about 10 years ago
the writer was an experienced former newspaper reporter
here is the newsletter titled from physician to advocate
the story starts on page two

i thought about doing that interview and doing the photo shoot for that newsletter
he did several interviews with me and did a lengthy photo shoot with me and my doctor and others for the article

today it seems i am coming full circle again 
at the end of my blog 8 years ago 
i wrote
now we need is some way to prevent it or treat it

i recently was interviewed by the new york times about my story and my involvement with the biogen aducanumab story and my thoughts on whether it should be approved for use in alzheimers

i gave my thoughts as a patient 
but
i also gave my thoughts as a physician and a science based person 

the things sometime conflict with each other

we will see how the interview comes out in the article

i have a photo shoot in a few hours with a photographer from the newspaper
we will meet in our community garden to start the photo shoot there

i feel at peace when im there and i have done photo shoots there before

i hope the article and photos capture the essence of what this treatment is all about
what it means to us the patients in this study
and
maybe to all of you who are affected by loved ones with the disease

it means
some hope

i will post the link to the article when it is published

doing these stories and being interviewed causes one to do a lot of soul searching about where you are with your life
there is usually excitement followed by a period of melancholy as the truth sinks in

stay tuned
__________
NEWSLETTER UPDATE

this morning i received via email the newsletter from the
alzheimers disease information network
when i read the first article
i said ruh roh

a new study showed that 'sleep is disturbed in people who have
early alzheimers disease but who yet dont have the memory loss
or other cognitive problems characteristic of full blown
alzheimers disease'

all of the study subjects were normal that is that they had no memory
issues at all but
about a fourth of them had positive biomarkers in the spinal fluid
(which i will blog about each friday over the next 4 weeks)
which means they had preclinical alzheimers disease
that is they had beta amyloid and tau protein levels that were abnormal
and probably had beta amyloid accumulation in the brain already

these people with the abnormal biomarkers were found to have poorer
sleep efficiency than those who did not have them

ruh roh
i know that im in that group as i have abnormal levels of these biomarkers
in my spinal fluid and will soon find out via an amyvid pet scan of the
brain if i have beta amyloid accumulation also

and do i have sleep disturbance
no trouble going to sleep but i have restless sleep at night
just ask my wife
i nap during the day

is it the chicken or the egg
does sleep disturbance have an effect on developing alzheimers or does
alzheimers cause the sleep disturbance

my theory
these sleep changes occurs years and years before people notice alzheimers
and
the beta amyloid and tau protein abnormalities occur also years and years
before alzheimers in a person is recognized by the person and their family
those protein changes and the destruction that results
are the causes of the sleep disturbance


in alzheimers disease as mentioned above the beta amyloid protein starts
accumulating years and years before symptoms occur

researchers at the university of michigan have isolated a molecule from
green tea that seems to interfere with the misfolding of these proteins in the
brain thats been associated with alzheimers

so does that mean that we should all be drinking green tea to help
prevent alzheimers disease

maybe


nature.com

then a study from ut dallas looked at whether controlling high blood
pressure early in life may slow down or prevent the formation of the
changes in the brain associated with alzheimers disease

they looked at patients who carried the apoe4 gene which if you have
the double gene of it
like i do
you have a 15x increase chance of developing alzheimers and if you
have mild symptoms you have a 60-90% chance of developing
alzheimers disease

then they compared patients with the apoe4 gene who
had normal blood pressure
untreated mild high blood pressure
treated blood pressure

they found that those patients who had apeo4 genes and had untreated
high blood pressure had more amyloid accumulation in the brain
that hallmark of alzheimers disease
than
those treated apoe4 hypertension patients and those with apoe4 and
a normal blood pressure

so these results suggest that maybe controlling your blood pressure
may significantly reduce risk of developing those hallmark deposits
of amyloid in the brain

remember this study was done in people who are normal with
no memory issues

so gradually we are starting to put the pieces of the puzzle together
for the alzheimers disease puzzle

now all we need is some way to treat it or prevent it
__________
a lot has happened in the alzheimers research world in the last 10 years
however
ten years later you still get the same work up now as back then except maybe if you can afford an amyloid pet scan
you still have no change in the treatment option
its still just aricept (donepezil) and its related drugs
nothing new

that said there are several promising drugs in clinical trials that have some promise
this process is a slow one

as i told the writer last week
aducanumab is probably my only chance to get a drug that might help slow this down
the ones in research now probably wont get here in time to help me and others

its aducanumab or bust for some of us
but the question is will it really work for us

we should know in two years when my present study is finished

even if it gets approved in two weeks
the question still remains
will it really work

the organicgreen doctor