my story revisited #96-would she have been too late for the new treatment

MY STORY REVISITED #96-WOULD SHE HAVE BEEN TOO LATE
FOR THE NEW TREATMENT 

this morning when i was reviewing what old blog to write about i came across this one from 2013 comparing my symptoms and workup and my diagnosis in 2013 and comparing it to hers

who is she
pat summitt

we were diagnosed about the same time
she was diagnosed with alzheimers disease
i was diagnosed with mci that is turning out to be due to alzheimers disease

she lasted 5 years after her diagnosis
she died in 2016

i am still with us
10+ years ago i didnt think i would still be cognitively here in 2021
my memory it actually better than it was when i was diagnosed in 2010

i once got a call to be in a symposium sponsored by her alzheimers foundation
it didnt work out for me to be there in knoxville

so would she qualify today to receive aduhelm (aducanumab) if she was just diagnosed

now the fda didnt publish very good guidelines on who should get it
here is a link to a new recommended protocol for who should receive aduhelm
one of the authors has over 5 years experience treating patients with aduhelm (aducanumab)
why didnt the fda do this to begin with 

looking at this protocol for myself i definitely qualify
then
looking at what i observed from watching her on tv and interviews and reading articles about  her and reading her book
i think she would have qualified based on these criteria

nowadays she would have been able to get the amyvid pet scan to ensure she had alzheimers
she did while looking at the diagnostic tests she had ie memory testings mri glucose metabolism pet scan
so there is no doubt what she had was alzheimers disease
the amyvid pet scan if it had been done and was positive would have solidified her diagnosis

now if you looked at her 2-3 years after her diagnosis 
then she would be too late

thats why its important to get diagnosed early so treatments like aduhelm (aducanumab) and the ones that will come after it can be started early enough to make a difference

studies are now being done on prealzheimers or prodromal alzheimers 
the folks have no symptoms but have a positive amyloid amyvid pet scan or positive spinal tap for amyloid and tau or a positive blood test now being used in research

hopefully treating people before symptoms start would slow down the disease a lot more

__________
05-05-2013
SUM IT ALL UP


i just finished the book by pat summitt
the university of tennessee hall of fame womens basketball coach
who wrote this book about her career
and her progression to her diagnosis of alzheimers disease

she was open about her life
and open about her diagnosis of alzheimers disease

she even coached her last year while on the alzheimers drugs
aricept and namenda

after reading the book i was able to piece together her process of
getting diagnosed and how she began to notice the early symptoms

comparing my journey to hers

mine
mild cognitive impairment amnestic type
stage 2
hers
early mild alzheimers disease
stage 3

mine
mildly abnormal short term memory tests on the neuropsych exam
hers
more abnormal short term memory tests on her neuropsych exam

mine
positive beta amyloid in spinal fluid and mild elevation of tau protein
hers
not sure of her results
my guess was they were abnormal

mine
normal mri scan of the brain
hers
abnormal mri scan showed some early changes on the initial scan

mine
normal pet scan for glucose metabolism of the brain
hers
abnormal pet scan for glucose metabolism of the brain which
showed some decreased uptake of glucose which means she
has areas of alzheimers disease that has developed

mine
amyvid pet scan of the brain
ive delayed this for awhile
hers
not sure if she has had one

source
her book sum it up

so her diagnosis is a more firm one
she has it and it has progressed some

mine is possible alzheimers disease at this time and
more testing in follow up will show a trend if it occurs
towards the positive diagnosis

so
pat summitt you are my buddy
wish you well

but man after reading that book
i dont think i could ever play for you as a coach
but
with your record of success you definitely seemed to know
what you were doing
__________
would the aduhelm have slowed down her disease
probably
if it works

do i think it works
yes i do
time will tell us how well it works

eg
in ten years if i am writing this blog 
then
you will know it worked 

the organicgreen doctor