ALZHEIMERS NEWS-I HAVE NO TATOO
thats right
i dont have a tattoo on my brain but he does
dr daniel gibbs a retired neurologist wrote in his blog a tattoo on my brain and in his book with that name and now with a documentary with that name
he got a tattoo on his brain
i did not
he is a retired neurologist
i am a retired family physician
we both retired due to our diagnosis
mci or mild cognitive impairment due to alzheimers disease
he in homozygote for apoe4 ie he is apoe4 apoe4
making him high risk for getting alzheimers diseaes
i have the same apoe4 apoe4 gene
we both entered the biogen aduhelm or aducanumab study receiving monthly infusions of aduhelm
after a few infusions he developed a massive brain bleed that almost killed him
thought to be due to the infusions of aduhelm
its a risk that is explained to you when you sign the permits
i read it like he probably did and probably like him i accepted the risks
after months of rehab he eventually returned back to where he was when he started the aduhelm
he now will not qualify for any new treatments
why did he bleed
having the homozygous apoe4 apoe4 put you at risk for brain bleeds
these patients like he and i can get deposits of amyloid in the walls of blood vessels so when the aduhelm or the new drugs leqembi or the new drug donanemab are given they tear the plaques off the blood vessels which can cause brain bleeds
thats what happen to him
he almost died
now i didnt have brain bleeds or edema called aria or amyloid related imaging abnormalities
i did have bad headaches with visual aura that would incapacitate me for 15 minutes to an hour after i got my highest dose of the drug
these headaches lasted several days and over time became less and less intense
after stopping the aduhelm at the end of the study my headaches resolved and have not returned
knock on wood
his mri shows iron deposits where he had bleeds
he calls them a tattoo on his brain
my mri is normal and shows no tattoo on my brain
his amyloid pet scan which you can see in his documentary has gradually progressed over the last few years
this matches his decline he notices as he talks about in the documentary
my amyloid pet scan since i got 34 months of aduhelm shows no amyloid plaque
my amyloid pet scan has gone from positive to now negative for amyloid plaque
his amyloid pet scan is red throughout
my amyloid pet scan is now red free
the question is if he had been able to complete the full treatment like i did would he be able to do all those things he was doing when he had his bleed
would it make a difference
for me my memory i feel and those around probably feel the same is the best its been over the last 14 years since i have been diagnosed
my moca memory test are now normal
i usuall score 29-30 on my moca test
orginally i scored a 25
for those who are familiar with the test
he scores at 22 which is probably early alzheimers disease vs previously he was mci
to be political here if both biden and trump took the moca test they would more than likely not score in the normal range like i do
the moca test is being mentioned a lot in the media right now
maybe some test like that should be required for the public to know about our politicians especially our presidents
when i scored a 25 and was diagnosed i chose to stop practicing medicine because in my occupation i knew what that meant
the same would be for an air traffic controller a pilot a general or a president
thats not for me to decide
it for us as a society to decide
im just glad i have no tattoo on my brain like dr gibbs has
if you are in the alzheimers world i recommend you
read dr gibbs interiview in the jama or journal of the american medical association
watch his new documentary linked here
we watched it on paramount tv
when i watched the documentary it was surreal
i watched his wife the new caretaker as she seemed to be in pain emotionally
it was hard to watch
i first watched it alone and later watched it with my wife she
yes i cried since i realized that would be me some time in the future
hopefully not soon
since for me i know thats where i am headed
how soon i dont know
but
i am enjoying each day i have gardening being with my grandkids and family writing and doing all the things i enjoy doing
yes
i dont have a tattoo
im glad i dont
addendum
in a recent posting on the dementia website being patient they reposted part of my interview i did with them about being in clinical trials
it is liked here
the organicgreen doctor
Interesting. Good to be your FB friend again. My dad and his brother had zero short term memory for years before they died.Their older sister, a retired teacher, had full blown Alzheimer's. I just turned 73 and...afraid the "Payne brain" is affecting me. Do you think Prevagen would help?
ReplyDeleteno prevagen has not been shown to help
Deletetogd