ALZHEIMERS NEWS-I DONT HAVE A TATOO ON MY BRAIN
last week when i was at ucla getting my #22 aduhelm infusion in the biogen study called embark to remove the amyloid from my brain
i had gotten 18 months of placebo before i got the real drug
do the math
thats 40 infusions so far
i asked the research director any chance i could ever see my amyloid pet scans or my tau protein pet scans or my mris
i told her i would like to line them all up and compare them over time
eg
i had a amyloid pet scan around 2013 then one in 2016 then i have had two since
one before the pandemic and one last year
i have one scheduled next summer and the next
it will tell the true story of how much amyloid is still present
i have had at least two tau protein pet scans also
i have one scheduled next summer also
i have had 15+ mris of the brain
man if i could just line them all up and look at them
so i have two amyloid pet scans that would show the amyloid that went untreated for several years
i wonder if it progressed
then
my last two should show less amyloid
the one next summer should show little if any amyloid in my brain
my tau protein pet scans hopefully would show it hasnt progressed any
its possible aduhelm may slow this down some also
then my mris all laid out would mainly look the same
which is remarkable that there has not been changes over the last 12 years
i definitely dont have any tattoo on my brain
no she said
as of right now there are no plans to let yall see the scans
bummer i said
this week dr daniel gibbs wrote a blog doing just what i want to do
he was able to access his old scans and line them up for us to see
he then correlates what problems he is having with the location in the brain of the amyloid and the tau
if you are in the alzheimers world you should read his book and follow his blog and watch for his upcoming documentary on his story
if you are a new reader from the weekends audience that heard our panel of those who have the disease talk and answer your questions
you should read dr gibbs book and follow his blog
he is one of you
a medical professional who did alzheimers research and treated alzheimers patients
but
he also is one of us who has the diagnosis
he has mild cognitive impairment that has now progressed to early alzheimers
sadly as this disease wins in the end he like me will not be able to tell you what we see think or feel about this terrible disease
take advantage of the access you have now
thats also true of any of your family who have this disease
he like me sees this as a patient and as a physician
he adds the fact he was a alzheimers research neurologist
a unique prospective
i suggest you pause and click on this link for his most recent blog and read it
looking closely at the scans
his amyloid pet scans show the amyloid going away some while he was taking the aduhelm infusions
when they were stopped because he had a large aria bleed then the amyloid has returned and worsened
his tau pet scans show how his tau tangles have progressed unstopped
it correlates with some issues he has
he still writes but no longer does the financial stuff
he also shows the mri scans that show the aria bleed he had in his brain
man oh man
for me when i read his blog it felt sobering to me
knowing that thats going to be me soon
not the aria bleed but the progression of the disease
where you can see it marching across you pet scans as it progresses
like watching a metastatic cancer move across your pet scan of your body
i really wish i could line mine up and look at them
its a request that i will pursue after the study ends in two years
now
lets see what effect the aduhelm infusions has on my memory and my activities of daily living
thats the true test
i have been asked to talk for a few minutes at our walk to end alzheimers this year in santa barbara
i will be representing those of us who have the diagnosis
you can join and or donate to our organicgreendoctor walk team for the santa barbara walk to end alzheimers on saturday november 5th
here is the link to the conference
i will be on an alzheimers panel for alzheimers los angeles on saturday october 29th
the audience will be medical professionals
the organicgreen doctor
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