welcome to the organic green doctor blog

i am a family physician who was diagnosed with
early mild cognitive impairment(mci) amnestic type on december 21, 2010
this is a precursor to alzheimers disease
because of this diagnosis i have opted to stop practicing medicine
this blog will be about my journey with this disease
please feel free to follow me along this path
i will continue blogging on organic gardening, green living,
solar power, rainwater collection, and healthy living
i will blog on these plus other things noted to be interesting

Friday, August 20, 2021

alzheimers news-staying ahead

ALZHEIMERS NEWS-STAYING AHEAD

this link below on how to sign up for the ahead research study sponsored by the nih or national institute of health floated across my alzheimers news feeds this week
the drug is biogens lecanemab or ban2401
its a first cousin to my drug aduhelm (aducanumab)
it most likely will work better than my drug

i wish that when i was 55 that this was available then i would have jumped at the chance to be in this alzheimers treatment study 

at 55 i was 5 years away from getting diagnosed 
accidently diagnosed as i described it
it was discovered when i entered an alzheimers study to be in the normal control group
during the neuropsychological memory testing it was found i had short term memory problems
this lead to my diagnosis of mild cognitive impairment found later to be due to alzheimers disease
based on memory testing and abnormal spinal fluid for amyloid and tau and a positive amyloid scan

so at 55 my mother was in the final stages of alzheimers disease
my younger brother was in the middle of his downward course for alzheimers
my dad had died of a heart attack but i think he also had alzheimers disease when he died
i knew it was going to happen to me
was i ever right

at 55 if i knew that i could start on a drug that could probably slow down cognitive decline by about 30%
man you know i would have jumped at the chance even though i was having no symptoms

the ahead study linked here is looking for patients
who have no memory issues
thats right no memory issues
who are 55-85 and in good health 
who may have risk factors for alzheimers like one apoe 4 gene and or a family history of alzheimers disease and or an abnormal amyloid pet scan 
a study partner that can go with you for the visits

remember if you are genetically linked to me you likely have apoe 4
also about 15% of you have the apoe 4
the apoe 4 gene is a risk factor for late onset alzheimers disease

basically if you are prealzheimers or another word for it is prodromal alzheimers you will qualify for this study 
which is diagnosed by finding normal memory with a positive biomarker like a spinal tap for amyloid and tap thats abnormal and or an amyvid amyloid pet scan

when i was 55 i most likely was prealzheimers and would have qualified for this study

for the ahead study you are screened first
well screened i must add
then
you will have memory testing
then
you will have a amyvid pet scan
some similar studies are using the new for research blood tests from amyloid and tau

if you are accepted when all the testing is done then you will receive every two week infusions or every month infusions of either a placebo or the real drug

remember if you get into the study that means you will know that you have already got alzheimers but you have a chance to get treatment that will likely slow down the disease
usually after a period of time the placebo folks are also given the real drug

i would have jumped at the chance to do that at 55
so 
now 16 years later at 71 i would have received 16 years of a drug that would slow down the alzheimers disease

the general consensus is that this drug will get approved eventually by the fda probably in about 5 years for use in treating alzheimers before you start showing symptoms and in the early part of the disease like i have

man
i wish it had been there for me
but
its there for yall who are going to need it 
its there now
it just takes
some time and effort to have it happen for you

eg in texas its being given in dallas and houston 
in california its being given in san diego and los angeles and san francisco
in arkansas you would have to go to dallas or another nearby state

the links below will show you where its being given now
ahead study link
clinical trials.gov link
the last link lists the criteria in more detail for the study

lillys drug donanemab is also similar to this one and is doing studies now
here is a link to its studies on early alzheimers disease
it will probably work the same if not better than the lecanemab
they also will probably do a study on prealzheimers patients

so
be proactive and get treatment now
or
wait until symptoms show up 
warning if you wait too long then it can be too late to use it for you

you have to be thinking ahead
to win in this game 

fyi 

here is the link to the transcript of my recent interview with being patient

also this week i had my 28th infusion in the aducanumab studies
the first 18 were placebo
the next 7 were the real drug aducanumab in the original study
the next 3 were the real drug aducanumab in the restart study
so now i have had 10 infusions of the real drug aducanumab

i do wish this was all happening 16 years ago

the organicgreen doctor

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