my story-i am done and here is my story

MY STORY-I AM DONE AND HERE IS MY STORY

this picture was taken not long before i retired in 2010
this is probably how many of my patients remember me
well besides being dr duck or dr duct tape

i was zooming along staying busy at 60 years old
i decided since my younger brother was diagnosed with alzheimers a few years before and my mother had died from alzheimers about that time that i would enter the normal control group of the national alzheimers study called the adni2 study

during the neuropsychological memory test i was found to have memory loss greater than i should have based on my age and degree of education
i noticed no issues nor did my wife she or my nurse or my patients or my colleagues
i did develop some subtle issues over the next 2 years but that cleared up

my life changed after that
within a month i had medically retired with a diagnosis of mild cognitive impairment thats turned out to be due to alzheimers disease 
this diagnosis was verified with blood tests spinal fluid tests and amyloid pet scans

i must say i knew this day would come and it did back in 2010

i was placed on aricept or donepezil in 2010 and have remained on it since
it may be one of the reasons i am not having breakthrough memory issues since i was started early on in my diagnosis
earlier than most folks take it

i also got aggressive taking care of my health
my b12 level and my vitamin d3 levels were below normal and my homocysteine level was elevated
these i maintain in a normal range with oral supplements

i stay active physically mentally and socially
i eat a healthy diet similar to the mind diet
today i probably feel better than i did when i was diagnosed
i know my memory is better ie its in the normal range and has been there for several years now

around 2014 as i was finishing the adni2 study i began monitoring the aducanumab drug that was going into clinical trials 
then in 2016 i was accepted into the biogen clinical trial of aducanumab now called aduhelm 
i received first 18 monthly placebo infusions 
then
i received 34 monthly aducanumab or aduhelm infusions

my initial amyloid pet scan should have been full of amyloid plaques like the one on the right
my final one in june should show its all gone now like the one on the left

aduhelm or aducanumab is a monoclonal antibody that grabs the amyloid plaques from the brain

i have only had an increase in headaches each month thats easily treated with otc acetaminophen for a few days
i also have developed ocular migraines each month recently 
i had a large one about 2 years ago but none since
i get screened frequently with mris of the brain
my mris look the same as it did in 2010

however my amyloid pet scan should be normal now

again looking at the amyloid pet scans above 
the one on the right with all the red stuff which is amyloid is what mine looked like in 2016
today my amyloid pet scan should have no red stuff or very little red stuff like the one on the left

i was scheduled to get 8 more monthly infusions of aduhelm
however
i was called last week and was notified that next week my #35 aducanumab infusion will be my last

biogen will report out my study called the embarks study later this month at a national alzheimers conference
i plan to watch it live on the internet

i am hoping it shows that all the amyloid plaque is gone and that memory testing shows that there is a large percentage decrease in memory decline
sort of like leqembi or donanemab showed

this is the results that biogen should have waited on before they sought fda approval

so here i am with my diagnosis and no amyloid plaques left in my brain

what do i do know
well i wait
it may be one two three four or five years before i need retreatment to remove any new amyloid plaque that may accumulate
so far science or medicine doesnt know when to retreat
but
i will be watching closely at the research

i also will be watching newer drugs to treat amyloid and new drugs to treat tau tangles and new drugs to treat inflammation

my goal is not to let this be the reason i die
i hope to slow it down so i can remain cognitive intact as long as possible

why am i doing better since i was diagnosed 13 years ago

it may be i am just lucky to be one of those chosen ones that have a long slow course with this disease

i am hoping its because
i am aggressive with my health
i started on aricept or donepezil real early in my disease earlier than most folks
i started on aduhelm or adumcanumab infusion earlier than most folks who take it

add those up and thats why i am sitting here blogging about this 
something i didnt think i would be able to do today when i was diagnosed in 2010

i have no complaints

all that i have done once i was diagnosed is available to all of you
you just have to do it

actually you should be doing most of it before you have symptoms

yes
i am entering a new phase
its kinda sobering
knowing im just waiting for all that stuff to come back
like someone who has cancer

yes
i have no regrets


join me for our santa barbara walk to end alzheimers on saturday october 14th
join us and or donate to our organicgreendoctor team 
or do your own local walk

the organicgreen doctor