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

Wednesday, July 13, 2022

my story revisited #142-its still not fair


as i was giving my presentation that day on my story a person in the audience was crying and wiping her tears away as she heard my story 
thats happened more than once over the years

in the graph below that i call the alzheimers graph as i talked about where i would be in 10 years i pointed to the graph
i was diagnosed at 60
i had some memory loss documented on memory tests
my mri was negative
my spinal fluid for abnormal levels of amyloid and tau was positive
a few years later my amyloid pet scan for amyloid was positive

if you look at the graph at about the 72 year old level 
my memory is in the normal level
my mri is normal not abnormal
my amyloid is positive on scans and probably on the amyloid blood tests
if i could see my next amyloid scan next year my amyloid scan would probably be negative for measurable amyloid after receiving two more years of aduhelm or aducanumab
i had a tau scan last week 
i wish i could see if any of my tau has been removed

so whatever i am doing whither its is luck or the healthy things im doing or the aricept or donepezil im taking or the aduhelm or aducanumab infusions im getting
i am doing well 12 years after being diagnosed

im much better thatn that graph would predict
if you go from the 72 year old point and go upwards on the graph 
i should be having early alzheimers dementia signs and symptoms

so far im not

biogen aduhelm or aducanumab embark study update
i will be receiving my i think 36th infusion and 18th real drug aduhelm infusion next week having gotten 18 months of placebo at the beginning of the study


life isnt
is it

the other day as i was talking about my story with possible
alzheimers disease
as i was going over what happened to me and how i was
some would say its not fair that it hit mid stream when i was just
getting my stride
when i was really getting good at what i do
being able to sort out what was important as i assessed
each patients visit based on my knowledge of the patient
and their social situation
the workup and treatments were different for folks
with the same complaints

thats whats called the art of medicine
i had just gotten good when
bam i was broadsided
just redirected i guess

wish i could do a do over
but we dont get to do that do we

so as i was talking about this alzheimers graph that i have
posted several times i put myself on this graph
knowing that
i have some early short term memory issues i only notice
short term memory loss on neuropsych tests
abnormal levels of beta amyloid levels and tau levels in the spinal fluid
the possibility of an abnormal amyvid pet scan for beta amyloid in
the brain

throwing that on the graph you can almost predict when i will
start to go down hill in the next 10 years
hopefully the aricept (donepezil) is slowing that some

i dont feel sorry for myself
im active doing things i like to do
gardening blogging volunteering traveling seeing family and
doing those talks

i feel like my wife she says in the video at the top of the blog
we have a good life we take one day at the time

as i was telling the group all this and was telling them about
my friend who died two years ago with huntingtons disease
a friend who was recently diagnosed with cancer

i feel like im lucky as things could be a lot worse

i have time to enjoy life and time to extract what i can from it

as i was talking to the group a young lady listening
someone i didnt know
had tears rolling down her cheeks
her eyes were red
she was wiping those tears away as fast as she could

please dont feel sad for me
its not fair
i know
im luckier than most
its still not fair but ill take what i got

the organicgreen doctor

1 comment:

  1. That’s great news. You deserve a good report. You have worked for it.