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

Tuesday, February 5, 2019

alzheimers news-my yearly

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each year since december 2010 i go into my treating neurologist for may annual office visit
now since i am in the research study and have several memory tests blood tests mris pet scans each year i only have to be seen in the private neurology clinic once a year

my neurologist i saw at ut southwestern was also one of the investigators on the research studies i participated in
sometimes i saw her on the research side and sometimes i saw one of the other investigators
the same is true at ucla
my private neurologist i see there is also one of the investigators for the research study i am in now
i usually see her a few times a year on the research side

the two areas
the private side
the research side
have to be kept separate
the labs scans memory tests pet scans done on the research side even isnt seen by the neurologist
someone contracted by biogen somewhere like in massachusetts sees my reports and scans but only sees me as a number
i might be 123456
with no name

occasionally like last year my white count dropped slightly so she got the result and i sent it to my primary care doctor
a repeat white count was normal
the private doctors dont see anything i do on the research side

so in order for me to get my prescription for the aricept (donepezil) i have to see the private neurologist once a year
some things have to be repeated by her that i had done on the research side
the memory tests
the full neurological history and exam

she knows for example even though she hasnt seen my amyvid pet scan of the brain that it is positive for abnormal plaques and clumps of amyloid
she also knows that my initial memory tests werent normal
i wouldnt be in the study unless they were all abnormal
she hasnt seen them she just knows they arent normal

each year over the last going on 9 years as i go in for this office visit it makes me rethink things a lot
am i ready for all this thats coming down the pike
are we ready for all this
we arent ready
i dont think anyone can be ready when it all goes into overdrive and takes off
we can be somewhat prepared as much as you can be
you arent ever fully prepared

discussed with my wife she check
got a will check
got a power of attorney check
got a healthcare power of attorney check
got a living will check
got long term care insurance check  note i came close real close to not being able to ever get this one
got my family knowing whats going on check
am i ready
no im not and never will be but we are and i am close

so i think about all this also a lot on my anniversary of getting diagnosed and stopping work
i have marked december 22 2010 as that date
i read my blogs around that time and take a few minutes to myself to just sit and think in an almost meditative mood all to myself
then i get up and move on

i do the same thing again
my moms birthday
my younger brothers birthday
i shed a tear sigh and move on

that what ive decided to do is move on

at my neurology visit its hard to do a memory test since ive done so many so my neurologist uses a different version of the memory tests each time
it tests the same things but the questions are just different even the pictures and the animals are different

i took the moca test a standard test that will pick up mild cognitive impairment and alzheimers disease
its probably the best in the office one to use
this one had all the questions different than the research ones i do
i can even ask the questions before they can but not on this one
i self scored it as i went along
i feel like i scored in the normal range
i asked my wife she who has to go to this visit
how did you score i asked
she always says the wrong one is getting their memory tested

my neurological history and physical exam was normal
my only issue as has been the case over the last 8 years has been my issue with sleep
i realize as long as i take the aricept (donepezil) i will struggle with this
ive learned how to deal with by scheduling a midday nap on my schedule each day

we talked about whether stopping my aricept (donepezil) would be a consideration
i know stopping it will allow my sleep to return back to normal
i and she knows that since i started this drug early in my disease that i am probably reaping the benefit of the drug slowing down symptoms more than most folks on it since i started it so early on in the disease process

i though know the score
if my experimental drug aducanumab doesnt do its thing in slowing down the disease that as the disease progresses it will reach that point where the aricept (donepezil) wont work anymore like it does in all alzheimers patients who take it
off the alzheimers cliff i will go like my mother and brother did
until that happens i plan to continue to take it

if the aducanumab works well thats just some great icing on the cake that i was allowed along with 1500+ folks to eat and enjoy

i got a 12 month refill of my drug

she also is part of a group thats working on an algorithm for primary care providers to follow when someone presents with memory issues in the primary cares office
you can just follow the flow of the diagram to help decide what needs to done
she wanted me to look at it to see what i think

i think i told her what a good tool to have to use in the office
i wish i had something like that to use when i was in practice
a quick reference to get the testing done to start a memory evaluation if its needed
i look forward to seeing the final product

some of this money for the work they did was from that infrastructure thing i wrote about last week
what a good place to start in the primary care providers office

as i drove home that day by myself for the two hour drive back home to santa barbara
i thought about all this a lot
im glad i was alone that day

im lucky i thought to myself
real lucky
ive gotten this reprieve from this disease that others havent got a chance to have

these last 8 years have been an enjoyable 8 years that ill never ever regret getting to enjoy

im good

the organicgreen doctor

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