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
but
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
eg
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
otherwise
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
like
the memory tests
the full neurological history and exam
now
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
why
i wouldnt be in the study unless they were all abnormal
so
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
no
we arent ready
i dont think anyone can be ready when it all goes into overdrive and takes off
but
we can be somewhat prepared as much as you can be
no
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
well
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
on
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
so
yesterday
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
so
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
but
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
but
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
so
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
so
as i drove home that day by myself for the two hour drive back home to santa barbara
well
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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