MY STORY REVITED #74-WALKING IN MY SHOES 
its been over eight years since i wrote these two blogs about going to my neurology appointment two years after getting my diagnosis
that was my status then
i saw a neurologist in her private clinic at the university of texas southwestern medical school
she also was the one who was the director of the study i was in
so she had access to some of my research information that she was allowed to see and to those generated in her office
i found i got better care and a better evaluation that way
today i am doing the same thing at ucla
at the two year mark i had had a good through evaluation as good as you could get anywhere in the us
the only thing missing was the amyvid pet scan
the ones done in the adni alzheimers research study i was not able to see the results and neither could the neurologist
it would be 4 years plus later before i got one that i would get the results of
that was the one for the biogen aducanumab study that i am in now
it was positive and i was accepted in the study
at the time of the neurology appointment i was still having some memory issues that would show up on my moca memory tests and my neuropsychological exams
it was about this time my disability had me do an 8 hour neuropsychological exam
i flunked it enough to get my long term disability until i was 66
however over the next few years my memory testing gradually got better so that in the last few years my moca memory testing has been in the normal range
also when i do the full neuropsychological exams i can tell my memory testing is normal now
i had been on aricept (donepezil) for two years
my biggest issue with it was it decreased the amount of hours of sleep i would get
i would wake up early and not be able to go back to sleep
that hasnt changed even today
the neurologist tried a few medications for my sleep but the side effects were worse than not sleeping
the only time i have slept good in the last 8 years was after my whatever i had event in march when i lost 40+ lbs whick i think was covid and completely lost my appetite and ability to tolerate food
the medications after my march event they gave me they all seem to improve my sleep but the side effects were not tolerable so they were stopped
i felt drugged all the time like i was stoned or i had other effects like headache nausea etc
i have learned to live with the loss of sleep
i nap each afternoon based on my sleep the night before
eg last night i slept 5 hours so today ill try to take an 1-1 1/2 hour nap
my mother had died a few years before i was diagnosed
my younger brother was in a long term care facility
my older brother was told he might have it
the writing was on the wall for me
i sort of knew what i was up against
i wished i could have talked to my mom and my younger brother as that entered the beginning of their disease until their memory was gone
to know what they were feeling as the disease progressed
i know they knew there was something wrong
they knew im sure where they were heading
i just dont know if they ever voiced those thoughts
thats what i am doing writing my blog
im voicing my thoughts as i go along here letting you know what might be inside your loved ones head as they progress in this disease
there is not a day that goes by that i dont look at my age and think of how long it took my mom and my brother to die from the disease
then
project where i am with a mental overlay to measure where i am and how long i have before things go bad
yes
i think about it every day
i hope you never have to walk in our shoes
__________
09-27-2012
today i am going back for my almost 2 year follow up
since i was diagnosed with mild cognitive impairment
amnestic type that stage right before full blown alzheimers
disease takes off
today i went back and read some of my blogs about that
time period
here are the links to those blogs
last day thanks
the dreaded doctor visit
the neurology visit
since that time i have retired and am on medical disability
for my diagnosis because of the risk of making a medical
error because of my short term memory loss
i know from testing that i carry the apoe 4 genotype which makes
these symptoms likely to be from alzheimers disease
i also have an indeterminate testing results for tau protein
and beta amyloid in the spinal fluid
(those are the two biomakers that are abnormal in this
alzheimers disease thing)
i have a normal mri normal glucose metabolism pet scan
normal screening labs
and a consistently abnormal neuropsychological exam
ive had eight of these since the beginning of all of this
and one was an eight hour one
(thats the one that convinced the disability insurance to
pay on my claim)
i have a strong family history of alzheimers disease
my mother died in the final stages of the disease
my father may have had the disease
my younger brother now has the disease and is in
a long term care facility
i am on aricept (donepezil) for the possible alzheimers disease
its really the only thing that helps
but it does not affect the progress of the disease
just the symptoms
maybe
its all there is for now
i am staying active mentally and physically
i dont let this drag me down
at least im alive and healthy and am doing a lot of things
that i am enjoying
except of course im not practicing medicine which is what
i enjoyed the most
there is a test that may give me the definitive answer
its the beta amyloid pet scan
ive had one already and will have another next year with the
study that im in
the (adni) alzheimers disease neuroimaging initiative
but they dont give me the results
it would be the piece of the puzzle that im missing
the test is now available commercially in some areas
the amyvid pet scan
they inject a radioactive substance that attaches itself to
any anyloid deposited in the brain
if amyloid is present it will show up as red highlighted areas
if i have no amyloid present then there is a good chance that
my symptoms are not from alzheimers
not definite but as definite as you can be
if amyloid is present that doesnt mean you have alzheimers but
it implies that you might
i want the test to add to what i already know
now we just need a treatment to stop or slow this disease down
if my test is completely normal i might have a chance if this
disease shows up later for that treatment that is coming
otherwise my generation has missed out on the cure or treatment
but at least i will know
i want to know
its like having metastatic cancer
theres no treatment
but i want to know if its metastasizing
so i can speed up my planning for the rest of my life
i want to know
09-28-2012
FOLLOW UP APPOINTMENT
i drove 3 and a half hours to my appointment yesterday then
drove 3 and a half hours back home
its worth it that driving to dallas to get my care as
i am able to get as uptodate evaluation as you can possibly get
much of which is not available to most people
yet
but it will be soon
my biggest issue besides not knowing 100% whether i have
alzheimers or not is not sleeping well
its the side effects of the aricept (donepezil) that i take for
this possible diagnosis
(the earlier you start this medication the better it works and
the longer its effects will be ie i could gain time by taking
the medicine-that means symptoms will be delayed but
will eventually show up
but im willing to take the medication to gain that time )
i will be trying a new medicine to use as needed for sleep
hope it works
if i stop the aricept (donnepezil) for a while the sleep
disturbance goes away
i also wanted the amyvid pet scan
thats done for amyloid deposits in the brain
it looks like i may be able to get it through the manufacturer
who is looking for people to do the scan on as they train
people to read them
will write about the results when they are obtained
maybe i can get a photo of the scan also
the accuracy of this test is really affected by the quality of training
that the radiologist or neurologist has undergone
so it is my brain and i will get it tested
the video that was done that you can watch by clicking on
video on my story with alzheimers at the top of this blog is
being nominated for a national award from a national
neurology association
i also have tentative invites to do a talk to physicians and other
providers in a medical school in dallas and at a research
symposium in tennessee on alzheimers
my point of view will be from a physician with this possible
diagnosis and from the patient viewpoint
something they probably need to hear
until youve walked in those shoes you dont really know
__________
here is hoping you or your loved ones dont have to slip on our shoes
the organicgreen doctor
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