about 6 weeks after i had my diagnosis made and was started on aricept (donepezil) i had a followup appointment with my neurologist
this was to be an important appointment
she would check on how i was doing on my meds
well
i was nauseated every morning like someone with morning sickness
i couldnt sleep and if i did i dreamed all night long
i had blurry vision for awhile after i took my aricept enough that i wouldnt get on a ladder and was careful driving
lucky for me the blurry vision gradually got better
i had a lot of leg cramps the get you out of bed leg cramps
my legs muscles especially my calves would fasciculate
they would look like worms crawling under my skin
that is persisted even today
ask me when you see me and ill let you watch
i was a little hyper in the morning especially afer adding my coffee to my side effect of the aricept
but even as i described to her my side effects i knew they would all get better
well most of them
i also knew that there was a possibility by starting the aricept so early in the disease might make it have a much longer effect which looking back over 9 years it apparently has had that affect
i am here this morning writing this blog as living proof
if you had asked me 9 years ago if i would be doing this i would say no way
i really felt i would be more like my younger brother was when he was diagnosed or where pat sumitt was when she was diagnosed
sadly they are both gone now and im still here
i was suppose to be evaluated to be in the adni study in the mci group instead of the normal control group but the adni at that time was delayed for 3 months
also the day of this appointment there was a big ice storm and snow storm and we couldnt make it to dallas that day
it all got delayed
also at this appointment i got my apoe 4 dna test done
i thought i knew what that test meant but now that ive learned a lot about the apoe 4 gene i today understand what it really means
its not the death sentence that i thought it was
not all with the apoe 4 or apoe 4/apoe 4 gene get alzheimers disease
some do some dont
but
you are at a much higher risk though of getting alzheimers disease
i thought it was a death sentence when i got back my results
now i realize its just a piece of the puzzle that when you put it all together it says alzheimers disease
then
it was at this appointment i was to arrange a spinal tap to get fluid for the beta amyloid protein and the tau protein levels
these are two biomarkers that are used to help make a diagnosis of alzheimers disease
we decided to avoid an extra spinal tap that i would wait and when they did the spinal tap for the adni study they would give me extra spinal fluid to send off to have it tested in a private lab
remember tests done as part of the study are not reported to me
i had to pay to have them repeated in the private labs
spoiler alert
the eventually spinal fluid showed my biomarkers the amyloid and tau were positive
even then i didnt understand what it all meant like i do now
oh what 9 years of time and lots of research articles read what a difference in understanding what it all means
it took me probably 2-3 years to get all the data that was needed to make a more definite diagnosis
so today in 2019 i know as definitively as one can know short of dying and getting a brain autopsy that i have alzheimers disease
02-01-2011
NEUROLOGY APPOINTMENT
today i have a neurology appointment for follow up
after starting the aricept
i also will have my genetic blood work drawn today
thats the first step to help verify a future diagnosis
the test is a dna test for the apoe gene
hoping for the non sucky one
then i will schedule my lumbar puncture for the amyloid and tau
proteins that can be abnormal in alzheimers disease
then after that i will have the pet scan done which measures
activity in the brain
people with alzheimers even real early alzheimers have a certain
pattern that shows up on the scan
it could be a good month or a bad month
02-03-2011
WANTA KNOW?
whats the point of knowing if there is no effective treatments or cure
thats one view point
when you receive a positive test you are receiving a death sentence
not soon but in the near future
forget a face, loose your keys, forget a name and you are reminded
of the diagnosis every day
if you know and things deteriorate then you have to give up the car
keys and the checkbook (thats scary)
you can arrange for long term care, get a living will, update your
will, get durable power of attorney, get health care power of
attorney, do a bucket list of things to do, and preserve memories
(which im leaving a record of my journey and my past in this blog
so my family can look back and know about my journey)
i wanta know and am glad i know
ralph waldo emerson had dementia in his 60s
when asked how he felt he would say 'quite well, i have lost my
mental faculties but am perfectly well.'
02-16-2011
NEUROLOGY APPOINTMENT
uneventful event
no change in medication
the research study is 3 months behind so i will have to wait until
then to get the other tests i need to have done
i will wait for the study so i wont have to get more than 1 spinal tap
that sounds reasonable doesnt it
the spinal tap results will confirm what is already expected in my
diagnosis as the diagnosis is usually made from the
neuropsychological evaluation and on the medical history and
the family history
the spinal fluid is analyzed for two proteins called amyloid protein
and tau protein which are at abnormal levels in the spinal fluid of
people with alzheimers even real early like mine
this will soon be the tests that will be added to the others that
people have done in their evaluation for alzheimers
its not readily available yet but will it will soon be part of the
standard testing done
it really doesnt alter the treatment plan but it makes the
diagnosis more definite and can be helpful in cases like mine
where the symptoms are so early
so now in 2011 many doctors are adding the spinal tap the apoe gene studies and the amyvid pet scan for amyloid to get a more definitive diagnosis
that was not being done in the private world 9 years ago
so now i know for sure and i have learned to deal with my diagnosis
the organicgreen doctor
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