my story revisited #220-my story revisited

MY STORY REVISITED #220-MY STORY REVISITED

That is me at ucla before i restarted my infusions i  think in about 2021

a lot has changed since i took my memory test for my long term insurance in 2007
i was 57 
I decided to go ahead and buy my long term insurance because of my strong family history of alzheimers
i got all of the memory questions correct and a few weeks later received my long term care insurance
if i had waited 3 years i might not have qualified to receive it.

at 60 i decided since i had a strong family history of alzheimers that i wanted to be followed annually by a neurologists to monitor me
if symptoms started i would stop practicing

i hooked up with the alzheimers center research center at ut southwestern in dallas
they would follow me annually with labs and memory testing and a baseline mri

oh by the way they said we have this 5 year study called the adni 2 study where we do regular labs spinal taps mri scans of the brain pet scans of the brain and the new amyloid pet scan for amyloid

so i added that to my testing

it changed my life as described below in my old blog
__________
11-30-2015

MY STORY REVISITED
last week as we were driving up to dallas to the alzheimers research center at ut southwestern
thats where all this started five years ago
unsuspecting i was then
i thought about how i felt driving up in 2010
compared to a few weeks later
compared to how i felt driving up last week
compared to how i feel today writing this blog

8 years ago i underwent a mental testing for my long term care insurance
that took about 30 minutes
i got all the answers correct
normal is to even miss a few
i didnt miss any

5 years ago i volunteered for the adni study
and
to be followed yearly at the alzheimers research center
because of my familys history of alzheimers disease
i was to be in the normal control group of the study
as i sat taking the memory test
some questions similar to the ones i had answered 3 years previously
all correct
now those answers were just not there that day
thats
when i realized there was a problem

a few weeks later i met with a neurologist
received the diagnosis of amnestic mild cognitive impairment
known as amnestic  mci
the precursor usually to full blown alzheimers disease

thinking back
it was a devastating diagnosis to me
and
to my wife she and my family
i immediately stopped practicing never to return
it turned my life our life upside down

all i could think was the terrible awful fight my mother
and younger brother had with the disease
i and we werent ready to be there yet
later that year a lengthy lengthy several hour evaluation by
our long term disability insurance confirmed the diagnosis again

so what did i do
what would you have done
luckily finances were not an issue with us

in regards to finances i put all my investments in our iras into a
target date fund only one making it easy for my wife she
to manage whenever i could not do it anymore
before with the help of my financial planner rainwater brother
my investments were more complicated and required more
regular interventions
so i simplified them knowing my wife she would never figure it out

i made sure all our legal documents were done
will power of attorney power of attorney for health care living will
no cpr when the time comes

now if i pass out
dear my wife she remember that time is not here yet

i did lots and lots of reading on alzheimers
i at times realize i know more about whats happening in alzheimers
research than many neurologists and most primary care doctors

i decided to find those things that have been possibly shown to
make me better make this disease process slow down
if you had noticed the problems i had the first time i did the memory
tests at the alzheimers center in yourself
you would have been very very concerned about having dementia
there was no doubt in my mind after that day that
my time had arrived

so heres what i did
i decided to be actively involved with the alzheimers association in
their walks to end alzheimers
knowing they were the big fund raisers for the fight against this disease
our government had drastically cut funding for this disease
actually delaying potential treatments by several years

i decided to be up front and personal with this disease
talking freely about my diagnosis what i feel about it
about my families fight with this disease
mother father brothers aunts uncles now maybe myself

i decided to do talks and answer questions about this disease
for folks seeking answers
ive done lots and lots of these over the last few years
as well as
helping families navigate the medical system to get the proper workup
diagnosis and treatment

i decided to be active socially mentally and physically
so i volunteer at meals on wheels habitat for humanity alzheimers association
and help with some school gardens
as well as maintain my own garden and ten acres

i decided to get aggressive with my health
get max control of my blood pressure
get max control of my cholesterol
get active doing my country n aerobics
get my blog to write at least once a week on alzheimers disease
for others to read and learn
get my weight and diet under good control
which ive maintain a normal weight and an almost vegetarian diet
the mind diet
get the most of life out of each day that i can without being too ocd
about it
i rarely sit around wasting time
sometimes i think i need to do more of that
get myself to relax and meditate some
i do this commonly when i work outside

then with the consultation with my neurologist
i decided to take aricept or donepezil for the possibility of this
being alzheimers disease

now ive had the side effects
initially they were severe but most are tolerable now
i mostly just shrug them off
nausea dizziness blurred vision leg cramps burst of energy in the am
loss of energy in the afternoon and evening restless sleep
real vivid non disturbing dreams
but
the worst side effect
the one that makes me at time not want to take the aricept
the lack of sleep it causes every night
as i told my wife she this weekend
imagine if you got only 5 hours of sleep a night
i know what you would be doing
riding a broom is what you would be doing

now i compensate for that loss of sleep by taking afternoon naps
without them i would be a zombie
now i have had bad zombie dreams where they were about to
get me but those have gotten better

i have incorporated these naps into my life
sometimes they interfere with things
but
thats a sacrifice ive made
knowing what could happen if i stopped the aricept or donepezil
i might come crashing down to a lower level of mental capability
that i would not recover from

for people like me with amnestic mci who carry the double barrel
apoe 4 gene
the gene that puts you at risk for late onset alzheimers
taking aricept or donepezil early on may delay the onset of symptoms for several years
the onset of that drop off a cliff that eventually occurs with alzheimers

those without the apoe 4 dont get as much benefit
i guess thats one good way to look at having the double apoe4 gene
i guess

this last week as i was taking my memory test
the same or similar ones ive taken before
i knew as i was taking it that i was definitely better than 5 years before

lets put a number on it
30 being perfect
for my long term care evaluation i was a 30
for my initial memory test at the alzheimers center i was a 23
trust me if your result was this low it would bother you
now
5 years later my score is 27 which is consider in the normal range

so basically i have returned back to a normal evaluation

why
i think its because of all the things ive done to improve my health
both my wife she and i agree that it may be partially due to the
benefit of the aricept or donepezil
i take 12 different supplements that have been implied to possibly
help with improvement of cognition or memory
basing it on a recent research study form the alzheimers center
at ucla

so putting it all together
i feel like i probably have early early alzheimers disease
based on going from normal to abnormal memory over 3 years
having a strong strong family history of the disease
having the double apoe 4 gene that puts me at risk
having low beta amyloid in the spinal fluid and elevated tau protein
in the spinal fluid both are associated with alzheimers disease
to be done in jan or feb a amyloid pet scan which if positive
means that what i have is more likely alzheimers disease

so my wife she and i have some hope now compared to 5 years ago
hope that this thing has been slowed down some
actually hopefully a lot
making our future more promising

yes
we have hope for the future

thanks to all of you who have supported us over the last few years
thanks to all of you who read my blog and share it
and
help spread to the word on alzheimers

yes
my wife she and i
had a very happy thanksgiving
_________

here is where i am since i wrote that blog 10 years ago

i had that amyloid pet scan which showed amyloid plaques in my brain
this solidified my diagnosis of mild cognitive impairment due to alzheimers disease
my spinal fluid showed amyloid and tau changes compatible with that diagnosis

my last memory test in july called the moca test showed a score of 29 but as the neurologist said it was probably a 30 which is normal 
my scores have come up from a 23 to a 30 over the last 15 years

i qualified for the aducanumab or aduhelm treatment study with 34 monthly infusions 
my final amyloid pet scan showed all measurable amyloid plaque was removed

i only take those supplements that are based on abnormal labs
mainly b12 folate and vitamin d

i stopped all of the supplements that were  not based on good scientific studies

i have been on aricept or donepezil for 15 years
it may be one of the reasons my symptoms are being delayed

i maintain good health doing all those healthy things i have mentioned numerous times in my blogs

i still have an issue with sleep but still take afternoon naps

my next plan of attack is to get an opinion from a neurologist in la about starting me on leqembi shots each week to keep the amyloid from reaccumulating

then i wait for the next clinical trials to be finished so the new meds can be used 

i dont qualify for the clinical trials since my amyloid is all gone
you have to have amyloid plaques to qualify for these studies
there is more and more of us waiting like this to know whats next

i do have the apoe4 apoe4 gene that puts me at risk for brain bleeds when i take these meds
the local neurologist doesnt want to use leqembi on me since i am at the higher risk to have a brain bleed

i did take aduhelm which is a first cousin to leqembi and i didnt have any brain bleeds
 
so
i wait
for whats next


Join and or donate to your local walk to end alzheimers

our walk to end alzheimers in santa barbara is saturday november 15th
this will be our 15th year to do the alzheimers walk

here is the link to my team organicgreendoctor

the organicgreen doctor