my story revisited #170-i am at peace with myself

MY STORY REVISITED #170-I AM AT PEACE WITH MYSELF

each december i write a blog about the anniversary of my diagnosis and my decision to stop practicing medicine
over 8 years ago i wrote this blog below 
its interesting to see where i was at that time

i was in the 5 year adni 2 or alzheimers disease neuroimaging initiative 2 where i got serial labs mri scans amyloid pet scans spinal taps lots of memory testing each year
i was actively looking for a treatment study
the adni 2 study was just diagnostic studies
i was ready for a treatment only study

one study called the a4 study was looking for new participants
one needed to not have memory issues but have a positive amyloid pet scan
since my memory had returned back to normal range back then i tried to get in the study but was turned down
interestingly i tried to get in the aducanumab study a year or so later and was turned away initially but later when they got all my medical records they changed their mind
it would be 3 more years before i got into the aducanumab study

the a4 study will be resulted out in a few weeks
they have been treating folks with higher dose of solanezumab for almost 10 years
solanezumab works similar but differently than aducanumab

researchers are anxiously awaiting the results since these prealzheimers patients have been treated for these 10 years with this drug that removes amyloid
will these patients be better off having been treated
will this treatment slow down or stop the disease from progressing

now the newer drugs like my drug aduhelm or aducanumab and lecanemab and others coming soon probably will be more effective in these prealzheimers patients
those studies are several years behind the a4 study

so if a4 works to slow it down some then its a good sign the other newer ones will do an even better job

again
fingers crossed


yesterday at ucla i got my #27 infusion of aduhelm or aducanumab in the biogen embark study
i also got 18 placebo infusions prior to that
ive been at this since 2017 with a year and a half pandemic hiatus

i have spent 135 hours getting infusions
i have traveled 18,000 miles to get the infusions
i have traveled around 270 hours traveling to get the infusions
that doesnt count all the trips for labs mri scans amyloid pet scans tau pet scans memory testing neurological visits

its all worth it i might add

i have at least 16+ more infusions to go in this study 
its results will be reported out in about 2 years

i then have a choice to make
stay with monthly infusions of aduhelm or aducanumab
or switch to lecanemab infusions since they work better
both will probably be given in the private world by then

exciting times in the alzheimers world and my world
__________
12-19-2014
THE ANNIVERSARY
each year at this time
i stop what im doing
try to slow down some
to reflect on the last 4 years
especially that day 4 years ago
when my life came to a screeching halt

one day i worked seeing over 30 patients
one in the mid day that day was
an alzheimers patient
one of my surreal moments when i reflected back
i wrote him a prescription for his aricept (donepezil)
which he took for his alzheimers disease
little did i know
that the next day almost exactly 24 hours later
a  neurologist would write me the same prescription
and go over the same side effects that i had done
with my patient and his daughter
surreal it was

my last patient of the day
was an employees child who was due for his
two year check up
i asked her to come in after my last patient so i
could do it
knowing he would be the last patient i ever saw
as a practicing family doctor

i also for a few weeks had refilled folks prescriptions
and
even had some come in early for rechecks and
physicals knowing i would not probably return

i got the news the next day fours years ago
my life changed

here is the link to the blog i wrote to my patients
called
last day thanks

each year i reflect back at where i was
and where i am now

in these 48 months i have learned a lot about
alzheimers disease
as much if not more than most family doctors
heck sometimes i am asked for recommendations
and
advice from some who are practicing 

i still keep in contact with my patients via this blog
email facebook twitter
that helps a lot
i have enjoyed watching the younger ones grow up
many entering their chosen careers

i do wish i could practice again
to take care of more dementia patients
and
do it the way it should be done

i am still in the big alzheimers study
the alzheimers disease neuroimaging initiative
the alzheimers blood test study
and
hopefully soon to be in a new treatment study using
one of the iv alzheimers vaccine

i recently as ive mentioned a lot recently
am doing the 36 point reversal of cognitive decline protocol
that was published from uclas alzheimers center

i personally as i have said before feel better
i think there has been a slight improvement
reflected on my moca and neuropsychological tests
just awaiting on that cure
this stuff im doing probably doesnt stop the disease
but
it does i think slow it down

i am active physically and mentally
reading a lot
doing this blog
volunteering at meals on wheels
volunteering at habitat for humanity builds
volunteering big time for the alzheimers association
presenting talks on alzheimers disease to different groups
here at the country n i do gardening a lot of landscaping
repairing things rainwater harvesting
and
this year i am adding beekeeping to my activities
yes
country n honey coming soon
add that to our country n girls egg production

so in summary
i feel better much better than four years ago
i see more hope than four years ago
i see more hope for future generations
i stay as busy as i want to be

i do miss practicing medicine a lot
but
have accepted my new place in this world


i am at peace with myself
__________
when i read this old blog and think about the last 8+ years i realize i have made some good decisions to get me where i am today

i think that since i was diagnosed so early on that i am more like a prealzheimers patient and that being on the aduhelm early on in my diagnosis may help to slow this down 

i feel like i am in a good place
yes
i am totally at peace with myself


the organicgreen doctor