MY FIRST INFUSION AND NOW MY LAST ONE
in my old blog the title is 1 down and 47 to go
it turned out to be 1 down and 52 to go
there was a pause of about 2 years partially due to the pandemic
when it was reactivated after the pandemic i found out i got the placebo
it felt unsettling that i got the placebo since i had a 67% chance of getting the real drug
all said
we my wife she and i were excited when the study was restarted after the pandemic
during the time i was in the study i was interviewed numerous times by local and national news organizations about being in the study
yesterday was my last infusion of aduhelm or aducanumab
if i could see my last amyloid pet scan all or most of the amyloid plaque should be now removed from my brain
the question is does removing that from my brain translate to slowing of the disease
this study should be reported out soon so i will know how well it works
my guess it will be close to leqembi results maybe around 25% reduction in memory decline
my journey started at the university of texas southwestern in dallas in 2016 and ended at ucla yesterday
we have been in this study for 7 years
we said our goodbyes to the staff yesterday
we will do a final exit interview in february of 2024 to include a neurological exam and several hours of memory testing
i may or may not have to have another amyloid or pet scan
i have probably had close to 15 mris and about 4 amyloid pet scans and about 2 tau pet scans and about 40 hours of memory testing and several ekgs and several lab draws
we had about 300 hours of driving time and around 150 hours in infusion centers
all of it was worth it
it was surreal knowing this was my last one
i do remember though the excitement of getting that first infusion in 2017
__________
03-24-2017
ALZHEIMERS NEWS-1 DOWN 47 TO GO
i did it yesterday
got my birthday present
as i wrote the best ever
as i drove the 3 hours trip i did a lot of contemplating
thinking about this 6 year long journey that i have been on
hoping it will last a long long time before its all over
i thought how lucky i am to be this far along
and not have worsening memory loss
during that time this last 6 years
i lost my brother from the final stages of this disease
had my older brother get diagnosed with it
i thought maybe just maybe i am the lucky one
getting an opportunity that they didnt get
to really really slow this down
i am honored to be in this trial
knowing that if its successful as it might be
that it could be a game changer for me
and all my relatives behind me
to have a chance to avoid this awful disease
thats how close we are to finding a treatment
its right now today not off tens of years from now
for me and my family it started yesterday
yesterday the day for the rest of our lives
lets getter on is what i muttered under my breath
i arrived yesterday early of course to the infusion center
its located in this building at the university of texas southwestern
medical center
i walked up to this desk where the busy infusion center is
there sits this guy called santa claus
he is the receptionist
everyone calls him that
since he looks like santa claus
and
plays one at christmas
nice as you would expect santa claus to be
nice first person to interact with
then there was some snafu
we may have to reschedule
some protocol has to followed exactly right
i was the first one starting this study there
some special approval had to done by some god in massachusetts
or somewhere back east at biogen
we may need to reschedule if you dont want to wait
nope i said
im staying until this gets settled
ive waited too long and this may mean to much to me and my family
i just want to get this thing done
getter done i mumbled under my breath
finally after awhile it all got cleared up
back i went
nice nurse
nice receptionist
nice neurologist
it helps to have nice medical personal taking care of you
when you are dealing with the unknown
dealing with a terminal illness
i remembered as i watched them start my infusion and draw my blood
their patients are the ones that dont usually fair well
its their diagnoses
below thats the brown bag stuff hanging on the pole
the stuff thats either fake stuff or the real deal
the real deal for me please
me
i thought as i watched them hook all this up
i want to be the exception for them
i want to be a success result
the only thing i noticed as i got my infusion was
that i tasted salt on my tongue and i got real thirsty
dont know if thats a good sign or not
when it comes to whether or not i am in the placebo group
or not
if i get headaches get confused have some dizziness
then theres a good chance i got the real deal stuff
however not everyone has side effects
i am at higher risk for side effects since i have the apoe 4/apoe 4 gene
this gene put me at an increased risk for getting alzheimers disease
prior to getting the infusion i had a memory test done
for some reason i noticed that i did better on it than usual
it may be because i have had it done so much
i can anticipate the answers before they ask the questions
however
they for this study do a variety of memory tests
most of which i havent done before
which make them more accurate
so
i finished my infusion without any effects
now
i return each month to do the same thing all over again
except
i dont have to wait around the extra hour or so like i did
this time
in and out in an hour or so each time
i decided i can deal with whatever problems pop up
for
in the end it may be all worth it
i scheduled my next infusion date on 4/20
i did that date on purpose
its in case you dont know is marijuana day
why pick that day
well
there is a lot of research that needs to be done on the ingredients
in marijuana
they appear to be useful in the treatment of neurological diseases
like alzheimers
however
the federal government severely limits the research that needs to
be done on these marijuana ingredients
in my contact with folks affected by these diseases
they are using marijuana
obtaining it from states where its legal
using strands that have the potential to help
its sad that good scientific research cant be done
to find things like this that may help
its my small way of protesting our governments restrictions
on this research
but
hopefully if this aducanumab stuff works for me
i wont have to get involved with using any 420 stuff
next
a month of waiting
then
round two
keep following me on this journey
i am hoping the end result will be a good one
if it is
there may be hope for a lot of people
__________
so far the marihuana or cannabis treatment hasnt been proven yet
the feds are starting to allow more research on it
i tried cbd but i think it interacted with my aricept to effect my dreams making them worse
cbd has anti inflammatory effects
maybe science will settle whether it helps or not
as i look forward i know that probably all my measurable amyloid plaques are gone from my brain
the question is will that make any difference in how the disease progresses
time will tell
the journey is well worth it
now i will continue doing all the healthy things ones should be doing for their health
i will control my blood pressure my cholesterol my weight
i will stay busy mentally physically and socially
i will continue on the mind diet
i will do all the healthy things one should be doing also
then
ill search looking for something to remove the tau tangles from my brain and something to treat the inflammation thats occurring up there
those drugs are on the horizon
i will keep an eye on them
i do feel like my aduhelm the new drug leqembi the soon to be released donanemab and others will slow down the disease
but
they wont stop the disease
they will only slow it down some
they wont cure the disease
for
there is no cure for alzheimers disease
but
they do give us some hope
and
SOME HOPE IS BETTER THAN NO HOPE AT ALL
do your part be looking for your local walk to end alzheimers in your area
join a team and or walk with them
donate to the cause
you also can donate to my team organicgreendoctor linked below
join me for our santa barbara walk to end alzheimers on saturday october 14th
join us and or donate to our organicgreendoctor team
or do your own local walk
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