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
its located in this building at the university of texas southwestern
medical center
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
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
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
the organcgreen doctor
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