MY STORY REVISITED #91-ILL SAY 1 DOWN AND 25 TO GO
it is interesting to read my old blog
its like reading a journal someone might write
out of the blue they called me on my birthday 4 years ago to let me know they could start the infusions of aducanumab now called aduhelm since its fda approved to be used in mci due to alzheimers and early alzheimers
as i read my thoughts i wondered what i would feel in 2 days as i head to ucla to restart the aducanumab study that i was in
i am due to get infusion one and then every 29 days after that i will receive another 25 infusions
at the end of these 100 weeks i will have gotten a total of 32 infusions of aduhelm (aducanumab)
plus i got 18 months of placebo
i of course would prefer to have gotten 18 more months of aducanumab
at the end of this study more will be known about how well this really works
then
this study could be extended
or
if it seems the aduhelm may be working i can change to the private world outside the research world and continue the infusions here locally
this gives me and the scientific world time to figure out whether to continue them or not
i will get based on the price thats proposed about $112,000 worth of infusions plus about 6 memory testings multiple neurological evaluations multiple mris of the brain and several amyloid pet scans and lots of labs
the cost to me is $0
well just some of my time and effort
its worth it to be able to get it early before it goes to market
it puts me a few months ahead of getting treated
now
heres hoping it works to slow the disease down
_________
ALZHEIMERS NEWS-ITS MY DAY
today is my birthday
i have had a lot of birthdays
the 40th one was memorable
yes i got black stuff and got my yard trashed
i got all those over 40 jokes
then
came number 50
yes i got the aarp stuff in the mail
then
came the number 60
i told my wife she
i just want a quiet one
have people leave me alone
no harassment please
i got enough at age 40 and 50
after my 60th birthday
our life was humming along pretty good
we had no idea what would be coming along
in about 9 months
our lives would change
kabam
there was the diagnosis
that diverted our future to where it is today
an uncertain one
now
i have got a lot of presents over the years
some well most have been good ones
but
yesterday
well
i got the best birthday present ever
my phone rang
hi
this is the alzheimers disease center at ut southwestern
we have an opening tomorrow at our infusion center
do you want to start your aducanumab infusions tomorrow
i didnt even hesitate a second
we have made receiving these infusions our priority
yes
ill be there
early
im ready
to get this show on the road
the sooner the better
for those who dont know
aducanumab is an antibody that attacks the bad beta amyloid
that accumulates in the brain
beta amyloid is thought to be the substance that causes alzheimers disease
if you remove it
the alzheimers disease may be stopped or at least slowed down
i will be one of the first to get this stuff at the alzheimers center
everyone knows the drug humira
its advertised on tv all the time
its used for diseases like rheumatiod arthirits ulcerative colitis
crohns disease and other connective tissue diseases
its given as shots under the skin usually every 2 weeks
its an antibody against a protein that causes the inflammation in
these diseases
its generic name is adalimumab
my drug
aducanumab
my birthday present today
works similarly
but
the protein it attacks is the bad beta amyloid in the brain
this drug aducanumab
is the best hope that we have right now to slow this disease down
this study i am in will determine if it works or not
my reading and my hope is that it will
so
i am ready
to get the best birthday present ever today
it must be a sign
getting it today on my birthday
i believe
i believe
its a good sign
03-24-2917
ALZHEIMERS NEWS-1 DOWN 47 TO GO
i did it yesterday
i 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 too 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
__________
you can bet ill do a lot of daydreaming as i head down to ucla
i probably wont have the same degree of excitement i did on that first infusion 4 years ago
but
there will be excitement nonetheless
another memorable day in the fight to slow down the disease
the organicgreen doctor
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