this blog i wrote below was on the third anniversary of my diagnosis
these anniversaries make me think a lot about where i was and where i am now
when i read my blogs like this i realize how busy i was keeping myself
doing mostly healthy things
at the time of the blog i was in the third year of my being in the adni 2 or alzheimers disease neuroimaging initiative 2
it was all diagnostic testing but no treatment
the only treatment i was getting was aricept or donepezil and doing all the healthy things one needs to be doing to slow down the disease
i wrote about the slope
asking folks to follow me along this slope of my journey
it usually ends on a downward slope
however
lucky for me i have been since then on a straight line or slightly upward tick to my slope instead of a downward descent
it was about this time that i started looking for treatment studies since the adni 2 study would end in a year or two
one early study that caught my eye was the aducanumab study using a monoclonal antibody against the amyloid protein which accumulates in the brain of alzheimers patients
a phase 1 study later showed promising results
treated patients had most if not all the amyloid visible on amyloid pet scans
these treated patients seemed to have an improvement in their memory loss
fast forward eight years
i am in the second part of the aduhelm or aducanumab study at ucla
i did the first part of the study and received 18 placebo infusions and 7 real aducanumab infusions before the study was paused and not continued due to the pandemic
in this second part i get the real drug for at least 2 years
its now approved by the fda for use in real early alzheimers or mild cognitive impairment due to alzheimers
medicare should decide in march or april if it will pay for it
i have received 7 infusions in this second part of the aduhelm study
its called the embark study
i do 1 mg/kg infusions every month x 2 months then 3mg/kg infusions x 2 months then 6mg/kg infusions for 2 months then i start on the maximum dose the one that really works of 10mg/kg
i have received one infusion of that dose one month ago
then i had a mri of the brain looking for microbleeds in the brain called aria
i had none two weeks after that last infusion
however
yesterday i was scheduled to receive my second 10mg/km dose of aduhelm
however
i have had a persistent headache for 3 weeks without other symptoms
if you get these microbleeds the most common symptom is headache
there can be nausea confusion dizziness blurred vision etc also
i have none of them except the headache
i am not a headache person
the concern is that i could have a microbleed or aria
so
they are holding my infusion until i get an mri to rule this out
i also will have another mri in two weeks as part of the protocol
since i am homozygous apoe 4 or i have two apoe 4 genes that puts me at a higher risk of having these microbleeds
41% of folks on the infusions of aduhelm have these aria but most have no symptoms
some do like maybe me
the plan is if i have aria or a microbleed the infusions will be paused until it resolves
then
the infusions are restarted
most folks tolerate them without further problems
i was well aware of the risk of aria or microbleeds when i signed up for the study
it was a risk i was willing to take
the reward for taking these infusions may be worth it eventually
plus
thats the way medical progress occurs
those of us who volunteer for clinical studies pave the way for you and your family to get new treatments
for me
the risk is worth it to me
the microbleeds occur as the monoclonal antibody binds to the amyloid plaque
as it tears the plaque off it can cause a microbleed to occur with some swelling in that area
i think of it like having a small scab pulled off a wound making it bleed
when i was interviewed for the new york times article on aduhelm the reporter spent a lot of time asking me about all the risks of taking the medicine
yes i said
im am aware of the risks
do i worry about it
no
i dont
in dr daniel gibbs book a tattoo on my brain and in his interviews he discusses his having the aria or microbleed episode
his was worse than a simple bleed
his reaction was a rare event
the tattoo he writes about is the iron stain seen on the mri that is from the iron in the blood that bleeds out with the microbleed
read his book if you are in the alzheimers world
he writes as a retired neurologist alzheimers researcher alzheimers patient and gives good insight into his view of the disease
his story is very similar to mine
__________
12-20-3013
THE ANNIVERSARY
its that anniversary time
its been 3 years since i was diagnosed
and
had to discontinue practice
it was a few weeks earlier than that i knew that the
time was coming
when i had my testing done and got that phone call that
i needed to see a neurologist
teach me to volunteer to be in that normal control group
of the alzheimers disease neuroimaging initiative study
it was a life changer
volunteering for that study and getting blindsided by my
diagnosis
early mild cognitive impairment amnestic type
thats probably due to alzheimers disease
wonder what i would be doing if i had not decided to
volunteer for that study
well i probably would be officially retiring about now
which was the date i had planned a few years ago
i wonder if i had continued to practice if i would have
had problems
i think i would
not routine stuff but as things got hectic eg like in
after hours clinic when you are real busy and have
to keep up with several sick persons at one time
i wonder i would have had problems doing it
i think so based on what i have noticed personally with
some memory issues that probably no one else notices
my most read blog ive written was this one
written at that time
last day-thanks
and the ones that follow that one for a few days
like a bullet that hits a metal object and careens off in
another direction
thats what happened to my life that day
so for the last three years i have stayed busy
being involved with the alzheimers association
talking about alzheimers disease to anyone who will listen
telling people what they can do to slow down the chances
of getting this disease
since all this has happened ive watched my younger brother
deteriorate and die from this terrible disease
alzheimers disease
a real sobering event for me as he was the mirror i looked in
as i know that im somewhere behind him
i have given several talks telling my story with possible alzheimers
disease letting people know how i was accidentally diagnosed
what medications are used in this disease
remember none of them stops or treats the disease
what research stuff is going on and what treatments are on
the horizon and what they can do themselves to maybe
prevent the disease or really slow it down
i am still taking aricept (donepezil) that slows down symptoms
but again not the disease
i control my blood pressure cholesterol weight diet and stay
active mentally and physically
i volunteer at habitat for humanity building houses and do
most of the landscaping now for the houses
something that was mostly ignored in the past
i also run a 30 mile meals on wheels route each week
i also do a lot of gardening here at the country n
and try to encourage as many people as possible
to do their own organic gardens
i do this blog almost every day monday through friday
about these things above and other things that interest me
one goal is to write down whats happening inside my brain
as this disease progresses and takes off
this has not been done much in the past as people werent being
diagnosed until things were much worse
and doing writing for a blog like this would not be possible
my disease hasnt progressed much in the last three years
but it has progressed in ways i notice but others probably
dont notice but its there if they are real observant
the disease starts slow real slow then picks up speed
everyones speed is different
and the degree of destruction along the way is different also
i read blogs and am contact with others who are early like i am
except they are farther down the journey than i am
they are excellent writers and are able to put their thoughts
down in an eloquent way
i hope to do as well as long as possible
so its my anniversary
my 3rd one
the slope for now appears to be a slow one
thats ok with me since i have a lot i want to do
follow me along this slope
__________
heres hoping i dont have a tattoo on my brain
although i always wanted a tattoo
just not there
its all probably just a small bump on my curve
the organicgreen doctor
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