thats me holding up that blue flower at last years alzheimers walk here in santa barbara
i talked just a few minutes about my diagnosis and my familys battle with alzheimers disease
yes i choked up when ms b who was in the audience cried out grandaddy grandaddy
sorry thats when i lost it
my goal in all of this is to see ms b grow up and know who i am
i want to see her graduate from high school
i plan to enjoy her until then
i want to see mr h get his kidney transplant next year when he is one
i know he will be a healthier infant when that happens
he will be able to have a good life expectancy and a good life doing things every other child does
except maybe not football
i want to see him graduate from high school but i know that may be pushing things a little
i would be 76 which if this stuff im doing doesnt work i know thats not going to happen
i want to see my sons become grandparents
i know if this stuff doesnt work i wont get to see this happen
i want to grow old with my wife she
i know thats going to happen if this stuff works or not
it will just be a real bumpy ride for her and my family
ala my younger brothers family
so i am about to listen to a webcast in a few minutes from the clinical trials in alzheimers disease from barcelona spain on how well my drug aducanumab appears to be working
in a few minutes
i well
will sort of get my fate
did all this ive done the last few years
is it going to let me do those things above
i will get my preliminary answer
i will report on the results at the end of todays blog
yes im anxious as i ever get
yes im all teared up
whenever this happens i wonder did my mom and brother have these moments
or did it just sneak up on them before they could understand what it all meant
as i walk up onto the stage next weekend carrying that dam blue flower
ive had to limit what i say because as i stand there looking out in the audience i will be seeing all those that i talked about in my family above in the beginning of this blog
if i try to say all i want to say i know that i wont be able to finish
so
as i compromised
here is what i plan to say
i am holding this blue flower today representing those of us who have alzheimers disease
now i have seen alzheimers disease up close and personal
its an awful ugly disease
i have three reasons why im walking today
i am walking for my family
my mom and my younger brother died from alzheimers disease
my dad probably had alzheimers disease when he died
my older brother was diagnosed with mild alzheimers disease a few years ago
i am walking for myself
i was diagnosed 8 years ago with early mild cognitive impairment thats turned out to be due to alzheimers disease
i take the alzheimers drug aricept that slows down the symptoms
i am in a clinical trial of a new alzheimers drug that i receive as monthly infusions that shows some promise to slow down the disease
then finally
i am walking for you your family your loved ones your friends who have been affected by alzheimers disease
we need a treatment or cure for alzheimers disease
my hope is that some of you will see the time when no one will have to stand up here and hold this blue flower
thank you
now for the results about my drug aducanumab
the results reported was on the original study called a phase 1b study
it has around 197 folks in it
after a year it converted to a long term extension study of at least 3 years
the results presented from the original study is where my study will be in 2 years
so what they report will be about what will be reported when my study ends in 2 years
but my study will be more accurate since there are 10x more participants
1605 vs 197
so what they reported just now in barcelona about 10 minutes ago will probably be what they will report in 2020 when my study ends
here is the link to listed or download all the presentations
www.ctad-alzheimers.com
unless you understand the research stuff and medical jargon it may be hard to understand the results
this is where i come in
i speak the language
i am from both sides the medical side and the patient side
so ill try to put into regular how we speak language
you know like regular people talk
here are words ill define for you
aducanumab is my drug thats an antibody against the bad amyloid in the brain
amyloid is the protein that accumulates in the brain that starts the alzheimers disease process
amyvid is a pet scan that shows the amyloid in the brain
mmse is an in office memory test that doctors use to access memory loss
it takes about 20 minutes to administer
placebo means you dont get the real drug
apoe 4 is the gene called the late alzheimers gene that makes you at a higher risk to get alzheimers
i have the apoe 4 double version of the gene
aria stands for amyloid related imaging abnormalities
i think of them as microbleeds in the brain as the bad amyloid plaques are removed from the brain
the way aducanumab works is its given as an intravenous infusion once a month
it is an antibody against the amyloid that grabs the amyloid plaques in the brain and removes them
it also removes amyloid floating in the spinal fluid in the brain
it also fights the inflammation reaction the body use to attack the brain damage from the amyloid
my study has 1605 people in it and is done at 360 sites in 20 countries
they had to screen 12,500 people to get those 1605 of us that qualified
thus volunteers for this and other studies make alzheimers research happen
find studies at clinicaltrials.gov or at www.alz.org
the study thats reported on is a phase 1b trial of over 100+ folks
at the end of the first year the results were promising enough that the fda allowed the biogen company to skip phase 2 studies and go right to phase 3 studies
phase 3 studies happen right before a drug get fda approval
in my study there are folks with
preclinical alzheimers-those with normal memory but positive amyvid pet scans
mild cognitive impairment due to alzheimers disease
mild alzheimers disease
it seems if your disease has progressed further than these three then these drugs may not help
thats why early testing is so important especially as new treatments are found
so here is what they reported at 630ish cdt from barcelona spain
i watched it live and took notes
aria occurs in 25% of the participants
about 50% of those with the apoe 4 gene got aria
so i probably had aria
aria and its headaches occurred most commonly after the first doses and in the first 6 months
rarely was someone removed from the study if they got aria
i think of it as a side effect from the aducanumab doing its job
grabbing those plaques from the brain tearing them lose
bleed baby bleed is what i say
then it all settles down
yes i had bad headaches after my first infusion 19 months ago that lasted one week
placebo dont cause that
at the end of 1 year and now at 3 years those who got the high dose and a titrated up dose have mainly clear amyvid pet scans which if read would be read as negative
remember to get in this study that amyvid pet scan has to be positive
so that means my amyvid pet scan was positive 20 months ago
if im getting the higher dose my amyvid pet scan will be negative today
at the end of a year and now at 3 years the placebo and all doses of aducanumab had a continued decline in memory
the placebo folks had a more rapid decline like you would expect to see
the higher dose and titrated dose folks had a much slower decline in their mmse or memory
its a significant difference
for me
my memory has trended down since i can score myself as i take the test plus ive seen my last several mmse scores done in another study
so mine is better
thats the true measure of is this stuff working
not if its all removed
but
does it make the memory loss better
yes
how much better we will find out in two more years
it sure makes me more hopeful now
no its not going to be a cure
just a treatment that along with everything else i am doing will slow this disease down for myself and others
i wonder what ms b wants for graduation
im stoked
there may be some hope for the future
we need two things to help us find a treatment and cure
money
volunteers
you can help with both of those
here is the information on our team for the walk to end alzheimers next month
my team in the santa barbara walk to end alzheimers on saturday november 3rd is called
organicgreendoctor
click the link above and donate and or walk with us
organcgreen doctor
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