two weeks ago when i went back for my new five year extension of the biogen aducanumab study as i was being interviewed and filling out all the paperwork i could see the excitement on her face
she being the physician who was the research director for the study here at ucla
i recognized that look
i saw it on the face of the director of the alzheimers research center in dallas as he was examining me at the beginning of the study almost 3 years ago.
he was quite animated and excited while usually he was more business like in his approach
he who just was written about in the news for his new drug that is an injectable vaccine that induces the body to produce antibodies against both the amyloid protein and the tau protein in the body
even though his drug may end up to be a better one than the aducanumab drug im on he was still quite excited about the aducanumab my drug
then
i also recognized it on the face of the study research director at dallas when he first interviewed me for this study
all three are alzheimers researchers and their excitement was contagious
in the extension of this study i will receive 60 more infusions so when its all over the total will be somewhere around 85+- infusions of aducanumab if i wasnt on the placebo to start with
i feel like i got the real drug and not placebo at the beginning
i will have 10 more brain mris over the next 5 years plus multiple neurological exams and memory tests and ekgs and blood tests and an amyvid pet scan sometime along the way maybe at the end
if the aducanumab works my last amyvid pet scan should be read as negative
my amyvid pet scan was positive at the start of the study
the infusions if they make to the market will costs around $4,000 for each infusion
if you do the math i will receive about $340,000 worth of medications during this study
thats about what 2-3 years in a nursing home or memory center will cost
is it all worth it
for me i think so
if this stuff should really work well then i could die of something else besides alzheimers disease
like
maybe
folks will say
yep
he just died of old age
if that happens
then
im good with that
the organicgreen doctor
Dewayne, I can't imagine the journey you've gone with your diagnosis. But what I do know is the fight you've endured, the efforts you've contributed, and the research you've shared will serve to benefit many others who face the diagnosis of alzheimers. It's more than obvious that through your personal challenges with this disease, you have continued your physician role to help others struggling with this dreaded disease. God bless and heal you
ReplyDeletethank you for your kind words.
ReplyDeletei think i have a unique perspective on this as a patient a physician and as a family member.
education on this disease is important for folks to get the help when its needed and maybe before it shows up.
togd