Thursday, February 9, 2017

alzheimers news-this is it

ALZHEIMERS NEW-THIS IS IT
Image result for organicgreendoctor
three years or so ago i decided not to have my amyvid pet scan
for beta amyloid that was scheduled to be done for the
research study that i was in
called the adni study

why
as i discussed with the research director
i read where there were some new treatment studies coming
that
if you had a recent amyvid pet scan you would be disqualified
from the treatment study
so
i canceled the scan

then last fall
i was told i probably would not qualify for the one study
called the aducanumab study
that i had identified from my reading to be the treatment
study that had the best chance of slowing down
or
if we are lucky stopping the disease

then
i got a phone call
we reviewed all your clinical records and research records
we think you may qualify

i am in i said
this gets all priority in what i do

a brief summary of the study
the aducanumab is an antibody against the bad beta amyloid
that is thought to be the cause of alzheimers disease maybe

the antibody goes into the brain and removes it from the brain
it also dissolves the plaques that form
Image result for aducanumab phase 1 scans
in phase 1 studies the amyvid pet scans seen above
went from abnormal to normal in a few months
this correlated with an improvement in memory

now they biogen are looking for over 1000 folks across the us
to start receiving this stuff as a monthly infusion for 18 months
then maybe another 36 months after that

for those in the study who dont get the placebo
there is a chance their disease will be slowed down
or
if lucky completely stopped

i am vying for one of 12-15 slots in the study
at the alzheimers research center at ut southwestern in dallas

if accepted and if i receive treatment
it could be life changing for me and my family

so far i have made it through two of 4 steps to get qualified
for the study

yesterday
while sitting eating lunch at a habitat for humanity build
i reached in my pocket for my phone
looked at my messages
there it was
a message from the research centers director

i admit i did get a little clammy and tachycardia
as i opened the email

there was the message
dr nash you passed the mri
congratulations
now you can be scheduled for the amyvid pet scan
can you do it next week

i quickly messaged them back
this has priority in my life i said
pick a day and time and i will be there

i got up and went to my truck
sat in the seat
and
i cried

why
this amyvid pet scan will show if i definitively have
alzheimers disease

no matter what it shows
its good news

if its positive
thats good news
it will verify what i already know from previous testing
and
from what i know from somewhere deep inside me
but then
i will be in the study getting treatment for this awful disease
that could open the door to a new treatment
for alzheimers disease if it works

if its negative
thats good news too
it means i dont have it
however
i dont think it will be negative

now
i am not in this study because i am a doctor or because i am
actively involved in being in alzheimers studies
these clinical trials are available to all of you and your loved ones

it does require time and effort to be in these studies
but its all worth it
to have a treatment and maybe a cure for this devastating disease
which can only occur with the help of volunteers for
these studies

heres a link below for more information on where these studies
are being done
www.clinicaltrials.gov

here is the link to the alzheimers research center at ut southwestern
on the first page
that is me in the video that was done on my story
its has an interview with my wife she and me and  my neurologist and
the research director

we need your help to find a treatment and cure

the organicgreen doctor


8 comments:

  1. Thank you for sharing. I contacted UTSouthwestern last week to see if I qualified for any trials, and unfortunately because I am 45 (under 50) I don't qualify for any trials right now. She did pass on the link to the clinic trials and I have contacted several. Thank you again for sharing your journey. Alzheimer's is very prevalent on my maternal side. I am trying to do my part to raise awareness to get more research for this horrible disease.

    ReplyDelete
    Replies
    1. eventually these studies will reach down to the younger age group since thats where treatment will need to be done to stop this disease earlier.
      thanks for being involved
      togd

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  2. So pleased to hear you are in this part of the study!!

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  3. congrats. hope you have the best outcome. you deserve it. Ellen Cooke

    ReplyDelete
    Replies
    1. thanks
      my goal is to see my granddaughter ms b graduate from high school
      togd

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  4. So happy for your good news. Dave Sparks

    ReplyDelete