on monday i made the last of my three final visits to ucla for the biogen aducanumab study
the next two will be for an mri next week my last one and then in 3 months the final what they call the exit interview where i think they repeat memory testing then blood work then a neurological evaluation by a neurologist
then thats it until sometime in 6 months i can find a new treatment study
i have my eye on a couple
i realize if i can get in another one that that will be probably my last chance to be in a treatment study
i will have overstayed my welcome
one of the testing i had done on monday was my memory testing that lasted well over an hour
in the memory testing one part really really stands out
they show you 10 words to remember then you are asked to repeat them after being shown them again
i think its for a total of 3 times spread over several minutes
its the last time they ask you that really counts
i got all ten of them correct
why is this important to me
its my measuring stick i go by on how well i am doing
about 10 years ago when i applied for my long term care insurance i had to undergo memory testing to get the insurance
the part i remember was the 10 words they gave me to remember and i had to repeat back to them
i got like on monday all of them correct
then
two years later i decided since my mom had died with alzheimers disease and my father probably had it when he died and my younger brother was in the throes of alzheimers
i decided that i wanted to be monitored on an annual basis
once i had issues with my memory then i would quit practicing medicine
so
i contacted the research director at the university of texas southwestern alzheimers research center in dallas about being tested
she said
sure we will be glad to test you each year but we have this knew big research study that we are part of where you get all the diagnostic testing but you also get some new diagnostic testing not done in most doctors office yet
eight years ago i would not have believed i would be doing all this this week
little did i know that my life would be like a ball rolling down a hill which hits a big rock and careens itself off course
i was the ball
the rock was this study
my life would be changed forever after this
man was i innocent when i wrote this
heck i barely knew what mild cognitive impairment was
do i know what it is now
you betcha
i had no idea what a biomarker was
yep
i know what that is now having had them done several times over the last 8+ years
oh my i was about to be blindsided
11-3-2010
ALZHEIMERS DISEASE NEUROIMAGING
INTITIATIVE(ADNI)
the national institutes of health(nih) is expanding the azheimers disease neuroimaging inittialtive (adni) which is a study that is recruiting hundreds of new volunteers to help define the subtle changes that may appear in the brains of people many years before overt symptoms of alzheimers disease appear
over the next 5 years 1000 people aged 55 to 90 will be enrolled at 55 sites in the us and so there is a site close to you
this second phase of the study is called adni2
the volunteers will be followed to help define the changes in brain structure and how the brain functions as people move from normal cognitive brain function to mild cognitive impairment (mci) see previous blog on this
which is the beginning or precursor to alzheimers disease
the study will use neuropsychological tests mris and pet scans and biomarkers in the blood and spinal fluid developed to track changes in the living brain
the biomarkers include beta amyloid protein and tau in the spinal fluid
genetic analysis of the blood will be done
the study hopes to identify who is at risk for alzheimers track progression of the disease and devise tests to measure the effectiveness of potential interventions
the adni data base has been established so that as soon as results are obtained researchers all over the world will have instant access to the data
i have volunteered for the study and will do the initial entry evaluation in 2 weeks at a university near where i live
this is a 5 year study but the plan is to be followed well into the future
i will have extensive neuropsychological tests mris pet scans blood tests spinal taps
i am willing to do this for myself for my family and hopefully some useful information can be obtained for future evaluation and treatment of this terrible disease
i plan to do a blog on this each time i go in to be seen and will blog on the results of the study as they are published
to volunteer or get more information contact (adear)
alzheimers disease education and referral center at 1-800-438-4380 or
www.nia.nih.gov/alzheimers
the organicgreen doctor
I sure do miss you Dr Nash
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