a day in the life of a clinical trial participant

A DAY IN THE LIFE OF A CLINICAL TRIAL PARTICIPANT

yesterday we left home at around 6am
last night we got home at around 730pm

we went to week 102 of the biogen embark clinical trial of aduhelm at ucla
so far since day one in 2017 i have received 30 infusions of aduhelm and 18 infusions of placebo
thats more than enough to remove the measurable amyloid plaque in my brain

the question is will it make a difference in the long run
we and i wont know for awhile
stay tuned for the next 5 to 10 years to find out 
if i make it the next 10 years intact then all this effort was worth it

i will see
kd enter middle school
nn to finish middle school
ms b to graduate high school
mr h to enter high school

if that happens i will be happy

so in 2016 when i found out i was accepted into biogens aduhelm clinical trial i was excited
then in 2020 it was canceled
then in 2022 it was reactivated
then now in 2023 aduhelm is approved for use in early alzheimers 
cms or medicare medicadid wont pay for it nor will other insurance
but i was able to get it several years before it became available

this is the benefit of doing clinical trials
i was able to get treatment 7 years before others could access it

this week i did my 2 year follow up visit
its a long day
mostly mentally tiring
eg i did 3 memory testings that were similar 
doctors do just one of these in their offices
plus i did all those other ones listed below

i do these every 6 months
so i have a series to do in probably december and then next june
then im done except for one final exit interview 6 months after the last one

then ill be on my on

here was my schedule for the day
the moca the mmse and the ads cog are similar memory tests that are commonly used by neurologists to monitor ones memory

mine were administered by a neuropsychologist

Biogen Week 102 - Day 714

Tuesday, June 6⋅9:00am – 4:30pm

Description: Week 102 - Day 714
CNT:
0900 - 0945 - CDR-SB (45 min) - CG - 
0945 - 1030 - CDR-SB (45 min) - SS-  
1030 - 1045 - MMSE (15 min) -  
1045 - 1115 - ADCS-ADL-MCI (30 min) -
1115 - 1200 - ADAS-Cog 13 (45 min) -
1200 - 1215 - NPI-10 (15 min) -  
1215 - 1230 - RUD (15 min) -  
1230 - 1245 - Zarit Burden (15 min) - 
1245 - 1250 - EQ-5D (SR) (5 min) -
1250 - 1255 - EQ-5D (IR-S) (5 min) -
1255 - 1300 - EQ-5D (IR-I) (5 min) - 
1300 - 1315 - mPDQ-20 (15 min) -  
1315 - 1330 - CAM (15 mins) 
1330 - 1415 - ADCS-MCI-CGIC (45 mins)  
1415 - 1420 - C-SSRS (5 mins)  
1420 - 1435 - MOCA (15 min) - MB 
1435 - 1530 - Physical Examination, Neurological Examination -  
1530 1545 - ECG - RH 
1545 - 1600 - Body Weight, Vitals Signs, Hematology, Blood Chemistry, and Urinalysis, Serum and Plasma for Biomarkers - RH and LM 

Week 102 - Day 714 MRI: 
1545 - Arrival  
1600 - Brain MRI

 

 it was interesting since i can score the three memory tests as i do them
i did well in the morning with the adas cog and the mmse
i think i got all correct
in the afternoon without lunch well pass my usual nap time i noticed i missed a few but still scored in the normal range
i got 28/30 on my moca with greater than 26 being normal
the ones i missed i got correct earlier that morning on the mmse and the adas cog

i had eight tubes of blood drawn 
it took two sticks
my vein in one arm has had too many infusions in it so they missed on the first blood draw
i always tell the phlebotomist or nurse thats payback for all the times i stuck folks and didnt get blood from them

my ekg looked normal
i had one the week before at my private doctor also and it was normal

we finally got lunch at 230pm
it was nice to get a one and half hour break
we ate our lunch outside and we took a brief walk around campus before we had to go inside again


finally i got my mri of the brain
its the umpteen one i have had so far in this study
all have been normal for my age
this is the only test i do that i get a report from

then at 540 pm we headed home to santa barbara arriving around 730pm
13 1/2 hours later
about 5 hours time spent in the car
thank you to the 405 and 101

we get reimbursed for gas get free parking and usually get a meal voucher
all we do is provide our time and my brain for the clinical trial

for me and for us its all worth it since this drug probably is slowing down my cognitive decline
i have gained several years of free treatment and hopefully will get several years of benefit from it

i look forward to seeing all those graduations

the organicgreen doctor