my 10th anniversary

MY 10TH ANNIVERSARY 

it has been ten years since i got my diagnosis of mci due to alzheimers disease 
because of that diagnosis i abruptly ended my medical practice

this last week i noticed a posting of a former patient who just had his 12th birthday
he was the last patient i saw in my medical practice
i called his mom a nurse to bring him in as my last patient of the day to do his 2 year old well child exam since i knew that i probably would not return after seeing the neurologist
i knew what the neurologist was going to tell me

i never returned after that neurology visit

i wrote later a blog called last day thanks which i have linked here
it is my most viewed blog

yesterday i sat down on our front deck with my laptop and read my blog entries usually around december 22 for the last 10 years
it was like reading someones diary 
mine

my first year linked here i was busy with the adni study busy getting into a routine not sure which way this diagnosis would take me

if you had asked me then what i would be like in 2020 i would be surprised that i am able to sit here and do this blog today and surprised that i am still driving and surprised that i still do all the banking and financial planning and surprised that i am still actively gardening 15+ hours a week and surprised that i still am doing alzheimers talks and surprised that my memory is doing so well 

i really thought that by 2020 i would be in a long term care facility if not dead from alzheimers 

well i am not
my memory scores are in the normal range
i have done memory testing on friends and relatives and my scores are better than some of theirs now

my health is doing much better now than it was in march when i got sick with what i think was covid
even in mid august i was still having some symptoms of fatigue shortness of breath and loss of endurance and my weight bottomed out about that time at a 40 lb loss

since then
my endurance has improved and my shortness of breath has resolved 
my appetite is now more normal and i am able to eat solid foods
i am pretty much back to where i was before i go sick
i have gained 15 of those pounds back
i plan to gain 10 more lbs then stop there
that will give me a bmi of 23.1
my memory has remained normal although it seemed off some in march when i was sick
i had to go off all my meds since i couldnt tolerate any of them
i am now back on my aricept 

so for now i am ready for a new year

i saw my neurologist at ucla last month and got a good report
my memory test the moca was normal
i was told the biogen aducanumab study i was in might be restarted in january
recently the research manager contacted me letting me know that the study would restart in january 
however
the covid 19 is so bad in los angeles that i wouldnt be surprised if the study was delayed even longer until the covid 19 has slowed down some

whenever it restarts i will start the infusions again of the aducanumab 

one hiccup is that the neurologist told me that she wasnt sure if i could get the covid 19 vaccine and stay in the study 
so
i may have a decision to make 
which i have already made

i will get the covid 19 vaccine 

if i do and they wont accept me back in the study then i will just live with my decision

covid 19 can kill me quicker than alzheimers will

hopefully the powers that be will allow those of us who are in the study to get the covid 19 vaccine and also continue in the study 

i read last years blog on my 9th anniversary
i was excited that biogen had decided to restart the study and that it would probably be in march 2020 when the infusions would restart
then covid 19 hit and squashed all that

i reread the 2016 blog and it was all about the biogen study 
i had two visits in december 2016 to do my workup to get into the study 
i had a coke can amount of blood drawn several memory tests done mris of the brain a complete neurology visit and all my medical records from the previous 6 years sent to the biogen research team to review

it would be 2017 before i was told i would be in the study after they reviewed it all if and only if i failed the amyvid pet scan
ie
the amyvid pet scan would be positive for amyloid plaques

it was positive
so
i started the study getting 18 monthly infusions of what turned out to be placebo then i got 7 monthly infusions of the real drug

so as i write today 
i was subdued some yesterday after reading my old annual anniversary blogs
i was glad i was alone 
i noticed i did tear up some
but
i did take a deep deep breath
and
moved on
 
i plan to have a good report next year

the organicgreen doctor