revisiting revisitng ...

REVISITING REVISITNG ...

this picture is me talking at  our family reunion the first summer after i was diagnosed with mild cognitive impairment due to alzheimers disease
my younger brother was in the audience and was diagnosed with alzheimers disease
he died 3 years later at the age of 62
my mother died 3 years before in the final throes of this awful disease
both had a 7 year battle with the disease
it won
like it will one day win with me

despite all i have done to slow it down
i know that it will win eventually 
i am just hoping i have slowed it down so i will die from something else
maybe old age


each year around christmas i pause and take the time to read this blog titled last day thanks and the following blogs after that to revisit how this journey all started

i use to cry each year at this time when i did the review
this year
for some reason i did not

maybe
im just happy i made it this 14 years with a memory thats as good if not better than it was in 2010 when i was diagnosed

i take the time to think about all that has happened to me in this alzheimers world

having to quit my practice doing what i always wanted to do and enjoying what i was doing

moving to a sudden onset of full retirement

i volunteered a lot and still do around 15-20 hours a week

i did a 5 year clinical trial called the adni 2 or alzheimers disease neuroimaging initiative 2
i had serial neuro exams lots of labs serial memory testing serial mri scans of the brain pet scans of the brain amyloid pet scans tau pet scans two spinal taps for amyloid and tau

the adni study is probably one of the most important alzheimers study ever done

after the adni study in 2016 i started the aduhelm or aducanumab study where i received 18 months of placebo and then 34 months of the real aduhelm a monoclonal antibody that removed all the amyloid plaque that had accumulated in my brain

now i wait 
what to do next 
waiting for that next drug that may help
i wait
there might not be another one
maybe leqembi the aduhelms cousin may be approved for maintenance treatments and will be given as an injection possibly at home to keep the amyloid from accumulating
i wait
we wait
for the next step

i have been on aricept or donepezil since 2010
it slows down symptoms but doesnt stop the disease
if started early like i did it actually prolongs the life of an  alzheimers patient
they also do better with their symptoms

luckily i have been able to tell my story via several videos and interviews over the last 14 years
many have reached out to me for advice and help steering themselves or their loved ones through the health care system
some turned out not to have alzheimers but other treatable causes of memory loss
these cases make me feel good that i helped in some way

i have also given lot of talks on alzheimers and done lots of q and as afterwards
these are my favorites where i can just answer the questions folks cant get answers to

its been a long journey 
i do feel  good about where i am at right now
i hope it continues like this for a awhile longer

thanks to yall for following me along this journey

the organicgreen doctor