my story revisted #178-it is now continued

MY STORY REVISITED #178-IT IS NOW CONTINUED

that is me being interviewed on our front porch of our condo for a newspaper article on alzheimers disease. i think this one was from our local paper or from the ny times article
last week i was interviewed by the washington post about my involvement in the clinical trials in alzheimers
it will be published soon before the vote by the fda on full approval of leqembi for use in treating mci due to alzheimers and mild alzheimers.

i noticed on my analytics of my blog that a lot of people were looking at this blog below so i reviewed it

i wrote this blog about 6 months after i stopped practicing since i was diagnosed with mci and started on aricept or donepezil
it was felt to be due to alzhiemers disease but it wasnt proven yet
it has since been proven

i had a spinal tap for the adni alzheimers disease neuroimaging initiative study i was in at this time
i was given extra fluid to have it analyzed for amyloid and tau
it was positive for amyloid and tau levels thats seen in alzheimers disease

later like around 2016 i had a amyloid pet scan done to qualify for the biogen aducanumab now aduhelm clinical trial
my amyloid scan was positive for amyloid plaques 
this solidified my diagnosis of mci due to alzheimers disease

i have been on aricept or donepezil now for 12 years
the fact i got on it early in my disease probably is one of the reasons i am still cognitive intact
the earlier you get on it the better it seems

tomorrow i will have another amyloid pet scan at ucla
it should show that the amyloid plaque that can be measured is gone
my last mri did show some brain shrinkage which could be due to the removal of all this plaque
or
could be the advancement of the alzheimers disease causing the brain to shrink as brain cells are damaged

i hope its the first reason
__________
05-11-2011
REVIEW
the new diagnostic criteria guidelines for alzheimers were
published recently

they are
preclinical alzheimers  there are no outward symptoms but mild
changes on biomarkers such as spinal fluid markers (tau protein,
beta-amyloid protein) and changes on research pet scans
this category is important not clinically but in research to find
individuals who can be used to test preventative techniques to
see if drugs or diet or bp control or cholesterol control can
slow down, stop, or prevent this disease progression

this stage classification is not used in the doctors office for any
reason right now but will be used a lot in research studies

this is where i was before i was diagnosed with the next stage
would have been a good research candidate in my 40s and 50s
if all this stuff was known then

mild cognitive impairment (this is my diagnosis) in which mild
changes in memory and thinking appear but do not impair every
day activities and functioning
i am very early in this phase and although symptoms are not
evident to others they are noticeable to me
i feel like these did start to interfere with my practicing of medicine
and the fear of harm to patients is why i discontinued practicing
i have also been placed on aricept (donepezil) which will slow
down the symptoms over time

the biomarkers mentioned above are positive in this category
i will be tested for all of these outside of the research study i am
in at this time (any studies done in the research study remain
blocked from review by myself or my doctors-part of the deal)
i have to do my testing outside of the research studies in a private
medical practice
i will report them when they come in this summer

remember it was my occupation that was the reason i
stopped working
had i been in another profession i would have continued to work

dementia is the final stage
this is where most people are diagnosed
medications are used to slow down symptoms but the disease will
march on
this stage as it progresses starts to affect the caretaker as well as
the patient

in the initial video above you can see the number of people with
the disease is high
well there are similar numbers in each of these categories so the
numbers of people affected is even greater-most dont know it yet

hopefully a drug can be developed that will slow the disease down
eg a drug to stop amyloid deposition in the brain if thats the cause
of this disease which will prevent or slow down or stop the disease
similar to what the statin drugs have done in slowing down or
preventing the development of arterial blockage in the heart

thats the goal here with these new classifications is to find a
preventive treatment for those at risk eg for my children or
grandkids or nephews and nieces and great nephews and
great nieces and maybe yours

to be continued
_________
since i wrote this 12 years ago my memory has improved to a normal level and remained there
i have had 31 infusions of the drug aduhelm which probably has removed the amyloid plaques from my brain
hopefully doing that will slow down my cognitive decline ie memory loss

if i could see my tau pet scans i would know if my disease has progressed since i started the study 
as where the tau tangles accumulate in the brain determines what symptoms you have

we can now diagnose folks with prealzheimers disease before they have symptoms by
doing a spinal tap for amyloid and tau
doing an amyloid pet scan
doing blood work for amyloid and tau which isnt available yet in the private world but will be soon
it the blood work is used now in research studies to screen clinical trial subjects

so 
soon if you want to know if you have it you can

they are treating patients who are prealzheimers now in clinical trials with the drugs like i am on
aduhelm
leqembi
donanemab 

i know one person who is prealzheimers and is already taking aduhelm in the private world
they have to pay for it

so hopefully in 12 years i can write about the fact that these drugs worked to slow down cognitive decline
if they dont work i wont be able to write anything

yes
we have come a long way in 12 years
and again
its to be continued

the organicgreen doctor