Friday, December 23, 2022

78th week and 12th anniversary

 78TH WEEK AND 12TH ANNIVERSARY

78TH WEEK

that picture above is of me standing in front of the building 300 at ucla last tuesday right before i entered the building for my 6 hours of testing
i had just returned from a short walk after arriving since i had been sitting in a car for over 2 hours
this is the 3rd of these all day testings i have done in the biogen aduhelm embark clinical trial at ucla
this was week 78 of the study

here was my schedule
neurology exam by neurologist
moca or montreal cognitive assessment memory test
mmse or mini mental state exam
adas cog 13 or alzheimers disease assessment scale cognitive memory test

these three are frequently used to assess memory in clinical trials
most neurologists use one of these to assess and follow memory patients
i usually get a moca memory test each year when i see my private neurologist in santa barbaa

my scores were in the normal range where they have been the last few years
they were not normal on my initial visit 12 years ago and for the next few years
then they converted to the normal range

i had 6 other memory evaluations required by the study that morning also

when i finished i felt like i had just taken a 5 hour final exam
then
i had an mri of the brain to make sure i have not had aria or microbleeds in the brain
my umpteenth one i have had
they have always been normal
ill get a report on this one soon
i expect it to be normal

i get to repeat all this again this summer
i get my next infusion of aduhelm in two weeks

i read this week that aduhelms cousin lecanemab when given to over 75 years olders that it showed a 40% improvement in cognitive decline
i hope that translates to aduhelm when they report out the embark aduhelm study in a couple of years

12TH ANNIVERSARY

yesterday was the 12th anniversary of my last day thanks blog and last day to work
the next day i saw my neurologist who diagnosed me with mild cognitive impairment that has now been shown to be due to alzheimers disease
i had positive amyloid and tau levels in my spinal fluid
i had a positive amyloid pet scan 

i was placed on aricept or donepezil which i have taken for 12 years
it slows down symptoms but doesnt affect the disease
i attribute starting this early as one of the reasons i am doing well today

i also hope that the aduhelm infusions are contributing to my doing well 
i am sure healthy living also has helped a lot 

i do know that the slide down that slippery slope of memory decline can happen at anytime

i went back this morning and read my anniversary blogs i write about this time each year
i couldnt make myself read the one i wrote in 2010 called last day thanks
i linked it here and above if you want to read it
i always tear up when i read it

one thing i did when i had to retire was i got busy and stayed busy
now i blog each morning usually 5 days a week taking off sometimes as it seems to refresh me
i have become more involved in the community garden than i was before the pandemic
i had moved volunteer hours during the pandemic to the garden since i felt much safer in the garden
i have kept those volunteer hours in the garden since i enjoy it a lot

i still do alzheimers panels when asked
that slowed down with the pandemic
i did some on zoom panels

i do more grandparenting now that takes up more of my time

i am happy with my present schedule 

i look back at where i was 12 years ago without much hope of getting better
i really expected to be in a memory center by now
but
i am not

i feel lucky for having to be able to get in the aduhelm treatment study as it may help some to slow this all down
i plan to continue it or one of the other ones about to be approved into the future

we havent done any traveling since the pandemic but hope to in 2023

i still do all our financial planning and finances
i do all our taxes
i do the grocery list each week and do most of the shopping 
i also do part of the meal planning and cooking

i do all the planning of what to plant and when in our community garden

my overall health seems to be good for my age
i can do all my garden work and can keep up with the college folks who volunteer in our garden

i dont really notice anything with my memory except for what may be normal for my age
finding some words remembering some names etc

this correlates with my normal memory tests from this week

 i hope that on my 13th anniversary i am where i am now

ill take that every year from now on

the organicgreen doctor

2 comments:

  1. Doctor Nash, Your story is inspiring as it is very similar to my story. At 63 I somewhat accidentally found out that I have the markers for AD in my brain. As a result, I am self paying to use Aduhelm. I just had my 6th infusion yesterday. I am intrigued by your information on Aricept and that you have been taking it for 12 years. Neither of my two neurologists have recommended it. I am going to ask about it at my next appointment. After watching your interview on Being Patient Alzheimers and some quick google searching, I found what's written is that it doesn't work after a couple of years. I am wondering if your early diagnosis is why you are able to see benefit for continuing to take it. My grandmother died at 87 of AD and I have 2 aunts in their 80's living with AD. I am hoping I have the same longevity that they and you have. Do you know of any studies that I could read regarding the benefits of taking Aricept long term? Thank you for your time. Cassie

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    Replies
    1. cassie thanks for reading my blog. from your writing i presume you have not been diagnosed with memory loss or have a diagnosis of mild cognitive impairment. i also presume when you say biomarkers you mean you had a positive amyloid and or tau pet scans or a positive spinal tap for amyloid and tau.
      if those two are true then you would be consider to be prealzheimers or have prodromal alzheimers.
      as you may know their are studies where folks with prealzheimers are being treated with aduhelm and other antiamyloid drugs in clinical trials
      if i wasn't already diagnosed and being treated in my clinical trial i would also be searching out treatment on my own.

      there was a study from nature that is linked in a recent blog i wrote on august 22 2022 linked here
      https://www.organicgreendoctor.com/2022/08/alzheimers-news-i-am-sure-glad-i.html

      it shows a benefit from taking aricept early in your diagnosis. I'm not sure of studies in folks who were prealzheimers.
      some neurologist will not use aricept early in mci either.
      luckily my neurologist believed in using it early.

      feel free to ask more questions. togd


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