my story revisited #172-dont do this to me

MY STORY REVISITED #172-DONT DO THIS TO ME

i thought about some of these things in this old blog recently

i dont like it when i am in a medical providers office and instead of talking to me that look at my wife and talk to her
the same thing has happened before outside medical offices

my guess is and she probably would agree with me that between the two of us my memory testing will probably be better than hers
i cant score any higher on my moca tests or mmse tests nor can you

even i caught myself when i was talking to patients and their loved ones to look at the affected person and talk to them
i would find myself not doing that but would look at the spouse
i had to learn to not do that

when i progress with my dementia i want friends and family to not correct me if i tell a story wrong or get a word wrong
let it be it doesnt matter

talk to me 
shake my hand
hug me
pat my shoulder

thats what i what you to do for me


embark study update
yesterday i got my #28 infusion of aduhelm or aducanumab in the embark study
i have two more left in the embark study

yesterday like the nfl stars i signed a one year extension of the study to do 13 additional infusions
that should give me when im done at total of 43 infusions of aduhelm plus those 18 placebos i got at the beginning

the end of may and the first of june i have my end of study extensive memory testing neurological exam labs ekg mri of brain amyloid pet scan of the brain and a tau protein pet scan of the brain
then
these get repeated again next year

then im done with the study unless they extend it again

its amazing to look back over the last 7 years when i started this journey with its ups and downs

now it seems it may have been worth it all to have done these treatments

stay tuned
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01-16-2015
If I Get Dementia

1. If I get dementia, I want my friends and family to embrace my reality. If I think my spouse is still alive, or if I think we’re visiting my parents for dinner, let me believe those things. I’ll be much happier for it.
2. If I get dementia, I don’t want to be treated like a child. Talk to me like the adult that I am. 
3.  If I get dementia, I still want to enjoy the things that I’ve always enjoyed. Help me find a way to exercise, read, and visit with friends. 
4.  If I get dementia, ask me to tell you a story from my past. 
5.  If I get dementia, and I become agitated, take the time to figure out what is bothering me. 
6.  If I get dementia, treat me the way that you would want to be treated. 
7.  If I get dementia, make sure that there are plenty of snacks for me in the house. Even now if I don’t eat I get angry, and if I have dementia, I may have trouble explaining what I need. 
8.  If I get dementia, don’t talk about me as if I’m not in the room. 
9.  If I get dementia, don’t feel guilty if you cannot care for me 24 hours a day, 7 days a week. It’s not your fault, and you’ve done your best. Find someone who can help you, or choose a great new place for me to live. 
10.  If I get dementia, and I live in a dementia care community, please visit me often. 
11.  If I get dementia, don’t act frustrated if I mix up names, events, or places. Take a deep breath. It’s not my fault. 
12.  If I get dementia, make sure I always have my favorite music playing within earshot. 
13.  If I get dementia, and I like to pick up items and carry them around, help me return those items to their original places. 
14.  If I get dementia, don't exclude me from parties and family gatherings. 
15.  If I get dementia, know that I still like receiving hugs or handshakes. 
16.  If I get dementia, remember that I am still the person you know and love.
17. by racheal wonderlin in alzheimers reading room
     

__________
in june next year i will receive my last infusion of aduhelm
i expect that will be last time i will seek treatment for alzheimers in a clinical trial
i feel like i did my part 
i did my placebo treated study
i dont want a placebo again
now i knew that if i got the placebo that after 18 months they would do a crossover to the real drug
thats what happened to me
i will receive around 43 total infusions more than enough to totally remove all the measurable amyloid plaques in my brain

the question is how long do i need to wait till i need retreated
no one knows how to answer that question yet

i have about 18 months to find that answer
then
i will have options
aduhelm or aducanumab
leqembi or lecanemab
donanemab
all three you will be able to get in the private world

then i will also keep an eye on the research world for something new
maybe

it is possible though my almost 15 year journey in the alzheimers research studies will be done

like i told the head alzheimers physician yesterday 
ive done my duty

yes
she said
you have

the organicgreen doctor