my story revisited #68-answers to your questions

 MY STORY REVISITED #68-ANSWERS TO YOUR QUESTIONS

this weekend the phone rang and when i answered the lady said hi im jane doe a friend of your friend
she referred me to you to ask you questions about my mother and her new diagnosis of alzheimers disease
sure i said
an hour later i told her as we said bye to contact me if she had any more questions

the last call like this lead to a zoom meeting with a couple from florida who was a relative of someone who i knew
after talking or should i say zooming for an hour one of my recommendations was that they consider getting a second opinion on his diagnosis

they did and it appears he may have a more aggressive form of dementia that is managed slightly different from alzheimers disease

jane doe from this weekend lives a thousand miles from her parents
her mom from what jane told me probably had a good workup done
it sounds like she had the labs and neuropsych exams and mri scans and what sounds like a amyvid pet scan and she also was seen by a well known neurological center near where they live

my guess is that her diagnosis is accurate
also from what jane told me her mom is probably in the moderate stages of alzheimers

so
what should they do
educate themselves about this disease and what to expect
the family needs to realize her mom will not get better
it will usually be a slow downward slope journey
i recommend they start with the the alzheimers association or another alzheimers organization where her mom lives
her dad should consider getting in a caregiver support group 
it will help him and he also will find out whats available in that area
her dad needs to take care of himself also

our friend sf whose husband greg our friend who died from huntingtons disease after a long lengthy progressive illness did the best ive seen with being a caregiver and getting the help she needed
they knew about 25 years before he died of his diagnosis
his mom had died from huntingtons so he knew what to expect
they prepared themselves financially and emotionally for the time when she and he would need help

they were able to have caregivers that helped about 12 hours a day
this gave her a respite from 24/7 caregiving which can really age a caregiver emotionally and physically

i told jane her dad needs to be ready to take care of himself through all of this 

i thought of this blog i wrote 8 years ago about a series of three articles from the ny times where a well known neurologist answered folks questions on alzheimers disease

i reread them this morning again
the only thing different is now the amyvid pet scan for amyloid is readily available for diagnosing alzheimers and a new alzheimers blood test will be available soon
also maybe my drug biogens aducanumab may turn out to help if its started early enough
we will eventually know

if you have a loved one with dementia you should educate yourself about the disease
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12-14-20
ANSWERS TO YOUR QUESTIONS

i know a lot about alzheimers disease
since i may have it only time will tell
since im a physician who has treated alzheimers patients
since my mother and possibly my father had alzheimers disease
and since my younger brother has it now
and since im a study subject in the alzheimers disease neuroimaging
initiative
and since ive given talks on alzheimers disease to medical groups
and nonmedical groups
but
i dont know it all

im always getting questions about alzheimers
and i do know a lot about this terrible disease
more i guess than most people do
these questions come to me from friends and people i meet
via conversations
via facebook
via email
via this blog
via alzheimers discussion groups

i freely answer them all and research the things i dont know

last week i came across this series of 3 articles from the ny times
where people could write in and ask questions from a national
expert on alzheimers disease
(no not me)
these 100 questions and his answers were published in this three part
series on alzheimers

examples are why cant i remember things about a person except for
their name
answers to questions are always on the tip of my tongue
should we tell the person with the disease they have it
what are the early signs of the disease
what workup needs to be done
what treatments are available
should i be tested
are there genetic tests available
and 92 more questions

the expert is dr p murali doraiswamy a psychiatry professor at duke
university who wrote the popular the alzheimers action plan

if you have this disease or think you do or if a family member friend
coworker or neighbor has or might have it
you should read these three articles from the ny times

these are the questions and the answers that we all have
about dealing with this disease

article one

article two

article three

hopefully he will publish these in a book as all the things we
want to know are in there

so if you are affected by this disease
if you havent yet you will
you should read these articles
__________

it does make me feel good to know i helped someone deal with this awful disease

the organicgreen doctor