alzheimers news-now what do you do

ALZHEIMERS NEWS-NOW WHAT DO YOU DO 

now you are diagnosed what do you do
well this is what i did

i started reading up on alzheimers disease so that i could understand what we knew about the disease
then i looked at what can you do to slow down the disease
those things one could do was easy to find since it was on the alzheimers websites and frequently showed up in articles on alzheimers in the lay press

i made sure i had a complete evaluation which i eventually had
so
my diagnosis would be accurate before i started changing my life

my mother had alzheimers and my younger brother was diagnosed a few years before i was
so i had seen personally what this disease could cause in ones own family

to review
i had a good neurological history and exam
i had screening labs that are done looking for other causes of memory loss
things like blood count chemistry profile thyroid levels vitamin b12 levels folate levels vitamin d levels homocysteine levels
my b12 and my vitamin d3 levels and my homocysteine levels were abnormal
i took and still take supplements to keep them corrected ie b12 d3 and folate
i had a good memory exam in the form of the in office moca test and the full neuropsychological exam
i had several mris that were normal
early on in the disease the mri may be normal
it also rules out other causes for memory loss like strokes masses too much fluid etc
i had a spinal tap for amyloid and tau that was abnormal
i had an amyvid pet scan for amyloid for the aducanumab study that was positive
so
i know with a high degree of certainty of my diagnosis

make sure you or your loved one has had a complete evaluation

then i started looking for treatments
there are a lot of alternative treatments like with cancer that folks can take your money and they really dont help any

i used supplements for awhile but after whatever i had in march that made me sick i stopped most of them but continued the ones that treated something i could measure each year with labs
low b12 low vitamin d3 high homocystiene level

i even used axona for awhile
it is a food supplement medical food that is prescription that produces ketones that provide a food source for damaged brain cells
it has not been shown to help much in studies
i stopped it after a few months

i did go right to aricept (donepezil) since it had been shown to maybe slow down the symptoms
if its started earlier enough in the disease it can slow the symptoms for awhile

i went to the alzheimers association website and became quite familiar with it
i also utilized other alzheimers websites
i read a lot of alzheimers blogs
i read a lot of articles on alzheimers by signing up for a google newsfeed on alzheimers
i dont miss much that happens in the alzheimers world

you and your loved ones have to educate yourselves about this disease 
others arent going to do it for you

if you are the caregiver or will be the caregiver you need to be ready
look for caregiver support groups
read about the disease
you will have to be your loved ones advocate one day 
the more you know about the disease the better it is

look for alzheimers research studies 
participate if you can 
i dont regret doing my eight years of research studies
i got the full workup one needs to have
i got treatment with biogens aducanumab that may turn out to slow down the disease
also you feel like you are adding to the cause of finding a treatment and cure 

find you a good primary care doctor or neurologist to help you as you go through this disease journey

also
here is a link to a two page handout from the national institute on aging on what steps to take once you or your loved one is diagnosed 
the title is next steps after an alzheimers diagnosis

there is a good book on this written by the mayo clinic titled
mayo clinic on alzheimers disease 

then 
become involved with the alzheimers walks in your area
they are all being done virtually this year
find one and participate
you will make good contacts with folks that can help you when the time comes

here below is the information on my team organicgreendoctor that will walk in this years santa barbara walk to end alzheimers on saturday november 7 2020

the opening ceremony will be virtual
so anyone can watch it online

then

each individual member will walk in their neighborhood or favorite hiking trail wearing their purple alzheimers shirts for the 2-3 mile walk 
this is the safest way to do the walk this year
please wear your mask and keep a good social distance from others
hopefully next year we can all be live

here is the link to our team
the organicgreendoctor team

donate and or join us that day
you can walk wherever you live

the organicgreen doctor