my story revisited #156-fate revisited

MY STORY REVISITED #156-FATE REVISITED

this morning as i was looking at my old blogs deciding what to write about
the first one i clicked on was this old blog titled fate

it was apropos to the event i attended this weekend

little did i know that asking a lady to take our picture in front of a rainwater tank would lead to her husband getting his memory loss evaluated

this weekend i was on a panel answering questions from a moderator at a usc facility in the los angeles area about my story from diagnosis to now

on the panel with me was a couple with the wife having mci and a husband whose wife has mci thats treading towards early dementia
the audience was about 100 folks who are in the medical field like doctors social workers nurses nurse practitioners physician assistants psychologists therapists etc

they needed to hear from us as do most medical providers
what do we think

listen to your patients was a common recommendation from us
there are too many barriers to getting diagnosed

i was lucky that i was in a clinical trial when i got diagnosed so my workup was programmed into the study

the theme of the conference was the early diagnosis of the disease
i told folks i am the poster child for the early diagnosis 

as i will tell folks this weekend when i talk for a couple of minutes before our walk to end alzheimers disease here in santa barbara
doing all the healthy things i am doing plus taking aricept or donepezil for the last 12 years and maybe taking those aduhelm infusions each month has slowed the disease symptoms some
but
as we in the alzheimers world know 
this disease always wins in the end

i am scheduled to get my #23 infusion of aduhelm at ucla next week
__________
09-30-2014

FATE
i called it fate
she called it as a result of her strong religious beliefs
and an early morning prayer for help that morning

two weekends ago my wife she and i went to the school
to visit the garden fair
its the school where i helped put in the garden in the back
ground of the picture below

note i meet today with another school to help them plan
their school garden
my purpose is to help as many people garden organically
as possible especially kids and the schools

my other purpose is to spread the word about alzheimers disease

that morning we stopped by the garden to see the fair
on my way to doing a q&a with a large group of caregivers
on alzheimers disease

i struck a conversation with this lady standing by the rainwater
tank that was on display
ill talk all day about rainwater just like i will on alzheimers disease
and on organic gardens

she and her husband was interested in putting in a system so
i gave her my card with my email address and my blog address
and my twitter link
i told her to email if she had any questions 

later as my wife she and i were in front of the garden
i wanted a picture of us so i saw this lady again

so i asked her would you take our picture sure she said
then
my wife she and i went on to the seminar which was successful
i think based on the response

this lady emailed me this week
that day when
she went out to her car to leave
as she sat in her car
thats when fate kicked in

she flipped over my card which says
this blog is about my journey with possible early alzheimers disease
please feel free to follow me along this path

i called it fate she called it an answer to her prayers
she said she got cold chills down her spine

she has agonized over this for months
her husband in his early 50s has seemed to develop memory loss
that is affecting his work and his life
she was at loss at what to do

as i emailed her back i decided to write my answer in this blog
so others in this situation may benefit from this blog today

first if you notice there is a problem or he notices there is a problem
or others notice there is a problem
then
there is a problem
dont ignore it

yes you can get early onset alzheimers although it represents less
than 10% of the cases
there is concern that since his mom had alzheimers disease that
this is what it could be

since he is young the same age my brother was when he was
diagnosed i recommend that he get an aggressive evaluation of
his memory loss

yes it can be a slow gradual onset that can be years in the making
the disease itself starts 20-30 years before the diagnosis is made

it is important that all other causes of memory loss be ruled out

like high blood pressure high cholesterol diabetes anxiety stress
depression sleep disorders like insomnia sleep apnea restless legs
etc low thyroid activity low vitamin b12 chronic infection
electrolyte problems  liver disease medication side effects drugs
alcohol old head trauma etc

many of these things can be treated

go to this link and answer the questions on your husband
my guess is that he will score a 5 or greater which will be abnormal
copy this off and take with you when he goes to the doctor

remember even if his score in in the normal range he needs
an evaluation

make an appointment with his primary care doctor
go with him
go in the room with him
write out a list of medications and a list of things that you
have noticed
make a copy to hand to the doctor

when you make the appointment dont make it for anything
but for memory loss

a good workup will include meeting with you and him then
just you and then just him

here is a link to the clinical parameters for evaluation and treatment
for someone with memory loss
the gold standard in the state of texas for this evaluation

if you are not pleased or if you are put off by the doctor i will
send you the name of a neurologist to see for evaluation

remember you are looking for treatable causes

he should have

a good history and examination looking for causes

labs like cbc metabolic profile b12 folate tsh-thryoid level ua
maybe hiv hep c syphilis tests

a good screening in clinic memory test like the mmse or moca
then based on what this all shows
he may need a neuropsychological test which will tell if there
is memory loss or not
he wont like that one
i do it every year in fact i have to do
one next week and i dread it

then he may need a mri scan of the brain looking for abnormal
things that would explain his memory loss like strokes old head
trauma cyst tumors brain shrinkage etc

then there are new tests that may or may not be done based on
the history
spinal tap for beta amyloid and tau or the amyvid pet scan

the younger the patient the more aggressive the workup
your husband meets that category

remember some people develop memory loss that becomes
stable and never changes the rest of their life
they can still have a meaningful life
many can continue working

what you need is an answer as what is the cause of all this

also remember
he knows he has a problem
he may be scared to know

i hope this is helpful
please free to contact me if you have a question

you may want to look at this blog on tests and links

wishing you the best
_________
the labs commonly ordered are cbc chemistry profile tsh vitamin b12 maybe vitamin d3
sometimes those other ones are ordered listed in my old blog above

there is this push to have folks get evaluated as soon as symptoms starts
as
in the future the treatments will need to be started either before symptoms start or as soon as they appear
the earlier its started the better

 

you can join and or donate to our organicgreendoctor walk team for the santa barbara walk to end alzheimers on saturday november 5th

as i mentioned above i will speak for about 2 minutes in the opening ceremony holding my blue flower which designates someone who has the disease

i would rather be holding the white one which designates someone that is cured of the disease

join us

the organicgreen doctor