speaking from experience

SPEAKING FROM EXPERIENCE
i got a message recently from a friend wanting to know if
i had suggestions for her and her family
as they thought her husbands father may be in the early stages
of alzheimers disease

first my qualifications for speaking on this subject

i am a family member whose mother and younger brother died
from the disease and whose dad probably had the disease
i am a family doctor who treated alzheimers patients
then
i am a patient
i have early mild cognitive impairment amnestic type
thats short term memory loss the one that you see in alzheimers disease
all testing i have done points to alzheimers disease as the cause of this
i am in the largest alzheimers disease study ever done
i give talks to groups on alzheimers disease
i take the alzheimers medicine aricept (donepezil)
i read several articles on alzheimers every day

thus i feel qualified to make recommendations to folks


if he hasnt been to a doctor yet
go to this link fill out this questionnaire 
21 question questionnaire
print it out
take it to his doctor
dont let him go alone
someone like a wife or close relative should go to every appointment
and i mean in the room with him

also make a written list of what the patient and the family has noticed
i guarantee that the patient has noticed things a long long time before
you have

caveat denial by the family and the patient and i might add the doctor
are the biggest hindrances to getting an early diagnosis

when you make the appointment make it only for memory issues
and nothing else

heres the evaluation that should be done
not all at the same time but done in a step wise manner

a good history and physical looking for something that explains the
memory loss
like
eg uncontrolled blood pressure strokes depression sleep disturbances
anxiety low thyroid low vitamin b12 dug abuse medication side effects
alcohol abuse head trauma

these things can be treated and the memory may improve

caveat remember there is no treatment or cure for alzheimers disease
its progressive and fatal
the speed of the disease varies from patient to patient
i have friends who gave me condolences when i was diagnosed
but they are no longer with us but i am

then if the history and exam doesnt point the doctor in a certain
direction
a good mental status exam is done
common ones are minicog mmse mocha and based on these results
the gold standard test is the neuropsychological exam
usually done by a psychologist or neuropsychologist and takes
1-2 hours
it will tell you definitely if there is memory loss and what kind it is
remember with alzheimers its usually short term memory loss

then
labs are done looking for treatable causes
cbc metabolic profile for electrolytes kidney test liver tests
tsh for thyroid function
vitaming b12
hiv hepatitis c syphilus
urinalysis
some will do folate and homocystiene level
some of these if abnormal are treatable


then
an mri scan is done to rule out again an explanation or treatable causes
like stoke head trauma masses tumor aneurysm excessive brain fluid
white spots called wmh that are associated with high blood pressure
high cholesterol and or diabetes and can mean an increased risk of
dementia
also brain shrinkage may show up initially on the under surface of the
brain called the hypothalamus

these are the tests that are commonly done on someone with memory loss
i would question the workup if they arent done
unless things are advanced to later stages which sounds like isnt the case
with this patient

new studies to consider and usually not covered by insuance and medicare
are


glucose metablism pet scan of the brain-it looks at areas in the brain that
uses glucose
with alzheimers there are lots of areas where the glucose isnt used
because of the damaged brain cells


amyvid pet scan of the brain-it highlights beta amyloid the cuprit that is
thought to cause alzheimers
if you have alzheimers disease it will usually be positive remembering
that other things can make it positive

spinal tap for beta amyloid and tau in the spinal fluid
early on in alzheimers the levels become abnormal

as of 2014 this is the best that can be done to diagnosis alzheimers
how far you go in the diagnosis is different for each patient

i have had all these done since i wanted to know exactly where i am
with this disease


there is a new pdf pamplet on line called clinical best practices for 
the early detection diagnosis .... in alzheimers disease
its written as a guide for doctors
look at it also and use it as a guide to make sure the workup has
been complete

now presuming the diagnosis is early alzheimers


he will probably be offered aicept (donepezil)
i highly recommend he take it
its the only medicine that may help
it will not treat the disease itself but it may slow down the symptoms
some
the earlier in the disease he takes it the longer it lasts
1/3 get better 1/3 stay the same 1/3 get worse
the side effects are many
the worst is nausea
they are all worse the first 4-6 weeks but over time they get better
ive been on it for 4 years now and am able to tolerate its side effects
the nausea can be handled by taking it like i do one hour after eating
breakfast then taking a small snack of dried fruits and nuts immediately
after taking it
i usually will take a piece of fruit an hour after that
this gets me through the morning and controls the nausea
taking it at bedtime may interfere with sleep
the other side effects of leg cramps blurry vision mild vertigo vivid
dreams and sleep disturbances get better over time
i compensate for the sleep loss at night by napping in the early afternoon

so there are side effects but looking at the options these side effects look
pretty dang minor

warning dont suddenly quit the aricept without discussing it with your
doctor as the level of memory will drop to where it would be if you
had not been on the medicine
restarting it will not get you back
to the same memory level you were at

then look at his overall health
these best practices need to be done

control blood pressure cholesterol and diabetes
maintain a nomal weight
stay active physically mentally and socially
all three can improve memory
eat a proper diet the mediterranean diet is recommended
control depession anxiety
live a non stressful life
dont smoke
dont drink excessively
listen to music
be happy

then the family and the patient need to get help
they cant do this alone
the best source of information is the alzheimers association website
www.alz.org
go there and spend time reading about whats available
find the location of you local chapter also
they are extremely helpful
there is also an online discussion group there


look at your
will
power of attoney for finances
power of attorney for health care
living will
dnr
if he already has these update them now if its not too late

doing it after things advance gets harder to do


a good book is the 36 hour day

a good blog to follow is the alzheimers reading room
if it happens in the alzheimers world it will show up there

i do a blog here every friday on an alzheimers topic
i also write about my journey as it progresses
which for now is fairly stable

i am due my annual study evaluation in 2 weeks and
am trying to get involved in some new treatment studies

look forward 5-10 years ahead and be ready for what comes you way
it will be a long arduous journey

if you want to do the fringe things like take coconut oil vitamins etc
thats ok but make sure those things i mentioned above are done first

remember if something really is going to help with alzheimers disease
we will all find out quickly
no one is going to hide it from us

get involved get involved
do the walk to end alzheimers in your area
this is how the alzheimers association raises money
they are the ones that are making the difference in alzheimers
providing education family support and funding research

consider having him enter a study
or have family members enter a study
they need volunteers desperately
see clinical trials on the www.alz.org

i am just one email or text or comment away
also follow me on facebook
or
my new facebook page

the organicgreen doctor

its not me

ITS NOT ME



glucose metabolism scan


amyloid pet scan

these pictures and scans above

show a normal brain on the left
and
an alzheimers brain on the right

the second one is a glucose metabolism pet scan
glucose is used by the brain cells as its energy source
it shows as the red stuff in this scan

a normal brain uses it everywhere
a diseased brain with alzheimers uses little glucose as
the damaged cells just dont work and cant take up
the glucose

the third picture is a amyvid pet scan
it shows areas where amyloid has accumulated
thats the red stuff
amyloid levels increase as alzheimers progresses

a normal brain has very little amyloid
an alzheimers brain has a lot of amyloid

this weekend i went to a caregivers form
one of the speakers gave an excellent presentation on
the symptoms of alzheimers disease
you know what you see when you deal with someone
who has this awful disease

at the end she showed a picture like the first one
it was sobering to me
to see the normal brain
then see the rat holed diseased alzheimers brain

you realize when you see that swiss cheese brain
why your love one cant remember your name
why they ask the same questions over and over
why you cant reason with them sometimes
why they cant bath feed and care for themselves
why they get angry get aggressive
why they may cry
why they seem to lack empathy they dont understand anymore
     what they say and do can affect someone
why they cant watch movies or finish activities
why they wont or cant eat
why they dont know who you are
why they crap in their pants or pee on things
why they cant remember to change clothes
why they wonder off
why they hoard things
why they take off their clothes or do other inappropriate behaviors

look at those pictures
the brain and its interconnections are just gone

its like the phone service communications electricity during storms
like hurricanes tornadoes floods
all the things that make those things work are just gone

so it is with alzheimers disease
its all gone
but unlike those storm things
the brain cant be fixed
and
it will only get worse

so when you deal with someone with alzheimers disease
or
please oh please
if i end up with this disease
and
you see me like this doing all those things
remember oh please remember

its not me

the organicgreen doctor

old willie, scans

OLD WILLIE

old willie will be 80 years old today 

according to him 

but according to states records its april 30

of course

i think he should change his birthday to 

4/20

if you dont understand why 4/20 and what it means

just ask you kids or your grandkids

my guess is they know what that means

willie played last night at the backyard in the austin area

im quite sure it was packed

and there probably was a strange odor in the air

and im sure austin kept the concert weird

i do admit when i see willie he looks 80 years old

all that rough living hes done

well he actually looks 100 years old

but

he still has that distinctive voice

and his old guitar

ive seen him play live twice

once in little rock at a concert at barton coliseum

a lot of drunk people

but it was interesting that the people in the crowd were

a mixture of all ages and sizes and looks

obvious red neck country people with dressed up city folks

with a lot of hippie looking people

all enjoying his music

thanks to my medical school friend for introducing us to

willie and his music

ive been hooked since

then

we took my motherinlaw to a fourth of july picnic in 

ft worth texas

it was hotter n hell

the place was packed all day as tons of other musicians played

then willie showed up when it was cooler in the evening

and everyone didnt seem to mind the wait

yes a lot were drunk and 4/20ed

my motherinlaw endured that hot sun and long day 

but it was worth it 

she sure loves willie

when willie finally leaves us one day which i hope is 

a long time away

there will never ever be another one 

happy birthday today or tomorrow willie

may you have many more

SCANS

friday i went to dallas and had 

a mri scan of the brain as part of the adni study that im in 

typical mri scan 

louder than hell 

be still for over an hour

stuck up in that cylinder 

keep your eyes open for the next 7 minutes

you ever tried that before without blinking

sorry i blinked couldnt help

why dont you try it and see if you can do it

not

looked at my old mri scan report

and oops there were some white matter hyperintensities (wmh)

areas on my scan

had forgot about those

since the scan more has been written about these

they are found commonly in elderly patients 

but im not elderly

if you have an increased number of these they can be associated with 

an increased risk for developing dementia alzheimers and stroke 

and 

are found in patients with high blood pressure obesity diabetics high cholesterol

this is why its important to keep these things under good tight control 

over a life time

i only have one or two which are not significant

hopefully all im doing to control things with my health 

living right eating right exercising controlling my cholesterol and blood pressure

and maintaining a normal weight will keep those wmh where they are now

then i had a glucose metabolism pet scan of the brain 

got an iv infusion of labelled glucose 

when i got home that night my wife she said you sure taste sweet 

when she kissed me

in alzheimers patients since they cant use the glucose in the damaged 

brain cells there is no uptake of the labelled glucose

and it will show up as blank areas on the scan 

my last glucose metabolism pet scan of brain was normal

thursday 

spinal tap for beta amyloid and tau protein

amyvid pet scan of the brain for beta amyloid

the organicgreen doctor