alzheimers news-common questions

ALZHEIMERS NEWS-COMMON QUESTIONS

each time i do my presentations on alzheimers disease

i get a lot of questions

well they never end those questions

once they start asking it seems this floodgate opens

all those questions that they cant find anyone to answer

starts flowing out 

like a flood running over a dam

i feel like i am a unique person to answer these questions

since

my family has been riddled with alzheimers disease

my mother and younger brother died with it

my father probably had it

my older brother probably has it now

i have mild cognitive impairment amnestic type the precursor

stage before alzheimers although my memory recently 

returned to normal levels

i am a family doctor who treated some patients with alzheimers disease

looking back i didnt do a good job so i know what some of these 

people are facing as they see their doctors

i am a research study subject in a large alzheimers study

i am awaiting new treatment studies that have promise

so they start asking questions i give answers based on my personal 

experiences and medical knowledge

i keep up with all thats going on in the alzheimers world

eg i read 10 articles on alzheimers this morning

someone always asks about aricept (donepezil)

i can guarantee that their doctors dont really know about its side effects

yes like me when i was in practice they can read about them

and have patients tell them about their side effects

but

i read about them and i personally experienced them myself

so i really understand them

most folks stop the medicine since they dont take it right

and because they dont understand that the side effects are worse

at the beginning but get better over a few weeks

its like taking chemo at the beginning of treatment

if you can get through it you will break through on the other side

with less side effects

patients just arent explained all this 

i try to go through each side effect with the audience

then someone always ask what do i do if i have memory issues

i always say

get evaluated

always

most folks dont have dementia or alzheimers they have some cause 

thats fully treatable

like

med side effects poor controlled blood pressure cholesterol diabetes

obesity sleep habits anxiety depression inactivity stress etc

a few will have abnormal labs like b12 folate vitamin d homocysteine

hormone levels

all fixable with replacements

then i tell them make an appointment for only memory loss and 

nothing else

go in prepared with list of symptoms

make sure a workup is done to include history and exam labs some

type of memory test maybe labs

if they are ignored go somewhere else

if the person may have dementia they should not go alone ever

do an online questionnaire on how they are doing

i always refer them to the 21 question alzheimers questionnaire online

fill it out and take it with you

is dementia alzheimers 

dementia is a general term 

alzheimers is one of the most common causes of dementia

others are vascular dementia lewy body dementia frontotemporal dementia

parkinsonism dementia etc

is there are cure

no i say 

not yet

but we are working on it

the best you can do to prevent it is 

100% take care of your health maximizing it all including 

diet and exercise

if diagnosed take initially aricept (donepezil)

it helps about 1/3, it doesnt help 1/3 they just get worse, 1/3 stay the same

consider entering a research study 

they need volunteers badly 

this is how we will  find a cure

there are treatment studies ongoing now and soon to start that show

promise in slowing down the disease and if we are lucky

they will stop the disease if treatment is started early enough

here is where i go

www.utsouthwestern.edu/adc

so those questions go on and on and on 

i stood and answered them for two hours before

people it seems are starving for answers

two things

i am always available to do question and answer sessions in this area

contact me via facebook via the link on this blog page

i also do a talk on clinical trials and on alzheimers disease and on 

my story

i will answer questions sent to me on facebook

and if appropriate on this blog

feel free to ask me

then 

we need money to help in the fight

each fall we do alzheimers texas walks in this area

come walk at a site convenient to you and donate what you can

www.txalz.org/walk

outside of central texas 

you can do the alzheimers association walk to end alzheimers

at

www.alz.org/walk

we need your help

the organicgreen doctor

its their day, links

ITS THEIR DAY

today is veterans day
to honor those who have fought in wars for our country
and have served in the military
my view is whether you agree with a particular war doesnt
matter
when it comes to supporting the veterans who fought those wars

they signed up to protect us and some make the ultimate
sacrifice
they die

i always thought that veterans day should be a national holiday
lets get rid of say columbus day
make it a true holiday where all things are closed
a true memorial day
and
i think during election years that elections should be on
veterans day
maybe we could get more folks out to vote
as
the more folks who vote the better our democracy is
and
maybe we wont fight so many wars
and
maybe we can support our veterans better after they
come home
thats when they really need our support
as
it lasts their lifetime
those effects of fighting in wars

we havent always done a good job of that

so today im thinking of
ancestors in the past who fought in the war of 1812
the civil war on both sides
spanish war
ww1 the war to end all wars but it didnt
ww2
korea
vietnam
middle east wars dont think we will ever get out of there

most recent times
my three brothers
my oldest in the army
my historian brother in the air force
my rainwater brother in the air force
my judge brotherinlaw in the air force
my nephew in the marines and my nephew in the navy
my uncle who was shot in the pacific in ww2
my wifes dad in the air force

thank all of you for your service

links

neurosciencestuff.tumblr.com

for those of you at the alzheimers session yesterday
here are the links i promised i would post here

one of the links is to the 21 question questionnaire to fill
out on your loved one that needs an evaluation
fill it out score it and copy it
take it with you to the doctors office

click on this link that will take you to a blog i wrote
that has all the online links you will need

click on this blog on the reversal of cognitive decline 
from a ucla study

feel free to contact me via email if you have questions
the email address is on my card that i gave you
or
post a comment on this blog

the organicgreen doctor

fate

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 foalate 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 organicgreen doctor

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