my story revisited #143-the advice hasnt changed much

MY STORY REVISITED #143-THE ADVICE HASNT CHANGED MUCH

i have folks reach out to me about themselves or family or friends about their memory loss
my advice hasnt changed much since i was diagnosed

science has advanced some 
the usual labs to do are about the same but i would add a vitamin d3 to the lab below
most folks dont do a glucose metabolism pet scan
if they do a pet scan they do an amyloid pet scan but insurance doesnt pay for it
they usually dont do a spinal tap 
soon to be available in the private world are lab tests that will be used to screen for alzheimers 
these will be cheaper than the scans and less invasive than he spinal tap
i think most neurologists ive seen uses the moca in house test for the initial evaluation for memory loss

the main advice i give folks is to get evaluated if there is a question of memory issues


when i wrote this blog 8 years ago i was in the final year of my adni alzheimers study and was actively looking for a treatment study
which
i found soon afterwards
biogens aducanumab or aduhelm alzheimers study
as of yesterday 
i have received 19 doses of the real drug aduhelm or aducanumab and 18 doses of placebo or normal saline

it helps to be proactive with your health
___________
07-11-2014
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 have 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 stepwise 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 drug 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 moca 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
vitamin b12
hiv hepatitis c syphilis
urinalysis
some will do folate and homocysteine 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 undersurface 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 insurance 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 culprit 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 pamphlet 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 aricept (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 normal weight
stay active physically mentally and socially
all three can improve memory
eat a proper diet the mediterranean diet is recommended
control depression 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 attorney 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
___________
im sure my advice then and now will be true in another 8 years except then i hope i can say get on that new drug that treats alzheimers disease

we arent there yet but we are closer

stay tuned

the organicgreen doctor