alzheimers news-what to do

ALZHEIMERS NEWS-WHAT TO DO

frequently folks will reach out to me from social media or email or via family or friends wanting to know what to do about a loved one or friend or even themselves who are having memory loss

i always tell them
seek an evaluation now dont wait
the earlier you find the cause of the memory loss the sooner it can be evaluated and treated

what evaluation needs to be done

you need to see a medical provider for a good history and examination looking for causes of the memory loss
things like medications alcohol or drug abuse uncontrolled blood pressure or blood sugar or cholesterol or obesity or sleep disturbances or mental health things like depression or anxiety or increased stress
sometimes aggressively addressing these can improve ones memory

then
labs need to be done
a complete blood count or cbc and a chemistry profile looking at electrolytes and kidney functions and liver enzymes and a tsh for thyroid function and a vitamin b12 level
some providers will check a vitamin d3 level and a homocysteine level
eg an abnormal thyroid level can be treated and a low vitamin b12 can be also with oral meds

they are looking for treatable causes and explanations for memory loss

then
a good in office memory test like the moca or the mmse or equivalent needs to be done
the clock test isnt good enough
i like the moca since it will usually identify someone early with mci or mild cognitive impairment whereas the mmse may not

if necessary a full neuropsychological exam needs to be done
its performed by a neuropsychologist and may last 1-3 hours
its the gold standard memory test

then
if no cause is identified an mri is commonly done
it will identify masses tumors increased brain fluid old strokes and other changes called wmhs or white mater hyperintensities and shrinkage of the brain and hypothalamus commonly seen with alzheimers disease
wmh are seen with  high blood pressure and high cholesterol

commonly these above evaluations can be enough to give you your diagnosis

then
if needed consideration should be done to do a amyloid pet scan
if you have alzheimers disease it will be positive
keeping in mind that other things can make it show amyloid accumulation in the brain
but
it will be positive if you have alzheimers

medicare and insurance does not pay for this scan
it needs an experienced neuroradiology person to properly interpret it
it costs $5000+-

if you go through all this you should be able to identify whether or not you have alzheimers disease or have some other cause
like
lewy body dementia or fontal temporal dementia or vascular dementia or some other treatable cause

looking at my case
i have had all of these tests and more
here are my results

the history showed i had a strong family history of alzheimers disease
my physical exam was normal
my blood pressure was elevated so i took blood pressure pills to control it 
lately since ive lost weight and quit drinking caffeinated coffee and alcohol my blood pressure is normal
my blood cholesterol was elevated so i was started on a statin called lipitor or atorvastatin
my weight was slightly elevated now its normal
my labs showed a below normal vitamin b12 and an abnormal level of homocysteine and a low vitamin d3 all easily corrected with oral vitamin b12  and folate and vitamin d3

my moca was in the mci range at 24-25 which matched with the findings in my neuropsychological exam
my moca now is normal at 30

my mris all 10+ are normal except for a few wmhs or white matter hyperintensities due to my blood pressure and cholesterol

i had genetic screening and have the homozygous or apoe 4 apoe4 gene
this puts me at risk for late onset alzheimers

i have abnormal levels of amyloid and tau in my spinal fluid

i have had multiple amyloid pet scans all done in research studies
i have only got the results from the one done prior to the start of the biogen aduhelm study
you have to be positive for amyloid to be in the study

i also have had the blood amyloid and tau tests done in research studies but dont have the results
these are now used to screen folks for the research studies
soon they will be available in the private medical world

so 
now youve had a good workup
many folks can end the workup with an mri if it shows changes that help with the diagnosis

some folks may want to get an amyloid pet scan to be more sure of the diagnosis
remember to understand the limitations of the test
also
remember the diagnosis is made by putting all the testings together to make the diagnosis
no one test is 100% accurate
so
now you have been told you have mci due ot alzheimers or early alzheimers

what do you do

realize there is nothing you can do that will cure this disease
there are only things you can do to slow down the symptoms

this disease may take up to 20 years to reach its last stage
or 
it can take only 5-7 years to reach that stage

my mother and brother was in that last group
it appears im in that first group

consider getting on aricept or donepezil
it makes 1/3 get better but 1/3 stay the same and 1/3 get worse
read my blog last week on how it can prolong the symptoms and prolong death
its worth trying and staying on it even though you dont think its working
im glad ive been on it for 12 years and it may be one of the reasons im doing good

maximize your health
control blood pressure cholesterol diabetes weight and sleep issues
limit alcohol
treat any mental health issues
stay active physically mentally socially 
dont smoke

eat a mind diet

remember none of this stops the disease it only slows down the symptoms

i realize that even though im doing good now i will one day hit that drop off point that happens as the disease progresses
the fall will be sudden and rapid
i just hope its a few years away

aduhelm or aducanumab is available to get as monthly infusions
medicare or insurance don not pay for it
many neurologist dont give the infusions
they are usually received in a research study

do they help
we dont really know yet
we should know for sure in 2-5 years

most of the major alzheimers centers are doing the studies

it takes a commitment to do the studies

for me
if they help some its worth all the effort
but
i may go through 7 years in the study im in and find out later it doesnt really work

also
get all your legal paperwork done while the  patient is mentally competent
it may be hard to do if you wait too late

if you are the caregiver
you have to take care of yourself
seek help 
reach out to the local  alzheimers organizations like the local alzheimers association
they know what services are available for you
you are no good to the patient if you dont take care of yourself

so
thats what i would do

the organicgreen doctor