my story revisited #187-things have changed some

MY STORY REVISITED #187-THINGS HAVE CHANGED SOME

thats me talking at the conference 8 years ago at texas state university
i talked for about 20 minutes then let folks asked me questions
mainly questions they couldnt get answers to
i like doing these q and a sessions better than just talking

a lot of what i recommended hasnt changed in 8 years
except
now we can diagnose alzheimers with more certainty 
and
we know better what to do to prevent it
and
now we have treatments that if they are started early may slow it down some
ie
my drug aduhelm or leqembi or soon donanemab

this week as i got my #34 infusion of aduhelm at ucla i talked a long time with the head neurologist of the study i am in and i also talked a lot with the nurse that day who cared for me

in one year i have decisions to make about my future care
i have asked for permission to access my final amyloid pet scan so i can have documentation of my amyloid plaque status in my brain
i may need that when i try to get treated again with an antiamyloid drug
my guess is that once the amyloid plaque reoccurs in my brain then i will need retreated
or
i might need to be on some type of maintenance dose each year

i am leaning towards using leqembi since it will probably be given as a self administered shot in the future so i can give it myself when the time comes

plus there are antitau tangle drugs being studied in clinical trials now that will probably be on the market in time to help me

plus a lot of work is being done using antiinflammatory drugs also since inflammation is a big issue after alzheimers starts
one drug is a multiple sclerosis drug that treats inflammation in those patients
it may be used in alzheimers eventually to treat the neuroinflammation
those are already fda approved and would be used off label

so i am on the edge of accessing this as i age
hopefully my disease doesnt kick in before that access happens

wish i could have discussed all of this with them that day 8 years age
__________

04-20-2015

LINKS END
last friday i think i could have answered questions from
the audience all afternoon
and
they would have kept on asking me questions 

here are some links i promised to post today

first
for the lady whose husband may be experiencing some
memory loss

here below is a link to a pamphlet in the form of a pdf file
there explains dementia and what workup and treatment
should be done for this disease

the texas dept of health came out with clinical guidelines
for evaluating and treating dementia and memory loss
click on the far right pdf file

also here is a brief summary of what will be put in the
algorithm for evaluation of a patient for memory loss
that will eventually be available to all the primary care
providers in the state
the gold standard to be followed for evaluation of memory
loss

the first thing you need to do is go to this link
21 question questionnaire
answer the questions about your husband
score the answers
this gives you a good idea of where his memory loss is
copy this form off
take the answered and scored form with you when you
and he go to the doctor
yes dont let him go by himself

also make a written list of what you and he have noticed
to give to the doctor

he should have a good thorough medical history taken
and a good examination
looking for causes of memory loss
like
old head trauma  excessive alcohol   depression   anxiety
stress   sleep disorders like sleep apnea or restless legs
medications side effects   drug abuse   poor controlled
blood pressure or cholesterol   lack of exercise
obesity   diabetes    family history etc

then a memory in office test is done
they may do
a minicog test-3 words are named then you are asked to
draw a clock and put the time on a clock then you are
asked to recall the 3 words
if you dont do well on this one the patient may be more advanced

most neurologist will do a standardized test
the best to use is the moca test
its more sensitive for picking up early memory loss
eg i didnt do well on this one at my first evaluation

if the score on this one isnt normal
the full neuropsychological test should be done
administered by a psychologist or neuropsychologist
its the gold standard of memory tests

then
labs
almost all neurologists do these
cbc   metabolic profile(electrolytes, kidney and liver function and
glucose levels)   tsh for thyroid function   b12 level   vitamin d level
others would add
folate   homocysteine level(elevated levels may be associated with
stroke heart attack and alzheimers disease)   lipid profile hiv
my b12  and vitamin d levels were low
my homocysteine level was elevated

then
a mri should be done to rule out explanations for memory loss
like stroke old head trauma tumors too much fluid in the brain
brain shrinkage etc

after this complete evaluation then your husband should know
why he has memory loss
and
then can be told what he can do to help

other things to consider if further workup is desired but they
are not usually covered by health insurance are
the beta amyloid scan amyvid that shows if he has the bad
stuff beta amyloid built up in the brain

spinal tap for beta amyloid and tau proteins
these protein levels are abnormal in alzheimers disease

hope this is useful
anything less than this for workup of memory loss is
not acceptable

also
for the others who asked
if you go on your computers
not on your smartphone
go to my blog
at the top are links to
a video my wife she and i did for the
alzheimers center
a newspaper article form the austin american statesman
a newsletter from the alzheimers center at ut southwestern dallas

thanks for attending the dementia and aging conference
and
for asking such good questions
__________
now most of those tests are being done when a workup for memory loss is done
soon a blood test will be done before an amyloid pet scan is done or a spinal tap which no one likes to have done
this blood test will be fairly accurate
if its negative you are unlikely to have alzheimers disease
if its positive you probably do but an amyloid pet scan or spinal tap for amyloid and tau will solidify the diagnosis

then treatment will be offered
maintain a healthy lifestyle as i have mentioned multiple times in the past
also get started on aricept or donepezil
consider taking one of the antiamyloid drugs 
right now leqembi and aduhelm are approved
i know i would have had they been available in 2010 when i was diagnosed

so we have made progress in the last 8 years



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