i get questions about alzheimers frequently after posting the
alzheimers news segment each week
from emails
from facebook messages
after doing my talks on alzheimers disease
in fact
my favorite talk i do
is to simply stand up and answer questions from the audience
families and patients and friends just want answers
many cant get them by reading the internet and asking their
medical providers
i have been through this with two family members
granted i wasnt there for the day to day caregiving that
is so trying on families
i have spent hours and hours over the last 6 years reading
about alzheimers so i have become well versed in
alzheimers and with what research is going on
now
that i know i truly have alzheimers disease
i can now truly speak as someone who has the disease
albeit very very early in the process
but
i know that it can suddenly take off
and proceed rapidly
so
thats why my day to day decisions are based on what could happen
i may be lucky
in that this aducanumab might be the reprieve im looking for
the next 5 years will tell if it really works as advertised
after last fridays blog
i got tons of comments and questions
i was asked and this is a frequent one
what can a loved one do if their affected loved one is more advanced
eg
one person wanted to know if their spouse would qualify for
this study
i asked questions about the spouses health
it was obvious from the answers and the persons medicines
that they were more advanced
i try to be honest with my answers
because i feel like thats what people really want and i would want
i told the asker
no they wont qualify they are too advanced
there really is not anything to do to stop it
my advice is to maximize their health
keep them as mentally physically and socially active as long
as possible
provide love and comfort
and
take care of yourself the caregiver
thats the one that most spouses or kids forget
i was asked several times where and how to get the amyvid pet scans
my reply
they are available at multiple sites in texas
probably most states do them
they are not paid for by insurance companies
they cost between $3500-$5000
i got mine free via the study
here is a link to my blog about how to get one free
if you meet the criteria
http://www.organicgreendoctor.com/2017/03/alzheimers-news-good-ideas.html
not everyone with memory loss needs these
i consider them the icing on the cake test
a memory loss patient should see their primary care provider
or a neurologist for a stepwise complete workup
like
a good medical history and physical looking for causes
basic screening labs
good memory testing
maybe an mri of the brain
most folks can stop there and not need more information
eg
my two brothers got all this done
their diagnoses were able to be made from this workup
an amyvid pet scan would have been a waste of time and money
my mom fell and hit her head and had a ct scan which showed
diffuse shrinkage of the brain
this is caused usually by alzheimers disease
but in cases like mine since i was so early
i had
the genetic tests
note i will write more on those tomorrow on my blog
the spinal tap for the biomarkers amyloid and tau
are helpful in making sure of my diagnosis
then
like i wrote above
the amyvid pet scan was the icing on the cake
now i certainly know
what i have
what will happen if i dont do something
since i have personally seen what happens
another question is
where can i get tested or where can i get involved with research
all primary care providers can do this testing
if they are not interested seek out a local neurologist or memory care center
like the one i go to
if i was still in practice i would do these workups myself
since i now know more about how to do it now and how to interpret them
if you are interested in being in research
or
if you are interested in being followed on a regular basis like annually
to be closely monitored
in texas
the tarcc group at this link
http://www.txalzresearch.org/volunteer-for-alzheimers-research/
they will start seeing you at 50 years old
even if you have no symptoms
they will do a neurological exam memory testing baseline labs and maybe
an mri
your data is kept in research and should not reach your medical record
why
read my blog tomorrow
for someone who has a family history and is worried about getting it
this is a good thorough way to do it
at no cost to you
anonymously from the medical records usually
other states may have similar programs at most of their
universities memory centers or alzheimers disease centers
for the study i am in
go to
clinicaltrials.gov
type in aducanumab
then type on the studies they are recruiting for
find the nearest location
note this list is not complete
it doesnt have the ut southwestern site listed
here is biogens site about the aducanumab study
https://www.engageandemerge.com/
so remember
if you are worried get evaluated
if you have a family history or want to be monitored do the
monitoring as above
if you want to contribute
volunteer for a study and or donate to the local alzheimers groups
the biggest obstacle to getting alzheimers research done is
money and volunteers
if you are a caretaker
take care of yourself
always feel free to ask me questions on this blog
i screen the questions and post them and my replies
i will answer messages via facebook
i answer lots of questions at my alzheimers talks
my next presentation is at
the 5th annual alzheimers symposium
mayborn convention center
temple texas
friday april 28 2017
i will do my talk that day
then
answer questions after the talk from the audience
then
i will hang around for awhile if folks want to ask
me questions one on one
the organicgreen doctor
