another neurology appointment, video, study

ANOTHER NEUROLOGY APPOINTMENT
well its time again
have to go back for my 6 month follow up with the neurologist
this visit i dont mind
its usually in and out
how you doing
tap tap on the knee
refill the prescription
see you in 6 months

its been 15 months since ive been officially diagnosed with
mild cognitive impairment amnestic type
thought to be possibly due to alzheimers disease
only time will tell for sure if thats accurate

during that 15 months i may have noticed a subltle change but on
all those neuropsychological tests ive had over that time period
there has been no significant changes
thats like a cancer patient getting a negative pet scan
its reassuring

but as i know this can remain stable for awhile then take off
like it has with my younger brother
he sure has progressed during these last 15 months
he has gone from driving himself to now not driving himself
not getting himself dressed and requiring 24/7  monitoring
i think about him a lot and wonder if ill be like him and when
the decline will happen

but i have to continue to move forward and accept the fact that
i really dont know what will happen
only time will tell

i am doing all the things you and someone like me needs to do to
prevent or slow down the disease
exercise, control blood pressure,control lipids, maintain my weight,
stay mentally active, socialize, and take my dam donepezil (aricept)

am afraid to stop it because i know it could be the one thing that is
slowing this disease down for awhile before it eventually takes off
if i stop it i could see a more rapid decline in my status
so i plan to continue it despite the side effects
at least its now a cheap generic

i and my wife she are trying to get things done now in this early time
as we dont know what will happen
we have a lot of travel plans and this is the year we are getting all our
financial and legal ducks in a row
we have paid off our house and our cars and this next month
we should be totally debt free
maybe ill call the dave ramsey show so i can scream were debt free
on his radio show

we enjoy each other more now than we ever have before
and know to savour each day as it happens

ive continued doing this blog and spend a few hours on it everyday
i also walk 3-4 miles a day and have taken up hiking trails in this area
sorry ive missed some of the beauty around here over the last 10 years

ive also started a habitat for humanity project that i plan to follow
through to completion
ok so im going to learn some skills i can apply to the redo of my old barn

i will start tomorrow delivering meals on wheels in this area
this is something ive wanted to do
my mother always looked forward to those meals and those
brief interactions with the person that delivered the meal

i have tried to read a real paper newspaper a day and read several
online news websites every day
i also read a book every day if possible
ok my stack is kinda high in my to read stack
havent made the kindle transformation yet
like the feel of a book and love to dog ear those pages
but know i will eventually have to give in and use one

i stay busy maintaining my 10 acres here at the country n and
my organic garden
i will never get all this stuff done that needs to be done here
but its fun trying

so hope in the next 15 months that things will not progress any
that will be good news for my wife she and i

stay tuned

VIDEO
today after my neurology appointment i will be interviewed for a
possible short video that will be posted on the alzheimers research centers
website at ut southwestern medical center
they have plans to update the website so it will be more useful for patients
families and medical providers
am glad to get to be a part of it
will post the website when its done

ADNI-2 STUDY
if you follow this blog you know that i am in the
alzhiemers disease neuroimaging initiative-phase 2 study at the
alzheimers research study in dallas at the ut southwestern medical center
its a five year study thats an extension of phase 1
its probably the most important research study on alzheimers that has
ever been done
it will define how patients will be evaluated in the future and will trigger
some of the research that will eventually lead to the treatment prevention and
possible cure of this diseaese

in april i will have my 1 year follow up visit
i will have blood work, mri scan of the brain, a neuropsychological exam
(i call it the torture test) then will get to go to annual visits after that
no spinal tap or pet scans until april of next year

when i take the neuropsychological exam i know when i take it exactly
whether i have improved or not
they dont have to tell me the results because i already know
so in october i had not changed and hopefully in april the test will
show the same

the organicgreen doctor

recheck, interview, mri, more, almost

RECHECK
today is recheck day with the neurologist i see in dallas
its been 8 months since i started the aricept (donepezil)
i have done ok on this medication except for problems
with sleep
i wake up too early but besides that i am having no significant
side effect to the medication

is the medication working
i dont know but i havent gotten worse in the last 8 months
so if this is alzhiemers disease causing my problems then
the symptoms appear not to have progressed in the last 8 months

(remember aricept (donepezil) doesnt slow the alzhiemers disease
process it only slows the symptoms from the disease and it will
eventually quit working)

only time will tell for sure

INTERVIEW
today i get interviewed about my diagnosis and how i am
approaching this
they want to know about my blogging on this and my desire
to educate people about this disease and how this is all
affecting my wife she and me
the interview will be for the newsletter from the
alzheimers research center
if its available on the internet ill post the link when its available

i also may have an interview in the future with one of the local
tv station this month or next month
will post the link for that when its available also

MRI
didnt think i would get the results of this mri last week but i did
get the report so i can post it
this is the third one i have had in the last 8 months
this mri was normal as were the last 2 that i had done
thats better than abnormal
an mri usually will not be abnormal this early in alzhiemers disease

one of the things they are looking for in this study in a change in
volume of the hippocampus on the undersurface of the brain that
can occur early on in mild cognitive impairment amnestic type due
to alzheimers disease

will have more mris in the future as part of the adni-2 study that
im in over the next 5 years

more as it happens

MORE
this thursday i have to undergo a 8 hour neuropsychological exam
that is being required by the disability insurance company that was
suppose to start paying me in april of this year
(its not only health insurance companies that suck)

even though i have had at least 2 good neuropsychological exams
done in the last year by a reputable institution (university of texas
medical school alzheimers research center) that show i have
short term memory loss
and im seeing a board certified neurologist for this problem and
am on medicine (aricept-donepezil) to slow the disease
symptoms down
they still want an independent neuropsychological exam done

at least the person im seeing is a reputable well liked
neuropsychologist here in austin

will report the experience later
the 3-4 hour exams i had were torture so this 8 hour test will probably
fry my brain
may have to increase my aricept on friday

ALMOST
well we almost have had rain here the last several days
we finally did not have a 100 degree day
the rain gods though are messing with us
they are teasing us with the clouds and the storms just north of us

guess they want us to suffer a little longer
guess since i added underground lines connecting all of my
tanks together that now it wont rain so i can see if they work
or see if they are leaking

its like when if you finally wash your car then it will rain
or if you hang out clothes then it will rain or
if you leave your car windows down to keep the car cool
then it will rain

think its because i did all the work to my rainwater tanks
that the rain gods dont want it to rain

the organicgreen doctor

watson wows, dre day, neuro appt

WATSON WOWS
that watson is good
wow hes so far ahead that the humans wont be able to
catch up if even they combine their scores
watson did miss the final question but only waged a few dollars
so did not lose much

watson has over $30,000 in winnings so far
the two humans look defeated already
they seem to know many of the answers but just could not
punch the button in time

doubt they can catch him today
wonder what watson will do with his money and the
$1,000,000 prize
maybe split it three ways

DRE DAY
today is dre day ie digital rectal exam day
finally broke down and decided to have it done

the last two were done under anesthesia while having a
colonoscopy      now thats cheating right

have already had a psa (prostate specific antigen) which can be
elevated in prostate cancer
mine have always been normal

its recommended that males have an annual dre and psa done over
the age of 40, 50, or 60 (based on who you read)
race and family history alters this recommendation some

these are the only screening tests we have for prostate cancer

until something new comes available then thats what we have
to use to screen for prostate cancer

if you are male and are 50 years or older you need to get
these two done annually
dont whine as women put up this with type of stuff for years
and dont complain

its the least you can do for them

get er done

NEUROLOGY APPOINTMENT
uneventful event
no change in medication
the research study is 3 months behind so will have to wait until
then to get the other tests i need to have done
will wait for the study so i wont have to get more than 1 spinal tap
that sounds reasonable doesnt it

the spinal tap results will confirm what is already expected in my
diagnosis as the diagnosis is usually made from the
neuropsychological evlauation and on the medical history and
the family history
the spinal fluid is analyzed for two proteins called amyloid protein
and tau protein which are at abnormal levels in the spinal fluid of
people with alzheimers even real early like mine

this will soon be the test that will be added to the others that
people have done in their evaluation for alzheimers
its not readily available yet will it will soon be part of the
standard testing done

it really doesnt alter the treatment plan but just makes the
diagnosis more definite and can be helpful in cases like mine
where the symptoms are so early

the organicgreen doctor