hi ivan

you wrote:
>Hello Janet,  here I am!...
>Would taking some "cr" at bedtime, added to your 10/100,
>extend your functioning time either during the night or early
>in the morning?

i have frequently used a half 25/100 cr tablet
to help me 'coast' through a meal

>Also , does the additional carbidopa in 25/100's
>(yellow round pills) help you?  I do better on 25/100's - more
>time "on" and a better quality of functioning than with the 10/100's.

i used to take a combination of 10/100 and 25/100 to get a total
minimum of 75mg carbidopa per day - didn't notice any difference

>>as a result of an analysis done with a view to
>>maintaining thin but almost continuous levodopa coverage
>By "thin" could you mean just barely "on"....

i guess i could have been clearer...

prior to the 90 minute regimen
i was taking either a whole 10/100 or a whole 25/100 sinemet
every two and a quarter hours = 135 minutes
[the timing was determined by yet more
observation and record keeping]

the time frame was selected as maintaining me optimally
somewhere between 'off' = akinesia/bradykinesia
and 'on-too-much' = dyskinesia

after a couple of years on the 135 minute regimen
i started developing peak dose dyskinesia
and rapid end-of-dose drop-off

cutting the dose in half but increasing the dose frequency
was a really effective way for me to smooth out
those peaks and valleys

>...I almost never have a dyskinesia problem now.
>It tends to crop up only if my diet is too sugary,

say what?
is there such a thing?
i thought all parkies were addicted to sweets?

>or if the tolcapone/sinemet combination hits me too hard.
>my sinemet is down from 1500 to 900 mg./24 hours.

this is wonderful news!

>>i found new medical consultants and established new prescriptions
>That must have been hard to do-all those familiar Bermudan faces gone

don't forget the lack of services there -
no support groups, no neurologists, not that many 'bermudian faces' to miss

>all these new Canadian faces to learn how to work with!!

so far, i've dealt with a family physician, a neurologist and a pharmacist
and all i can say is:  i love this country!

e.g. 1. the ontario heath insurance plan card
provides virtually free medical care

e.g. 2. the social services drug card
provides prescriptions at 2.00 [cdn] each

e.g. 3. i am [optimistically] awaiting approval
for ontario family benefits disability insurance payments

>One wonders if one is making the right choice when one
>engages a new person, a new doctor, a  new pharmacist.

i suppose so
but i relied on my sister's input
based on her 20 year residency here

>This wonderment,  in me,  can turn to uncertainty, and that
>can turn to angst.  OR, if patient enough, this same wonderment
>can turn to encouragement. and that can turn into a genuinely
>elevated mood,  once I gain enough experience to bravely work
>with the new people.

exactly -
you can switch perception 'lenses' and look at the problem
either as a challenge
or as a burden

>I am thrilled that you are brave enough
>to keep trying to be independent.

i don't call it brave; i call it stubborn!
however, i am lucky, in that when my meds 'kick in',
most people, including myself, can forget that i have parkinson's

>...I feel that if you are being troubled by those
>sticky parkie feet,  you may be under new stresses,
>and you also may be slightly undermedicated.

you and a few others have mentioned 'undermedication'
and i do believe that that is what's been happening...

i had another message from one of the
apo generic - 'no'
endo generic - 'yes'
respondees who said that
between 10 and 20% more of the apo generic
was required to maintain the same level of mobility

i've been trying that, and so far, so good!
i am scheduled to start the endo generic on monday.

>I use generic carbi-levo.  It is less successful when I am
>stressed, and also, it is light-sensitive, so be careful
>not to leave it exposed to light.

who is the manufacturer of the carbi-levo you are using?

>... Dear sis, you just moved from Bermuda,
>and surely the radical changes continue to present
>challenges throughout your daily routine. N'est-ce pas?

the stresses that i have been through
and still are adjusting to
are no big deal
compared to the rollercoaster that has been my life for the past 8 years
losses including friends, a marriage, a business, personal bankruptcy...

i'm not whining for sympathy,
but simply putting a little perspective on the current picture
heck, right now i'm the least stressed/anxious than i've been for five years!

>... I guess we all have to find WHAT WORKS  for  each of us.

absolutely!
also, i find that sharing the nitty gritty details
helps me put my own situation into perspective

>>my list of unreturned messages is getting long enough
>>to give me nightmares
>OY!  Oy yoy yoy!!  I hereby give you permission to delete
>more messages, and respond to fewer. We all go through
>periods where working on the computer has to be put aside
>for a while, or where it recedes in importance.

now that i feel like i have a 'handle' on what's been happening
i no longer perceive the list of unreturned messages
as a nightmare burden of un-met obligations;
it has suddenly been transformed into
simply a list of messages
from friends

funny how that happens, huh?

>...be very careful of financial stress factors here

it is to laugh, ivan!

my financial stress factors in the past 2 years have been horrendous
but now that i've cleared away a pile of that good old toxic shame
being broke doesn't bother me at all!

money isn't the root of all evil
the love/lust for money/power can be

the old truism 'you can't take it with you'
has finally sunk into this little pea-brain of mine

>...Tolcapone is a wonderful drug for me.  It takes time.
> After two months, I am finally getting the hang of it....

i am happy for you!

>are the local tulips budding yet?

you bet!
i have a tree-filled view
which was utterly ravaged by the ice-storm in january
but now
each new day
brings a new set of leaves
and a new song from the returning birds

thanks, bro!

much love to you and yours

janet

janet paterson
51/10 - sinemet/selegiline/prozac
almonte/ontario/canada - [log in to unmask]