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Re: Intro / resources at harvard website


hi rayna

At 01:18 1998/12/31 -0500, you wrote, in part:
>Guess this is my night to de-lurk...

i love this term
[thanks, bill!]
and welcome to the list, rayna!

>Long story short -- my husband (70 shortly/ I just turned 57)
>was diagnosed one week ago today with PD.

yikes, talk about a newbie!

>He's had a resting tremor for almost a year,
>which I strongly suspected was PD but until
>it got worse, about a month ago, he made excuses
>for it.  Finally got him to a movement disorder
>specialist and voila!  Started him on low dose of
>sinemet only because my husband insisted.

aha
i think i detect some denial here
[did you know that denile is a river in egypt?]
the diagnosis must be a shock to both of you

i will send an article [psychosocial]
separately to you in re coping with a diagnosis of pd
i think its approach
is one of the most helpful and encouraging i've seen

>Doctor told him to make sure he didn't eat anything
>with lecithin in it -- and now I hear Phil talk about
>a low protein diet enabling the sinemet to work better.
>Can you elucidate?

in simple terms
[or should i say goofy]

the levodopa in sinemet
is absorbed in the upper intestine into the bloodstream,
whereby it gets transported [by commuter bus] to the brain
and across the bloodbrain barrier to where it does its work

the carbidopa in the sinemet
keeps the levodopa from breaking down
[and causing nausea] before reaching the brain

the problem is
that the commuter bus
has a limited number of seats
and protein is real pushy about grabbing them all
viz:

if i take sinemet 15 to 20 minutes before eating protein
the protein gets left behind in a cloud of exhaust fumes
and the levodopa reaches my brain no problemmo

interestingly
if i take sinemet with a sweet sugary beverage
its effect seems to 'kick-in' faster
[insulin and dopamine seem to use the same bus station]

if i eat any protein shortly before taking sinemet
the sinemet has no effect on me at all
big problemmo

if i eat a large amount of protein/fat [= bacon/cheeseburger!]
any sinemet that i may take in the following 2-3 hour period
is effectively ineffectual

however,
i take sinemet every 90 minutes or so because i need to -
my pd symptoms 'show through' otherwise
and that's because i am 10 years
further down this road
than your husband

he probably won't notice this 'on/off' phenomenon
and the connection to proteins and fats for many years
i didn't for at least five years after starting sinemet

his biggest problem right now
is probably going to be dealing with nausea caused by the sinemet

so in a newbie's case
the advice is virtually opposite to what i've just described

a newly sinemetized parkie
needs to eat something with the sinemet to avoid nausea
and it will take time to accomplish this

during my first months on sinemet
if i took a tablet on an empty stomach
i would develop virtually instant ulcer-like pains
which would dissipate as soon as i ate 'something, anything!'

>or tell me where to find more info on this?

the neuro website at harvard is an excellent resource:
<>

the pshychosocial article is there
along with an algorithm on managing pd
and some excerpts from the young parkinson's handbook
and a caregiver's handbook

>Thanks -- .    You sound like a very special
>group of people on this list!

we are
and now you are too!

with much love

from your and your husband's cyber sibling

janet

janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada
janet313@xxxxxxxxxxx


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