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hi lucy

i'm sure you will receive a lot of good advice
in re your father's health care
i couldn't possibly venture an opinion about
the secrets of the american health care system

one thing jumps out at me from your post:
what a 'roller-coaster ride' of medications your father has been on!

the more i learn about
our amazing brains and our amazing brain chemistry
the more i lean towards extreme caution

call me a coward
but i harbour a lot of concern and procrastination
about making any change to my 'chemical stew';
i'm still mulling about the hormone issue

i've been taking sinemet and eldepryl for nine years
and an anti-depressant for six years
the ingredients haven't changed at all
the quantities have been adjusted occasionally

maybe i've been unusually lucky
the progression of pd in me has been slow and steady
no unwelcome surprises
nothing unexpected

i consciously and actively decided
not to add one of the 'old' dopamine agonists to my regimen
due to the complications involved in fine tuning two meds
in conjunction with each other rather than just one
and also due to the potential for side effects

i also was aware that there were three 'new' ones in the pipeline
and felt comfortable about waiting another year or two
until the 'dust settles' around them

your dad's situation reminds me
of the old story of the wobbly table
with four legs being adjusted and adjusted and adjusted ...

at the moment,
and from my non-medico, lay-parkie point of view,
it sounds to me like his pd is being critically undertreated:

>His on-time is next to none; he literally falls
>on the floor and can't get up.

in re the hallucination/psychotic aspects, whew!!
sinemet
eldepryl
permax
elavil
risperidol
gabapentin
amantadine
what a barrage of chemicals his brain has been subjected to
in a relatively short period of time!

looking at his situation from the point of view of
"when was he in the best shape, and what was he taking then?"

if he was relatively stable and mobile for two years
on his original schedule
would it not be worth trying resuming that 'recipe'
to see if his condition reverts to what it was?

if, on the original schedule, he was starting to develop

>some mild hallucinations and paranoia over the past 6-8 months
>but nothing extreme, and usually only at night

[which may have been a not unexpected long term reaction
to levodopa therapy especially in more elderly people]
then possibly the stress of your mother's illness
as well as the inadvertant increase in sinemet
were enough to 'put him over the top'
chemically speaking

in re "the neurologist vs the psychiatrist game"
that seems to be being played at your father's expense,
i have to echo camilla's comment re being assertive

if someone's health is on the line [and there but for grace, ...]
i think the old confrontational stance might be apropos:
"my way, or the highway!"


with love to my parkie bro and to you

janet