Donna -
Bless your heart (and your Dad's), you've been through a rough time, and
aren't out of the woods yet. You wrote:
>SO becuase he was walking slow (which he wasn't really doing last week
>but of couse for the Dr - thats how he was walking) ... he wants to INCREASE
>his sinemet (he couldn't tolerate it last spring which was why it was CUT !)
>
>ITS THE SINEMET - STUPID ... sorry - but everyone says how nasty this drug
is
>why not get him off it - or lower it or keep him on this low dose.
Increasing
>it is
>only going to make him MORE miserable -and more depressed !
Bear in mind I'm not an MD, just a caregiver with almost 16 years'
experience, so you're free to ignore what I'm about to say, or take it for
what it's worth. BUT, in my opinion, your neuro doesn't have a CLUE! If
he's not a movement disorder specialist, being a neuro doesn't mean he knows
BEANS about PD. It MAY just mean he's too proud to admit it! In addition,
what I'm hearing you say is that HE'S not LISTENING to you!
You DO NOT have to do what the doctor orders in terms of increasing the
Sinemet. I hope your GP will win this battle, because it seems to me he's
more willing to work with you and consider the possibilities. The heirarchy
of doctors being what it is, it's possible the GP will give in to the opinion
of the neuro. If he does, you have the right and maybe even the obligation
to tell the GP (maybe before he talks to the neuro, even, so he doesn't get
himself caught between a rock and a hard place) that you WILL NOT increase
your Dad's Sinemet. And then you can maybe share some of the positive
Mirapex posts from the list with him to see if he'll prescribe it for your
Dad. If neither doctor will work with you on this, you have the right to
find another doctor, and in fact go doctor shopping until you find one who
CARES!
Here's another non-medical opinion for you: If your Dad's moving slowly, it
probably does mean at that point in time that he's undernedicated. It could
have been from the stress of the doctor's appointment. But if he can't
tolerate the Sinemet, IT WON'T HELP! That's why Mirapex sounds like a good
option to me. It was a lifesaver for Dick (52/15), who also couldn't
tolerate much Sinemet, and didn't get any benefit from Permax.
I want to say one other thing, which will bring the wrath of the AMA down on
my head: Our neuro, a well-known movement disorder specialist, says no one
knows the effects of the meds, 24 hours a day, like the patient and
caregiver. He believes in allowing his patients to adjust their meds as
needed - trusting us not to do something truly stupid, I suppose. The only
way we could have come up with anything halfway tolerable for Dick
(especially considering he sees the doctor only every 6 months) was by
experimenting. Only you, your family, and your Dad, can decide how
comfortable you are experimenting, but you DO have the option to try reducing
the Sinemet on your own. (I say, ducking and running for cover).
I challenge your neuro, and any other doctor who wants to play God with his
PD patients, to LIVE with one for a week and become primary caregiver!
Sorry this post was so long, but you hit one of my "hot" buttons. Please let
us know what you and/or the doctors decide to do. Warmly, Margie
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