Re: Shoulder Shrugging

[rayilynlee <rayilynlee@xxxxxxx>]

Scott, my first neuro told me he felt 50/50 about selegiline.  Another was
kind of like yours who said "do you want this or try this" but I submit that
it is worse to have a neuro who orders you around and wants you to take
drugs that don't help

I think I've said many times that Sinemet was like a miracle on the very
first dose, but never again although I took it for a year.  After DBSs I
tried it and Comtan again, still no help with dyskinesias this time, so I
don't take any PD meds..I know they really help most PWP, but I feel I am
better off without them and think the DBS helped more than anything.
Tremors are very hard to treat.

This is a very strange disease and not well understood, Ray
----- Original Message -----
From: "Scott E. Antes" <Scott.Antes@xxxxxxx>
To: <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sent: Tuesday, November 01, 2005 7:27 AM
Subject: Re: Shoulder Shrugging


> Thanks, Dee.
>
> Laureen can move her shoulders just fine when *not* on meds.  The meds
> (Sinemet) seem to stiffen her up rather than help with mobility.  It
> wasn't
> always that way, but she has been on Sinemet for at least eight years now.
> Interestingly, it's not just Sinemet.  When she takes highly-concentrated
> vegetable extracts, she gets the same reaction as with Sinemet,
> symptom-wise.
> What she doesn't want to do is take one more drug of any kind.
>
> What amazes me with PD are the doctors' reactions to it.  One neurologist
> wrote Laureen about half a dozen prescriptions on visit.  It was like,
> "Want
> to try this?  Here, I'll write you a prescription.  How about this one?
> Here's a prescription.  And another.  And another.  And one more.
> Experiment
> on yourself and see me in a year or so."
>
> A few years back we made contact with a shaman in Ecuador who told us he
> would
> have Laureen "dancing like a ballerina" (I know, amazing that he knew what
> a
> ballerina was).  I told a big-name PD neurologist about it, and he
> encouraged
> us to try the treatment--and if the herbs worked, to bring him some so
> that he
> could have them analyzed for the active ingredient.  While I was impressed
> at
> his apparent open-mindedness, it was another example of how much is *not*
> known about treating PD.  Anyway, we never did go to Ecuador.  Too much
> shamanic competition going on....
>
> Scott
>
> > ===== Original Message From "Parkinson's Information Exchange Network"
> <PARKINSN@xxxxxxxxxxxxxxxxxxxx> =====
> > Good morning Scott,
> > ...In answer to your question about shoulder shrugging, I don't have that
> > problem myself....
> > ...It does seem strange that your wife would have difficulty shrugging her
> > shoulders when her Sinemet is working.  That is when we  should be at our
> most
> > flexible and pain free.  I do recall having read  articles about Levadopa
> related
> > dystonia.  In those cases, I  believe the recommendation was to reduce the
> > Sinemet dosage to see if it  relieves the dystonia without aggravating the
> > Parkinson's symptoms.  If  that doesn't work, it is suggested that adding
> > Amantadine might help.   Check with your doctor if you suspect that there
> > is
> a
> > connection here and do  some research on the subject before doing any
> alteration to
> > the drug  dosage.
> >
> > Happy Halloween!
> >
> > Dee
> >
> > ----------------------------------------------------------------------
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>
> Scott E. Antes
> Department of Anthropology
> Northern Arizona University
> Flagstaff, AZ 86011-5200
>
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