Re: Atypical PD?/Dystonia and PD

[Charlotte A Mancuso <mancann@xxxxxxxxxxxxx>]

Ray and others,

Can you tell me more about Dystonia and PD and/or DRD--Dopamine Responsive 
Dystonia? I'd be very interested in hearing from others with PD and dystonia.

I have PD symptoms with intention tremor rather than resting tremor, and have 
dystonia as well, which is one of my biggest problems along with slowness, some 
shuffling, rigidity, and lack of dexterity-balance is really good. I take 
Baclofen for the dystonia, which helps quite a bit, and I take Sinemet, which 
has never given me that big bang either--takes a long time to work and doesn't 
work for very long, but I do need it. I've given up agonists--and in some ways 
I'm better off for it and worse off in other ways.

I'm really frustrated with Drs. as well. What would I do without this list!

Thanks much,

Charlotte Mancuso


Rayilyn Brown <RayilynLee@xxxxxxx> wrote:
Judith,

PD meds don't seem to help me either. I've just had bilateral DBS brain
surgery in subthalmus nucleus and it really helps tremor, but other things are
atypically worse, like walking and speaking

I don't have DRD (Dopamine Responsive Dystonia)(DBS is now done on the globus
pallidus "sp"?for dystonia) and was only "ON" the first time I took
Sinemet. Told my neuro I have never gotten the "Big Bang" out of meds like most
people do. she conceded I was a "weird duck", but believes I do have PD as I
have every syjmptom except facial mask and and PET scan which supports the
diagnosis of idiopathic PD. Am going for another programming hopefully next 
week.
She even asked me what I thought I had. It is very discouraging.

Ray

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