well, the 1 1/2 hour appt turned into 4 hours and the conclusion was.........
they dont know.

at least the definate "parkinsons disease" dxd didnt come. they gave me the good old "extremely atypical idiopathic possibly non progressive maybe post-encephalitic strange form of pdism." being somewhat overdramatic here with the concensis but in essense thats where we left it.

they saw me off meds, and my reaction to stalevo as it was absorbed then finally on med-- stalevo. they watched me walk, do all the gymnastics they put you through, tapped me everywhere they usually do and we talked through-out, they heard my side of not believing it to be pd, i heard their side of what they meant by pdism. the doc actually contributed her opinion of using the "ism" for a dxd.. she hates using it. "its old termanology that should not be used any longer." that was very much agreed upon. i talked to her from my side of the fence and she listened. finally i let out the tears of frustration that have laid behind a 26 year wall that had been built between the patient/doctor relationship. and once i started, it was hard to stop.

by the end of the appt (at 7:00 pm after everyone else had left the building) me, the doc, the head doc and my friend taking notes and asking her own questions; were all brain-fried (pardon the pun) but we had reached a level of mutual respect. the masks came off and it was no longer a relationship between doctor/patient, but rather person to person. both sides gained insight to this horrid thing too long called "pd" so we left it at this:

i need extensive onsite evaluation. this would require me being able to be available for multiple visits at a same location. i will need to be open for neuropsych evals as well as conversion disorder evals. they in turn will no longer label me with pd. in the interum, i will have a neurological disorder. until i am able to get to that, i will continue with stalevo, artane, clonazapan and celexa, dropping flexerall and mirapex.

i think i got what i needed out of the visit. i will begin this later down the road. my mother has 3-6 months to live. my focus needs to be with her.

thats all for now folks