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My name is John.   I was diagnosed with PD in 2008 at age of 50.  I've been following this listserv since then but have had little to contribute.  I have been fighting the fight, best I could with exercise, diet and minimal medication.  I have been able to continue working as a teacher, although it is getting harder; on feet all day - great; paperwork at computer all evenings and weekends - killing me.



Alas, about 18 months ago I switched to a different neuro and started the Sinemet/Stalevo drill, which completely relieved my symptoms. As required dosing times have now dropped to about 2 1/2 hrs,however,  my neuro has informed me "that it is time for DBS."    Since I've only seen this neuro 4 times ( for a total of about 30 minutes) , the neuro has never seen me "off" and doesn't have time to discuss options, I feel that I need a 2nd opinion and possibly a new neuro.

Therefore, I am reaching out to the listserv for advice.  

1) I would especially appreciate recommendations for neuro in Buffalo,NY area .

2) Also thoughts, experiences on how to find best place for DBS in the region (Buffalo, Rochester, Cleveland, Toronto). 

Ray, I remember that you and quite a few other list members have mentioned loss of your voice as a major negative consequence to your DBS.  Since I am a teacher, I have resisted the idea of DBS in the past because of this. Furthermore, I would have to take extended leave this year; since I am in a system that does not grant tenure, I sense that taking leave would mean no contract renewal.  

I was hoping that DBS would buy me a few more years at teaching.  My family is suggesting that that opportunity is gone, that I need to focus all my efforts on my health as I prepare for the long, arduous fight ahead.   They suggest that I go on leave, file for disability, get the DBS and use the time it buys me to focus on exercise and nutrition;  they suggest that DBS only buys me a few years and it makes sense to concentrate on exercise, nutrition and family while I can.   Any thoughts ?

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