NeuroTalk Support Groups - Parkinson's caregiver with lots of concerns

Hello, my wife, Sue, was diagnosed with Parkinson's in 2003, although we agree she had several symptoms earlier. Her original complaint was 'toe curl' which happened while she was walking (very fast, 4 or 5 miles per day.) When no podiatrist could figure out what was happening we kept going to docs until we got this diagnosis. It seemed to fit, with some right arm tremor and small handwriting.

For about 7 years, Sinemet seemed to take care of everything, but about 2 years ago a neurologist prescribed an epilepsy drug for her migraines. This started a series of terrible side effects: heart problems, low BP plus high pulse, and some skipped beats. Off to a cardiologist for a number of tests, and more and different drugs, none of which seemed to do anything but make the PD (Parkinson's) symptoms worse. We've since tried comtan, mirapex, others, and most recently Neupro patches. None of them have eased the PD hell, and most caused more side effects - prominent among them - anxiety attacks, shortness of breath, difficulty swallowing, and weakness or numbness in the legs and arms. We have recently gone to see a new neurologist, specializing in PD and movement disorders, and have been changed to 50/200 Sinemet ER, but have not yet been able to get it (promised tomorrow by the pharmacy).

Anyway, would like to hear from other PD patients regarding any of these issues, especially if 50/200 Sinemet ER might actually be of help. Also would like to hear of DBS successes and/or failures.

Thanks for staying with this long read! Look forward to some good discussions.

John, husband of Sue