What a relief! Only 1 year ago I was seriously considering DBS as life seemed to be coming to a point that I could not face the day and keep up with my daily routine. I was finding the rigidness of my muscles along with the jerkiness was making it difficult and coming darn near to impossible to do the things people relied on me to do. And this scared me.

My life consisted of severe on and over-on, followed by off and way, way off. Although it wasn’t constant the unpredictable nature of the cycle made it difficult to go out without knowing if I was going to be able to safely return. My fear of the unknown status from hour to hour of my Parkinson’s was forcing me to accommodate my disease, something I had resisted for 20 years living with this beast.

I had tried the new drug Rytary with limited success but faced side effects that were uncomfortable and unpredictable. The ons and offs were sometimes too extreme, eating food and emotions were bringing poor efficiencies and I was increasingly worried about the path I appeared to be on.

And then I asked here for help and someone suggested Amantadine, someone else told me of a study on constipation and I added benztropine. That was 5 months ago or better and here are the results.

Constipation: gone! I eat a bowl of granola and a little grapenuts, sprinkled with blueberries, raspberries and blackberries, followed by one banana in some 2% milk and I have 4 to 5 good solid bowel movements a week.

Ons and Offs-With the addition of the Amantadine these have become much smoother. Offs are limiting my normal symptoms to maybe 20% less than normal but this is easily accommodated. And ons are sometimes a bit hard but not near as difficult as they were prior. I function well enough to go to the office 4 days a week for three or four hours, go to lunch or dinner or even ride with someone else to an appointment. And almost no tremor!

All this and only one major drawback so far. Memory! I am losing memory. We have tried several things and continue to experiment. I will keep you posted. Let me know if you have any ideas.

Jim