Thanks Pat. I wish you well with your DBS journey. Your response is very helpful. I was so hesitant to post anything negative on DBS because it can be scary for those considering it and I am a believer- I've seen others with amazing results. I would not want someone to not have the surgery because of negative comments. Just feeling alone. I knew it would not be a cure but I did not expect to get worse. My tremors were not too bad. doc is now saying it is the parkinsons- not the surgery. Just seems odd to me that ,my Parkinsons became so bad so quickly. In my heart I feel like it;s not that.Does not make sense to me that I was responding to levadopa- 4 a day- no tremors. little freezing, ok balance- walking and driving. and now this. I have not gotten involved with self-programming. I know I have to be patient. This diagnosis has really woken me up- I want to get out an live my life- now it;s hard for me.I know there is always hope. I just get scared. It's so upsetting when I read posts where folks had miraculous results ( and I am happy for them- I really am!!!) I was just hoping to get my life back. I guess there are some things I was not expecting and some things I do not understand.Life was better before DBS. Wishing I knew which direction to fight this. I want to live and sometimes I feel like doc's want me to accept that I have Parkinson's and be alright with sitting around all day doing nothing. Thank you for your response and the support of the team.
Best of luck to you. I will keep positive thoughts for your progress. We CAN do this!!

I think such a key part of this was feeling alone.I think part of me was scared to ask certain questions for fear of the answers. It gives me hope when I hear from others. Sometimes hearing the positive inspires me and sometimes hearing the more negative makes me feel I am not alone when I am having those moments. I am finding that folks in the group have better suggestions than my doctor. All I want is direction and the tools to keep things moving in a positive direction.Thanks to all for allowing me to not feel so all alone.

I agree the treatments for the disease as the disease itself varies greatly and it really helps to get feedback from people with different experiences. I know for me I lived long enough with Parkinson's to see what the possibilities were. This helped me to make up my mind about the surgery. In spite of the possible side effects, I was experiencing some really unpleasant side effects from the meds. Fortunately I also had a good movement specialist and a good, Neuro who I trusted with their evaluation.

I think your post has hit the nail on the head. You have to experience Parkinsons yourself before you can understand its many guises There will usually be someone who has experienced your problems and who can give you first hand advice on ways to cope. Your GP can only understand the symptoms.

I really appreciate your input. I feel like I did when my son was going through his teenage rebellion? " Am I the only one?" Now I know the answer was no, not by a long shot. I'm sure that the experience with dbs is the same thing. That is what I've found so helpful with support groups and this kind is great because we can still go even when we don't feel up to getting out or driving.