Dr. Okun, today is 1/30. The only change that my programmer made on 1/6 was a change on my right side of my head that was supposed to help with my speech. I was a stutterer since the 3rd grade.
Well now besides not going anywhere without a walker, now my speech is about the worse it has been my entire life.
I am currently having a Physical Therapist come to our home 4 times a week. We started our 3 week today.
Since I have a dropfoot and my ankle now rolls, I will get a brace 2/10 that should prevent the rolling and help with my drop foot. I have big hopes fir this thing.
I had DBS 9/26 so it's still not been 6 months yet.
At our 1/6 meeting, the programmer asked my wife what she thought my best setting was so far. My wife said the original one, which had no name and was not bipolar. Since we started bipolar a while back, named group B, the original setting is now Group A.
So instead of going back to Group A, the programmer must have ignored my wife's few and just made the additional change to Group B hoping to improve my speech.
Question: Does every patient who has the capability of using the bipolar programming have to have it, or do some do better staying with the non bipolar, even though the bipolar offers so many different options. Realizing that the programming part of DBS is the part I know the least about.
At least with the original setting I had dyskinesia and we were able to start reducing my Sinemet.
The programmer was self taught and I have only heard good things about her and supposedly doing this for 10+ years at the University of Cincinnati with the staff and my surgeon Dr. Mandybur all having experience and well documented praise.
I guess I expected more positive reaction from DBS than what I am getting. It is just frustrating and scary wondering why my PD symptoms are not a lot better if not worse in some areas. I'm and concerned how before DBS I was walking and 4 months later I went to a cane and now to a walker without improvement in other areas like patient in this forum talk about.
1 more thing. In the past weeks I had to go from 3 mg Requip to 4 mg Requip at bedtime.
And because I'm not sleeping very long (2:30-4:00 AM) I had my Clonazepam changed from 1 to 1.5 mg. And since that didn't help just started on Trazadone .5
That's a lot of negativity in 4 months time.
Thank you for listening to me rant