i had DBS in 2011. iT has helped but not as much as i had hoped it would. I was told I would not have to take hardly any medicine anymore and that I would be able to work again. That is not the case. I went for 2 years getting turned up every few months and it wasn't helping. It would help at first but after a few weeks, I would go back to the way I was. My dr said she thought I was habituating to the DBS.
I ended up going to a specialist in Denver ( I live in TX)who troubleshoots DBS. She is awesome and found that my settings were too high and my symptoms were actually better with the DBS off. SO she started all over from the beginning with the long programmimg day. I got better with her programming and went back home and over the next few months, wet back to the way I was. I was getting very frustrated. Anyway, to make a long story short, I found out that the line wasn't in the best place on one side of my brain. So I had the surgery redone on that one side in Denver with the specialist. I am doing better now but still not perfect. I have to take meds every 2 to 4 hours. I still have fluctuations but not as bad. My toes used to curl up so bad that I would literallly cry for hours. DBS helped that tremoundously with that.
One day i turned off my DBS because I was having dyskinesia and I went to a friends house and forgot my remote. My meds wore off and i trully saw how much the DBS actually did help. I was shaking all over (with the DBS i dont have tremors. I could barely talk, could not walk had mask face and I could not think.
So my friends drove me home and I turned it back on and slowly got better.

I

Thank you so much for taking the time out to give such detailed information. I am also no longer satisfied with my DBS, and I don't think it's just because six years have passed and the PD is just progressing. I may just give one of those numbers a call and, if I do, I'll give you the results.

God bless you and your husband as you deal with this horrible disease.

Rose

THANK YOU.

I had my DBS fitted in Nov. 2016. At first it made me feel muzzy snd terrible, so I have been increading it myself at Home. I speak to my nurse weekly and will see the Big Chief on monday. I was warned it would take a while to get my levels right and that patience was needed. So far I have no regrets it has bern life chsnging.

I feel almost like one side of my body is fighting the other. I have some control of my programmer now but I don't know what to do with it. Just making the bed is exhausting.