DBS after 5 to 10years people experiences

[Vishwa228]

anyone using DBS from past 10 Years, if Yes, how is the condition now.. is the PD stabilized or progressed?

[SilentEchoes]

My mom had dbs surgery more than 10 years ago, it improved the quality of her life but had no effect on the progression of her PD, and she still needed to take medication.

[Vishwa228 in reply to SilentEchoes]

Oh, how many medicines per day she is having now

[SilentEchoes in reply to Vishwa228]

She takes Rytary for her PD.

[MarionP]

Is just starting to show very very good results in the long term for depression, in the proportion of those whom it helps. PD yet, not so much, but some report benefit.

[etterus]

I had my DBS almost 6years ago. I would rate it very highly for controlling dystonia and gait as well as overall feeling of well being.

However about 2 years ago I needed to have the battery replaced. Since then I seem to be regressing more. My programmer feels that I am doing as well as could be expected.

I doubt that I would want to be alive today if I did not have it available in the last 5+ years... my quality of life was pretty dismal before. Many of my cohorts with PD of 20 years duration have expired and those that have not are incapacitated. A few are doing better than I am.

[Hidden in reply to etterus]

Hi etterus,

How long have you had PD? Could you please elaborate on how your cohorts died? I am curious because PD by itself doesn't kill.

[etterus in reply to Hidden]

I have had it for over 20 years but it was not diagnosed till about 18. Had I been close to a movement disorder specialist I’m certain that I would have been diagnosed at least 20 years ago.

Although Pd is not considered to be a terminal diagnosis it frequently is responsible for death due to lethal sequallae. Pneumonia or bladder infections for emaciated patients usually get the job done.

[jaberaaa in reply to etterus]

I had my DBS 2years back, I would rate it very highly for controlling dystonia too.