Hi - has anyone had this treatment that might want to share their experiences? I have Parkinsons and I am going to ask my Neurologist about my suitability for having it - due to dystonia and some movement issues. I have a very slight tremor. thanks
Hi @Jaczy I had DBS 11 months ago. What do you want to know?
Hi, @Jaczy.
Deep Brain Stimulation (DBS) can be really helpful for some people with Parkinson’s, especially if you’re experiencing movement difficulties or dystonia.
You might find this page on our website useful, as it explains what DBS involves, who it might help, and what to expect.
It’s also a great idea to chat with your neurologist about your suitability. And if you want to talk things through with someone trained and supportive, our free and confidential helpline is here for you: 0808 800 0303.
Take care! 
Parkinson’s UK Moderation Team
1 Like
I don’t have DBS myself, but I know a few people who’ve gone through it. From what they’ve said, it’s not really a “cure” but more of a way to reduce certain symptoms when medication isn’t doing enough. It seems to help most with stiffness, slowness, and dystonia, while tremor can be more variable. The process usually involves some detailed assessments first, because not everyone is a good candidate, and they want to make sure the potential benefits outweigh the risks. Recovery can take a bit of time, and the stimulation settings sometimes need a few adjustments before things settle. Definitely worth having that conversation with your neurologist so you get a clear picture of whether it might suit your situation.
Other therapies you could research is photobimodulation and intermittent fasting.
There are videos on YouTube to watch that are interesting and informative.
Thanks for all your contributions. Thats really helpful. Good luck to everyone who has experienced the treatment!!
Hi Jaczy,
I had DBS surgery just over a year ago, primarily to reduce rigidity and stiffness. I also used to suffer from bad dystonia. I do not have a tremor.
Since the DBS was switched on I have had no dystonia at all, which exceeded what I had hoped for. It has allowed me to reduce my medication by about half which has reduced the side effects.
I think I was lucky in that the DBS worked from the first calibration, I have had a few minor tweaks since but most of the benefit was instant for me.
It is not perfect and is certainly not a cure, but the impact on daily life has been massive and I am very glad I had the procedure.
If you want to chat about it, just send me a message and I would be happy to share more information.
Thanks
Paul
My wife had this op 10 or 11 months ago. She still has a few off days, and gets a little tremor mainly in the morning and evening, but she is on less medication and is far better than she was a year ago.
Thank you for sharing with us @timkford, it’s brilliant to hear how well your wife is doing since her operation. We hope her experience living with Parkinson’s continues to progress in this way.
Parkinson’s UK Moderation Team
Hi I had it done in 2017 and it cut out half my medication. It was a weird experience having a drill putting holes in your skull and the surgeon asking you to move certain parts of your body to check he was in the right place. The most pain was before the op when they put the halo on as there was a rush and no time for the anaesthetic to work properly. The device itself works fine but the meds are now wearing off quicker because I’m so used to them.
Technology has come a long way since I had mine done at Addenbrookes in fact now I have a rechargeable battery which was fitted at Southmead Hospital, Bristol. My problem was that the specialists at Addenbrookes didn’t listen to what we were telling them, that I had got TWO tremors !! Dystonic & Parkinsons, so when they fitted me up they said OH, you appear to have another tremor !! Such is life. LOL