Calling DBS PWP whose voice has been affected by it

[jeeves19]

Hi all. You might remember that I recently posted about voice issues. There was a great response which I’m thankful for. However,I think I’ve realised that there are definitely two things at work: one is the PD of course and your possible solutions were pertinent here. Second though is the DBS which is presenting its own challenges. My first experience was on holiday a year ago. My wife and I had a couple of cocktails and I was wwwaaayyyy out of it. My speech went into massive slow motion and Ali had to help me home. A similar thing happened when I went into a bar about two months later. The Healthunlocked fraternity suggested too much B1 at some point, but then I made the connection between alcohol and this state. Later events: I’ve started experiencing this rotten vvveeerrryyyy ssslllooowwww speech about 1/2 a week lately. And it hasn’t been provoked by alcohol. I found a presentation on YouTube whereby some clinician had examples of patients speech following DBS. One guy sounded just like me and his speech was due to the placement of the cables being inserted ‘medially’?

So, while DBS was generally a success it appears to have provoked some unwelcome process. The clinician even showed a graph which plotted the worsening of the voice over 3 years. Bummer. I’ve written to several PD, non-DBS friends who have claimed that despite having had PD for a long time, they’ve never come across this phenomenon. This convinced me that the DBS is the culprit. So whilst I’ll now contact Bristol, if anyone has had anything similar I’d like to hear from you. Cheers all.

Jeeves

[Gallowglass]

I’d suggest chewing xylitol gum 3 times daily till the flavor is gone. This has helped me immensely.

[park_bear]

I think you have done a good job establishing that alcohol is not good for your Parkinson's. You are by no means the first person to have demonstrated this. I would suggest avoiding it if you're not already doing so.

[jeeves19 in reply to park_bear]

Indeed PB but why is it more frequently even without alcohol? I’m being a bit rhetorical here. I doubt if even the neurologist will be able to get to the bottom of it. Concerning though

[MikeCosta]

Jeeves, it definitely sounds like your DBS is playing a role in the speech issues. While PD itself can cause hypophonia and dysarthria, DBS—especially depending on lead placement and settings—can sometimes worsen speech over time.

Your experience with alcohol triggering exaggerated slow-motion speech early on could point to DBS affecting brain areas involved in motor coordination and speech regulation. I have DBS and my speech has definitely worsened over time - especially after drinking alcohol.

Medial placement of leads, particularly in the subthalamic nucleus (STN), has been linked to speech difficulties in some patients. Research and patient reports show that while DBS often helps movement symptoms, it can sometimes negatively impact speech, and the effect may worsen over time.

What You Can Do Next

Check Your DBS Settings – A skilled programmer might be able to adjust stimulation intensity, frequency, or which contacts are activated to minimize speech side effects.

Consider Speech Therapy Tailored for DBS Patients – Traditional PD-focused therapy (like LSVT LOUD) doesn’t always work the same way for those with DBS, but some speech therapists specialize in DBS-related speech issues. I completed this therapy ~6 months ago and it helped alot. I still practice 2-3 times per week. Alcohol still brings it out somewhat.

Assess the Long-Term Trend – If the clinician’s presentation showed speech worsening over three years, it’s good that you’re catching this now. Some adjustments might slow or stop the progression.

Your plan to contact Bristol is solid—they may have experience tweaking settings to improve speech outcomes. Hopefully, others with DBS-related speech issues can share their insights too. Keep us posted!

[jeeves19 in reply to MikeCosta]

Thanks so much Mike. Really appreciate your insights and input here. Great stuff!

[PDGal4]

Great advice and insights @MikeCosta.

@jeeves19 I would talk to a speech therapist for input on how to best address voice issues. I have heard from speech therapists before that DBS, in some people, affects speech and swallowing .