DBS for Parkinson’s: Why I Said No Three Times (And Why I’m Still Considering It)

Deep Brain Stimulation (DBS) may be one of the biggest decisions a person with Parkinson’s ever makes.

Some people call it life-changing.

Others call it terrifying.

And after being on a three-year waiting list and coming off it three different times, I understand both sides of the conversation.

In this episode of Living with Parkinson’s: The Good, the Bad, and the Reality, I share my personal DBS journey, the real pros and cons, and the questions I think every person with Parkinson’s should ask before making this decision.

We talk about:

• What Deep Brain Stimulation actually is and how it works
• Why DBS is not a cure and what it can realistically do
• Why I came off the waitlist three separate times
• Who is typically considered a good DBS candidate
• The biggest benefits people often experience
• The risks and realities nobody talks about enough
• The emotional side of living with a device in your brain and chest
• Why the decision is often "not yet" rather than simply yes or no

We also discuss:

• How to navigate DBS if you're living with Parkinson's solo
• Building a decision-making team around you
• Questions to ask your neurologist before moving forward
• Carmen's Care Partner Corner and how DBS affects the entire family, not just the person having surgery

Most importantly...

We talk about the one DBS question that matters more than eligibility, timelines, or surgery dates.

Because the truth is...

DBS is not a finish line.

It's a pivot point.

And every person reaches that decision in their own time.

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“With Parkinson’s, medication is like coffee. It’s not about how strong it is. It’s about when you take it.”

⚠️ Important Note

This is my personal Parkinson’s journey. What works for me may not work for everyone. Parkinson’s is different for each person, and medication plans should always be discussed with your doctor or healthcare provider.

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