Feb. 9, 2026
Ep-136 Turns Out, Your Brain Runs Better When The Battery Isn’t Toast
A slipper, a sudden freeze, and a screen that reads “DBS unit failed.” That’s how our morning began—and how years of carefully managed Parkinson’s symptoms vanished in seconds. What follows is an unvarnished look at life when a single device holds up half your world, and what it takes to stand it back up when that device goes dark during the holidays.
We walk through the cascade: dystonia locking all four limbs, a voice reshaped by stimulation, and the way DBS can both give back a life and complicate it. Travis shares how he balanced programming across device manufacturers and a movement disorder team, then layered in a subcutaneous levodopa pump to reclaim smoother movement without sacrificing communication. The tradeoffs are real, but so is the agency—adjust, test, iterate, and prioritize the parts of life that matter most.
Then we get tactical. With surgeons on vacation and insurance ticking over, we mobilized a network: neurology, neurosurgery, device reps, and a primary care fast-pass to complete pre-op in 24 hours. We pulled caregiving into a 40-hour schedule, leaned on friends for the gaps, and kept day jobs and a home rebuild moving after the Eaton Fire. The playbook is simple and hard: be known by your providers, deliver what they need quickly, and never hesitate to ask for help.
Finally, we zoom out to resilience planning. What happens when the internet drops and your phone depends on Wi-Fi? When you rely on a charger you can’t reach? When supply chains squeeze medication access? We share practical steps to eliminate single points of failure—phone trees, battery backups, accessible home design, and written plans—so a flare-up becomes a solvable problem, not a crisis.
If this story resonates, subscribe, share it with someone navigating Parkinson’s or DBS, and leave a review with one contingency you plan to add this week. Your ideas might be the lifeline someone else needs tomorrow.
- Co-hosts: Judy Yaras & Travis Robinson
- www.INDYpodcast.net
00:00 - Welcome And Today’s Tough Topic
00:40 - The Moment Everything Froze
03:36 - Life Without Stimulation Revealed
07:44 - Voice Changes, Pumps, And Tradeoffs
12:36 - Why DBS Helped And What It Cost
18:30 - Battery Failure Amid Holiday Chaos
23:10 - Scrambling For Surgery Access
28:40 - Community, Advocacy, And Asking For Help
34:00 - Caregiving, Work, And Staying Afloat
38:20 - Two Days Post-Op And Next Steps
WEBVTT
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Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.
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Welcome to the I'm Not Dead Yet podcast.
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I'm your co-host, Travis Robinson.
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I was diagnosed with Parkinson's disease at age 35 in 2014.
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And I'm your other co-host, Judy Yaris.
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My husband Sandy had Parkinson's disease for 18 years, and I was his care partner.
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Today's episode will be talking about what happens when your DBS battery fails.
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Great idea.
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Yes, it's it's a situation I have personal experience with.
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So we'll be relating a little of that personal experience and some of the lessons learned, both in reflection and also in situ lessons learned.
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Yes.
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So hi.
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Hi Travis.
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Hi, how are you?
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It's so good to hear you and see you.
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Yes, it's so good to hear and be seen.
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Yes.
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So I just want to point out for those of you that have been listening for the last four years at least, um, you might notice a change in Travis's voice.
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And we're gonna talk a little bit about that.
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Yeah, a little bit about how we came to achieve that change and the uh unfortunate uh circumstances that led to it.
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Right.
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Um but I suppose we should start at the beginning, and when we come to the end, stop.
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And so there I was.
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I just finished going and visiting family for the holidays.
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It was late December, just past Christmas.
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Uh my brother had been down for four days over the holiday, just sent him back up north.
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And um I was attempting to put a slipper on in the morning of December 29th, 2025, and I got stuck.
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And Parkinson's patients listening to this will relate when I say that it felt like being frozen, except it affected my whole body.
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And it was so severe that my girlfriend said, You've been trying to put that slipper on for about 45 minutes.
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Are you okay?
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And I said, No, I don't think I am.
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We looked at the immediate suspect in our minds, which was the Violet pump that I'd been working with recently, as listeners may know, to uh, you know, tune and adjust my Parkinson's treatment with the Vialove pump.
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And we quickly uh confirmed that it was running and still uh dosing out its medication, and I had a very sneaky bad suspicion that there was only one other thing that could be dehabilitating if lost.
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And I asked Sarah to give me the patient remote for my deep brain stimulator, which when we powered it on, it connected, and the very first thing it said is DBS unit failed, seek doctor's assistance immediately.
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And so that was an uncomfortable situation to be in because for anyone who has a deep brain stimulator, it's an electronic device that requires electricity to run.
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And so a complete and total battery failure of this device meant I had no more stimulation at all.
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It was 100% shut off.
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And that let me experience what Parkinson's progression had been like over the last nine years since I had first had this device implanted.
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The disease progresses, irregardless of the treatment, which is why treatment we do today may not be effective tomorrow, because tomorrow the disease might have progressed a smidge.
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It may stay the same for a great number of years, and it may progress in new and interesting symptoms, but it will progress.
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That's one thing we all have to look forward to.
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Yes.
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And so I realized, unbeknownst to me, that my disease had continued progressing quite severely, and I had reached a level of disability that left me chairbound, uh dystonic cramping in all four limbs, very dskinetic, not too bad on the tremor, which was predominant years earlier, but I was left in a shaking, cramped, claw-handed state that left me unable to feed, clothe, or go to the bathroom without assistance.
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Let me tell you, Judy, that was something that neither Sarah nor I was prepared for.
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Of course not, Travis.
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There'd be no reason for you to.
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I mean, regardless, after your DBS, you had more dramatic uh symptom reduction.
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And probably the biggest symptom that really occurred from that was the change in your voice, the the slowness of the cadence.
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And the difficulty in in general movement of my muscle, musculature, and really even bone structure.
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Right.
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To be able to form the words.
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Yes.
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Yes.
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It was very pronounced.
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And I'm sure that people that have listened to us for a long time remember what your voice was like before.
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And now, and and also there was a big boost again when you started the violet pump.
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We had a we had a few weeks of it was we, I called it sort of the honeymoon period.
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I think we talked about it.
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Where I remember the first time you called me and I went, whoa, who is this?
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There was that that moment of shock because it didn't sound like you, but it was very exciting.
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And I could see that with time it was reverting back a little bit.
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It never quite went back to what it was before.
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All the way.
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All the way.
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But you really, you know, had could see the difference and feel the difference.
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But this is a whole other experience.
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Because when we hear people talk about freezing in Parkinson's, sometimes it happens when they're crossing the street and all of a sudden they get stuck, or maybe they're trying to get to a table across a restaurant, maybe they're in a movie theater, whatever the situation, usually there is something that could be stressful about it that makes them just freeze.
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And there's a few tools that we've talked about over the years for freezing, and and that people describe that as if their feet are in cement, right?
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That's usually the the way people describe it.
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Yeah.
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Yeah.
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It's commonly described as a my feet are stuck to the floor, or you know, somebody shot nails through my shoes, and I can't move my shoes anywhere.
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Right.
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Or magnets.
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There's magnets under my feet pulling me down.
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Right.
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You know, I mean, I I've heard lots of different descriptions of this freezing.
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But what you experienced was very different.
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Because prior, let's can we go back for a second and explain before you did your DBS surgery nine years ago, what were your symptoms like?
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So that people have a reference point for this.
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A reference point for this.
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Um, nine years ago would have been 2016, late 2016, I was eating four carbonoba, levodoba, cinnamon style tabs every three hours.
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Okay.
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And that was causing a violent spasm of nausea, racking my whole digestive system.
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I could not keep any significant amount of food down.
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Wow.
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For months.
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And it was um that alone was dehabilitating my tremor.
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If I didn't take that much medication, my tremor was really off the hook.
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The whole right side of my body was flopping around like a landed fish.
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And those were probably, you know, gate, gate instability.
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Well, when you're when your right side of your body is flopping around, it's of course gonna send you off balance.
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Of course.
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So that's gonna be a uh, you know, impact.
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And and then to try and say, like, well, yeah, postural instability.
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Well, yeah, it's because I'm being racked by violent spasms of nausea, projectile vomiting, any water I drank into the grass.
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Right, right, yeah.
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You know, so um yeah, I was in a world of shit, which is why I proceeded to choose to elect getting the D-Brain stimulator, and it worked, it worked very well.
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Yes, reducing all of the symptoms, but it did impact my voice, and it was clear to me that the stimulation was the cause because I could turn the damn thing off, and my voice was restored to normal.
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Right.
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And so I went through the process of working with the um manufacturer of the device, the DBS team to get it programmed, getting second and third opinions, researching far and wide.
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And ultimately it was decided to switch deep brain stimulation device providers for a number of reasons.
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And I switched providers and I also switched programming teams.
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And when I when I did both of those, I I worked very diligently with a motor movement disorder specialist who worked with me for the better part of two years to craft a DBS stimulation profile that mitigated almost all the physical symptoms and minimized the impact of my voice.
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It was still there and it was still present, and I knew it was still present, but we'd tweaked it and adjusted it and shifted it and tweaked it and adjusted it and shifted it, and done this dance for quite a long time, you know, to get it just to a reasonable point.
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And that was right about the time I started Fiolove, which is a third, totally different uptake system of the carbonopa-levadopa.
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And it um, because of its subcutaneous delivery, it comes in differently, it's entirely different than oral medication of the same style.
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Yes, and so I began focusing on that, and unfortunately, did not pay as close of attention as I could have to my DBS unit.
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But the end of the day, when the one failed, I was sure as hell glad to have the other as at least an option already on board to change.
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Right, right.
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Thank goodness that you had it.
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I mean, that's all I kept thinking.
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You were so debilitated by this DBS battery failure that, and you had had it for a long time.
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So it's like, I want people to understand this doesn't happen all the time.
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I I don't want to scare people with this with about the DBS batteries, but you do have some control over seeing what's going on.
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And it wasn't like you had to go back in and do all new leads and things like that.
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You're still using your same leads, which is really great.
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Right.
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So it's really like a swap, a battery swap, is what you had to have.
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Yes.
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And the only challenge to that is on top of maintaining all the first of the year, like insurance changes, Medicare law changes, things that went in place, you know, that I had no control over but affected me.
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Sarah and I also had to navigate getting a full-time care provider for me so that she could go to work.
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We had to arrange family and friends on a rotating schedule to provide assistance outside the 40 hours a week that we got the caregiver to give.
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Right.
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And then we additionally had to navigate calling all the different medical facilities that I was already on the register with to get added to the DBS schedule to have this procedure done at a time when most of the surgeons were out on vacation.
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Yes, the holidays.
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Right in the middle of Christmas and New Year's.
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And, you know, it's all well and good.
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It doesn't seem unreasonable for a doctor to take a week off at the end of the year unless you're the one waiting for that doctor to get back.
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And every minute that you're waiting is extracted out of discomfort.
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Yes.
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So that that put a particular sort of spin on this, right?
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And a strain.
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And and I just want to give a little backstory because there may be people that are not familiar with your story or who you are.
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But last year, Travis and Sarah lost their home in the Eaton Fire.
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So for the last year, they have been living in temporary apartments that may not be totally ideal, and also dealing with insurance and building a new house, which all these things that just add more and more stress, which is not great for a person that has Parkinson's to have that kind of stress.
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In the first place.
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And right, you know, I was dealing with it.
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Sarah, my partner, was dealing with it, you know, and it was it was a real, it was a real pain.
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Yes.
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So so you've had a really crazy year, and now here you are being told there's no one around.
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You've called these medical facilities.
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Right.
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And they tell me we don't even know when we'll get you on the schedule.
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The doctor's on vacation.
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Right.
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So all I could do was hang out and wait, and you know, try and be patient and you know, suffer through it.
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Which, you know, I don't want to be melodramatic, Judy.
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I've suffered as much in my Parkinson's as most folks have in theirs.
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But it was a long week.
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Yes.
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And again, we we were not prepared for me to be this disabled.
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Had we known that I would be wheelchair bound, we would have picked a rental unit that had better wheelchair access.
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Exactly.
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Something with ADA capabilities, something.
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Right, something.
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Right.
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Which, you know, fortunately, as you mentioned, we're rebuilding our home that was destroyed by the Eaton fire.
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And we are taking some of these lessons that we so recently learned and incorporating them.
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We already had plans for an ADA accessible shower.
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Now we're making sure it's a full roll-up shower.
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Good.
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So that there's no bumps or dramatic level changes or lip or anything.
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So that should, in the event of my needing a future wheelchair, I can roll right up to the shower stall.
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Right.
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In the shower stall.
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Yes.
00:19:08.640 --> 00:19:13.519
And you know, Travis, I want to say one thing about you, and I want to commend you for this.
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And I know the people that you inspire, which is I think anyone that has ever met you or has come in contact with you?
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We all feel that no matter what shit happens, you always have this amazing attitude of feeling positive that it's gonna be okay and I can do this.
00:19:40.319 --> 00:19:47.599
And my big question for you was there any time when this failure occurred?
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Did you ever feel like I'm not gonna get through this?
00:19:51.680 --> 00:19:52.799
I'm just curious.
00:19:52.960 --> 00:19:57.920
I sort of know the answer, but I just want to see if maybe it might be different.
00:19:58.319 --> 00:20:05.279
No, Judy, I just don't think um I'll be lucky enough to get out of this life that easily.
00:20:05.519 --> 00:20:07.200
Okay, that's what I was thinking.
00:20:07.359 --> 00:20:09.200
I mean, I know you pretty well.
00:20:09.359 --> 00:20:12.240
We've been good friends for a very, very long time.
00:20:12.559 --> 00:20:27.119
And I just I always love the resilience and tenacity and the way you are able to take a situation and take lemons and turn them into lemonade.
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And I love that about you.
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I and I think that's why people look up to you and you're so inspiring because you take it for what it is.
00:20:38.240 --> 00:20:57.119
And part of that is that you've learned to live in the moment rather than project the future, which explains why you were so shocked when all of a sudden you saw these new, this new Parkinson's that you have not seen for the last nine years, right?
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Right.
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Because you weren't thinking, oh, about all this time.
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You weren't thinking of what it's going to be.
00:21:03.839 --> 00:21:08.480
You've just been in it and with it and living your life to the fullest.
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Right.
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And it was it was only when we had this glimmer, which, you know, really emphasizes a sort of there, but for the grace of God go I, you know, had I not had DBS, I would have been presumably progressing to this state of full-blown incapacitation over the last nine years.
00:21:34.640 --> 00:21:37.519
And it wouldn't have been a surprise to Sarah or I.
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We would have been used to it.
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But that said, I wouldn't have had the last nine years to do all the things that I've managed to do in the last nine years.
00:21:46.640 --> 00:21:46.960
Yes.
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So that was that was a sort of moment of gratitude for me that I'm grateful that my life was good enough that it could be fucked up this badly by this.
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Loss of a support structure.
00:22:03.359 --> 00:22:14.559
Because had the DBS not worked and not worked as well as it had, I wouldn't have felt the loss of it as severely as I did.
00:22:15.279 --> 00:22:15.920
Yes.
00:22:16.240 --> 00:22:33.039
So that's that's sort of an internal process that I had to go through, and that I talked a lot with my partner Sarah over, is you know, we would we would be more prepared for this had it not been as good as it was.
00:22:33.200 --> 00:22:41.200
But the fact that it was as good as it was got us to rely on it being as good as it was.
00:22:41.519 --> 00:22:42.559
Yes, yes.
00:22:42.799 --> 00:22:48.319
You know, and yeah, you've pretty much done what you want to do in your life.
00:22:48.480 --> 00:23:05.839
You've climbed mountains, you've done all kinds of building and construction things, you are doing your art, your photography, uh, your hiking, all the things that are so important to you in your life, you've done them and you've done them well.
00:23:06.319 --> 00:23:10.240
And and that's amazing to most people.
00:23:10.720 --> 00:23:20.400
But I think this just was sort of a wake-up call to say, hey, you know, here's where you are, buddy.
00:23:20.720 --> 00:23:21.039
Right.
00:23:21.200 --> 00:23:22.720
It could be much worse.
00:23:22.880 --> 00:23:32.799
And yet, in fact, it is if you know, certain key key elements in my Parkinson support structure fail.
00:23:33.119 --> 00:23:34.319
Right, right.
00:23:35.039 --> 00:23:36.720
So what did you do?
00:23:36.880 --> 00:23:38.880
You called your doctor, obviously.
00:23:39.039 --> 00:23:54.400
You called your normal MDS, called the normal MDS, called uh neurosurgery at one institution that I'd been to before called neurosurgeon that works with my neurologist.
00:23:54.720 --> 00:23:56.400
We reached out with them.
00:23:57.200 --> 00:24:06.400
We we tried a uh a dual path process where we were reaching out to multiple doctors at multiple institutions.
00:24:07.279 --> 00:24:14.880
But unfortunately, as I've explained to um a few folks, it's not like just going to the ER.
00:24:15.119 --> 00:24:23.119
It's not like just going to a doctor's office and saying, hey, you're a surgeon, can you put a new battery in me?
00:24:23.359 --> 00:24:44.319
You know, it's it's a neurosurgical device, it's a neurosurgical process that requires a neurosurgeon to perform it, even though it in itself does not specifically involve the brain or the spine or any neurons.
00:24:44.640 --> 00:24:45.200
Right.
00:24:45.440 --> 00:24:57.920
The fact is it's connected to those parts, and so they don't want, you know, any Joe Blow with a hatchet or a scalpel to start chopping you open and putting the battery in.
00:24:58.160 --> 00:24:59.039
Right, right.
00:24:59.599 --> 00:25:16.079
And fortunately, I've maintained good relationships with the device manufacturer that I carry, uh-huh, the neurosurgeon whose team I worked with, and I was able to say, hi guys, it's Travis.
00:25:16.240 --> 00:25:20.400
Remember me from a couple years ago when we did the battery replacement last time?
00:25:20.559 --> 00:25:23.119
Well, I need another one, and I need it step.
00:25:23.519 --> 00:25:24.000
Right.
00:25:24.319 --> 00:25:26.640
You know, what are what are our options?
00:25:26.880 --> 00:25:28.880
How can we get this accomplished?
00:25:29.119 --> 00:25:44.640
And I had a very good team of brethren from my Masonic Lodge that were able to handle some logistics and got me in to see a primary doctor who I don't normally keep on hand.
00:25:44.799 --> 00:25:50.880
I visited so many specialists that what what good are primaries?
00:25:51.440 --> 00:26:11.200
And I I went into the primary internist because he had to sign off on my blood work, EKG, chest x-ray, and urine sniffing, right, to make sure that I was healthy enough to go into a surgery.
00:26:11.440 --> 00:26:11.759
Right.
00:26:12.000 --> 00:26:15.759
And I got in to see him on 24-hour notice.
00:26:16.160 --> 00:26:25.920
Which is fantastic that you were able to do that kind of that amazing pre-op appointment, which could take also a certain amount of time.
00:26:26.079 --> 00:26:34.000
I mean, I think we all know if you have any kind of medical condition, you just don't pick up your phone and call a doctor anymore.
00:26:34.160 --> 00:26:49.759
That's why they've developed all these urgent care centers, because it's almost impossible to get in to see a doctor without a two-month wait or a three-month wait, or in some cases with an MDS, it could be six or eight months.
00:26:49.839 --> 00:27:00.880
Although I do want to do a shout out to most of our major medical institutions in the LA area now, that they have really beefed up their programs.
00:27:01.279 --> 00:27:10.640
And I am hearing that people are getting in within two months and three months, which is a year and a half or two years ago, that was not the case.
00:27:10.880 --> 00:27:18.160
And now you can actually get in to see a movement disorder specialist in a much more effective and timely manner.
00:27:18.319 --> 00:27:20.319
So I think that's great.
00:27:20.720 --> 00:27:41.200
Yes, and that speaks to not only the rise in Parkinson's diagnoses over the last five years or so, but it also speaks to the major institutions, like you said, in a major urban environment that you know we both live in.
00:27:41.359 --> 00:27:55.839
And my heart is really out there to folks who don't have or choose not to have the luxury of living near a major urban environment that has such institutions available to them.
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