Sept. 27, 2025

EP-133 Wheels, Words, and Willpower

When Parkinson's disease progression begins to steal your voice and your stability, what options remain? Travis opens up about a frightening downward spiral that left him falling repeatedly and struggling to communicate - the very foundation of his identity and independence.

"If I can't talk to you and have you understand me, then I am trapped and I'm no different than somebody locked in a cage," Travis shares, revealing the profound isolation that comes when Parkinson's affects speech. After years of managing symptoms with medication and Deep Brain Stimulation, Travis found himself facing a new reality: needing an electric wheelchair and watching as waiters began addressing his questions to his partner instead of him.

The conversation takes an unexpected turn as Travis reveals his experience with Vyalevⓡ, a recently FDA-approved subcutaneous delivery system for carbidopa-levodopa that doesn't require the permanent abdominal port of earlier systems. Just days into this new treatment, Travis describes subtle but meaningful improvements that allowed him to hike at 10,000 feet elevation when he'd previously struggled to take out the trash without falling.

This raw, unfiltered discussion explores the emotional impact of disease progression, the difficult decisions about assistive devices, and the constant search for solutions that preserve dignity and independence. Travis's philosophy resonates throughout: "It's better to be out there doing something cool than looking like you're doing something cool, but not actually" - a powerful reminder that living fully sometimes means embracing the tools that enable participation, even when they challenge our self-image.

Join us for this deeply personal exploration of finding hope when standing at the edge of what feels like a cliff, and stay tuned for part two where we'll continue the conversation about this promising treatment option.

Co-hosts: Judy Yaras & Travis Robinson
www.INDYpodcast.net

00:00 - Welcome to I'm Not Dead Yet

01:05 - Parkinson's Progression Effects

03:14 - Travis's Declining Health Journey

07:18 - The Impact on Communication

11:43 - The Decision to Use a Wheelchair

16:25 - Deep Brain Stimulation Experience

27:41 - Discovering Biolevⓡ Treatment

36:50 - First Days on New Treatment

42:11 - Breaking for Part Two

WEBVTT

00:00:01.600 --> 00:00:13.039
Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.

00:00:16.559 --> 00:00:19.760
Welcome to the I'm Not Dead Yet Podcast.

00:00:19.839 --> 00:00:22.960
I'm your co-host, Travis Robinson.

00:00:23.359 --> 00:00:31.280
I was diagnosed with Parkinson's disease at age 35 in 2014.

00:00:32.479 --> 00:00:35.520
And I'm Judy Yaris, your other co-host.

00:00:35.759 --> 00:00:41.119
My husband Sandy had Parkinson's disease for 18 years, and I was his care partner.

00:00:41.759 --> 00:01:04.799
Today's episode we'll be talking about the Parkinson's disease progression and how that progression can impact your relationships, your self-worth, and all the manifold areas that PD affects your life.

00:01:05.200 --> 00:01:05.760
Right.

00:01:06.079 --> 00:01:08.799
This is a really important one, Travis.

00:01:08.959 --> 00:01:26.239
And I think that we should start off by saying, I just want to point out to some people, if you have been a listener for a while, and maybe from day one, way back in 2021 when we started, which it's hard to imagine that we've been doing it this long.

00:01:26.719 --> 00:01:32.400
I think you've heard Travis at different points where he has sounded strong.

00:01:32.719 --> 00:01:40.159
He has sounded a bit wobbly or guttery sounding, a little bit what's the correct word I'm looking for?

00:01:40.400 --> 00:01:43.120
I think just difficult to understand at times.

00:01:43.359 --> 00:01:45.840
Maybe that's a good way to describe it.

00:01:46.079 --> 00:02:01.040
And as a person sitting across from you, seeing you, I've seen you when you've been smiling and feeling good, and I've seen you when you have been in clearly the most excruciating pain and in really like horrible.

00:02:01.359 --> 00:02:12.560
So I think for our listeners that have been with us a long time, you've seen the ups and downs that Travis has experienced with his Parkinson's.

00:02:13.120 --> 00:02:18.719
And so tonight we're going to explore a little bit about something different.

00:02:18.879 --> 00:02:23.039
Number one, you may notice his voice sounds a lot stronger.

00:02:23.280 --> 00:02:27.280
And we're going to talk a little bit about what has brought that on.

00:02:27.599 --> 00:02:30.800
And he's kind of laughing at me right now and smiling.

00:02:31.039 --> 00:02:32.960
But we're going to take a look at this.

00:02:33.039 --> 00:02:42.080
And we're also going to take a look at what has led to this new surge of strength that he's feeling at the moment.

00:02:42.560 --> 00:02:44.560
So let's start off, Travis.

00:02:44.719 --> 00:02:56.400
I know we touched on a little bit in our last episode about the trip that you had been in Iceland and you had a wonderful trip, and it was a great photography expedition for you.

00:02:56.719 --> 00:02:58.319
It was, yes.

00:02:58.560 --> 00:03:01.759
And that when you got back, it was really difficult.

00:03:02.000 --> 00:03:03.759
You were having some issues.

00:03:04.080 --> 00:03:05.520
It was, yeah.

00:03:05.840 --> 00:03:15.599
And it was the kind of thing that any one given day, any one given hour things were not that bad.

00:03:15.919 --> 00:03:37.840
But when you took a step back and looked at the summary of like day-to-day life events, you know, from falling over trying to get a piece of pizza, to, you know, spending an hour folding laundry so that I didn't fall over while I was doing it.

00:03:38.159 --> 00:03:41.919
It was a pretty distinct decline.

00:03:42.879 --> 00:03:53.840
And that's really the only way I can put it is it wasn't like, oh, I forgot to take my meds one day or oh, I didn't exercise one day.

00:03:54.080 --> 00:04:08.800
It was just every day, everything from any point to any point that you wanted to put any measuring stick to sucked that much more than the preceding day.

00:04:09.120 --> 00:04:09.439
Right.

00:04:09.599 --> 00:04:12.159
You were just on a spiral of going down.

00:04:12.560 --> 00:04:13.039
Yeah.

00:04:13.280 --> 00:04:24.000
And I I know because for a bit there, sometimes Travis and I talk during the week in between sessions, and he was like silent.

00:04:24.319 --> 00:04:26.079
You know, I didn't hear anything.

00:04:26.240 --> 00:04:35.439
So then I got kind of worried, thinking, oh, he must maybe he's traveling because he he is allowed to go on trips without telling me, which he does frequently.

00:04:35.839 --> 00:04:37.279
But um, and that's okay.

00:04:37.360 --> 00:04:39.839
You could you're still allowed to do those things.

00:04:40.000 --> 00:04:42.399
Uh you have a man of free will.

00:04:42.800 --> 00:04:47.519
But I knew that he was somehow going through something a little deeper.

00:04:48.000 --> 00:05:10.720
And during this time, I think it was difficult for you, not only as your persona, how you see yourself and the strength that you bring to the table when you come to a support group or you talk to people that you first meet, or when you talk to someone that's asking you about DBS and medications.

00:05:11.040 --> 00:05:14.879
But I think it really impacts how you feel about yourself.

00:05:15.279 --> 00:05:16.160
Oh, sure.

00:05:16.480 --> 00:05:28.800
Because one of the key areas that this downward PD spiral affected me was in my speech, my very way of communicating with the world.

00:05:29.040 --> 00:05:29.279
Right.

00:05:29.600 --> 00:05:43.519
My interaction platform with pretty much everyone I interact with from my poodles to my girlfriend and the listeners of this show.

00:05:43.759 --> 00:05:57.279
If I can't talk to you and have you understand me, then I am trapped and I'm no different than somebody locked in a fucking cage.

00:05:57.519 --> 00:05:58.079
Right.

00:05:58.319 --> 00:05:59.759
That's so true, Travis.

00:05:59.839 --> 00:06:08.079
And I I think that I've heard you and I've seen you in that position, and I know how stressful that has to be for you.

00:06:08.399 --> 00:06:19.040
Yes, and it's the thing that I don't think a lot of folks without direct first person experience with PD can really wrap their head around.

00:06:19.279 --> 00:06:23.279
It's like, oh, your handshake, so that must suck.

00:06:23.439 --> 00:06:30.560
It's like, no, man, my handshake, so I can't type and I can't write.

00:06:30.800 --> 00:06:52.399
And then when my voice starts wobbling too badly, I can't even use the speech to text features on my phone or my computer, and then I get real upshit creak real fast because when I ask someone for help, they can't understand me.

00:06:53.120 --> 00:06:57.439
And the waiter starts looking at my girlfriend when I ordered.

00:06:57.759 --> 00:07:03.839
Like, what will your retarded fucking stepson be having today?

00:07:04.079 --> 00:07:16.240
You know, it's really impactful, not only in how I'm treated, but even in the perception of how I'm treated by other people.

00:07:16.800 --> 00:07:21.680
No friends get angry at waiters on my behalf.

00:07:22.160 --> 00:07:22.720
Right.

00:07:22.959 --> 00:07:30.639
And that has to be a difficult position for you, Travis, as an independent person, to feel like I'll fight my own battles.

00:07:30.879 --> 00:07:33.279
I don't want you to fight my battles, right?

00:07:33.519 --> 00:07:33.839
Right.

00:07:34.079 --> 00:07:41.519
And that's if I can fight my battle, I just want to order fucking dinner, not have a fight.

00:07:41.680 --> 00:07:41.920
Right.

00:07:42.160 --> 00:07:42.800
You know?

00:07:43.199 --> 00:07:45.839
Yeah, yeah, I see that.

00:07:46.160 --> 00:07:53.600
So I think that you've made this shift here, and I want to talk a little bit about it.

00:07:53.920 --> 00:08:04.319
So as you saw yourself going down this Parkinson spiral and feeling, I'm assuming that maybe you felt a little hopeless along the way.

00:08:04.560 --> 00:08:06.959
And you rarely hear that from Travis, by the way.

00:08:07.040 --> 00:08:10.480
If you're a new listener, you might not know this about Travis.

00:08:10.720 --> 00:08:17.360
But he fights, he doesn't give up, he is always positive, no matter how bad it is.

00:08:17.600 --> 00:08:24.879
In the next minute, he will find something to feel grateful for and be on to the next step.

00:08:25.199 --> 00:08:29.439
And I think that you weren't able to do that this time.

00:08:30.160 --> 00:08:31.519
Not really well.

00:08:31.680 --> 00:08:43.120
I mean, I'm a strong believer, Judy, in that we always have a choice, even if we just can change our outlook, not the external situation that we're in.

00:08:43.279 --> 00:08:43.440
Right.

00:08:43.679 --> 00:08:46.000
We can always change our outlook.

00:08:46.320 --> 00:08:52.799
But sometimes changing our outlook does not do a whole lot for us.

00:08:53.039 --> 00:09:07.440
You know, when you're looking at the bottom of a ramp that you've slid down, and at the bottom of that ramp is a cliff in the air, there's just not a whole lot of ways you can spin that to be positive.

00:09:07.840 --> 00:09:08.639
Of course.

00:09:08.960 --> 00:09:09.600
You know?

00:09:09.840 --> 00:09:10.159
Yeah.

00:09:10.399 --> 00:09:12.559
And that's just how it is.

00:09:12.799 --> 00:09:19.759
And that was honestly sort of the perspective I was starting to come up with.

00:09:20.159 --> 00:09:28.000
Things as we talked about in the last episode here at the house had been challenging for me.

00:09:28.480 --> 00:09:34.480
Just moving around, doing the ADLs, uh, daily living tasks.

00:09:34.799 --> 00:09:43.519
Right, feeding the dogs, getting yourself dressed, going to the bathroom, making coffee, making breakfast, making lunch.

00:09:43.759 --> 00:09:46.559
I think Travis moved into a new place.

00:09:46.720 --> 00:09:52.799
It's been what, a month or two since you've moved into the new space, and it's a little bit smaller.

00:09:52.960 --> 00:09:55.120
It's good, but it's not ideal.

00:09:55.440 --> 00:09:58.559
And so that presented some challenges for you.

00:09:58.879 --> 00:09:59.440
Yes.

00:09:59.679 --> 00:10:13.840
And even if the size and the layout were all fine, there's the fact that I'm still living in part boxes because we've had to replace everything.

00:10:14.080 --> 00:10:14.240
Right.

00:10:14.480 --> 00:10:25.679
And so getting new furniture, it comes in boxes, and there's these huge cardboard piles that we have to get rid of once a week.

00:10:25.840 --> 00:10:33.600
We go through this big song and dance to, you know, march out all the cardboard to the end of the curb, you know.

00:10:33.840 --> 00:10:34.240
Yes.

00:10:34.480 --> 00:10:45.440
And that became so difficult, and I was falling so often that Sarah was afraid for me to take the fucking trash out.

00:10:45.840 --> 00:10:46.320
Right.

00:10:46.559 --> 00:10:49.840
Which has not been an issue for you up until this point.

00:10:50.159 --> 00:10:50.799
Right.

00:10:51.200 --> 00:10:59.200
And like I just want to emphasize for folks that don't know me, I should be able to take the trash out.

00:10:59.679 --> 00:11:11.679
That is not high on my level of physical prowess, but it was proving to be too much of a challenge for me to execute safely.

00:11:12.080 --> 00:11:12.639
Right.

00:11:12.960 --> 00:11:16.559
So, with that in mind, you had to make some adjustments.

00:11:16.799 --> 00:11:17.440
Yes.

00:11:17.759 --> 00:11:28.080
And I think Travis had mentioned to me before we started this that he had gone on another photography expedition and he was away shooting.

00:11:28.159 --> 00:11:33.120
And when he came back, Sarah had something there for you at the house.

00:11:33.360 --> 00:11:33.679
Yes.

00:11:34.000 --> 00:11:34.879
You wanted what was it?

00:11:35.360 --> 00:11:47.440
Well, she she had talked about getting it for quite a while, and we had both decided that it looked like I would probably need it sooner than later.

00:11:47.600 --> 00:11:51.200
And it was an electric-powered wheelchair.

00:11:51.519 --> 00:11:53.919
A fucking wheelchair.

00:11:54.240 --> 00:11:54.799
Right.

00:11:55.120 --> 00:11:59.840
Which you have not ever said that you felt like you needed that.

00:12:00.159 --> 00:12:00.720
Right.

00:12:01.039 --> 00:12:14.240
But you know, when you fall eight to ten times in the space of two hours, you start really questioning whether you're stable on your feet.

00:12:14.480 --> 00:12:15.039
Yes.

00:12:15.360 --> 00:12:30.879
And so, always solution-minded, I was looking for ways to get around that would be a little safer, but would also be realistic for the things that I still wanted to do.

00:12:31.279 --> 00:12:32.159
Of course.

00:12:32.480 --> 00:12:39.519
And I also want to point out here, in this situation, Travis has a partner, a long-term partner.

00:12:39.759 --> 00:12:40.159
Right.

00:12:40.320 --> 00:12:48.080
So it's not just Travis having to make this adjustment, it's Sarah having to make this adjustment.

00:12:48.639 --> 00:12:52.559
So there's a lot of moving parts here with this.

00:12:52.799 --> 00:12:56.320
It's not like, oh, honey, we're ordering an electric wheelchair.

00:12:56.480 --> 00:12:57.440
No biggie.

00:12:57.679 --> 00:12:58.000
Okay.

00:12:58.240 --> 00:12:58.480
Right.

00:12:58.879 --> 00:13:01.360
That's not the way the conversation goes.

00:13:01.600 --> 00:13:03.279
It's a big conversation.

00:13:03.440 --> 00:13:06.159
And most people don't want to have that conversation.

00:13:06.480 --> 00:13:06.799
Right.

00:13:07.039 --> 00:13:09.840
We didn't want to have that conversation.

00:13:10.240 --> 00:13:21.120
And we had told ourselves that, you know, it would be, you know, years down the line, regardless of when that conversation happened.

00:13:21.200 --> 00:13:24.399
It was always many years from now.

00:13:24.879 --> 00:13:26.320
Whenever now is.

00:13:26.639 --> 00:13:27.919
Whenever now is.

00:13:28.159 --> 00:13:28.480
Okay.

00:13:29.039 --> 00:13:40.159
And the fact of the matter is, is we had that talk again, I think about a week ago, you know, before I left on the trip.

00:13:40.399 --> 00:13:44.799
And she said, you know, do you think we need to pull the trigger on this?

00:13:44.879 --> 00:13:50.320
And I said, we might as well, because I don't know when I'm going to need it.

00:13:50.559 --> 00:13:51.759
That was smart.

00:13:52.080 --> 00:13:59.600
So, Travis, for you, you haven't always looked at assistive devices as your enemy.

00:13:59.919 --> 00:14:12.720
And I know it's hard as a young person, which you are, having to use something like that, or whether you have to use a walker or whatever it is, Kane, whatever you would use.

00:14:13.279 --> 00:14:17.679
I know that you have always been willing to use an assistive device if you needed it.

00:14:17.840 --> 00:14:19.840
You sort of let your ego go.

00:14:20.000 --> 00:14:22.080
You accepted it, correct?

00:14:22.480 --> 00:14:28.159
Not necessarily saying you liked it, but you have been an acceptance of it.

00:14:28.480 --> 00:14:46.320
Yes, it's something that I remember an old climbing partner of mine talking about when he was sort of mocking folks that dressed up like climbers but didn't go climbing.

00:14:46.960 --> 00:14:57.759
He said, it's better to be out there doing something cool than looking like you're doing something cool, but not actually.

00:14:59.200 --> 00:15:00.399
I like that.

00:15:00.639 --> 00:15:21.039
So I've always figured that I may be wearing a diaper or toting a cane or in a fucking electric wheelchair, but damn it, I'm gonna show up and do the cool shit instead of being at home where no one can see me anyway.

00:15:21.519 --> 00:15:24.799
What, looking like I'm doing cool shit?

00:15:25.120 --> 00:15:25.440
No.

00:15:26.159 --> 00:15:28.399
No, not that's not you.

00:15:28.639 --> 00:15:28.960
No.

00:15:29.440 --> 00:15:31.759
So you had the wheelchair at the house.

00:15:31.919 --> 00:15:34.480
So let's kind of look at the progression now.

00:15:34.639 --> 00:15:41.759
You came home, and we're gonna go back like two years, in two years from July.

00:15:42.080 --> 00:15:50.720
You and I were in Barcelona for the World Parkinson's Congress, and we saw a lot of cool stuff there, so many different things.

00:15:50.879 --> 00:15:54.799
And I'm gonna give a shout out to Olgock and the new shoes people.

00:15:54.960 --> 00:15:59.519
We met them, we saw the infrared, that was pretty great.

00:15:59.840 --> 00:16:00.720
Yeah, the light.

00:16:01.279 --> 00:16:04.080
The light, the light helmet that looked so cool.

00:16:04.320 --> 00:16:04.559
Yeah.

00:16:04.799 --> 00:16:07.840
You know, I mean, we saw a lot of things, glasses.

00:16:08.000 --> 00:16:11.840
There were so many assistive devices that were so interesting.

00:16:12.320 --> 00:16:16.399
And some of them have made it to the States and some had not.

00:16:16.799 --> 00:16:18.240
But there was talk.

00:16:18.399 --> 00:16:35.279
And I think for those of you that are really digging deep into what's new with Parkinson's and what's available to you, you know that this year there's been a lot of movement within delivery systems, subcutaneous, sublingual.

00:16:35.440 --> 00:16:39.360
There's so many new ways to get carbidopa, levadopa.

00:16:39.840 --> 00:16:44.399
And so at that time, a lot of it was still being tested in Europe.

00:16:44.559 --> 00:16:46.320
It was not here in the States.

00:16:46.720 --> 00:16:47.279
Right.

00:16:47.600 --> 00:16:58.720
Because we have the Food and Drug Administration who, for all the good that they do, they don't do it particularly quickly.

00:16:59.039 --> 00:17:02.080
No, seven to ten years to get anything to the market.

00:17:02.159 --> 00:17:08.960
It's sort of agonizing to see how long it takes them to get things to market.

00:17:09.119 --> 00:17:13.599
It's stressful for the patients when you realize how long it takes.

00:17:13.920 --> 00:17:24.960
So I think with keeping that in mind, I think that you had a lot of different things that you saw and you thought were pretty cool and you know you tested them out when you were there.

00:17:25.279 --> 00:17:32.000
And so now, two years later, you see yourself really losing ground.

00:17:32.079 --> 00:17:35.599
You feel like your Parkinson's has really progressed quite a bit.

00:17:35.680 --> 00:17:38.799
And it's been 11 years, so it's a progressive disease.

00:17:38.880 --> 00:17:39.519
It makes sense.

00:17:39.599 --> 00:17:41.680
It might progress a bit here or there.

00:17:41.839 --> 00:17:43.759
And I do want to give some background.

00:17:44.000 --> 00:17:49.680
He eats well, he exercises every day, he plays pickleball, he does mountain climbs.

00:17:49.839 --> 00:17:50.720
What else do you do?

00:17:50.880 --> 00:17:52.559
You do all kinds of things.

00:17:52.720 --> 00:17:59.680
He installs bars, grab bars for friends that have PD that don't have grab bars in their homes.

00:17:59.839 --> 00:18:02.640
He's sort of a jack-of-all trade here.

00:18:03.119 --> 00:18:08.240
And all of a sudden now he's having difficulty doing these things.

00:18:08.559 --> 00:18:15.119
So for you, Travis, I know that you are always researching and looking into new things.

00:18:15.279 --> 00:18:23.759
And you want to be cutting edge in every way from your red and purple hair or your orange hair, whatever you have for the month or week.

00:18:24.000 --> 00:18:32.880
And so you were looking into some of the delivery systems that were available or that were available then, but not really available to us here in the States.

00:18:33.200 --> 00:18:33.680
Right.

00:18:34.000 --> 00:18:48.880
And even if it comes to the States, if it's in the form of a clinical trial, I knew a couple folks who had participated in this when it was a clinical trial.

00:18:49.839 --> 00:18:56.480
And that's great and all, but I was waiting for the real deal to hit the market.

00:18:57.200 --> 00:19:02.079
And I'm not too excited when it comes to new drugs.

00:19:02.480 --> 00:19:31.359
There's not something that generally gets me too excited, but I had progressed from the Carbidoba Levinoba generic cinnamon that I was put on, you know, about 18 months after diagnosis through the various extenders like intacapone and did you ever use Comptan?

00:19:31.599 --> 00:19:32.960
That's another extender.

00:19:33.119 --> 00:19:33.359
Yeah.

00:19:33.680 --> 00:19:40.400
Yeah, Comptan and some of the adjunct anti-agonists, maybe?

00:19:40.640 --> 00:19:42.480
Agonist, dopamine agonist.

00:19:43.279 --> 00:19:44.960
Not anti-agonist, the agonist.

00:19:45.200 --> 00:19:45.359
Okay.

00:19:45.519 --> 00:19:45.759
Yeah.

00:19:46.240 --> 00:19:49.519
That we hear so many horror stories about.

00:19:49.599 --> 00:20:08.079
And I pretty well settled on an extended release, carbonoba levadoba in the form of Ritari, and an agonist in the form of the new Pro Patch, which is brand name of Ripinerol?

00:20:08.480 --> 00:20:11.119
No, it's Rip Sagelline.

00:20:11.279 --> 00:20:12.640
Oh, Risagelline, right.

00:20:12.799 --> 00:20:14.240
Okay, Risagelline.

00:20:14.640 --> 00:20:21.599
And I'd been on those for a long time, and I eat a lot of those pills in the day.

00:20:21.920 --> 00:20:22.160
Right.

00:20:22.400 --> 00:20:24.960
Can we even talk about that a little bit, Travis?

00:20:25.519 --> 00:20:31.680
I I want to say, because I hear people in groups go, oh, I'm taking so many cinnamon.

00:20:31.759 --> 00:20:34.000
I take two, three times a day.

00:20:34.079 --> 00:20:36.000
I'm taking six pills a day.

00:20:36.240 --> 00:20:39.359
Can you just say how many cinnamon you've taken?

00:20:39.440 --> 00:20:46.400
What has been the max you've ever taken in a day for a week or two, or a lot, or even a month or two, or a year or two?

00:20:46.559 --> 00:20:49.200
What has been your max of cinnamon in a day?

00:20:49.599 --> 00:20:55.359
Regular cinnamon, I was taking 24 a day.

00:20:55.920 --> 00:20:56.559
Yep.

00:20:56.880 --> 00:21:05.519
And I had the horrible nausea that about one-fourth of the people taking Cinemat get.

00:21:06.079 --> 00:21:18.000
And so I was taking the pills, throwing up violently, projectile vomiting, taking more pills, projectile vomiting again.

00:21:18.319 --> 00:21:22.400
And that's when I got DBS the first time.

00:21:22.880 --> 00:21:24.559
The first time, okay.

00:21:24.880 --> 00:21:32.880
Because I was looking for any option at that point that was not just another fucking pill.

00:21:33.200 --> 00:21:33.759
Right.

00:21:34.000 --> 00:21:39.920
And at that point, Travis, when you had your DBS, it was pretty successful for you, yes?

00:21:40.480 --> 00:21:44.000
I worked with my teams.

00:21:44.160 --> 00:21:45.599
Uh Plural.

00:21:45.839 --> 00:21:46.480
Teams.

00:21:46.640 --> 00:21:49.359
I just want to emphasize that a little.

00:21:49.599 --> 00:21:50.319
Plural.

00:21:50.559 --> 00:22:05.519
I worked for about four years to get a DBS system dialed in to be as good as I feel like it can be.

00:22:05.920 --> 00:22:06.240
Okay.

00:22:06.880 --> 00:22:20.880
And that took me two different DBS units, two brain surgeries, and a whole lot of programming sessions.

00:22:21.039 --> 00:22:25.440
I mean, like, I was in there every two weeks for six months.

00:22:25.759 --> 00:22:26.240
Right.

00:22:26.480 --> 00:22:34.960
So for those of you that think that you get DBS and they start it and it's it's perfect, no, no, no, no, no.

00:22:35.119 --> 00:22:42.720
It is a process and it is timing, and you have to fine-tune it and then fine-tune it again.

00:22:43.279 --> 00:22:50.160
And with each fine-tuning, you may have other symptoms that may pop up, right?

00:22:50.720 --> 00:22:51.279
Right.

00:22:51.599 --> 00:22:57.839
And the DBS may even cause some of those symptoms.

00:22:58.079 --> 00:22:58.240
Right.

00:22:58.720 --> 00:23:07.920
The first unit I had had a distinct and decisive impact on my speech.

00:23:08.559 --> 00:23:26.160
It warbled my speech because the subtelemic nucleus, for those of you who may not be up on your brain anatomy, is right next door to the voice capsule, which is the part of the brain that controls speech.

00:23:26.799 --> 00:23:27.440
Yes.

00:23:27.759 --> 00:23:52.960
And so if you have a slightly out-of-alignment deep brain stimulator, or if it's just too broad of a stimulation pattern, or too strong of a stimulation pattern, it can mess with your voice, and you can end up talking Charlie Brown's fucking teachers.

00:23:53.359 --> 00:23:54.000
Yes.

00:23:54.319 --> 00:24:07.599
So then you're in this devil can take situation where you're trying to improve your PD symptoms, but you're also trying to not make your voice worse.

00:24:08.079 --> 00:24:30.079
Because we just started this episode talking about how that compounds your PD symptoms and further isolates you, further impacts all your relationships because your friends, even when they do like you, they don't want to hang around with someone that can't talk back.

00:24:31.200 --> 00:24:31.839
Yes.

00:24:34.880 --> 00:24:41.119
So with that said, okay, you had a pretty good run for a while.

00:24:41.359 --> 00:24:42.000
Yes.

00:24:42.400 --> 00:24:43.759
With your DBS.

00:24:44.559 --> 00:24:52.000
And and I know that you've always been a big proponent of it, that it really helped you, and without it, you would have been terrible.

00:24:52.160 --> 00:24:54.319
You knew that you would be really terrible.

00:24:54.640 --> 00:24:59.440
Yes, and and I'm still of that belief and mindset.

00:25:00.160 --> 00:25:00.480
Okay.

00:25:00.799 --> 00:25:13.200
And my team, as it is today, still uses the D-brain stimulation as another axes for treatment.

00:25:13.519 --> 00:25:13.839
Right.

00:25:14.000 --> 00:25:14.960
It is a treatment.

00:25:15.119 --> 00:25:17.920
So this is what we want people to understand.

00:25:18.079 --> 00:25:21.440
It's not going to cure, it is a treatment.

00:25:21.680 --> 00:25:30.480
It's no different than them adding if they were going to give you another set of pills or a different cocktail to take on a daily basis.

00:25:30.640 --> 00:25:31.920
It is a tool.

00:25:32.160 --> 00:25:32.559
Right.

00:25:32.720 --> 00:25:34.720
It is a powerful treatment tool.

00:25:35.119 --> 00:25:35.839
Very powerful tool.

00:25:36.160 --> 00:25:42.640
And one that has profound and very fast effects, which is something I like.

00:25:42.799 --> 00:25:50.640
It's not like the doctor gives you a new pill and says, take this for two weeks and see if it gets better.

00:25:50.880 --> 00:25:51.200
Correct.

00:25:51.440 --> 00:25:59.599
You know, I walk into the DBS office and I can walk out feeling the change.

00:25:59.920 --> 00:26:01.599
So that's very significant.

00:26:01.839 --> 00:26:07.039
So now we've established that DBS has really been one of the best things for you.

00:26:07.279 --> 00:26:07.680
Right.

00:26:07.839 --> 00:26:20.799
And those of you that started with us early on, I just want to make this point again that when Travis told me he wanted to do a podcast, I looked at him and said, What?

00:26:21.119 --> 00:26:22.720
Are you fucking crazy?

00:26:22.880 --> 00:26:24.160
Like you what?

00:26:24.720 --> 00:26:26.000
A podcast?

00:26:26.480 --> 00:26:27.440
And he said yes.

00:26:28.240 --> 00:26:30.559
You were thinking, what are we going to call it, Mr.

00:26:30.720 --> 00:26:32.480
Mumbles and Friends?

00:26:32.799 --> 00:26:40.079
I mean, speaking clearly was not in my wheelhouse at that time.

00:26:40.400 --> 00:26:42.240
No, it really wasn't.

00:26:42.559 --> 00:26:44.559
But you made a lot of strides.

00:26:44.720 --> 00:26:48.880
I mean, you started working very closely with speech pathologists.

00:26:49.119 --> 00:26:52.000
You went into the Parkinson's Voice Project.

00:26:52.079 --> 00:26:56.160
I mean, you really have put your time into this, Travis.

00:26:56.400 --> 00:27:03.119
And not without it showing a lot of amazing results because you were doing very, very well there.

00:27:03.599 --> 00:27:07.440
So I would say it all really paid off for you.

00:27:07.680 --> 00:27:13.920
But now let's fast forward to a couple of weeks ago or a month ago.

00:27:14.160 --> 00:27:16.000
Actually, it was two months ago.

00:27:16.160 --> 00:27:18.240
It was April when you, or June.

00:27:18.400 --> 00:27:22.640
It was in June when you were at an event, a PCLA event.

00:27:22.799 --> 00:27:24.799
We'll give a little plug here for PCLA.

00:27:24.960 --> 00:27:26.720
There are the lunch and learn.

00:27:26.880 --> 00:27:29.440
We had this amazing lunch and learn with Dr.

00:27:29.599 --> 00:27:34.079
Ray Dorsey talking environmental issues and Parkinson's.

00:27:34.400 --> 00:27:40.960
And you happened to come upon a table of one of the pharmaceutical companies.

00:27:41.119 --> 00:27:43.200
So you want to mention this?

00:27:43.680 --> 00:27:52.240
Yeah, it was the pharmaceutical company, Abby, who makes a lot of PD drugs.

00:27:52.880 --> 00:28:06.240
And they probably more specifically to this conversation, they made the Duoba pump, which is because it's still available and you can still get it.

00:28:06.400 --> 00:28:06.720
Yes.

00:28:06.960 --> 00:28:16.720
It is an intratestinal delivery system of carbonoba levatopa.

00:28:17.039 --> 00:28:17.279
Yes.

00:28:17.519 --> 00:28:19.759
And let me be real specific.

00:28:20.480 --> 00:28:27.279
There is an operation where they put a tube into your small intestine.

00:28:27.519 --> 00:28:28.640
It's like a port.

00:28:28.880 --> 00:28:32.480
And then they have a little port on the side of your abdomen.

00:28:32.720 --> 00:28:33.119
Yes.

00:28:33.440 --> 00:28:39.680
That you can never go swimming with or be submerged in a body of water.

00:28:39.920 --> 00:28:40.480
Yes.

00:28:40.799 --> 00:28:45.119
And poses a lifetime infection risk.

00:28:45.440 --> 00:28:46.000
Right.

00:28:46.319 --> 00:28:52.720
But I just want to say people that are on dialysis oftentimes have that same type of port.

00:28:53.119 --> 00:28:59.920
There are many different medical conditions where people have to have this peg put in.

00:29:00.240 --> 00:29:04.960
People that have difficulty swallowing sometimes get a peg to help with that.

00:29:05.359 --> 00:29:14.160
It's a G tube, and it's used for a whole lot of things, long-term hospice care, all kinds of things.

00:29:14.480 --> 00:29:35.920
But as someone who's active and likes to go off into the woods where I don't have access to showers and sterile conditions or even clean conditions all the time, and who might be running, jumping, climbing trees, and scrambling over rocks and mountains.

00:29:36.160 --> 00:29:43.920
I didn't want anything that could, you know, snag my intestine dangling out of me.

00:29:44.160 --> 00:29:44.799
Yes.

00:29:45.839 --> 00:29:54.480
And so I was very interested when the rap told me about this new system that they had.

00:29:54.960 --> 00:29:59.839
It was the same that I had heard about in Barcelona.

00:30:00.559 --> 00:30:05.839
And it's going by the trade name Biolev in the state.

00:30:06.079 --> 00:30:13.680
And just so you know, we're not paid by Avi, and we are not endorsing the product in that way.

00:30:13.839 --> 00:30:16.720
But Travis, I just want to do a little disclaimer here.

00:30:16.960 --> 00:30:21.599
Travis is expressing his experience with the drug.

00:30:22.160 --> 00:30:23.599
And personal opinion.

00:30:24.160 --> 00:30:25.200
And personal opinion.

00:30:25.519 --> 00:30:27.519
So I just want to be clear about that.

00:30:27.759 --> 00:30:40.400
Yes, they have not paid me or asked me or even know that I am talking about the drug, and they may or may not be happy about it when I'm done talking.

00:30:40.640 --> 00:30:41.119
Right.

00:30:41.359 --> 00:30:44.319
So yeah, there's for that.

00:30:44.799 --> 00:30:52.480
But I heard that it had gotten FDA approval as of October 20th, 2024.

00:30:53.519 --> 00:30:56.160
So this was actually in April.

00:30:56.480 --> 00:31:02.079
So it was just about six months since it had hit the U.S.

00:31:02.079 --> 00:31:02.400
market.

00:31:03.039 --> 00:31:03.519
Right.

00:31:03.839 --> 00:31:14.160
Well, I'm not one to dig around when it comes to treatment that I want that I zoom in on and decide is right for me to try.

00:31:14.400 --> 00:31:32.960
So I reached out to my friends in the PD community and found three or four of them who had been on this contraption because it's not just a drug, it's a drug delivery system, it's a whole treatment package.

00:31:33.359 --> 00:31:33.680
Right.

00:31:33.839 --> 00:31:34.000
Okay.

00:31:34.400 --> 00:31:35.039
Very similar.

00:31:35.200 --> 00:31:40.799
Can we say that it's similar to when people use an insulin pump?

00:31:41.039 --> 00:31:43.519
It has certain qualities to that.

00:31:43.680 --> 00:31:44.799
I've heard people say that.

00:31:45.200 --> 00:31:49.680
That might be wrong, but I've heard people describe it that it's similar.

00:31:50.000 --> 00:31:52.400
Yes, and maybe in size.

00:31:52.799 --> 00:31:53.279
Right.

00:31:53.519 --> 00:32:12.799
If that's the thing that you can recognize and picture in your head is if you know a diabetic who has this little thing that sticks from a tube into his gut, then on the outside, yes, that is very similar.

00:32:13.119 --> 00:32:13.440
Okay.

00:32:13.920 --> 00:32:18.720
Just to give people a visual of what it's like the size and what it's similar to.

00:32:18.880 --> 00:32:19.200
Okay.

00:32:19.440 --> 00:32:52.960
And so I talked to a few of my parky friends to get their first person experience, including one that had the same type of dystonia that I had with the face cramps that used to pull my mouth out of shape, which made it hard for me to talk because there was like it felt like I had been hooked by a fishing hook and was getting my tongue yanked sideways and my face off and to the left.

00:32:53.279 --> 00:33:01.279
And she had told me that it was a real game changer, and I could see that when I video conferenced with her.

00:33:09.200 --> 00:33:17.920
And so I went to my movement disorder specialist, whom I have a great relationship with.

00:33:18.400 --> 00:33:19.599
He's awesome.

00:33:19.920 --> 00:33:27.759
And I told him, I said, Hey doc, what steps do I need to take to get on this here Violev?

00:33:28.480 --> 00:33:31.359
And he said, You want to do that?

00:33:31.839 --> 00:33:35.599
Okay, we'll file the paperwork for you.

00:33:35.920 --> 00:33:40.240
Because it's not covered by any drug program.

00:33:41.119 --> 00:33:43.039
Hmm, this is a big one.

00:33:43.279 --> 00:33:48.480
It's not even considered a drug by the drug program.

00:33:49.200 --> 00:33:50.559
That's interesting.

00:33:50.799 --> 00:33:56.000
Yes, it's covered under my Medicare Part A.

00:33:56.640 --> 00:33:59.039
Okay, not for hospitals.

00:33:59.359 --> 00:33:59.680
Oh.

00:34:00.640 --> 00:34:08.559
Because it's considered an infusion system that you have to get under the care of a doctor.

00:34:09.280 --> 00:34:15.760
So similar to the treatments that you get for MS or even dialysis, really.

00:34:40.239 --> 00:34:52.159
So dialysis might be a strong analogy, but I think it's a little between the insulin pump and the dialysis.

00:34:52.559 --> 00:34:52.880
Okay.

00:34:53.440 --> 00:35:07.840
I know about dialysis a little bit because of my mom, and I did have to administer it for her, and it was a scare, it was scary to do that, the risk of infection and everything, because that was invasive, and she did have a port.

00:35:07.920 --> 00:35:15.360
And I always felt when I was changing the dialysis bag, I always felt like I could kill my mother if I do this wrong.

00:35:16.320 --> 00:35:18.960
One one little thing and I could take her out.

00:35:19.199 --> 00:35:22.400
So it was it was a very tense time doing that.

00:35:22.639 --> 00:35:26.960
But now this particular experience is not like that.

00:35:27.280 --> 00:35:32.000
And I think that's what's making this treatment more inviting.

00:35:32.159 --> 00:35:35.199
It doesn't have that infection factor, I think, right?

00:35:35.519 --> 00:35:43.760
It doesn't have the hole in your abdomen to the abdominal part.

00:35:44.079 --> 00:35:44.400
Okay.

00:35:45.119 --> 00:35:52.639
It does rely on subcutaneous canola, is the word that they use.

00:35:52.880 --> 00:35:53.519
Yes.

00:35:53.840 --> 00:36:08.239
Which, if you can imagine getting a shot from a small gauge needle, you know, one of the very fine needles that stays in you.

00:36:09.039 --> 00:36:10.719
24 7.

00:36:12.239 --> 00:36:23.199
So it's a plastic needle, if that brings anyone any comfort, but it's a needle that stays in you.

00:36:24.079 --> 00:36:26.559
So there is But it goes under the skin.

00:36:26.639 --> 00:36:32.000
It's not penetrating deep into the fatty tissue and everything, right?

00:36:32.239 --> 00:36:32.559
Right.

00:36:32.719 --> 00:36:36.800
It's just under the skin into the belly fat.

00:36:37.280 --> 00:36:37.599
Okay.

00:36:38.079 --> 00:36:40.559

EP-133 Wheels, Words, and Willpower

Listen On

Featured Episodes

Recent Episodes

Interviews Episodes

Browse episodes by category

New to the podcast?

EP-90 Faces of Parkinson’s: Mr. Burns

EP-88 Our Origin Story

EP-87 Faces of Parkinson’s - Michelle Sheppard

EP-100 Episode 100!

EP-104 StrivePD, A conversation with Hannah Timm

EP-105 Strollling along in my augmented reality.

EP-110 Holding space for the dying