I'm Not Dead Yet!

EP-134 The Unexpected Gift of New Speech PART 2/2

• Judy Yaras & Travis Robinson • Season 4

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Something extraordinary has happened. After five days on a new medication, Travis's speech has transformed dramatically. Gone are the long pauses, the facial dystonia, and the whisper-quiet voice that made mountain climbs particularly challenging. Listeners familiar with Travis's speech patterns will immediately notice the difference – and no, we haven't edited a thing.

This transformation highlights a fascinating psychological phenomenon Travis has observed throughout his Parkinson's journey. People form mental images of who we are that become remarkably resistant to change. "People remember you as a certain way, and it takes them a really long time and a lot of information to update that idea of who you are," Travis explains. This creates a strange disconnect when someone experiences significant physical changes, as others struggle to reconcile their established mental picture with the person's current reality. Friends who've known Travis for years sometimes offer help when he doesn't need it, while missing moments when assistance is genuinely required.

While this speech improvement represents a potentially significant breakthrough, both hosts maintain a grounded perspective. "These results may not last, and they may improve or they may get worse," Travis acknowledges. There are "no guarantees, no promises that it will stay like this." Yet the possibility that this improvement might continue offers hope – perhaps that wheelchair will stay collecting dust in the corner. We're documenting this "personal clinical trial" in real-time through upcoming episodes, allowing listeners to witness this journey as it unfolds. Don't miss our upcoming two-part series with neuropsychologist Dr. Dov Gold, where we'll dive deep into stress, relationships, and more aspects of living with Parkinson's. Subscribe now to follow this remarkable journey and join our conversation about living an extraordinary life with extraordinary circumstances.

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


SPEAKER_00:

Welcome to I'm Not Dead Yet with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.

SPEAKER_02:

And that actually led me, Judy, to one of the more interesting aspects of having PD. And it's not me having PD that causes this, but it's what makes it so easy for me to see is people remember you as a certain way, and it takes them a really long time and a lot of information to update that idea of who you are. People they come to their first, second, third impressions or whatever, but particularly if they've known you for any length of time, they get this mental image of who you are, how you're going to react to a certain thing, what you're likely to say if they ask you a question. That idea of who you are becomes superimposed on who you actually are. And so if you're in any position of change, good, bad, physical, mental, it takes them a while and it can really throw them off when their mental idea of who you are doesn't line up with the physical reality of who you are. And I notice this every time I'd have a new symptom or a symptom change. Friends of mine that I've known for years, good people, they even like me. Right. They would have the hardest time adapting to, well, maybe I could do that yesterday, but that's not today. Right. And today is where I am, and I have to have help on it today. Or if I had help on it yesterday, they're jumping up to help me. It's like I got it, I'm cool. And they're like, You sure, man? Yeah, today I'm great. Yes. And so I've noticed earlier today, even in the support group, folks were like, I didn't even realize who you were. Because I don't sound the same. And it takes them a while to reconcile that this new Travis is the same as old Travis. Right. Just with a better speech pattern. Right. Who can just talk without having to wait a long time?

SPEAKER_01:

Yes, there you go. It was a remarkable difference, Travis. And I saw as people start and for myself, I was going like, what the fuck? Like, what's going on here? And that's why I asked, what's going on? Because there was clearly something had changed for you. And so you haven't had that dystonia, am I correct? At least in the face. Not much. Not much.

SPEAKER_02:

Not much. It it still flutters and it's still there, if that makes sense. Yes. But it makes perfect sense. It doesn't affect me as often or as severely.

SPEAKER_01:

Right. That severe pulling that you would get in your face when you could not speak. Right. The long pauses. Which, as listeners, you may have noticed there was a pause, but I can tell you that that pause was not the real pause. It may not have lasted as long as the real pause when he was really having difficulty speaking.

SPEAKER_02:

Yes, and it's also the kind of thing that because it was Destonia-based, and the result of severe cramps in my face, there was not a whole lot that I could speech therapy my way around. No. And it was the kind of thing that regardless of how much I practiced or how often I did my voice exercises, I would go in for tweaks to the DBS system, and that would sometimes help it a bit. Because it really was a core part of the PD that was affecting the voice and not some axillary, like, oh, it's his DBS, it's ruining his voice. And so when the PD symptoms got worse, the voice got worse with it. And if I was having a hard time, like if I was on a big hard climb, my voice dropped to a whisper. And that is really a less than ideal situation when you're in the mountains and people are far away, and there's a lot of wind and other noises.

SPEAKER_01:

Right. They can't hit you.

SPEAKER_02:

And if they can, all they hear is Charlie Brown's teacher shouting at them. So I want to say that again, I'm only five days, you know, wrapping up my fifth day on this stuff. And these results may not last, and they may improve or they may get worse. Right. Or other fun things might come down the pipe.

SPEAKER_01:

Right. You don't know what you're going to get with this. That's the reality. There's no guarantees, there's no promises that it will stay like this. But for right now, you're having a very good result.

SPEAKER_02:

For right now, I think the listeners will agree that I'm able to say more in a shorter period of time, and that I'm able to be understood at least for what I'm saying. Maybe not what I mean, but you at least understand the words that are coming out of my mouth.

SPEAKER_01:

Yes, I would say that's a hundred percent true. And I also want to let listeners know if you've listened to earlier episodes, we never altered Travis's voice. That was something that we were very clear about when we started this podcast. From day one. From day one, we were not going to speed up his voice, which could easily be done in post-production. Right. We were not going to take all the gaps out. There were certain times when there was a very, if there was an extremely long gap, we would leave it as a long gap, but maybe not quite as long as the reality of the gap. But we did not alter this podcast. And I remember someone saying, Well, do you is it important for you to have, you know, listeners feel it was a it's a good experience? And I said, the important thing is for Travis to be true to what he has going on at any given time.

SPEAKER_02:

Right. And that's something that you know listeners can hear from episode to episode. I don't even use canned clips of my intro. Right. And you can tell when I say, This is Travis Robinson. Welcome to the I'm Not Dead Yet podcast. Sometimes that sentence takes me 40 seconds to spit out. Sometimes I have to record it two or three times so that you understand it. Correct. And today is no different. We're doing no tricks and posts, no editing sleight of hand. This is what it is today.

SPEAKER_01:

Correct. And so we made this commitment that we would record a few over the next week so as to give you some background and see the progress of what's going on with Travis. Right. In as close to real time as we can do. Yeah, as close to real time. And we're committed to doing that for you. We're doing it for you. We're doing it for ourselves. And I think it's an important step in this process of, you know, as he is testing the drug, because this is Travis's personal clinical trial. You know, you might do clinical trials where you have a team of researchers and doctors and nurses and therapists watching you and making comments and tracking data. But this is Travis's data point. This is where he is going to be tracking the data. So, as a listener, you get to be part of this. And I feel excited about it as a participant that we're kind of doing this together. It's really fascinating to me to watch this happen. And I am hoping that it's going to stick. I'm hoping this is the future for Travis and that that wheelchair just stays off in a corner somewhere and doesn't get used.

SPEAKER_02:

Collecting dust, at least until I can work it into a rally-go-kart.

SPEAKER_01:

Right, exactly. So with that said, Travis, I want to thank you for always, I mean, always, being willing to share the good, the bad, and the ugly with our listeners. And hopefully some people might have been scared off somewhere along the way, or maybe they have really enjoyed listening to it and they feel the benefit of hearing you go through some of the more difficult and challenging times that you've had. But I think the reality of this being your journey and you sharing it with the world is so important. And I'm sure so many people really appreciate it. I know that I appreciate it as a podcast partner with you that you've allowed me to be doing this with you. It means so much to me. And I'm truly grateful for it.

SPEAKER_02:

Well, thank you. And thank you to any listeners that stuck around this far to, you know, uh tough it out through the listening experience. And that's why we're going to cram as much content as we can into the next few whatevers, and hopefully this last.

SPEAKER_01:

Yes. And I do want to give a plug for what's coming up. Okay. Since we are on the PCLA website now, that September 14th is the Life Beyond the Garden Conference. And the theme this year is the garden cultivating and nurturing a life of joy with Parkinson's. So that's coming up September 14th. And then on I'm Not Dead Yet podcast, we're really excited to let you know that we will be doing a three-part series with Dr. Doe Gold, a neuropsychologist here in Los Angeles. And he will be sharing thoughts and treatments and ideas. We'll be having some very in-depth conversations with him about stress, relationships. What else? I think that probably is enough. I could cover a whole year, but I think it'll should be really exciting. And we're we're looking forward to doing that in the future. So watch for that as well. So, Travis, on that note, that's a wrap.

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Travis Robinson

Host