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

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
  
  
  

Episode Transcript

SPEAKER_00 (00:01):
Welcome to I'm Not Dead Yet with Judy and Travis, a
podcast about living anextraordinary life with
extraordinary circumstances.

SPEAKER_02 (00:16):
And that actually led me, Judy, to one of the more
interesting aspects of havingPD.
And it's not me having PD thatcauses this, but it's what makes
it so easy for me to see ispeople remember you as a certain

(00:42):
way, and it takes them a reallylong time and a lot of
information to update that ideaof who you are.
People they come to their first,second, third impressions or
whatever, but particularly ifthey've known you for any length

(01:02):
of time, they get this mentalimage of who you are, how you're
going to react to a certainthing, what you're likely to say
if they ask you a question.
That idea of who you are becomessuperimposed on who you actually

(01:22):
are.
And so if you're in any positionof change, good, bad, physical,
mental, it takes them a whileand it can really throw them off
when their mental idea of whoyou are doesn't line up with the

(01:43):
physical reality of who you are.
And I notice this every time I'dhave a new symptom or a symptom
change.
Friends of mine that I've knownfor years, good people, they
even like me.

(02:04):
Right.
They would have the hardest timeadapting to, well, maybe I could
do that yesterday, but that'snot today.
Right.
And today is where I am, and Ihave to have help on it today.
Or if I had help on ityesterday, they're jumping up to

(02:28):
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 earliertoday, even in the support
group, folks were like, I didn'teven realize who you were.

(02:49):
Because I don't sound the same.
And it takes them a while toreconcile that this new Travis
is the same as old Travis.
Right.
Just with a better speechpattern.
Right.
Who can just talk without havingto wait a long time?

SPEAKER_01 (03:18):
Yes, there you go.
It was a remarkable difference,Travis.
And I saw as people start andfor myself, I was going like,
what the fuck?
Like, what's going on here?
And that's why I asked, what'sgoing on?
Because there was clearlysomething had changed for you.

(03:39):
And so you haven't had thatdystonia, am I correct?
At least in the face.
Not much.
Not much.

SPEAKER_02 (03:46):
Not much.
It it still flutters and it'sstill there, if that makes
sense.
Yes.
But it makes perfect sense.
It doesn't affect me as often oras severely.

SPEAKER_01 (04:02):
Right.
That severe pulling that youwould get in your face when you
could not speak.
Right.
The long pauses.
Which, as listeners, you mayhave noticed there was a pause,
but I can tell you that thatpause was not the real pause.
It may not have lasted as longas the real pause when he was

(04:24):
really having difficultyspeaking.

SPEAKER_02 (04:26):
Yes, and it's also the kind of thing that because
it was Destonia-based, and theresult of severe cramps in my
face, there was not a whole lotthat I could speech therapy my

(04:47):
way around.
No.
And it was the kind of thingthat regardless of how much I
practiced or how often I did myvoice exercises, I would go in
for tweaks to the DBS system,and that would sometimes help it
a bit.
Because it really was a corepart of the PD that was

(05:12):
affecting the voice and not someaxillary, like, oh, it's his
DBS, it's ruining his voice.
And so when the PD symptoms gotworse, the voice got worse with
it.
And if I was having a hard time,like if I was on a big hard

(05:34):
climb, my voice dropped to awhisper.
And that is really a less thanideal situation when you're in
the mountains and people are faraway, and there's a lot of wind
and other noises.

SPEAKER_01 (05:50):
Right.
They can't hit you.

SPEAKER_02 (05:53):
And if they can, all they hear is Charlie Brown's
teacher shouting at them.
So I want to say that again, I'monly five days, you know,
wrapping up my fifth day on thisstuff.
And these results may not last,and they may improve or they may

(06:18):
get worse.
Right.
Or other fun things might comedown the pipe.

SPEAKER_01 (06:25):
Right.
You don't know what you're goingto get with this.
That's the reality.
There's no guarantees, there'sno promises that it will stay
like this.
But for right now, you're havinga very good result.

SPEAKER_02 (06:40):
For right now, I think the listeners will agree
that I'm able to say more in ashorter period of time, and that
I'm able to be understood atleast for what I'm saying.
Maybe not what I mean, but youat least understand the words

(07:05):
that are coming out of my mouth.

SPEAKER_01 (07:07):
Yes, I would say that's a hundred percent true.
And I also want to let listenersknow if you've listened to
earlier episodes, we neveraltered Travis's voice.
That was something that we werevery clear about when we started
this podcast.
From day one.
From day one, we were not goingto speed up his voice, which

(07:30):
could easily be done inpost-production.
Right.
We were not going to take allthe gaps out.
There were certain times whenthere was a very, if there was
an extremely long gap, we wouldleave it as a long gap, but
maybe not quite as long as thereality of the gap.

(07:50):
But we did not alter thispodcast.
And I remember someone saying,Well, do you is it important for
you to have, you know, listenersfeel it was a it's a good
experience?
And I said, the important thingis for Travis to be true to what
he has going on at any giventime.

SPEAKER_02 (08:11):
Right.
And that's something that youknow listeners can hear from
episode to episode.
I don't even use canned clips ofmy intro.
Right.
And you can tell when I say,This is Travis Robinson.
Welcome to the I'm Not Dead Yetpodcast.
Sometimes that sentence takes me40 seconds to spit out.

(08:37):
Sometimes I have to record ittwo 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 (08:59):
Correct.
And so we made this commitmentthat we would record a few over
the next week so as to give yousome background and see the
progress of what's going on withTravis.
Right.
In as close to real time as wecan do.
Yeah, as close to real time.
And we're committed to doingthat for you.

(09:21):
We're doing it for you.
We're doing it for ourselves.
And I think it's an importantstep 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 clinicaltrials where you have a team of

(09:42):
researchers and doctors andnurses and therapists watching
you and making comments andtracking data.
But this is Travis's data point.
This is where he is going to betracking the data.
So, as a listener, you get to bepart of this.

(10:03):
And I feel excited about it as aparticipant that we're kind of
doing this together.
It's really fascinating to me towatch this happen.
And I am hoping that it's goingto stick.
I'm hoping this is the futurefor Travis and that that
wheelchair just stays off in acorner somewhere and doesn't get

(10:25):
used.

SPEAKER_02 (10:26):
Collecting dust, at least until I can work it into a
rally-go-kart.

SPEAKER_01 (10:32):
Right, exactly.
So with that said, Travis, Iwant to thank you for always, I
mean, always, being willing toshare the good, the bad, and the
ugly with our listeners.
And hopefully some people mighthave been scared off somewhere

(10:56):
along the way, or maybe theyhave really enjoyed listening to
it and they feel the benefit ofhearing you go through some of
the more difficult andchallenging times that you've
had.
But I think the reality of thisbeing your journey and you
sharing it with the world is soimportant.

(11:17):
And I'm sure so many peoplereally appreciate it.
I know that I appreciate it as apodcast partner with you that
you've allowed me to be doingthis with you.
It means so much to me.
And I'm truly grateful for it.

SPEAKER_02 (11:31):
Well, thank you.
And thank you to any listenersthat stuck around this far to,
you know, uh tough it outthrough the listening
experience.
And that's why we're going tocram as much content as we can

(11:52):
into the next few whatevers, andhopefully this last.

SPEAKER_01 (11:58):
Yes.
And I do want to give a plug forwhat's coming up.
Okay.
Since we are on the PCLA websitenow, that September 14th is the
Life Beyond the GardenConference.
And the theme this year is thegarden cultivating and nurturing
a life of joy with Parkinson's.

(12:20):
So that's coming up September14th.
And then on I'm Not Dead Yetpodcast, we're really excited to
let you know that we will bedoing a three-part series with
Dr.
Doe Gold, a neuropsychologisthere in Los Angeles.
And he will be sharing thoughtsand treatments and ideas.

(12:42):
We'll be having some veryin-depth conversations with him
about stress, relationships.
What else?
I think that probably is enough.
I could cover a whole year, butI think it'll should be really
exciting.
And we're we're looking forwardto doing that in the future.
So watch for that as well.
So, Travis, on that note, that'sa wrap.