September 27, 2025 • 42 mins
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
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
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):
Welcome to the I'm Not Dead Yet Podcast.
I'm your co-host, TravisRobinson.
I was diagnosed with Parkinson'sdisease at age 35 in 2014.
SPEAKER_01 (00:32):
And I'm Judy Yaris, your other co-host.
My husband Sandy had Parkinson'sdisease for 18 years, and I was
his care partner.
SPEAKER_02 (00:41):
Today's episode we'll be talking about the
Parkinson's disease progressionand how that progression can
impact your relationships, yourself-worth, and all the manifold
areas that PD affects your life.
SPEAKER_01 (01:05):
Right.
This is a really important one,Travis.
And I think that we should startoff by saying, I just want to
point out to some people, if youhave been a listener for a
while, and maybe from day one,way back in 2021 when we
started, which it's hard toimagine that we've been doing it
(01:25):
this long.
I think you've heard Travis atdifferent points where he has
sounded strong.
He has sounded a bit wobbly orguttery sounding, a little bit
what's the correct word I'mlooking for?
I think just difficult tounderstand at times.
Maybe that's a good way todescribe it.
(01:46):
And as a person sitting acrossfrom you, seeing you, I've seen
you when you've been smiling andfeeling good, and I've seen you
when you have been in clearlythe most excruciating pain and
in really like horrible.
So I think for our listenersthat have been with us a long
(02:06):
time, you've seen the ups anddowns that Travis has
experienced with hisParkinson's.
And so tonight we're going toexplore a little bit about
something different.
Number one, you may notice hisvoice sounds a lot stronger.
And we're going to talk a littlebit about what has brought that
(02:26):
on.
And he's kind of laughing at meright now and smiling.
But we're going to take a lookat this.
And we're also going to take alook at what has led to this new
surge of strength that he'sfeeling at the moment.
So let's start off, Travis.
I know we touched on a littlebit in our last episode about
(02:48):
the trip that you had been inIceland and you had a wonderful
trip, and it was a greatphotography expedition for you.
SPEAKER_02 (02:56):
It was, yes.
SPEAKER_01 (02:58):
And that when you got back, it was really
difficult.
You were having some issues.
SPEAKER_02 (03:04):
It was, yeah.
And it was the kind of thingthat any one given day, any one
given hour things were not thatbad.
But when you took a step backand looked at the summary of
like day-to-day life events, youknow, from falling over trying
(03:26):
to get a piece of pizza, to, youknow, spending an hour folding
laundry so that I didn't fallover while I was doing it.
It was a pretty distinctdecline.
And that's really the only way Ican put it is it wasn't like,
(03:47):
oh, I forgot to take my meds oneday or oh, I didn't exercise one
day.
It was just every day,everything from any point to any
point that you wanted to put anymeasuring stick to sucked that
much more than the precedingday.
SPEAKER_01 (04:09):
Right.
You were just on a spiral ofgoing down.
SPEAKER_02 (04:12):
Yeah.
SPEAKER_01 (04:13):
And I I know because for a bit there, sometimes
Travis and I talk during theweek in between sessions, and he
was like silent.
You know, I didn't hearanything.
So then I got kind of worried,thinking, oh, he must maybe he's
traveling because he he isallowed to go on trips without
telling me, which he doesfrequently.
(04:35):
But um, and that's okay.
You could you're still allowedto do those things.
Uh you have a man of free will.
But I knew that he was somehowgoing through something a little
deeper.
And during this time, I think itwas difficult for you, not only
as your persona, how you seeyourself and the strength that
(04:59):
you bring to the table when youcome to a support group or you
talk to people that you firstmeet, or when you talk to
someone that's asking you aboutDBS and medications.
But I think it really impactshow you feel about yourself.
SPEAKER_02 (05:15):
Oh, sure.
Because one of the key areasthat this downward PD spiral
affected me was in my speech, myvery way of communicating with
the world.
Right.
My interaction platform withpretty much everyone I interact
(05:36):
with from my poodles to mygirlfriend and the listeners of
this show.
If I can't talk to you and haveyou understand me, then I am
trapped and I'm no differentthan somebody locked in a
fucking cage.
SPEAKER_01 (05:57):
Right.
That's so true, Travis.
And I I think that I've heardyou and I've seen you in that
position, and I know howstressful that has to be for
you.
SPEAKER_02 (06:08):
Yes, and it's the thing that I don't think a lot
of folks without direct firstperson experience with PD can
really wrap their head around.
It's like, oh, your handshake,so that must suck.
It's like, no, man, myhandshake, so I can't type and I
(06:29):
can't write.
And then when my voice startswobbling too badly, I can't even
use the speech to text featureson my phone or my computer, and
then I get real upshit creakreal fast because when I ask
someone for help, they can'tunderstand me.
(06:53):
And the waiter starts looking atmy girlfriend when I ordered.
Like, what will your retardedfucking stepson be having today?
You know, it's really impactful,not only in how I'm treated, but
even in the perception of howI'm treated by other people.
(07:16):
No friends get angry at waiterson my behalf.
SPEAKER_01 (07:22):
Right.
And that has to be a difficultposition for you, Travis, as an
independent person, to feel likeI'll fight my own battles.
I don't want you to fight mybattles, right?
SPEAKER_02 (07:33):
Right.
And that's if I can fight mybattle, I just want to order
fucking dinner, not have afight.
Right.
You know?
SPEAKER_01 (07:43):
Yeah, yeah, I see that.
So I think that you've made thisshift here, and I want to talk a
little bit about it.
So as you saw yourself goingdown this Parkinson spiral and
feeling, I'm assuming that maybeyou felt a little hopeless along
(08:03):
the way.
And you rarely hear that fromTravis, by the way.
If you're a new listener, youmight not know this about
Travis.
But he fights, he doesn't giveup, he is always positive, no
matter how bad it is.
In the next minute, he will findsomething to feel grateful for
and be on to the next step.
(08:25):
And I think that you weren'table to do that this time.
SPEAKER_02 (08:30):
Not really well.
I mean, I'm a strong believer,Judy, in that we always have a
choice, even if we just canchange our outlook, not the
external situation that we'rein.
Right.
We can always change ouroutlook.
But sometimes changing ouroutlook does not do a whole lot
(08:51):
for us.
You know, when you're looking atthe bottom of a ramp that you've
slid down, and at the bottom ofthat ramp is a cliff in the air,
there's just not a whole lot ofways you can spin that to be
positive.
Of course.
You know?
Yeah.
And that's just how it is.
(09:12):
And that was honestly sort ofthe perspective I was starting
to come up with.
Things as we talked about in thelast episode here at the house
had been challenging for me.
Just moving around, doing theADLs, uh, daily living tasks.
SPEAKER_01 (09:34):
Right, feeding the dogs, getting yourself dressed,
going to the bathroom, makingcoffee, making breakfast, making
lunch.
I think Travis moved into a newplace.
It's been what, a month or twosince you've moved into the new
space, and it's a little bitsmaller.
It's good, but it's not ideal.
(09:55):
And so that presented somechallenges for you.
SPEAKER_02 (09:58):
Yes.
And even if the size and thelayout were all fine, there's
the fact that I'm still livingin part boxes because we've had
to replace everything.
Right.
And so getting new furniture, itcomes in boxes, and there's
(10:20):
these huge cardboard piles thatwe have to get rid of once a
week.
We go through this big song anddance to, you know, march out
all the cardboard to the end ofthe curb, you know.
SPEAKER_01 (10:33):
Yes.
SPEAKER_02 (10:34):
And that became so difficult, and I was falling so
often that Sarah was afraid forme to take the fucking trash
out.
SPEAKER_01 (10:45):
Right.
Which has not been an issue foryou up until this point.
SPEAKER_02 (10:50):
Right.
And like I just want toemphasize for folks that don't
know me, I should be able totake the trash out.
That is not high on my level ofphysical prowess, but it was
proving to be too much of achallenge for me to execute
(11:10):
safely.
SPEAKER_01 (11:12):
Right.
So, with that in mind, you hadto make some adjustments.
SPEAKER_02 (11:16):
Yes.
SPEAKER_01 (11:17):
And I think Travis had mentioned to me before we
started this that he had gone onanother photography expedition
and he was away shooting.
And when he came back, Sarah hadsomething there for you at the
house.
Yes.
You wanted what was it?
SPEAKER_02 (11:35):
Well, she she had talked about getting it for
quite a while, and we had bothdecided that it looked like I
would probably need it soonerthan later.
And it was an electric-poweredwheelchair.
A fucking wheelchair.
SPEAKER_01 (11:54):
Right.
Which you have not ever saidthat you felt like you needed
that.
SPEAKER_02 (12:00):
Right.
But you know, when you falleight to ten times in the space
of two hours, you start reallyquestioning whether you're
stable on your feet.
Yes.
And so, always solution-minded,I was looking for ways to get
(12:21):
around that would be a littlesafer, but would also be
realistic for the things that Istill wanted to do.
Of course.
SPEAKER_01 (12:32):
And I also want to point out here, in this
situation, Travis has a partner,a long-term partner.
Right.
So it's not just Travis havingto make this adjustment, it's
Sarah having to make thisadjustment.
So there's a lot of moving partshere with this.
(12:52):
It's not like, oh, honey, we'reordering an electric wheelchair.
No biggie.
Okay.
Right.
That's not the way theconversation goes.
It's a big conversation.
And most people don't want tohave that conversation.
SPEAKER_02 (13:06):
Right.
We didn't want to have thatconversation.
And we had told ourselves that,you know, it would be, you know,
years down the line, regardlessof when that conversation
happened.
It was always many years fromnow.
Whenever now is.
SPEAKER_01 (13:26):
Whenever now is.
SPEAKER_02 (13:28):
Okay.
And the fact of the matter is,is we had that talk again, I
think about a week ago, youknow, before I left on the trip.
And she said, you know, do youthink we need to pull the
trigger on this?
And I said, we might as well,because I don't know when I'm
(13:49):
going to need it.
SPEAKER_01 (13:50):
That was smart.
So, Travis, for you, you haven'talways looked at assistive
devices as your enemy.
And I know it's hard as a youngperson, which you are, having to
use something like that, orwhether you have to use a walker
or whatever it is, Kane,whatever you would use.
(14:13):
I know that you have always beenwilling to use an assistive
device if you needed it.
You sort of let your ego go.
You accepted it, correct?
Not necessarily saying you likedit, but you have been an
acceptance of it.
SPEAKER_02 (14:28):
Yes, it's something that I remember an old climbing
partner of mine talking aboutwhen he was sort of mocking
folks that dressed up likeclimbers but didn't go climbing.
He said, it's better to be outthere doing something cool than
(14:53):
looking like you're doingsomething cool, but not
actually.
I like that.
So I've always figured that Imay be wearing a diaper or
toting a cane or in a fuckingelectric wheelchair, but damn
it, I'm gonna show up and do thecool shit instead of being at
(15:17):
home where no one can see meanyway.
What, looking like I'm doingcool shit?
No.
SPEAKER_01 (15:26):
No, not that's not you.
SPEAKER_02 (15:28):
No.
SPEAKER_01 (15:29):
So you had the wheelchair at the house.
So let's kind of look at theprogression now.
You came home, and we're gonnago back like two years, in two
years from July.
You and I were in Barcelona forthe World Parkinson's Congress,
and we saw a lot of cool stuffthere, so many different things.
(15:50):
And I'm gonna give a shout outto Olgock and the new shoes
people.
We met them, we saw theinfrared, that was pretty great.
SPEAKER_02 (15:59):
Yeah, the light.
SPEAKER_01 (16:01):
The light, the light helmet that looked so cool.
SPEAKER_02 (16:04):
Yeah.
SPEAKER_01 (16:04):
You know, I mean, we saw a lot of things, glasses.
There were so many assistivedevices that were so
interesting.
And some of them have made it tothe States and some had not.
But there was talk.
And I think for those of youthat are really digging deep
into what's new with Parkinson'sand what's available to you, you
(16:27):
know that this year there's beena lot of movement within
delivery systems, subcutaneous,sublingual.
There's so many new ways to getcarbidopa, levadopa.
And so at that time, a lot of itwas still being tested in
Europe.
It was not here in the States.
SPEAKER_02 (16:46):
Right.
Because we have the Food andDrug Administration who, for all
the good that they do, theydon't do it particularly
quickly.
SPEAKER_01 (16:59):
No, seven to ten years to get anything to the
market.
It's sort of agonizing to seehow long it takes them to get
things to market.
It's stressful for the patientswhen you realize how long it
takes.
So I think with keeping that inmind, I think that you had a lot
(17:19):
of different things that you sawand you thought were pretty cool
and you know you tested them outwhen you were there.
And so now, two years later, yousee yourself really losing
ground.
You feel like your Parkinson'shas really progressed quite a
bit.
And it's been 11 years, so it'sa progressive disease.
It makes sense.
(17:39):
It might progress a bit here orthere.
And I do want to give somebackground.
He eats well, he exercises everyday, he plays pickleball, he
does mountain climbs.
What else do you do?
You do all kinds of things.
He installs bars, grab bars forfriends that have PD that don't
have grab bars in their homes.
(17:59):
He's sort of a jack-of-all tradehere.
And all of a sudden now he'shaving difficulty doing these
things.
So for you, Travis, I know thatyou are always researching and
looking into new things.
And you want to be cutting edgein every way from your red and
purple hair or your orange hair,whatever you have for the month
(18:23):
or week.
And so you were looking intosome of the delivery systems
that were available or that wereavailable then, but not really
available to us here in theStates.
SPEAKER_02 (18:33):
Right.
And even if it comes to theStates, if it's in the form of a
clinical trial, I knew a couplefolks who had participated in
this when it was a clinicaltrial.
And that's great and all, but Iwas waiting for the real deal to
(18:55):
hit the market.
And I'm not too excited when itcomes to new drugs.
There's not something thatgenerally gets me too excited,
but I had progressed from theCarbidoba Levinoba generic
cinnamon that I was put on, youknow, about 18 months after
(19:21):
diagnosis through the variousextenders like intacapone and
did you ever use Comptan?
SPEAKER_01 (19:31):
That's another extender.
unknown (19:33):
Yeah.
SPEAKER_02 (19:33):
Yeah, Comptan and some of the adjunct
anti-agonists, maybe?
Agonist, dopamine agonist.
SPEAKER_01 (19:43):
Not anti-agonist, the agonist.
Okay.
Yeah.
SPEAKER_02 (19:46):
That we hear so many horror stories about.
And I pretty well settled on anextended release, carbonoba
levadoba in the form of Ritari,and an agonist in the form of
the new Pro Patch, which isbrand name of Ripinerol?
(20:08):
No, it's Rip Sagelline.
SPEAKER_01 (20:11):
Oh, Risagelline, right.
Okay, Risagelline.
SPEAKER_02 (20:14):
And I'd been on those for a long time, and I eat
a lot of those pills in the day.
SPEAKER_01 (20:21):
Right.
Can we even talk about that alittle bit, Travis?
I I want to say, because I hearpeople in groups go, oh, I'm
taking so many cinnamon.
I take two, three times a day.
I'm taking six pills a day.
Can you just say how manycinnamon you've taken?
What has been the max you'veever taken in a day for a week
(20:43):
or two, or a lot, or even amonth or two, or a year or two?
What has been your max ofcinnamon in a day?
SPEAKER_02 (20:49):
Regular cinnamon, I was taking 24 a day.
Yep.
And I had the horrible nauseathat about one-fourth of the
people taking Cinemat get.
And so I was taking the pills,throwing up violently,
(21:11):
projectile vomiting, taking morepills, projectile vomiting
again.
And that's when I got DBS thefirst time.
SPEAKER_01 (21:22):
The first time, okay.
SPEAKER_02 (21:24):
Because I was looking for any option at that
point that was not just anotherfucking pill.
Right.
SPEAKER_01 (21:34):
And at that point, Travis, when you had your DBS,
it was pretty successful foryou, yes?
I worked with my teams.
Uh Plural.
Teams.
I just want to emphasize that alittle.
SPEAKER_02 (21:49):
Plural.
I worked for about four years toget a DBS system dialed in to be
as good as I feel like it canbe.
Okay.
And that took me two differentDBS units, two brain surgeries,
(22:16):
and a whole lot of programmingsessions.
I mean, like, I was in thereevery two weeks for six months.
SPEAKER_01 (22:25):
Right.
So for those of you that thinkthat you get DBS and they start
it and it's it's perfect, no,no, no, no, no.
It is a process and it istiming, and you have to
fine-tune it and then fine-tuneit again.
And with each fine-tuning, youmay have other symptoms that may
(22:48):
pop up, right?
SPEAKER_02 (22:50):
Right.
And the DBS may even cause someof those symptoms.
Right.
The first unit I had had adistinct and decisive impact on
my speech.
It warbled my speech because thesubtelemic nucleus, for those of
(23:15):
you who may not be up on yourbrain anatomy, is right next
door to the voice capsule, whichis the part of the brain that
controls speech.
Yes.
And so if you have a slightlyout-of-alignment deep brain
stimulator, or if it's just toobroad of a stimulation pattern,
(23:39):
or too strong of a stimulationpattern, it can mess with your
voice, and you can end uptalking Charlie Brown's fucking
teachers.
Yes.
So then you're in this devil cantake situation where you're
(24:00):
trying to improve your PDsymptoms, but you're also trying
to not make your voice worse.
Because we just started thisepisode talking about how that
compounds your PD symptoms andfurther isolates you, further
impacts all your relationshipsbecause your friends, even when
(24:24):
they do like you, they don'twant to hang around with someone
that can't talk back.
SPEAKER_01 (24:31):
Yes.
So with that said, okay, you hada pretty good run for a while.
SPEAKER_02 (24:41):
Yes.
SPEAKER_01 (24:42):
With your DBS.
And and I know that you'vealways been a big proponent of
it, that it really helped you,and without it, you would have
been terrible.
You knew that you would bereally terrible.
SPEAKER_02 (24:54):
Yes, and and I'm still of that belief and
mindset.
Okay.
And my team, as it is today,still uses the D-brain
stimulation as another axes fortreatment.
SPEAKER_01 (25:13):
Right.
It is a treatment.
So this is what we want peopleto understand.
It's not going to cure, it is atreatment.
It's no different than themadding if they were going to
give you another set of pills ora different cocktail to take on
a daily basis.
It is a tool.
SPEAKER_02 (25:32):
Right.
It is a powerful treatment tool.
Very powerful tool.
And one that has profound andvery fast effects, which is
something I like.
It's not like the doctor givesyou a new pill and says, take
this for two weeks and see if itgets better.
Correct.
You know, I walk into the DBSoffice and I can walk out
(25:58):
feeling the change.
SPEAKER_01 (25:59):
So that's very significant.
So now we've established thatDBS has really been one of the
best things for you.
SPEAKER_02 (26:07):
Right.
SPEAKER_01 (26:07):
And those of you that started with us early on, I
just want to make this pointagain that when Travis told me
he wanted to do a podcast, Ilooked at him and said, What?
Are you fucking crazy?
Like you what?
A podcast?
And he said yes.
SPEAKER_02 (26:28):
You were thinking, what are we going to call it,
Mr.
Mumbles and Friends?
I mean, speaking clearly was notin my wheelhouse at that time.
SPEAKER_01 (26:40):
No, it really wasn't.
But you made a lot of strides.
I mean, you started working veryclosely with speech
pathologists.
You went into the Parkinson'sVoice Project.
I mean, you really have put yourtime into this, Travis.
And not without it showing a lotof amazing results because you
(27:01):
were doing very, very wellthere.
So I would say it all reallypaid off for you.
But now let's fast forward to acouple of weeks ago or a month
ago.
Actually, it was two months ago.
It was April when you, or June.
It was in June when you were atan event, a PCLA event.
(27:22):
We'll give a little plug herefor PCLA.
There are the lunch and learn.
We had this amazing lunch andlearn with Dr.
Ray Dorsey talking environmentalissues and Parkinson's.
And you happened to come upon atable of one of the
pharmaceutical companies.
So you want to mention this?
SPEAKER_02 (27:43):
Yeah, it was the pharmaceutical company, Abby,
who makes a lot of PD drugs.
And they probably morespecifically to this
conversation, they made theDuoba pump, which is because
it's still available and you canstill get it.
SPEAKER_01 (28:06):
Yes.
SPEAKER_02 (28:06):
It is an intratestinal delivery system of
carbonoba levatopa.
Yes.
And let me be real specific.
There is an operation where theyput a tube into your small
intestine.
(28:27):
It's like a port.
And then they have a little porton the side of your abdomen.
SPEAKER_01 (28:32):
Yes.
SPEAKER_02 (28:33):
That you can never go swimming with or be submerged
in a body of water.
Yes.
And poses a lifetime infectionrisk.
SPEAKER_01 (28:45):
Right.
But I just want to say peoplethat are on dialysis oftentimes
have that same type of port.
There are many different medicalconditions where people have to
have this peg put in.
People that have difficultyswallowing sometimes get a peg
to help with that.
SPEAKER_02 (29:05):
It's a G tube, and it's used for a whole lot of
things, long-term hospice care,all kinds of things.
But as someone who's active andlikes to go off into the woods
where I don't have access toshowers and sterile conditions
or even clean conditions all thetime, and who might be running,
(29:31):
jumping, climbing trees, andscrambling over rocks and
mountains.
I didn't want anything thatcould, you know, snag my
intestine dangling out of me.
Yes.
And so I was very interestedwhen the rap told me about this
(29:52):
new system that they had.
It was the same that I had heardabout in Barcelona.
And it's going by the trade nameBiolev in the state.
SPEAKER_01 (30:06):
And just so you know, we're not paid by Avi, and
we are not endorsing the productin that way.
But Travis, I just want to do alittle disclaimer here.
Travis is expressing hisexperience with the drug.
And personal opinion.
And personal opinion.
So I just want to be clear aboutthat.
SPEAKER_02 (30:27):
Yes, they have not paid me or asked me or even know
that I am talking about thedrug, and they may or may not be
happy about it when I'm donetalking.
Right.
So yeah, there's for that.
But I heard that it had gottenFDA approval as of October 20th,
(30:51):
2024.
So this was actually in April.
So it was just about six monthssince it had hit the U.S.
market.
Right.
Well, I'm not one to dig aroundwhen it comes to treatment that
I want that I zoom in on anddecide is right for me to try.
(31:14):
So I reached out to my friendsin the PD community and found
three or four of them who hadbeen on this contraption because
it's not just a drug, it's adrug delivery system, it's a
whole treatment package.
Right.
Okay.
SPEAKER_01 (31:34):
Very similar.
Can we say that it's similar towhen people use an insulin pump?
It has certain qualities tothat.
I've heard people say that.
That might be wrong, but I'veheard people describe it that
it's similar.
Yes, and maybe in size.
SPEAKER_02 (31:52):
Right.
If that's the thing that you canrecognize and picture in your
head is if you know a diabeticwho has this little thing that
sticks from a tube into his gut,then on the outside, yes, that
is very similar.
SPEAKER_01 (32:13):
Okay.
Just to give people a visual ofwhat it's like the size and what
it's similar to.
Okay.
SPEAKER_02 (32:19):
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 withthe face cramps that used to
pull my mouth out of shape,which made it hard for me to
(32:41):
talk because there was like itfelt like I had been hooked by a
fishing hook and was getting mytongue yanked sideways and my
face off and to the left.
And she had told me that it wasa real game changer, and I could
see that when I videoconferenced with her.
(33:09):
And so I went to my movementdisorder specialist, whom I have
a great relationship with.
He's awesome.
And I told him, I said, Hey doc,what steps do I need to take to
get on this here Violev?
And he said, You want to dothat?
(33:31):
Okay, we'll file the paperworkfor you.
Because it's not covered by anydrug program.
Hmm, this is a big one.
It's not even considered a drugby the drug program.
That's interesting.
Yes, it's covered under myMedicare Part A.
(33:56):
Okay, not for hospitals.
Oh.
Because it's considered aninfusion system that you have to
get under the care of a doctor.
So similar to the treatmentsthat you get for MS or even
dialysis, really.
(34:40):
So dialysis might be a stronganalogy, but I think it's a
little between the insulin pumpand the dialysis.
SPEAKER_01 (34:52):
Okay.
I know about dialysis a littlebit 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 ofinfection and everything,
because that was invasive, andshe did have a port.
And I always felt when I waschanging the dialysis bag, I
always felt like I could kill mymother if I do this wrong.
(35:16):
One one little thing and I couldtake her out.
So it was it was a very tensetime doing that.
But now this particularexperience is not like that.
And I think that's what's makingthis treatment more inviting.
It doesn't have that infectionfactor, I think, right?
SPEAKER_02 (35:35):
It doesn't have the hole in your abdomen to the
abdominal part.
Okay.
It does rely on subcutaneouscanola, is the word that they
use.
Yes.
Which, if you can imaginegetting a shot from a small
(36:00):
gauge needle, you know, one ofthe very fine needles that stays
in you.
24 7.
So it's a plastic needle, ifthat brings anyone any comfort,
but it's a needle that stays inyou.
SPEAKER_01 (36:24):
So there is But it goes under the skin.
It's not penetrating deep intothe fatty tissue and everything,
right?
SPEAKER_02 (36:32):
Right.
It's just under the skin intothe belly fat.
Okay.
Which is why they recommend it.
The site in their vocabulary ison your belly, because that's
where most folks, or at leastmost men, carry a little extra
(36:52):
subcutaneous matter.
SPEAKER_01 (36:55):
Yes.
So how long ago did you startthis, Travis?
Four days.
Four days.
Five?
Okay.
Yeah.
And did you notice a differenceright away?
Like, was it something where youjust stopped your Ritari and you
started this, or you still weretaking the Ritari?
(37:15):
You still are taking Ritari.
You want to explain thistransition?
SPEAKER_02 (37:20):
Sure.
So the day of, and first let meback up and say that Abby as a
company makes incredibly surethat we as the patients are well
supported.
That one I will give them freeof charge.
(37:40):
Okay.
Make sure that any questions Ihave, any concerns, any thoughts
about questions that I mighthave, and even some that I
don't, are answered in a veryfast and efficient manner.
(38:06):
That's great.
So before Thursday, which iswhen I started this, I was
shipped a book all about how itworks and what to expect.
And then I was sent links tovideos on how to work the pump
system, change the medicationand changed the cannula and all
(38:31):
the other parts of it.
And then, in case I couldn'tfigure it out from a book and a
video, they sent a nurseambassador to my home to explain
it in person.
Which is fantastic.
And to make sure that I could doit.
She actually tested me and hadme show her, walk her through
(38:54):
the whole thing.
Wow.
Backwards and forwards.
And then when I went to mydoctor, they sent yet another
nurse ambassador to the doctor'soffice to make sure he had any
questions he had answered anddialed the settings and you know
(39:17):
tuned it to match.
Because I did stop taking Rotarithat afternoon and haven't taken
it since.
Okay.
So Thursday afternoon at thedoctor's office, I started this
and honestly did not feel thatmuch different.
(39:40):
Thursday night went to bed.
Friday, got up, kind of putteredaround.
It was the inconvenience ofwearing this thing because it is
a like a little fanny pack,right?
Yeah, it's smaller than a breadbox.
Yeah.
About the size of a slim brick.
(40:03):
Not as clunky as a 1985 cellphone, but maybe a 1992 cell
phone.
Okay.
Okay.
You know, if that's good.
Put it in the bird.
That could help.
And Friday I had planned, so Istayed up late packing for this
(40:24):
photo Safari trip.
And I don't know that I feltreal good that day either, but I
didn't feel as bad as I mighthave otherwise, considering how
late I stayed up and how muchstress I'd been under.
And I'd just come back fromanother trip and was planning
(40:47):
this trip.
And it was something that I didsort of notice towards the end
of the night was, hey, I'm notdoing as bad as I think I maybe
should be.
Oh, that's interesting.
SPEAKER_01 (41:01):
So you noticed a little something.
SPEAKER_02 (41:04):
A little something Friday night.
Okay.
About 24 hours in.
All right.
And then Saturday, I got up,packed the car, and with two
friends drove up to the Sierras,where we drove up to 10,000 feet
in elevation, broke out withsome camping and photography
(41:27):
gear, and I was hiking around at10,000 feet, taking photos with
my large format camera.
And I again noticed that Iwasn't doing as badly as I
thought I might be.
SPEAKER_01 (41:45):
So at that point, Travis, you made it through the
weekend, obviously.
SPEAKER_02 (41:51):
Yes.
I came back from my trip, andthat's probably when I started
to feel the changes mostsignificantly Sunday night,
Monday, uh daytime.
I really started to notice theeffects, and particularly in
(42:14):
areas of my speech, which, youknow, is the thing that probably
most affects the listeners andeveryone else who wants to
understand what I'm saying.
And I want to pause here, numberone, because it's getting a
little long for one episode, andwe might even break this into
(42:38):
two.
SPEAKER_01 (42:39):
That's what I was thinking, Travis.
Why don't we why don't we take abreak and we'll come back and
record part two of this episode?
SPEAKER_02 (42:50):
Yeah.
Welcome to I'm Not Dead Yet with Judy and Travis, a
podcast about living anextraordinary life with
extraordinary circumstances.
SPEAKER_02 (00:16):
Welcome to the I'm Not Dead Yet Podcast.
I'm your co-host, TravisRobinson.
I was diagnosed with Parkinson'sdisease at age 35 in 2014.
SPEAKER_01 (00:32):
And I'm Judy Yaris, your other co-host.
My husband Sandy had Parkinson'sdisease for 18 years, and I was
his care partner.
SPEAKER_02 (00:41):
Today's episode we'll be talking about the
Parkinson's disease progressionand how that progression can
impact your relationships, yourself-worth, and all the manifold
areas that PD affects your life.
SPEAKER_01 (01:05):
Right.
This is a really important one,Travis.
And I think that we should startoff by saying, I just want to
point out to some people, if youhave been a listener for a
while, and maybe from day one,way back in 2021 when we
started, which it's hard toimagine that we've been doing it
(01:25):
this long.
I think you've heard Travis atdifferent points where he has
sounded strong.
He has sounded a bit wobbly orguttery sounding, a little bit
what's the correct word I'mlooking for?
I think just difficult tounderstand at times.
Maybe that's a good way todescribe it.
(01:46):
And as a person sitting acrossfrom you, seeing you, I've seen
you when you've been smiling andfeeling good, and I've seen you
when you have been in clearlythe most excruciating pain and
in really like horrible.
So I think for our listenersthat have been with us a long
(02:06):
time, you've seen the ups anddowns that Travis has
experienced with hisParkinson's.
And so tonight we're going toexplore a little bit about
something different.
Number one, you may notice hisvoice sounds a lot stronger.
And we're going to talk a littlebit about what has brought that
(02:26):
on.
And he's kind of laughing at meright now and smiling.
But we're going to take a lookat this.
And we're also going to take alook at what has led to this new
surge of strength that he'sfeeling at the moment.
So let's start off, Travis.
I know we touched on a littlebit in our last episode about
(02:48):
the trip that you had been inIceland and you had a wonderful
trip, and it was a greatphotography expedition for you.
SPEAKER_02 (02:56):
It was, yes.
SPEAKER_01 (02:58):
And that when you got back, it was really
difficult.
You were having some issues.
SPEAKER_02 (03:04):
It was, yeah.
And it was the kind of thingthat any one given day, any one
given hour things were not thatbad.
But when you took a step backand looked at the summary of
like day-to-day life events, youknow, from falling over trying
(03:26):
to get a piece of pizza, to, youknow, spending an hour folding
laundry so that I didn't fallover while I was doing it.
It was a pretty distinctdecline.
And that's really the only way Ican put it is it wasn't like,
(03:47):
oh, I forgot to take my meds oneday or oh, I didn't exercise one
day.
It was just every day,everything from any point to any
point that you wanted to put anymeasuring stick to sucked that
much more than the precedingday.
SPEAKER_01 (04:09):
Right.
You were just on a spiral ofgoing down.
SPEAKER_02 (04:12):
Yeah.
SPEAKER_01 (04:13):
And I I know because for a bit there, sometimes
Travis and I talk during theweek in between sessions, and he
was like silent.
You know, I didn't hearanything.
So then I got kind of worried,thinking, oh, he must maybe he's
traveling because he he isallowed to go on trips without
telling me, which he doesfrequently.
(04:35):
But um, and that's okay.
You could you're still allowedto do those things.
Uh you have a man of free will.
But I knew that he was somehowgoing through something a little
deeper.
And during this time, I think itwas difficult for you, not only
as your persona, how you seeyourself and the strength that
(04:59):
you bring to the table when youcome to a support group or you
talk to people that you firstmeet, or when you talk to
someone that's asking you aboutDBS and medications.
But I think it really impactshow you feel about yourself.
SPEAKER_02 (05:15):
Oh, sure.
Because one of the key areasthat this downward PD spiral
affected me was in my speech, myvery way of communicating with
the world.
Right.
My interaction platform withpretty much everyone I interact
(05:36):
with from my poodles to mygirlfriend and the listeners of
this show.
If I can't talk to you and haveyou understand me, then I am
trapped and I'm no differentthan somebody locked in a
fucking cage.
SPEAKER_01 (05:57):
Right.
That's so true, Travis.
And I I think that I've heardyou and I've seen you in that
position, and I know howstressful that has to be for
you.
SPEAKER_02 (06:08):
Yes, and it's the thing that I don't think a lot
of folks without direct firstperson experience with PD can
really wrap their head around.
It's like, oh, your handshake,so that must suck.
It's like, no, man, myhandshake, so I can't type and I
(06:29):
can't write.
And then when my voice startswobbling too badly, I can't even
use the speech to text featureson my phone or my computer, and
then I get real upshit creakreal fast because when I ask
someone for help, they can'tunderstand me.
(06:53):
And the waiter starts looking atmy girlfriend when I ordered.
Like, what will your retardedfucking stepson be having today?
You know, it's really impactful,not only in how I'm treated, but
even in the perception of howI'm treated by other people.
(07:16):
No friends get angry at waiterson my behalf.
SPEAKER_01 (07:22):
Right.
And that has to be a difficultposition for you, Travis, as an
independent person, to feel likeI'll fight my own battles.
I don't want you to fight mybattles, right?
SPEAKER_02 (07:33):
Right.
And that's if I can fight mybattle, I just want to order
fucking dinner, not have afight.
Right.
You know?
SPEAKER_01 (07:43):
Yeah, yeah, I see that.
So I think that you've made thisshift here, and I want to talk a
little bit about it.
So as you saw yourself goingdown this Parkinson spiral and
feeling, I'm assuming that maybeyou felt a little hopeless along
(08:03):
the way.
And you rarely hear that fromTravis, by the way.
If you're a new listener, youmight not know this about
Travis.
But he fights, he doesn't giveup, he is always positive, no
matter how bad it is.
In the next minute, he will findsomething to feel grateful for
and be on to the next step.
(08:25):
And I think that you weren'table to do that this time.
SPEAKER_02 (08:30):
Not really well.
I mean, I'm a strong believer,Judy, in that we always have a
choice, even if we just canchange our outlook, not the
external situation that we'rein.
Right.
We can always change ouroutlook.
But sometimes changing ouroutlook does not do a whole lot
(08:51):
for us.
You know, when you're looking atthe bottom of a ramp that you've
slid down, and at the bottom ofthat ramp is a cliff in the air,
there's just not a whole lot ofways you can spin that to be
positive.
Of course.
You know?
Yeah.
And that's just how it is.
(09:12):
And that was honestly sort ofthe perspective I was starting
to come up with.
Things as we talked about in thelast episode here at the house
had been challenging for me.
Just moving around, doing theADLs, uh, daily living tasks.
SPEAKER_01 (09:34):
Right, feeding the dogs, getting yourself dressed,
going to the bathroom, makingcoffee, making breakfast, making
lunch.
I think Travis moved into a newplace.
It's been what, a month or twosince you've moved into the new
space, and it's a little bitsmaller.
It's good, but it's not ideal.
(09:55):
And so that presented somechallenges for you.
SPEAKER_02 (09:58):
Yes.
And even if the size and thelayout were all fine, there's
the fact that I'm still livingin part boxes because we've had
to replace everything.
Right.
And so getting new furniture, itcomes in boxes, and there's
(10:20):
these huge cardboard piles thatwe have to get rid of once a
week.
We go through this big song anddance to, you know, march out
all the cardboard to the end ofthe curb, you know.
SPEAKER_01 (10:33):
Yes.
SPEAKER_02 (10:34):
And that became so difficult, and I was falling so
often that Sarah was afraid forme to take the fucking trash
out.
SPEAKER_01 (10:45):
Right.
Which has not been an issue foryou up until this point.
SPEAKER_02 (10:50):
Right.
And like I just want toemphasize for folks that don't
know me, I should be able totake the trash out.
That is not high on my level ofphysical prowess, but it was
proving to be too much of achallenge for me to execute
(11:10):
safely.
SPEAKER_01 (11:12):
Right.
So, with that in mind, you hadto make some adjustments.
SPEAKER_02 (11:16):
Yes.
SPEAKER_01 (11:17):
And I think Travis had mentioned to me before we
started this that he had gone onanother photography expedition
and he was away shooting.
And when he came back, Sarah hadsomething there for you at the
house.
Yes.
You wanted what was it?
SPEAKER_02 (11:35):
Well, she she had talked about getting it for
quite a while, and we had bothdecided that it looked like I
would probably need it soonerthan later.
And it was an electric-poweredwheelchair.
A fucking wheelchair.
SPEAKER_01 (11:54):
Right.
Which you have not ever saidthat you felt like you needed
that.
SPEAKER_02 (12:00):
Right.
But you know, when you falleight to ten times in the space
of two hours, you start reallyquestioning whether you're
stable on your feet.
Yes.
And so, always solution-minded,I was looking for ways to get
(12:21):
around that would be a littlesafer, but would also be
realistic for the things that Istill wanted to do.
Of course.
SPEAKER_01 (12:32):
And I also want to point out here, in this
situation, Travis has a partner,a long-term partner.
Right.
So it's not just Travis havingto make this adjustment, it's
Sarah having to make thisadjustment.
So there's a lot of moving partshere with this.
(12:52):
It's not like, oh, honey, we'reordering an electric wheelchair.
No biggie.
Okay.
Right.
That's not the way theconversation goes.
It's a big conversation.
And most people don't want tohave that conversation.
SPEAKER_02 (13:06):
Right.
We didn't want to have thatconversation.
And we had told ourselves that,you know, it would be, you know,
years down the line, regardlessof when that conversation
happened.
It was always many years fromnow.
Whenever now is.
SPEAKER_01 (13:26):
Whenever now is.
SPEAKER_02 (13:28):
Okay.
And the fact of the matter is,is we had that talk again, I
think about a week ago, youknow, before I left on the trip.
And she said, you know, do youthink we need to pull the
trigger on this?
And I said, we might as well,because I don't know when I'm
(13:49):
going to need it.
SPEAKER_01 (13:50):
That was smart.
So, Travis, for you, you haven'talways looked at assistive
devices as your enemy.
And I know it's hard as a youngperson, which you are, having to
use something like that, orwhether you have to use a walker
or whatever it is, Kane,whatever you would use.
(14:13):
I know that you have always beenwilling to use an assistive
device if you needed it.
You sort of let your ego go.
You accepted it, correct?
Not necessarily saying you likedit, but you have been an
acceptance of it.
SPEAKER_02 (14:28):
Yes, it's something that I remember an old climbing
partner of mine talking aboutwhen he was sort of mocking
folks that dressed up likeclimbers but didn't go climbing.
He said, it's better to be outthere doing something cool than
(14:53):
looking like you're doingsomething cool, but not
actually.
I like that.
So I've always figured that Imay be wearing a diaper or
toting a cane or in a fuckingelectric wheelchair, but damn
it, I'm gonna show up and do thecool shit instead of being at
(15:17):
home where no one can see meanyway.
What, looking like I'm doingcool shit?
No.
SPEAKER_01 (15:26):
No, not that's not you.
SPEAKER_02 (15:28):
No.
SPEAKER_01 (15:29):
So you had the wheelchair at the house.
So let's kind of look at theprogression now.
You came home, and we're gonnago back like two years, in two
years from July.
You and I were in Barcelona forthe World Parkinson's Congress,
and we saw a lot of cool stuffthere, so many different things.
(15:50):
And I'm gonna give a shout outto Olgock and the new shoes
people.
We met them, we saw theinfrared, that was pretty great.
SPEAKER_02 (15:59):
Yeah, the light.
SPEAKER_01 (16:01):
The light, the light helmet that looked so cool.
SPEAKER_02 (16:04):
Yeah.
SPEAKER_01 (16:04):
You know, I mean, we saw a lot of things, glasses.
There were so many assistivedevices that were so
interesting.
And some of them have made it tothe States and some had not.
But there was talk.
And I think for those of youthat are really digging deep
into what's new with Parkinson'sand what's available to you, you
(16:27):
know that this year there's beena lot of movement within
delivery systems, subcutaneous,sublingual.
There's so many new ways to getcarbidopa, levadopa.
And so at that time, a lot of itwas still being tested in
Europe.
It was not here in the States.
SPEAKER_02 (16:46):
Right.
Because we have the Food andDrug Administration who, for all
the good that they do, theydon't do it particularly
quickly.
SPEAKER_01 (16:59):
No, seven to ten years to get anything to the
market.
It's sort of agonizing to seehow long it takes them to get
things to market.
It's stressful for the patientswhen you realize how long it
takes.
So I think with keeping that inmind, I think that you had a lot
(17:19):
of different things that you sawand you thought were pretty cool
and you know you tested them outwhen you were there.
And so now, two years later, yousee yourself really losing
ground.
You feel like your Parkinson'shas really progressed quite a
bit.
And it's been 11 years, so it'sa progressive disease.
It makes sense.
(17:39):
It might progress a bit here orthere.
And I do want to give somebackground.
He eats well, he exercises everyday, he plays pickleball, he
does mountain climbs.
What else do you do?
You do all kinds of things.
He installs bars, grab bars forfriends that have PD that don't
have grab bars in their homes.
(17:59):
He's sort of a jack-of-all tradehere.
And all of a sudden now he'shaving difficulty doing these
things.
So for you, Travis, I know thatyou are always researching and
looking into new things.
And you want to be cutting edgein every way from your red and
purple hair or your orange hair,whatever you have for the month
(18:23):
or week.
And so you were looking intosome of the delivery systems
that were available or that wereavailable then, but not really
available to us here in theStates.
SPEAKER_02 (18:33):
Right.
And even if it comes to theStates, if it's in the form of a
clinical trial, I knew a couplefolks who had participated in
this when it was a clinicaltrial.
And that's great and all, but Iwas waiting for the real deal to
(18:55):
hit the market.
And I'm not too excited when itcomes to new drugs.
There's not something thatgenerally gets me too excited,
but I had progressed from theCarbidoba Levinoba generic
cinnamon that I was put on, youknow, about 18 months after
(19:21):
diagnosis through the variousextenders like intacapone and
did you ever use Comptan?
SPEAKER_01 (19:31):
That's another extender.
unknown (19:33):
Yeah.
SPEAKER_02 (19:33):
Yeah, Comptan and some of the adjunct
anti-agonists, maybe?
Agonist, dopamine agonist.
SPEAKER_01 (19:43):
Not anti-agonist, the agonist.
Okay.
Yeah.
SPEAKER_02 (19:46):
That we hear so many horror stories about.
And I pretty well settled on anextended release, carbonoba
levadoba in the form of Ritari,and an agonist in the form of
the new Pro Patch, which isbrand name of Ripinerol?
(20:08):
No, it's Rip Sagelline.
SPEAKER_01 (20:11):
Oh, Risagelline, right.
Okay, Risagelline.
SPEAKER_02 (20:14):
And I'd been on those for a long time, and I eat
a lot of those pills in the day.
SPEAKER_01 (20:21):
Right.
Can we even talk about that alittle bit, Travis?
I I want to say, because I hearpeople in groups go, oh, I'm
taking so many cinnamon.
I take two, three times a day.
I'm taking six pills a day.
Can you just say how manycinnamon you've taken?
What has been the max you'veever taken in a day for a week
(20:43):
or two, or a lot, or even amonth or two, or a year or two?
What has been your max ofcinnamon in a day?
SPEAKER_02 (20:49):
Regular cinnamon, I was taking 24 a day.
Yep.
And I had the horrible nauseathat about one-fourth of the
people taking Cinemat get.
And so I was taking the pills,throwing up violently,
(21:11):
projectile vomiting, taking morepills, projectile vomiting
again.
And that's when I got DBS thefirst time.
SPEAKER_01 (21:22):
The first time, okay.
SPEAKER_02 (21:24):
Because I was looking for any option at that
point that was not just anotherfucking pill.
Right.
SPEAKER_01 (21:34):
And at that point, Travis, when you had your DBS,
it was pretty successful foryou, yes?
I worked with my teams.
Uh Plural.
Teams.
I just want to emphasize that alittle.
SPEAKER_02 (21:49):
Plural.
I worked for about four years toget a DBS system dialed in to be
as good as I feel like it canbe.
Okay.
And that took me two differentDBS units, two brain surgeries,
(22:16):
and a whole lot of programmingsessions.
I mean, like, I was in thereevery two weeks for six months.
SPEAKER_01 (22:25):
Right.
So for those of you that thinkthat you get DBS and they start
it and it's it's perfect, no,no, no, no, no.
It is a process and it istiming, and you have to
fine-tune it and then fine-tuneit again.
And with each fine-tuning, youmay have other symptoms that may
(22:48):
pop up, right?
SPEAKER_02 (22:50):
Right.
And the DBS may even cause someof those symptoms.
Right.
The first unit I had had adistinct and decisive impact on
my speech.
It warbled my speech because thesubtelemic nucleus, for those of
(23:15):
you who may not be up on yourbrain anatomy, is right next
door to the voice capsule, whichis the part of the brain that
controls speech.
Yes.
And so if you have a slightlyout-of-alignment deep brain
stimulator, or if it's just toobroad of a stimulation pattern,
(23:39):
or too strong of a stimulationpattern, it can mess with your
voice, and you can end uptalking Charlie Brown's fucking
teachers.
Yes.
So then you're in this devil cantake situation where you're
(24:00):
trying to improve your PDsymptoms, but you're also trying
to not make your voice worse.
Because we just started thisepisode talking about how that
compounds your PD symptoms andfurther isolates you, further
impacts all your relationshipsbecause your friends, even when
(24:24):
they do like you, they don'twant to hang around with someone
that can't talk back.
SPEAKER_01 (24:31):
Yes.
So with that said, okay, you hada pretty good run for a while.
SPEAKER_02 (24:41):
Yes.
SPEAKER_01 (24:42):
With your DBS.
And and I know that you'vealways been a big proponent of
it, that it really helped you,and without it, you would have
been terrible.
You knew that you would bereally terrible.
SPEAKER_02 (24:54):
Yes, and and I'm still of that belief and
mindset.
Okay.
And my team, as it is today,still uses the D-brain
stimulation as another axes fortreatment.
SPEAKER_01 (25:13):
Right.
It is a treatment.
So this is what we want peopleto understand.
It's not going to cure, it is atreatment.
It's no different than themadding if they were going to
give you another set of pills ora different cocktail to take on
a daily basis.
It is a tool.
SPEAKER_02 (25:32):
Right.
It is a powerful treatment tool.
Very powerful tool.
And one that has profound andvery fast effects, which is
something I like.
It's not like the doctor givesyou a new pill and says, take
this for two weeks and see if itgets better.
Correct.
You know, I walk into the DBSoffice and I can walk out
(25:58):
feeling the change.
SPEAKER_01 (25:59):
So that's very significant.
So now we've established thatDBS has really been one of the
best things for you.
SPEAKER_02 (26:07):
Right.
SPEAKER_01 (26:07):
And those of you that started with us early on, I
just want to make this pointagain that when Travis told me
he wanted to do a podcast, Ilooked at him and said, What?
Are you fucking crazy?
Like you what?
A podcast?
And he said yes.
SPEAKER_02 (26:28):
You were thinking, what are we going to call it,
Mr.
Mumbles and Friends?
I mean, speaking clearly was notin my wheelhouse at that time.
SPEAKER_01 (26:40):
No, it really wasn't.
But you made a lot of strides.
I mean, you started working veryclosely with speech
pathologists.
You went into the Parkinson'sVoice Project.
I mean, you really have put yourtime into this, Travis.
And not without it showing a lotof amazing results because you
(27:01):
were doing very, very wellthere.
So I would say it all reallypaid off for you.
But now let's fast forward to acouple of weeks ago or a month
ago.
Actually, it was two months ago.
It was April when you, or June.
It was in June when you were atan event, a PCLA event.
(27:22):
We'll give a little plug herefor PCLA.
There are the lunch and learn.
We had this amazing lunch andlearn with Dr.
Ray Dorsey talking environmentalissues and Parkinson's.
And you happened to come upon atable of one of the
pharmaceutical companies.
So you want to mention this?
SPEAKER_02 (27:43):
Yeah, it was the pharmaceutical company, Abby,
who makes a lot of PD drugs.
And they probably morespecifically to this
conversation, they made theDuoba pump, which is because
it's still available and you canstill get it.
SPEAKER_01 (28:06):
Yes.
SPEAKER_02 (28:06):
It is an intratestinal delivery system of
carbonoba levatopa.
Yes.
And let me be real specific.
There is an operation where theyput a tube into your small
intestine.
(28:27):
It's like a port.
And then they have a little porton the side of your abdomen.
SPEAKER_01 (28:32):
Yes.
SPEAKER_02 (28:33):
That you can never go swimming with or be submerged
in a body of water.
Yes.
And poses a lifetime infectionrisk.
SPEAKER_01 (28:45):
Right.
But I just want to say peoplethat are on dialysis oftentimes
have that same type of port.
There are many different medicalconditions where people have to
have this peg put in.
People that have difficultyswallowing sometimes get a peg
to help with that.
SPEAKER_02 (29:05):
It's a G tube, and it's used for a whole lot of
things, long-term hospice care,all kinds of things.
But as someone who's active andlikes to go off into the woods
where I don't have access toshowers and sterile conditions
or even clean conditions all thetime, and who might be running,
(29:31):
jumping, climbing trees, andscrambling over rocks and
mountains.
I didn't want anything thatcould, you know, snag my
intestine dangling out of me.
Yes.
And so I was very interestedwhen the rap told me about this
(29:52):
new system that they had.
It was the same that I had heardabout in Barcelona.
And it's going by the trade nameBiolev in the state.
SPEAKER_01 (30:06):
And just so you know, we're not paid by Avi, and
we are not endorsing the productin that way.
But Travis, I just want to do alittle disclaimer here.
Travis is expressing hisexperience with the drug.
And personal opinion.
And personal opinion.
So I just want to be clear aboutthat.
SPEAKER_02 (30:27):
Yes, they have not paid me or asked me or even know
that I am talking about thedrug, and they may or may not be
happy about it when I'm donetalking.
Right.
So yeah, there's for that.
But I heard that it had gottenFDA approval as of October 20th,
(30:51):
2024.
So this was actually in April.
So it was just about six monthssince it had hit the U.S.
market.
Right.
Well, I'm not one to dig aroundwhen it comes to treatment that
I want that I zoom in on anddecide is right for me to try.
(31:14):
So I reached out to my friendsin the PD community and found
three or four of them who hadbeen on this contraption because
it's not just a drug, it's adrug delivery system, it's a
whole treatment package.
Right.
Okay.
SPEAKER_01 (31:34):
Very similar.
Can we say that it's similar towhen people use an insulin pump?
It has certain qualities tothat.
I've heard people say that.
That might be wrong, but I'veheard people describe it that
it's similar.
Yes, and maybe in size.
SPEAKER_02 (31:52):
Right.
If that's the thing that you canrecognize and picture in your
head is if you know a diabeticwho has this little thing that
sticks from a tube into his gut,then on the outside, yes, that
is very similar.
SPEAKER_01 (32:13):
Okay.
Just to give people a visual ofwhat it's like the size and what
it's similar to.
Okay.
SPEAKER_02 (32:19):
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 withthe face cramps that used to
pull my mouth out of shape,which made it hard for me to
(32:41):
talk because there was like itfelt like I had been hooked by a
fishing hook and was getting mytongue yanked sideways and my
face off and to the left.
And she had told me that it wasa real game changer, and I could
see that when I videoconferenced with her.
(33:09):
And so I went to my movementdisorder specialist, whom I have
a great relationship with.
He's awesome.
And I told him, I said, Hey doc,what steps do I need to take to
get on this here Violev?
And he said, You want to dothat?
(33:31):
Okay, we'll file the paperworkfor you.
Because it's not covered by anydrug program.
Hmm, this is a big one.
It's not even considered a drugby the drug program.
That's interesting.
Yes, it's covered under myMedicare Part A.
(33:56):
Okay, not for hospitals.
Oh.
Because it's considered aninfusion system that you have to
get under the care of a doctor.
So similar to the treatmentsthat you get for MS or even
dialysis, really.
(34:40):
So dialysis might be a stronganalogy, but I think it's a
little between the insulin pumpand the dialysis.
SPEAKER_01 (34:52):
Okay.
I know about dialysis a littlebit 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 ofinfection and everything,
because that was invasive, andshe did have a port.
And I always felt when I waschanging the dialysis bag, I
always felt like I could kill mymother if I do this wrong.
(35:16):
One one little thing and I couldtake her out.
So it was it was a very tensetime doing that.
But now this particularexperience is not like that.
And I think that's what's makingthis treatment more inviting.
It doesn't have that infectionfactor, I think, right?
SPEAKER_02 (35:35):
It doesn't have the hole in your abdomen to the
abdominal part.
Okay.
It does rely on subcutaneouscanola, is the word that they
use.
Yes.
Which, if you can imaginegetting a shot from a small
(36:00):
gauge needle, you know, one ofthe very fine needles that stays
in you.
24 7.
So it's a plastic needle, ifthat brings anyone any comfort,
but it's a needle that stays inyou.
SPEAKER_01 (36:24):
So there is But it goes under the skin.
It's not penetrating deep intothe fatty tissue and everything,
right?
SPEAKER_02 (36:32):
Right.
It's just under the skin intothe belly fat.
Okay.
Which is why they recommend it.
The site in their vocabulary ison your belly, because that's
where most folks, or at leastmost men, carry a little extra
(36:52):
subcutaneous matter.
SPEAKER_01 (36:55):
Yes.
So how long ago did you startthis, Travis?
Four days.
Four days.
Five?
Okay.
Yeah.
And did you notice a differenceright away?
Like, was it something where youjust stopped your Ritari and you
started this, or you still weretaking the Ritari?
(37:15):
You still are taking Ritari.
You want to explain thistransition?
SPEAKER_02 (37:20):
Sure.
So the day of, and first let meback up and say that Abby as a
company makes incredibly surethat we as the patients are well
supported.
That one I will give them freeof charge.
(37:40):
Okay.
Make sure that any questions Ihave, any concerns, any thoughts
about questions that I mighthave, and even some that I
don't, are answered in a veryfast and efficient manner.
(38:06):
That's great.
So before Thursday, which iswhen I started this, I was
shipped a book all about how itworks and what to expect.
And then I was sent links tovideos on how to work the pump
system, change the medicationand changed the cannula and all
(38:31):
the other parts of it.
And then, in case I couldn'tfigure it out from a book and a
video, they sent a nurseambassador to my home to explain
it in person.
Which is fantastic.
And to make sure that I could doit.
She actually tested me and hadme show her, walk her through
(38:54):
the whole thing.
Wow.
Backwards and forwards.
And then when I went to mydoctor, they sent yet another
nurse ambassador to the doctor'soffice to make sure he had any
questions he had answered anddialed the settings and you know
(39:17):
tuned it to match.
Because I did stop taking Rotarithat afternoon and haven't taken
it since.
Okay.
So Thursday afternoon at thedoctor's office, I started this
and honestly did not feel thatmuch different.
(39:40):
Thursday night went to bed.
Friday, got up, kind of putteredaround.
It was the inconvenience ofwearing this thing because it is
a like a little fanny pack,right?
Yeah, it's smaller than a breadbox.
Yeah.
About the size of a slim brick.
(40:03):
Not as clunky as a 1985 cellphone, but maybe a 1992 cell
phone.
Okay.
Okay.
You know, if that's good.
Put it in the bird.
That could help.
And Friday I had planned, so Istayed up late packing for this
(40:24):
photo Safari trip.
And I don't know that I feltreal good that day either, but I
didn't feel as bad as I mighthave otherwise, considering how
late I stayed up and how muchstress I'd been under.
And I'd just come back fromanother trip and was planning
(40:47):
this trip.
And it was something that I didsort of notice towards the end
of the night was, hey, I'm notdoing as bad as I think I maybe
should be.
Oh, that's interesting.
SPEAKER_01 (41:01):
So you noticed a little something.
SPEAKER_02 (41:04):
A little something Friday night.
Okay.
About 24 hours in.
All right.
And then Saturday, I got up,packed the car, and with two
friends drove up to the Sierras,where we drove up to 10,000 feet
in elevation, broke out withsome camping and photography
(41:27):
gear, and I was hiking around at10,000 feet, taking photos with
my large format camera.
And I again noticed that Iwasn't doing as badly as I
thought I might be.
SPEAKER_01 (41:45):
So at that point, Travis, you made it through the
weekend, obviously.
SPEAKER_02 (41:51):
Yes.
I came back from my trip, andthat's probably when I started
to feel the changes mostsignificantly Sunday night,
Monday, uh daytime.
I really started to notice theeffects, and particularly in
(42:14):
areas of my speech, which, youknow, is the thing that probably
most affects the listeners andeveryone else who wants to
understand what I'm saying.
And I want to pause here, numberone, because it's getting a
little long for one episode, andwe might even break this into
(42:38):
two.
SPEAKER_01 (42:39):
That's what I was thinking, Travis.
Why don't we why don't we take abreak and we'll come back and
record part two of this episode?
SPEAKER_02 (42:50):
Yeah.
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