March 20, 2025 • 38 mins
Simon's voice carries the weight of a decade battling Parkinson's disease as he shares his raw, unfiltered experience with dystonia – one of the condition's most debilitating manifestations. Despite undergoing deep brain stimulation surgery twice, Simon continues to struggle with both the physical torment of involuntary muscle contractions and the emotional burden of depression and apathy that often accompany Parkinson's.
The conversation takes a profound turn when Simon contrasts his journey with co-host Travis Robinson's more resilient approach. "Travis is the blitzkrieg of Parkinson's patients," Simon remarks with admiration, describing Travis's "cake or death" philosophy of pushing through difficulties. This striking juxtaposition highlights a crucial truth rarely discussed in chronic illness narratives: there's no single "right" way to face Parkinson's disease.
What makes this episode particularly valuable is its unflinching examination of the darker aspects of living with Parkinson's. Simon courageously admits, "I'm not winning the battle," giving voice to countless others who feel similarly overwhelmed but lack the platform to express it. The hosts thoughtfully explore how the medical community, despite their expertise, still grapples with Parkinson's complexity. As Simon notes, "Even the movement disorder specialists don't know that much... their guesses are just far more educated than ours."
The conversation ultimately builds toward a powerful message of community and connection. Whether through support groups, writing (Simon will be contributing a column called "Simon Says" to the PCLA website), or honest conversations like this one, breaking isolation proves essential. As Judy beautifully summarizes: "We're doing it collectively. If we stand together, we can make changes."
Ready to hear more unfiltered conversations about living with Parkinson's? Subscribe to our podcast and join our community at PCLA.org where you'll find resources, support groups, and others walking similar paths.
- Co-hosts: Judy Yaras & Travis Robinson
- Editor & Audio Engineer: (EP1-100) Spencer Yaras
- Audio Engineering Intern: Ana MacAller
- Social Media Intern: Ana MacAller
www.INDYpodcast.net
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:01):
Welcome to I'm Not Dead Yet, with Judy and Travis,
a podcast about living anextraordinary life with
extraordinary circumstances.
Speaker 2 (00:16):
Welcome to the I'm Not Dead Yet podcast.
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
(00:48):
2014.
Speaker 3 (00:55):
And I'm your other co-host, Judy Yarris.
My husband, Sandy, hadParkinson's disease for 18 years
.
I was his care partner sincedisease.
Speaker 2 (01:13):
for 18 years I was his care partner.
Today's episode we'll betalking with Simon Garlick.
Speaker 1 (01:21):
Hi Simon, hi Simon, hi Dad.
Speaker 3 (01:22):
Just to give our listeners a little background.
Simon Hi there, Just to giveour listeners a little
background.
Simon was born and bred in theUK, so I thought that's kind of
cool.
You'll hear this wonderfulaccent and Simon was a
screenwriter and now he is acopywriter.
And I think that's all we'regoing to tell you about Simon,
because we're going to share alot more with him and about him.
(01:44):
But welcome.
I just want to welcome you tothe podcast today.
Speaker 1 (01:47):
Simon, thank you very much.
It's a great honor to be here.
Speaker 3 (01:50):
We're excited.
Can you share with us a littlebit about your journey with
Parkinson's?
When you got it, what was yourlife like?
How it has?
Just give us a littlebackground.
Speaker 1 (02:04):
Yeah, I got Parkinson's 10 years ago as well
, I think, same as Travis.
I'm a little older.
I started a little older.
I got it when I was 51.
You do the math as to how old Iam.
I got it quite quickly.
(02:24):
A lot of people kind of spendyears getting diagnosed and I
just had this feeling thatsomething was up.
And I went to see an eminentmovement disorder specialist in
London and here and they bothconcurred that I had the dreaded
(02:47):
Parkinson's PD.
Initially I was fine, becauseeveryone's initially fine when
they have Parkinson's Well, noteveryone.
But people who are diagnosedquite quickly, suppose, have
more of a honeymoon than peoplewho aren't, and I.
(03:10):
But it progressed quite fastand my major symptom, my major
sort of phenotype, was dystonia,which for those who are
(03:31):
uninitiated is spasms andinvoluntary movement muscle.
It's not spasms, it'sinvoluntary muscle contractions,
cramping.
Speaker 3 (03:42):
Cramping and contractions.
Speaker 1 (03:44):
Yeah, and they became very, very bad quite quickly
and I had DBS and then I had itagain.
So I think Travis has got twoDBSs, so him and I are catching
up.
One will win when we have ourthird.
Speaker 3 (04:04):
I think just for clarity, because we have some
people that may not know whatDBS is and that is deep brain
stimulation.
Speaker 1 (04:13):
Deep brain stimulation.
They stick a couple ofelectrodes into a certain target
of the brain and when you'vegot tremor, think it's a bit,
it's a better target because you, you flip, flip around with the
uh controls of the dbs and theand then the tremor goes away.
(04:39):
But with dystonia it's a lotmore difficult to find the
target and that has been thecase with me.
It's been like finding a well,a pin in a haystack.
To be honest, I have neverreally conquered it.
Speaker 3 (05:01):
So you're still struggling with the dystonia
after 10 years.
Speaker 1 (05:05):
Yeah, and it's getting worse, naturally.
Of course I've now.
I worked for a while and Istopped working a year ago.
That wasn't me stopping working, that was them stopping me
working.
But I'm finding it a littlechallenging to be honest with
(05:28):
you.
The parkin parkinson's is is isa disease, as I was, as was put
to me a long time ago, whichyou're in a club with judy
travis and others and you justwell, judy's not in the club
with Judy Travis and others andyou just well, judy's not in the
club.
Actually she was an associatemember.
Speaker 3 (05:48):
Associate member yes.
Speaker 1 (05:51):
Good way to put it and you just don't want to be
this.
It's a bit sort of the oppositeof Groucho Marx, who wouldn't
join a club that would take himas a member here.
You wouldn't want to.
You join that club club and youdefinitely don't want to be a
member.
Speaker 3 (06:10):
Right, that's a good way to put it.
Speaker 1 (06:15):
So I'm a member and people have lots of different
responses to it and I can't saythat my response and I'll be
honest here has been as upbeatas, say, travis.
I haven't climbed kilimanjarojust yet, um, and I think I'm
(06:38):
I'm not winning the battle, Ithink.
I think I think a lot ofparkinson, I think a lot of
Parkinson's dialogue is aboutperseverance, gutting it out,
stuff like that.
And I'll fully admit thatthere's another side to that,
which is those who find itdifficult.
Speaker 3 (06:58):
To do the fighting absolutely.
Speaker 1 (07:00):
To do the fighting.
I suffer from apathy fatigueand I look at Travis and I
marvel at him because he hasmanaged to.
I think a lot of it's got to dowith his personality prior to
Parkinson's, if I may say so andchallenge me if I'm wrong,
(07:25):
Travis.
Speaker 3 (07:28):
Neither of us have known him before his PD, so we
don't know.
Speaker 2 (07:31):
But we have to assume I agree with you.
Speaker 1 (07:35):
I've asked him on phone calls, as friends, and you
know I'm having some problems,problems I won't deny it in
front of the world's public anduh, you know I have some
dystonia symptoms which arereally debilitating and but I
(08:00):
can still.
I know that the dbs is workingbecause when I turn it off, when
it's turned off in a controlledenvironment with a specialist
nearby, I go completely solid.
Speaker 2 (08:14):
Wow.
Speaker 1 (08:15):
I'm like a person from Pompeii after the Vesuvius
eruption.
Speaker 3 (08:23):
Right, so it just you freeze completely, which I
think.
This is what some people don'tunderstand is that this is a
very real part of Parkinson'sand some people do not
experience that.
But when you do, it is a bitfrightening and so uncomfortable
and maybe there's another wordother than uncomfortable it can
(08:45):
be painful, correct andfrustrating, beyond frustrating,
probably.
Speaker 1 (08:51):
Well, you realize that even though the DBS, you
think it's not working, but itreally really is.
And I had DBS in two separatetargets the DBS for the
uninitiated it goes into targetsin the brain and typical for
Parkinson's, which they callidiopathic.
(09:12):
I like to vary that and call itidiopathic.
It's like no one knows anything.
I mean, even the movementdisorder specialists don't know
that much.
They just know what they knowbetter than we know and their
guesses are far more educatedthan ours.
(09:34):
Yes, but they're still kind ofguessing.
Speaker 3 (09:38):
Yes, they don't know everything about Parkinson's.
They don't know everythingabout the brain and they don't
even know where it starts forindividuals, because there are
so many different versions ofParkinson's.
If one person has Parkinson's,one person has Parkinson's.
Speaker 1 (09:58):
Yeah, I mean everyone is different in Parkinson's
Right With the, because thereare two types of symptoms.
I mean for those who don't know.
I mean, am I out of place bysaying that?
Speaker 3 (10:10):
No, I think, just say it.
Speaker 1 (10:14):
For those who don't know, then there's motor
symptoms, which affect the wayyou move, and non-motor symptoms
, and those non-motor symptomsgo on and on and on.
In fact, when I was firstdiagnosed by an eminent MDS
(10:34):
movement disorder specialist, drTagliati, michele Tagliati, one
of his junior doctors, came inand ran through this list of
what must have been 40 non-motorsymptoms, and in fact,
sometimes non-motor symptoms cansort of dominate your
(10:58):
Parkinson's experience.
Speaker 3 (11:00):
Yes, that's very true for many people.
Some people don't have tremorsor dystonia.
Speaker 1 (11:06):
Yeah, some people don't have tremors or dystonia.
Some people have other movementdisorders, but slowness and
rigidity is a key part of it.
So there are some common traits, but even the common traits
express themselves differently.
But yeah, I mean, the list ofnon-motor symptoms just goes on
(11:27):
and on and on, and MicheleTagliati and I think he's kind
of right calls Parkinson's asyndrome.
It's more of a collection ofdiseases than it is one disease,
Mm-hmm.
And it's not like and unlikehaving a heart surgery or a
heart problem, where you knowwhat the problem is because you
(11:48):
can see it for the most part.
I mean I realize I'm speakingto you, Judy, and your husband-
Right, right, no, absolutely.
Speaker 3 (11:59):
I mean Sandy suffered so terribly from heart disease
from a very young age in hisearly 50s or 50, 51, and it was
very clear what they needed todo if they could do it.
That was the question.
But they knew what was causingthe problem.
They could see it, it was clear, through scans and until very
(12:23):
recently you couldn't even tellif someone had Parkinson's
through a scan.
Now they do the DAT scan andthey do a skin test, but it's
still not definitive as to whereand how this has started.
Speaker 1 (12:41):
Yeah, I mean, it's a terrible disease, but also it's
wrapped by not knowing Right.
You know there are things thatyou can do to improve your
situation, but even they are notproven.
Speaker 3 (13:03):
Right, it's all trial and error and I think it's very
important for people tounderstand this.
So we have two people here onthis podcast Travis, whose
experience, although he hasdefinitely and I have seen
Travis.
I've spent a lot of time withhim and I have seen him.
I would say, travis, I've seenyou in pretty bad shape, would
(13:26):
you say.
I've seen you in some of yourlow moments, but I've also seen
him through his high moments andI think what people need to
understand, as Simon is saying,it's a terrible disease.
It is, it is a terrible disease.
(13:46):
There's no question about it.
However, there is another sideto it that through that, even
though it's so challenging andso difficult and sometimes feels
impossible to get through, youcan do other things and live a
(14:07):
very full life, which I want tosay in Travis's case, he is just
sort of giving everybody themiddle finger.
He's saying fuck you toeveryone and this is what he
does.
He just goes on and does whathe does.
And for you, simon, I thinkyou're finding, because of more
of the non-motor symptoms, ofthe depression and apathy
(14:30):
impacting you so much, it makesit a little more difficult for
you to be able to put the middlefinger up and get on with it.
Am I right?
Is that okay to say, safe tosay?
Speaker 1 (14:43):
Okay, safe to say?
Yeah, I mean, I think there area lot of responses to
Parkinson's, but there is the.
No one wants to hear a sobstory, but there are a lot of
people out there who are hidingsob stories.
Speaker 3 (15:01):
Yes, of course, and are afraid to share them.
And I think that's part a bigissue for people with
Parkinson's not having a voiceto be able to share their sob
story.
Maybe hear someone else's sobstory and go, oh, but now how
are they approaching it?
(15:21):
What are they doing to helpthemselves?
And it may or may not work foryou, right, and it may or may
not work for you, right?
Speaker 1 (15:28):
Yeah, I mean I think you find out who you are and
I'll be honest with you, I'm notthat happy with who I am and
you know I represent a cohort ofpeople with Parkinson's who are
struggling to put up theirmiddle finger.
(15:49):
Mm-hmm, I mean, mean, that'sone of the things I enjoy about
talking to travis is he doesn'ttake any of my shit.
He says, get through it, right,but it really is hard,
especially when you're dealingwith umstonia, which is, I would
(16:12):
say, I mean, I don't know this,but I would say it's probably
one of the nastiest phenotypesof Parkinson's.
Speaker 3 (16:20):
Yes, I agree with you , simon.
I think it is very debilitatingand a lot of people that
fortunately do not have it don'tquite understand that.
But yeah, have you tried?
I'm just curious because I knowpeople that have had dystonia
in different parts in theirshoulders, in their toes,
(16:40):
curling in their feet and andhave you done the botox shots to
try to help it?
Speaker 1 (16:48):
done bot Botox twice hasn't helped Didn't help.
Speaker 3 (16:51):
Okay, that's what I wondered.
And here is where, just to givean example, sandy had terrible
dystonia in his right arm andright shoulder and it was
terrible.
They did Botox on him and itwas like a dream.
It just totally worked and hedidn't need it again for
(17:13):
literally it felt like it wasyears.
It was like two years orsomething before he had to go
back again.
I know other people that haveit in their neck or their
shoulder and they're going backevery three months regularly for
the Botox.
Three months regularly for theBotox.
(17:36):
So I want people to understandhow Parkinson's is so unique to
the individual that you havethese different cases where some
people respond to the treatmentof the Botox, some people do
not.
Some people get quick relief,some get.
It takes a while, it takes manytreatments to make it happen.
There's no quick fix and theydon't have a specific.
(17:56):
They have specific ways oftreating it, but it may not be
right for you necessarily.
That's the point I kind of wantto make here.
Speaker 1 (18:05):
Yeah, I mean I am the poster child, for I mean this
has nothing to do with thedoctors, they're not.
These are great doctors.
Speaker 3 (18:11):
These are great doctors.
Yes, I mean, I am the posterchild for I mean this is nothing
to do with the doctors.
Speaker 1 (18:15):
They're not.
These are great doctors.
These are great doctors.
Yes, we are talking about them.
This is to do with just comingacross a patient who is, you
know, pain in the ass.
As far as symptoms areconcerned, I mean, I am just the
poster child for medicationsand procedures that don't work
and it's not helpful.
Speaker 3 (18:35):
No, and it's understandable as to why you
would feel this sense of thedepression that you've
experienced, the apathy thatyou're experiencing and that
debilitating feeling that youhave of not being able to even
get the middle finger up.
You know, and I think that's agreat way of describing it, oh
(18:58):
good, we're getting a goodmiddle finger right now.
Okay, perfect, good quality.
Thank you, simon.
We have to make sure ourlisteners know.
But, travis, when you've hadyour DBS, have you been pretty
satisfied with that?
Speaker 2 (19:14):
The second time?
Yes, Okay.
But, it was something that myfirst go-round, with it a whole
(19:59):
lap of salt.
Speaker 3 (20:02):
Okay.
Speaker 2 (20:05):
When it does not quite work.
Where do you go from there?
Speaker 3 (20:21):
Yeah, I think you're right.
We'll have to dedicate anepisode to this, Maybe just a
whole DBS episode, I think wouldbe great.
I like this idea.
I mean I think that there'svalue for people to understand
because today it is such acommon treatment now and the
technology is so amazing and soprecise and there's new things
(20:48):
on the market now where, interms of the programming is
incredible.
I think a new one just gotreleased from Medtronic.
But I think and it doesn'tmatter which company you go with
they're all so high tech andthe care that you get from them.
We can go into detail when wedo the episode, but I think it's
important for people tounderstand that DBS is just one
(21:13):
treatment, it's one thing thatthey can do for Parkinson's and
not everyone may respond orqualify for it.
So you know, I mean, I thinkthat's part of it too.
Speaker 1 (21:26):
Well, I think DBS.
I mean I remember when I firsthad it I thought it was going to
be.
I mean I was told I knew itwasn't going to be a panacea,
but I have to say I reallytrusted it a lot and I didn't
realize, and it also changedduring the course of it.
That's why I ended up havingthe second one, which was in.
(21:49):
It gets a bit technical, butthe second one was in a target
in the brain which was moreconducive to dealing with
dystonia.
Okay, the first one wasn't okaythat makes sense.
The sub subthalamic nucleus, allthat stuff, because that will
(22:10):
scare off all our listeners.
Look, if someone saidsub-thalamic nucleus to you in a
podcast, you'd run as well.
Yeah, but it goes back to theoriginal point about Parkinson's
, which is that they just youknow, my doctors have been some
(22:34):
of the best in the world, butthey just don't know.
I mean, no one knows, and thatis a very frustrating thing.
There's no cure and, in termsof maintenance of the disease,
we're always going back tocarbidopa, levodopa and the
amount of new formulations ofthat, whether it's into the gut
(22:58):
or a different type of releasemechanism in a capsule.
Speaker 3 (23:03):
I mean carbidopa lev Dope is freely available in
bananas, right, right, there arecertain foods that you can eat,
right right, exactly, but youcould never get enough from food
.
So I do want to say that, yeah,you couldn't eat enough bananas
(23:26):
to make that happen.
Yeah, yeah, exactly.
You know, as I speak with you,and I and Simon, I've really
gotten to know you a lot more inthe last I would say this last
year and I, you know, I feelthere is a certain strength that
(23:49):
both of you bring with yourParkinson's and I want to talk a
little bit about that, becausewe're talking about how
difficult Parkinson's is andwhat you know that it's a sucky
disease and no one wants it, noone wants to be in the club.
But even though you do thingsdifferently, you both bring a
(24:09):
certain amount of strength.
And where I see your strength,simon, is that, although you
don't feel strong with this, youhave been able to get yourself
to a support group and you'vebeen willing to share about your
feelings and share thefrustration and the difficulty
(24:29):
that you are having, and thereis so much value to that and I
think that's partly why Travisand I wanted to even bring you
on into this conversation todaywas.
You know, you have been veryopen about the fact that it's a.
It's been so difficult for youand a lot of people don't do
(24:50):
that and I guess my question foryou have you found that support
groups have helped you withthat in, in giving you strength
to kind of fight on and get outthere and put up your shield and
get your sword ready and startattacking?
Speaker 1 (25:06):
Well, it's funny because I started very early on
in the disease going to asupport group and then I stopped
because one of the doctors saidwhy are you going to this
support group when?
Um, so I went to a supportgroup at the very beginning of
my uh, parkinson's and thedoctor said why are you going?
(25:32):
I mean, you're going to seethings that you know will come
down the pipe for you.
And it was true.
So I stopped going.
And then, about nine yearslater, I started going again and
mike weinman's group had beenfolded into this group and that
(25:56):
was the one I went to sorry thatdoesn't you with the were with
the YOPD group.
Speaker 3 (26:00):
Mike's YOPD group.
Mike's YOPD group.
Speaker 1 (26:03):
Yeah, Even though I was sort of not quite I'm not, I
was diagnosed 15 years afterTravis.
In terms of Right.
Speaker 3 (26:13):
But you're still considered.
You were in your fifties andyou were still considered YOPD.
Yeah, I think so.
Yeah, absolutely A hundredpercent.
And just so people know, if wehave listeners that don't know
what that means, it means youngonset Parkinson's disease.
So usually if you're under 55or under 50, probably, 55 is
(26:34):
probably the cutoff AlthoughSandy was 61, but they felt he
was so young, thinking that theytold us oh, you should go to
the YOPD group.
He did go to one of the otherones and he did not like it as
much, so he also started with aYOPD group.
Speaker 1 (26:49):
Well, I think the one that I went to was a very good
group.
It was extremely good, but I didsee things that and I was a
relatively normal person.
But the thing is it creeps upon you pretty quick and the
(27:12):
symptoms come fast and furiousafter a while and it's been very
frustrating because of the DBS,because you can't help thinking
of it, despite the fact I saidit wasn't a panacea, that it is
a panacea.
You can't help thinking theyput this fancy gizmology into
your brain, in our case twice,and you can't help thinking that
(27:36):
that's going to do it, going toclear it for a while.
Do it going to clear it for awhile and when it doesn't you
know you do get pretty down.
Speaker 3 (27:54):
Of course, I think it makes sense that you would get
down and I think the expectationbut I think part of it is maybe
, you know, travis, you sort ofhave taken this attitude of
having no expectations, like youtry something.
And I remember when you startedon Raitari and you just said
(28:21):
I'm going to go.
I said, what are you doing forthis?
How are you going to stop it?
And you went nope, I'm goingback to the doctor.
Nope, I'm going back.
I'm going to figure this out,I'm going to work through this.
And I remember how it was notan easy road for you and you
still pushed through it.
And I think there's so much tobe said for that of your ability
to be resilient, to just keeppushing and going through, and I
(28:48):
think we're going to hear thatwhen we talk to you about your
early days of DBS, your firstDBS surgery.
The other thing I want to bringup here now is that Simon is
sort of pushing himself now,because one thing we didn't say
at the beginning of this podcastthat this is our first us on
(29:18):
the website at PCLA andhopefully we're not going to be
censoring ourselves.
We've already dropped a fewF-bombs in this episode.
So I think it's okay.
You know I don't thinkanybody's going to really care,
but you know it's exciting forme because we really get to have
(29:43):
people know that we are part ofa community and I think, with
the depression and with theisolation and everything that
happened during the pandemic,more people were so impacted by
that isolation.
It made it really really hard,and PCLA was able to start
online support groups and getthings rolling.
(30:05):
So, just so you know, we'reexcited to be part of this
organization and be able tobring this to you through PCLA.
And, at the same time, simon,who's a writer and I did not
know that when I first met himand then getting to know him, I
discovered that he's a writerSimon is going to start.
(30:27):
He has a column called SimonSays that is going to be part of
the PCLA new website, which isgoing to launch in a couple of
weeks, and we're really excitedabout this.
So, simon, I know that you arestruggling and fighting and
pushing and a littledisappointed with the fact that
(30:48):
you're not out there jumping ontrampolines, but to me, the fact
that you've written some reallyimportant, wonderful articles
that talk about PD and howpeople journey through it and
how you've journeyed through it,and your perspective and
others' perspectives, and Ithink there's so much value to
(31:10):
this.
I love that both of you are nowpart I mean, you've always been
part of the PCLA family, butnow you're really integrated
into PCLA because you're goingto be on the website in a couple
different ways and that'sexciting for me to see that it's
part of our new launch thatwe're doing and the growth that
(31:31):
the organization has made and ahalf nine years in 2016.
So here we are, folks, we'reright behind you.
We all started this at the sametime.
Speaker 1 (31:50):
I think one of the things I think is important to
recognize and I do this throughmy writing is I don't want to be
a sad sack here, but I thinkthat a point of view that isn't
the conventional inspirationalpoint of view is important.
(32:13):
I mean most people, I meaninspirational stuff is great for
a lot of people, but for most,for some people, it's not.
It's actuallyanti-inspirational.
I know that sounds crazy, andit's only when you talk to
(32:35):
people like travis, who are ableto basically call you on your
BS, that you I mean in apsychologically sound way to do
that, that I think that's whenit's useful for someone like me.
Speaker 3 (32:53):
Yeah absolutely.
Speaker 1 (32:55):
Let me just say something about Travis.
Travis came up with thisconcept called cake or death.
Cake or death.
Marie Antoinette would haveunderstood it quite innately.
But basically it's a sort ofversion of the Jewish what are
you going to do, kind of thing?
You're going to do cake, you'regoing to make the best of it or
(33:18):
are you going to die?
And it's a version of get busyliving or get busy dying, which
is a quote from the ShawshankRedemption.
Speaker 3 (33:27):
I'm doing a lot of quotes here.
Yes, wonderful quote.
Speaker 1 (33:32):
But I admire Travis tremendously and I will always
say that Tremendously, and Iwill always say that Because he
has the metal M-E-T-T-L-E tojust drive right through this.
(33:53):
He's like the blitzkrieg ofpockets and nations.
Speaker 3 (33:55):
Yes, that's a great description.
I love that.
That's perfect.
That's a great way to describeit.
I think it's true, but you know, he has been willing at times
to share some really tragicmoments for him.
(34:18):
He has shared that and the factthat he has shared and I feel
the same thing with you, simon,when you have both shared these
moments of tragedy foryourselves in some way that
inspires others to say, okay, Ican see that they are not having
(34:45):
a party here.
It's not always every day.
Oh, I'm doing this, I'm doingthat, I'm feeling great, I'm
having a good day, I can seethat, and that gives validation
to someone who really isstruggling, at the same time,
knowing that you've come out onthe other side, that you did get
(35:07):
through it, that you are here,you're present, that you are
writing something, you aremaking a statement, you're
making your voice heard, and Ithink there's so much value and
validity in giving people avoice to be able to express what
(35:27):
they're going through, even thenegative shit that happens and
there's plenty of it, you know.
Speaker 1 (35:35):
I agree completely.
I also think that hearing frompeople who are having a bad time
can be very rejuvenating forpeople who are having a good
time Right.
They should know that it's notall as you say.
(35:58):
You know it's not all sweetnessand light.
Speaker 3 (36:03):
No, it's not.
So on that note.
Speaker 1 (36:07):
Yes on that note.
Speaker 3 (36:09):
On that note, it's not all sweetness and light, but
I think it's good to say thatwe are here, we're having some
impact, we're helping to makepeople live their absolute best
life, whatever that looks likeand it's different for Travis,
it's different for you, it'sdifferent for Mike, it's
(36:30):
different for everyone but we'redoing it, and we're doing it
collectively.
We're doing it knowing that wecan reach out, that you can pick
up the phone and call Travis,that he can pick up the phone
and call you, that Mike canreach out to you, that we can
reach out, that you can pick upthe phone and call Travis, that
he can pick up the phone andcall you, that Mike can reach
out to you, that we know thatcollectively, if we stand
together, we can make changes.
(36:50):
And that goes for everythingfrom research to medications to
emotional support.
And I think it's important forus to acknowledge that we're
doing this together andcollectively.
Speaker 1 (37:07):
Yes.
I think that's a reallyimportant point, by the way.
Speaker 3 (37:11):
Yeah, and I love that we have been able to bring this
together today, travis, and I'mso glad that we have you here,
simon.
It's been really a verywonderful conversation and
hopefully we can do it againanother time.
It's been really great.
Speaker 2 (37:28):
Yes, simon, thank you for sharing your story, or part
of it, and I wholeheartedlyagree with everything that you
(37:49):
said.
I may not show it, but I havehad challenges and days where
(38:12):
I'm less lit-screegy.
I'm sure you have so it is niceto hear the other side of it.
(38:35):
This is a wrap, bing.
Welcome to I'm Not Dead Yet, with Judy and Travis,
a podcast about living anextraordinary life with
extraordinary circumstances.
Speaker 2 (00:16):
Welcome to the I'm Not Dead Yet podcast.
I'm your co-host, TravisRobinson.
I was diagnosed withParkinson's disease at age 35 in
(00:48):
2014.
Speaker 3 (00:55):
And I'm your other co-host, Judy Yarris.
My husband, Sandy, hadParkinson's disease for 18 years
.
I was his care partner sincedisease.
Speaker 2 (01:13):
for 18 years I was his care partner.
Today's episode we'll betalking with Simon Garlick.
Speaker 1 (01:21):
Hi Simon, hi Simon, hi Dad.
Speaker 3 (01:22):
Just to give our listeners a little background.
Simon Hi there, Just to giveour listeners a little
background.
Simon was born and bred in theUK, so I thought that's kind of
cool.
You'll hear this wonderfulaccent and Simon was a
screenwriter and now he is acopywriter.
And I think that's all we'regoing to tell you about Simon,
because we're going to share alot more with him and about him.
(01:44):
But welcome.
I just want to welcome you tothe podcast today.
Speaker 1 (01:47):
Simon, thank you very much.
It's a great honor to be here.
Speaker 3 (01:50):
We're excited.
Can you share with us a littlebit about your journey with
Parkinson's?
When you got it, what was yourlife like?
How it has?
Just give us a littlebackground.
Speaker 1 (02:04):
Yeah, I got Parkinson's 10 years ago as well
, I think, same as Travis.
I'm a little older.
I started a little older.
I got it when I was 51.
You do the math as to how old Iam.
I got it quite quickly.
(02:24):
A lot of people kind of spendyears getting diagnosed and I
just had this feeling thatsomething was up.
And I went to see an eminentmovement disorder specialist in
London and here and they bothconcurred that I had the dreaded
(02:47):
Parkinson's PD.
Initially I was fine, becauseeveryone's initially fine when
they have Parkinson's Well, noteveryone.
But people who are diagnosedquite quickly, suppose, have
more of a honeymoon than peoplewho aren't, and I.
(03:10):
But it progressed quite fastand my major symptom, my major
sort of phenotype, was dystonia,which for those who are
(03:31):
uninitiated is spasms andinvoluntary movement muscle.
It's not spasms, it'sinvoluntary muscle contractions,
cramping.
Speaker 3 (03:42):
Cramping and contractions.
Speaker 1 (03:44):
Yeah, and they became very, very bad quite quickly
and I had DBS and then I had itagain.
So I think Travis has got twoDBSs, so him and I are catching
up.
One will win when we have ourthird.
Speaker 3 (04:04):
I think just for clarity, because we have some
people that may not know whatDBS is and that is deep brain
stimulation.
Speaker 1 (04:13):
Deep brain stimulation.
They stick a couple ofelectrodes into a certain target
of the brain and when you'vegot tremor, think it's a bit,
it's a better target because you, you flip, flip around with the
uh controls of the dbs and theand then the tremor goes away.
(04:39):
But with dystonia it's a lotmore difficult to find the
target and that has been thecase with me.
It's been like finding a well,a pin in a haystack.
To be honest, I have neverreally conquered it.
Speaker 3 (05:01):
So you're still struggling with the dystonia
after 10 years.
Speaker 1 (05:05):
Yeah, and it's getting worse, naturally.
Of course I've now.
I worked for a while and Istopped working a year ago.
That wasn't me stopping working, that was them stopping me
working.
But I'm finding it a littlechallenging to be honest with
(05:28):
you.
The parkin parkinson's is is isa disease, as I was, as was put
to me a long time ago, whichyou're in a club with judy
travis and others and you justwell, judy's not in the club
with Judy Travis and others andyou just well, judy's not in the
club.
Actually she was an associatemember.
Speaker 3 (05:48):
Associate member yes.
Speaker 1 (05:51):
Good way to put it and you just don't want to be
this.
It's a bit sort of the oppositeof Groucho Marx, who wouldn't
join a club that would take himas a member here.
You wouldn't want to.
You join that club club and youdefinitely don't want to be a
member.
Speaker 3 (06:10):
Right, that's a good way to put it.
Speaker 1 (06:15):
So I'm a member and people have lots of different
responses to it and I can't saythat my response and I'll be
honest here has been as upbeatas, say, travis.
I haven't climbed kilimanjarojust yet, um, and I think I'm
(06:38):
I'm not winning the battle, Ithink.
I think I think a lot ofparkinson, I think a lot of
Parkinson's dialogue is aboutperseverance, gutting it out,
stuff like that.
And I'll fully admit thatthere's another side to that,
which is those who find itdifficult.
Speaker 3 (06:58):
To do the fighting absolutely.
Speaker 1 (07:00):
To do the fighting.
I suffer from apathy fatigueand I look at Travis and I
marvel at him because he hasmanaged to.
I think a lot of it's got to dowith his personality prior to
Parkinson's, if I may say so andchallenge me if I'm wrong,
(07:25):
Travis.
Speaker 3 (07:28):
Neither of us have known him before his PD, so we
don't know.
Speaker 2 (07:31):
But we have to assume I agree with you.
Speaker 1 (07:35):
I've asked him on phone calls, as friends, and you
know I'm having some problems,problems I won't deny it in
front of the world's public anduh, you know I have some
dystonia symptoms which arereally debilitating and but I
(08:00):
can still.
I know that the dbs is workingbecause when I turn it off, when
it's turned off in a controlledenvironment with a specialist
nearby, I go completely solid.
Speaker 2 (08:14):
Wow.
Speaker 1 (08:15):
I'm like a person from Pompeii after the Vesuvius
eruption.
Speaker 3 (08:23):
Right, so it just you freeze completely, which I
think.
This is what some people don'tunderstand is that this is a
very real part of Parkinson'sand some people do not
experience that.
But when you do, it is a bitfrightening and so uncomfortable
and maybe there's another wordother than uncomfortable it can
(08:45):
be painful, correct andfrustrating, beyond frustrating,
probably.
Speaker 1 (08:51):
Well, you realize that even though the DBS, you
think it's not working, but itreally really is.
And I had DBS in two separatetargets the DBS for the
uninitiated it goes into targetsin the brain and typical for
Parkinson's, which they callidiopathic.
(09:12):
I like to vary that and call itidiopathic.
It's like no one knows anything.
I mean, even the movementdisorder specialists don't know
that much.
They just know what they knowbetter than we know and their
guesses are far more educatedthan ours.
(09:34):
Yes, but they're still kind ofguessing.
Speaker 3 (09:38):
Yes, they don't know everything about Parkinson's.
They don't know everythingabout the brain and they don't
even know where it starts forindividuals, because there are
so many different versions ofParkinson's.
If one person has Parkinson's,one person has Parkinson's.
Speaker 1 (09:58):
Yeah, I mean everyone is different in Parkinson's
Right With the, because thereare two types of symptoms.
I mean for those who don't know.
I mean, am I out of place bysaying that?
Speaker 3 (10:10):
No, I think, just say it.
Speaker 1 (10:14):
For those who don't know, then there's motor
symptoms, which affect the wayyou move, and non-motor symptoms
, and those non-motor symptomsgo on and on and on.
In fact, when I was firstdiagnosed by an eminent MDS
(10:34):
movement disorder specialist, drTagliati, michele Tagliati, one
of his junior doctors, came inand ran through this list of
what must have been 40 non-motorsymptoms, and in fact,
sometimes non-motor symptoms cansort of dominate your
(10:58):
Parkinson's experience.
Speaker 3 (11:00):
Yes, that's very true for many people.
Some people don't have tremorsor dystonia.
Speaker 1 (11:06):
Yeah, some people don't have tremors or dystonia.
Some people have other movementdisorders, but slowness and
rigidity is a key part of it.
So there are some common traits, but even the common traits
express themselves differently.
But yeah, I mean, the list ofnon-motor symptoms just goes on
(11:27):
and on and on, and MicheleTagliati and I think he's kind
of right calls Parkinson's asyndrome.
It's more of a collection ofdiseases than it is one disease,
Mm-hmm.
And it's not like and unlikehaving a heart surgery or a
heart problem, where you knowwhat the problem is because you
(11:48):
can see it for the most part.
I mean I realize I'm speakingto you, Judy, and your husband-
Right, right, no, absolutely.
Speaker 3 (11:59):
I mean Sandy suffered so terribly from heart disease
from a very young age in hisearly 50s or 50, 51, and it was
very clear what they needed todo if they could do it.
That was the question.
But they knew what was causingthe problem.
They could see it, it was clear, through scans and until very
(12:23):
recently you couldn't even tellif someone had Parkinson's
through a scan.
Now they do the DAT scan andthey do a skin test, but it's
still not definitive as to whereand how this has started.
Speaker 1 (12:41):
Yeah, I mean, it's a terrible disease, but also it's
wrapped by not knowing Right.
You know there are things thatyou can do to improve your
situation, but even they are notproven.
Speaker 3 (13:03):
Right, it's all trial and error and I think it's very
important for people tounderstand this.
So we have two people here onthis podcast Travis, whose
experience, although he hasdefinitely and I have seen
Travis.
I've spent a lot of time withhim and I have seen him.
I would say, travis, I've seenyou in pretty bad shape, would
(13:26):
you say.
I've seen you in some of yourlow moments, but I've also seen
him through his high moments andI think what people need to
understand, as Simon is saying,it's a terrible disease.
It is, it is a terrible disease.
(13:46):
There's no question about it.
However, there is another sideto it that through that, even
though it's so challenging andso difficult and sometimes feels
impossible to get through, youcan do other things and live a
(14:07):
very full life, which I want tosay in Travis's case, he is just
sort of giving everybody themiddle finger.
He's saying fuck you toeveryone and this is what he
does.
He just goes on and does whathe does.
And for you, simon, I thinkyou're finding, because of more
of the non-motor symptoms, ofthe depression and apathy
(14:30):
impacting you so much, it makesit a little more difficult for
you to be able to put the middlefinger up and get on with it.
Am I right?
Is that okay to say, safe tosay?
Speaker 1 (14:43):
Okay, safe to say?
Yeah, I mean, I think there area lot of responses to
Parkinson's, but there is the.
No one wants to hear a sobstory, but there are a lot of
people out there who are hidingsob stories.
Speaker 3 (15:01):
Yes, of course, and are afraid to share them.
And I think that's part a bigissue for people with
Parkinson's not having a voiceto be able to share their sob
story.
Maybe hear someone else's sobstory and go, oh, but now how
are they approaching it?
(15:21):
What are they doing to helpthemselves?
And it may or may not work foryou, right, and it may or may
not work for you, right?
Speaker 1 (15:28):
Yeah, I mean I think you find out who you are and
I'll be honest with you, I'm notthat happy with who I am and
you know I represent a cohort ofpeople with Parkinson's who are
struggling to put up theirmiddle finger.
(15:49):
Mm-hmm, I mean, mean, that'sone of the things I enjoy about
talking to travis is he doesn'ttake any of my shit.
He says, get through it, right,but it really is hard,
especially when you're dealingwith umstonia, which is, I would
(16:12):
say, I mean, I don't know this,but I would say it's probably
one of the nastiest phenotypesof Parkinson's.
Speaker 3 (16:20):
Yes, I agree with you , simon.
I think it is very debilitatingand a lot of people that
fortunately do not have it don'tquite understand that.
But yeah, have you tried?
I'm just curious because I knowpeople that have had dystonia
in different parts in theirshoulders, in their toes,
(16:40):
curling in their feet and andhave you done the botox shots to
try to help it?
Speaker 1 (16:48):
done bot Botox twice hasn't helped Didn't help.
Speaker 3 (16:51):
Okay, that's what I wondered.
And here is where, just to givean example, sandy had terrible
dystonia in his right arm andright shoulder and it was
terrible.
They did Botox on him and itwas like a dream.
It just totally worked and hedidn't need it again for
(17:13):
literally it felt like it wasyears.
It was like two years orsomething before he had to go
back again.
I know other people that haveit in their neck or their
shoulder and they're going backevery three months regularly for
the Botox.
Three months regularly for theBotox.
(17:36):
So I want people to understandhow Parkinson's is so unique to
the individual that you havethese different cases where some
people respond to the treatmentof the Botox, some people do
not.
Some people get quick relief,some get.
It takes a while, it takes manytreatments to make it happen.
There's no quick fix and theydon't have a specific.
(17:56):
They have specific ways oftreating it, but it may not be
right for you necessarily.
That's the point I kind of wantto make here.
Speaker 1 (18:05):
Yeah, I mean I am the poster child, for I mean this
has nothing to do with thedoctors, they're not.
These are great doctors.
Speaker 3 (18:11):
These are great doctors.
Yes, I mean, I am the posterchild for I mean this is nothing
to do with the doctors.
Speaker 1 (18:15):
They're not.
These are great doctors.
These are great doctors.
Yes, we are talking about them.
This is to do with just comingacross a patient who is, you
know, pain in the ass.
As far as symptoms areconcerned, I mean, I am just the
poster child for medicationsand procedures that don't work
and it's not helpful.
Speaker 3 (18:35):
No, and it's understandable as to why you
would feel this sense of thedepression that you've
experienced, the apathy thatyou're experiencing and that
debilitating feeling that youhave of not being able to even
get the middle finger up.
You know, and I think that's agreat way of describing it, oh
(18:58):
good, we're getting a goodmiddle finger right now.
Okay, perfect, good quality.
Thank you, simon.
We have to make sure ourlisteners know.
But, travis, when you've hadyour DBS, have you been pretty
satisfied with that?
Speaker 2 (19:14):
The second time?
Yes, Okay.
But, it was something that myfirst go-round, with it a whole
(19:59):
lap of salt.
Speaker 3 (20:02):
Okay.
Speaker 2 (20:05):
When it does not quite work.
Where do you go from there?
Speaker 3 (20:21):
Yeah, I think you're right.
We'll have to dedicate anepisode to this, Maybe just a
whole DBS episode, I think wouldbe great.
I like this idea.
I mean I think that there'svalue for people to understand
because today it is such acommon treatment now and the
technology is so amazing and soprecise and there's new things
(20:48):
on the market now where, interms of the programming is
incredible.
I think a new one just gotreleased from Medtronic.
But I think and it doesn'tmatter which company you go with
they're all so high tech andthe care that you get from them.
We can go into detail when wedo the episode, but I think it's
important for people tounderstand that DBS is just one
(21:13):
treatment, it's one thing thatthey can do for Parkinson's and
not everyone may respond orqualify for it.
So you know, I mean, I thinkthat's part of it too.
Speaker 1 (21:26):
Well, I think DBS.
I mean I remember when I firsthad it I thought it was going to
be.
I mean I was told I knew itwasn't going to be a panacea,
but I have to say I reallytrusted it a lot and I didn't
realize, and it also changedduring the course of it.
That's why I ended up havingthe second one, which was in.
(21:49):
It gets a bit technical, butthe second one was in a target
in the brain which was moreconducive to dealing with
dystonia.
Okay, the first one wasn't okaythat makes sense.
The sub subthalamic nucleus, allthat stuff, because that will
(22:10):
scare off all our listeners.
Look, if someone saidsub-thalamic nucleus to you in a
podcast, you'd run as well.
Yeah, but it goes back to theoriginal point about Parkinson's
, which is that they just youknow, my doctors have been some
(22:34):
of the best in the world, butthey just don't know.
I mean, no one knows, and thatis a very frustrating thing.
There's no cure and, in termsof maintenance of the disease,
we're always going back tocarbidopa, levodopa and the
amount of new formulations ofthat, whether it's into the gut
(22:58):
or a different type of releasemechanism in a capsule.
Speaker 3 (23:03):
I mean carbidopa lev Dope is freely available in
bananas, right, right, there arecertain foods that you can eat,
right right, exactly, but youcould never get enough from food
.
So I do want to say that, yeah,you couldn't eat enough bananas
(23:26):
to make that happen.
Yeah, yeah, exactly.
You know, as I speak with you,and I and Simon, I've really
gotten to know you a lot more inthe last I would say this last
year and I, you know, I feelthere is a certain strength that
(23:49):
both of you bring with yourParkinson's and I want to talk a
little bit about that, becausewe're talking about how
difficult Parkinson's is andwhat you know that it's a sucky
disease and no one wants it, noone wants to be in the club.
But even though you do thingsdifferently, you both bring a
(24:09):
certain amount of strength.
And where I see your strength,simon, is that, although you
don't feel strong with this, youhave been able to get yourself
to a support group and you'vebeen willing to share about your
feelings and share thefrustration and the difficulty
(24:29):
that you are having, and thereis so much value to that and I
think that's partly why Travisand I wanted to even bring you
on into this conversation todaywas.
You know, you have been veryopen about the fact that it's a.
It's been so difficult for youand a lot of people don't do
(24:50):
that and I guess my question foryou have you found that support
groups have helped you withthat in, in giving you strength
to kind of fight on and get outthere and put up your shield and
get your sword ready and startattacking?
Speaker 1 (25:06):
Well, it's funny because I started very early on
in the disease going to asupport group and then I stopped
because one of the doctors saidwhy are you going to this
support group when?
Um, so I went to a supportgroup at the very beginning of
my uh, parkinson's and thedoctor said why are you going?
(25:32):
I mean, you're going to seethings that you know will come
down the pipe for you.
And it was true.
So I stopped going.
And then, about nine yearslater, I started going again and
mike weinman's group had beenfolded into this group and that
(25:56):
was the one I went to sorry thatdoesn't you with the were with
the YOPD group.
Speaker 3 (26:00):
Mike's YOPD group.
Mike's YOPD group.
Speaker 1 (26:03):
Yeah, Even though I was sort of not quite I'm not, I
was diagnosed 15 years afterTravis.
In terms of Right.
Speaker 3 (26:13):
But you're still considered.
You were in your fifties andyou were still considered YOPD.
Yeah, I think so.
Yeah, absolutely A hundredpercent.
And just so people know, if wehave listeners that don't know
what that means, it means youngonset Parkinson's disease.
So usually if you're under 55or under 50, probably, 55 is
(26:34):
probably the cutoff AlthoughSandy was 61, but they felt he
was so young, thinking that theytold us oh, you should go to
the YOPD group.
He did go to one of the otherones and he did not like it as
much, so he also started with aYOPD group.
Speaker 1 (26:49):
Well, I think the one that I went to was a very good
group.
It was extremely good, but I didsee things that and I was a
relatively normal person.
But the thing is it creeps upon you pretty quick and the
(27:12):
symptoms come fast and furiousafter a while and it's been very
frustrating because of the DBS,because you can't help thinking
of it, despite the fact I saidit wasn't a panacea, that it is
a panacea.
You can't help thinking theyput this fancy gizmology into
your brain, in our case twice,and you can't help thinking that
(27:36):
that's going to do it, going toclear it for a while.
Do it going to clear it for awhile and when it doesn't you
know you do get pretty down.
Speaker 3 (27:54):
Of course, I think it makes sense that you would get
down and I think the expectationbut I think part of it is maybe
, you know, travis, you sort ofhave taken this attitude of
having no expectations, like youtry something.
And I remember when you startedon Raitari and you just said
(28:21):
I'm going to go.
I said, what are you doing forthis?
How are you going to stop it?
And you went nope, I'm goingback to the doctor.
Nope, I'm going back.
I'm going to figure this out,I'm going to work through this.
And I remember how it was notan easy road for you and you
still pushed through it.
And I think there's so much tobe said for that of your ability
to be resilient, to just keeppushing and going through, and I
(28:48):
think we're going to hear thatwhen we talk to you about your
early days of DBS, your firstDBS surgery.
The other thing I want to bringup here now is that Simon is
sort of pushing himself now,because one thing we didn't say
at the beginning of this podcastthat this is our first us on
(29:18):
the website at PCLA andhopefully we're not going to be
censoring ourselves.
We've already dropped a fewF-bombs in this episode.
So I think it's okay.
You know I don't thinkanybody's going to really care,
but you know it's exciting forme because we really get to have
(29:43):
people know that we are part ofa community and I think, with
the depression and with theisolation and everything that
happened during the pandemic,more people were so impacted by
that isolation.
It made it really really hard,and PCLA was able to start
online support groups and getthings rolling.
(30:05):
So, just so you know, we'reexcited to be part of this
organization and be able tobring this to you through PCLA.
And, at the same time, simon,who's a writer and I did not
know that when I first met himand then getting to know him, I
discovered that he's a writerSimon is going to start.
(30:27):
He has a column called SimonSays that is going to be part of
the PCLA new website, which isgoing to launch in a couple of
weeks, and we're really excitedabout this.
So, simon, I know that you arestruggling and fighting and
pushing and a littledisappointed with the fact that
(30:48):
you're not out there jumping ontrampolines, but to me, the fact
that you've written some reallyimportant, wonderful articles
that talk about PD and howpeople journey through it and
how you've journeyed through it,and your perspective and
others' perspectives, and Ithink there's so much value to
(31:10):
this.
I love that both of you are nowpart I mean, you've always been
part of the PCLA family, butnow you're really integrated
into PCLA because you're goingto be on the website in a couple
different ways and that'sexciting for me to see that it's
part of our new launch thatwe're doing and the growth that
(31:31):
the organization has made and ahalf nine years in 2016.
So here we are, folks, we'reright behind you.
We all started this at the sametime.
Speaker 1 (31:50):
I think one of the things I think is important to
recognize and I do this throughmy writing is I don't want to be
a sad sack here, but I thinkthat a point of view that isn't
the conventional inspirationalpoint of view is important.
(32:13):
I mean most people, I meaninspirational stuff is great for
a lot of people, but for most,for some people, it's not.
It's actuallyanti-inspirational.
I know that sounds crazy, andit's only when you talk to
(32:35):
people like travis, who are ableto basically call you on your
BS, that you I mean in apsychologically sound way to do
that, that I think that's whenit's useful for someone like me.
Speaker 3 (32:53):
Yeah absolutely.
Speaker 1 (32:55):
Let me just say something about Travis.
Travis came up with thisconcept called cake or death.
Cake or death.
Marie Antoinette would haveunderstood it quite innately.
But basically it's a sort ofversion of the Jewish what are
you going to do, kind of thing?
You're going to do cake, you'regoing to make the best of it or
(33:18):
are you going to die?
And it's a version of get busyliving or get busy dying, which
is a quote from the ShawshankRedemption.
Speaker 3 (33:27):
I'm doing a lot of quotes here.
Yes, wonderful quote.
Speaker 1 (33:32):
But I admire Travis tremendously and I will always
say that Tremendously, and Iwill always say that Because he
has the metal M-E-T-T-L-E tojust drive right through this.
(33:53):
He's like the blitzkrieg ofpockets and nations.
Speaker 3 (33:55):
Yes, that's a great description.
I love that.
That's perfect.
That's a great way to describeit.
I think it's true, but you know, he has been willing at times
to share some really tragicmoments for him.
(34:18):
He has shared that and the factthat he has shared and I feel
the same thing with you, simon,when you have both shared these
moments of tragedy foryourselves in some way that
inspires others to say, okay, Ican see that they are not having
(34:45):
a party here.
It's not always every day.
Oh, I'm doing this, I'm doingthat, I'm feeling great, I'm
having a good day, I can seethat, and that gives validation
to someone who really isstruggling, at the same time,
knowing that you've come out onthe other side, that you did get
(35:07):
through it, that you are here,you're present, that you are
writing something, you aremaking a statement, you're
making your voice heard, and Ithink there's so much value and
validity in giving people avoice to be able to express what
(35:27):
they're going through, even thenegative shit that happens and
there's plenty of it, you know.
Speaker 1 (35:35):
I agree completely.
I also think that hearing frompeople who are having a bad time
can be very rejuvenating forpeople who are having a good
time Right.
They should know that it's notall as you say.
(35:58):
You know it's not all sweetnessand light.
Speaker 3 (36:03):
No, it's not.
So on that note.
Speaker 1 (36:07):
Yes on that note.
Speaker 3 (36:09):
On that note, it's not all sweetness and light, but
I think it's good to say thatwe are here, we're having some
impact, we're helping to makepeople live their absolute best
life, whatever that looks likeand it's different for Travis,
it's different for you, it'sdifferent for Mike, it's
(36:30):
different for everyone but we'redoing it, and we're doing it
collectively.
We're doing it knowing that wecan reach out, that you can pick
up the phone and call Travis,that he can pick up the phone
and call you, that Mike canreach out to you, that we can
reach out, that you can pick upthe phone and call Travis, that
he can pick up the phone andcall you, that Mike can reach
out to you, that we know thatcollectively, if we stand
together, we can make changes.
(36:50):
And that goes for everythingfrom research to medications to
emotional support.
And I think it's important forus to acknowledge that we're
doing this together andcollectively.
Speaker 1 (37:07):
Yes.
I think that's a reallyimportant point, by the way.
Speaker 3 (37:11):
Yeah, and I love that we have been able to bring this
together today, travis, and I'mso glad that we have you here,
simon.
It's been really a verywonderful conversation and
hopefully we can do it againanother time.
It's been really great.
Speaker 2 (37:28):
Yes, simon, thank you for sharing your story, or part
of it, and I wholeheartedlyagree with everything that you
(37:49):
said.
I may not show it, but I havehad challenges and days where
(38:12):
I'm less lit-screegy.
I'm sure you have so it is niceto hear the other side of it.
(38:35):
This is a wrap, bing.
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