March 20, 2025

The Parkinson's Club: Finding Strength in Struggle

The Parkinson's Club: Finding Strength in Struggle

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


Chapters

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

01:21 - Simon's Parkinson's Journey

05:24 - Dystonia: One of Parkinson's Nastiest Phenotypes

12:20 - DBS: No Guaranteed Panacea

18:36 - Finding Strength in Vulnerability

31:15 - Cake or Death: Different Approaches to PD

35:12 - Power in Community and Shared Voices

Transcript
WEBVTT

00:00:01.842 --> 00:00:12.689
Welcome to I'm Not Dead Yet, with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.

00:00:16.900 --> 00:00:22.475
Welcome to the I'm Not Dead Yet podcast.

00:00:22.475 --> 00:00:29.524
I'm your co-host, Travis Robinson.

00:00:29.524 --> 00:00:53.277
I was diagnosed with Parkinson's disease at age 35 in 2014.

00:00:55.281 --> 00:00:57.750
And I'm your other co-host, Judy Yarris.

00:00:57.750 --> 00:01:01.790
My husband, Sandy, had Parkinson's disease for 18 years.

00:01:01.790 --> 00:01:13.203
I was his care partner since disease.

00:01:13.423 --> 00:01:17.046
for 18 years I was his care partner.

00:01:17.046 --> 00:01:21.052
Today's episode we'll be talking with Simon Garlick.

00:01:21.132 --> 00:01:21.733
Hi Simon, hi Simon, hi Dad.

00:01:22.293 --> 00:01:24.897
Just to give our listeners a little background.

00:01:24.897 --> 00:01:29.242
Simon Hi there, Just to give our listeners a little background.

00:01:29.242 --> 00:01:30.965
Simon was born and bred in the UK, so I thought that's kind of cool.

00:01:30.965 --> 00:01:36.864
You'll hear this wonderful accent and Simon was a screenwriter and now he is a copywriter.

00:01:36.864 --> 00:01:44.129
And I think that's all we're going to tell you about Simon, because we're going to share a lot more with him and about him.

00:01:44.129 --> 00:01:45.391
But welcome.

00:01:45.391 --> 00:01:47.704
I just want to welcome you to the podcast today.

00:01:47.724 --> 00:01:48.346
Simon, thank you very much.

00:01:48.346 --> 00:01:49.631
It's a great honor to be here.

00:01:50.760 --> 00:01:51.501
We're excited.

00:01:51.501 --> 00:01:58.114
Can you share with us a little bit about your journey with Parkinson's?

00:01:58.114 --> 00:02:01.403
When you got it, what was your life like?

00:02:01.403 --> 00:02:02.123
How it has?

00:02:02.123 --> 00:02:04.325
Just give us a little background.

00:02:04.346 --> 00:02:11.735
Yeah, I got Parkinson's 10 years ago as well, I think, same as Travis.

00:02:11.735 --> 00:02:13.236
I'm a little older.

00:02:13.236 --> 00:02:14.365
I started a little older.

00:02:14.365 --> 00:02:16.727
I got it when I was 51.

00:02:16.727 --> 00:02:19.848
You do the math as to how old I am.

00:02:19.848 --> 00:02:24.500
I got it quite quickly.

00:02:24.500 --> 00:02:33.229
A lot of people kind of spend years getting diagnosed and I just had this feeling that something was up.

00:02:33.229 --> 00:02:48.741
And I went to see an eminent movement disorder specialist in London and here and they both concurred that I had the dreaded Parkinson's PD.

00:02:48.741 --> 00:02:57.521
Initially I was fine, because everyone's initially fine when they have Parkinson's Well, not everyone.

00:02:57.521 --> 00:03:10.722
But people who are diagnosed quite quickly, suppose, have more of a honeymoon than people who aren't, and I.

00:03:10.722 --> 00:03:35.030
But it progressed quite fast and my major symptom, my major sort of phenotype, was dystonia, which for those who are uninitiated is spasms and involuntary movement muscle.

00:03:35.030 --> 00:03:41.973
It's not spasms, it's involuntary muscle contractions, cramping.

00:03:42.199 --> 00:03:43.665
Cramping and contractions.

00:03:44.388 --> 00:03:53.608
Yeah, and they became very, very bad quite quickly and I had DBS and then I had it again.

00:03:53.608 --> 00:04:00.001
So I think Travis has got two DBSs, so him and I are catching up.

00:04:00.001 --> 00:04:02.024
One will win when we have our third.

00:04:04.448 --> 00:04:12.747
I think just for clarity, because we have some people that may not know what DBS is and that is deep brain stimulation.

00:04:13.207 --> 00:04:14.151
Deep brain stimulation.

00:04:14.151 --> 00:04:39.422
They stick a couple of electrodes into a certain target of the brain and when you've got 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 the and then the tremor goes away.

00:04:39.422 --> 00:04:45.954
But with dystonia it's a lot more difficult to find the target and that has been the case with me.

00:04:45.954 --> 00:04:54.913
It's been like finding a well, a pin in a haystack.

00:04:54.913 --> 00:04:59.831
To be honest, I have never really conquered it.

00:05:01.482 --> 00:05:04.610
So you're still struggling with the dystonia after 10 years.

00:05:05.459 --> 00:05:08.088
Yeah, and it's getting worse, naturally.

00:05:08.629 --> 00:05:10.502
Of course I've now.

00:05:10.502 --> 00:05:15.432
I worked for a while and I stopped working a year ago.

00:05:15.432 --> 00:05:19.666
That wasn't me stopping working, that was them stopping me working.

00:05:19.666 --> 00:05:29.033
But I'm finding it a little challenging to be honest with you.

00:05:29.033 --> 00:05:46.459
The parkin parkinson's is is is a disease, as I was, as was put to me a long time ago, which you're in a club with judy travis and others and you just well, judy's not in the club with Judy Travis and others and you just well, judy's not in the club.

00:05:46.459 --> 00:05:48.324
Actually she was an associate member.

00:05:48.365 --> 00:05:49.629
Associate member yes.

00:05:51.182 --> 00:05:54.767
Good way to put it and you just don't want to be this.

00:05:54.767 --> 00:06:04.300
It's a bit sort of the opposite of Groucho Marx, who wouldn't join a club that would take him as a member here.

00:06:04.300 --> 00:06:06.045
You wouldn't want to.

00:06:06.045 --> 00:06:09.333
You join that club club and you definitely don't want to be a member.

00:06:10.261 --> 00:06:12.288
Right, that's a good way to put it.

00:06:15.684 --> 00:06:29.406
So I'm a member and people have lots of different responses to it and I can't say that my response and I'll be honest here has been as upbeat as, say, travis.

00:06:29.406 --> 00:06:40.064
I haven't climbed kilimanjaro just yet, um, and I think I'm I'm not winning the battle, I think.

00:06:40.064 --> 00:06:50.071
I think I think a lot of parkinson, I think a lot of Parkinson's dialogue is about perseverance, gutting it out, stuff like that.

00:06:50.071 --> 00:06:57.355
And I'll fully admit that there's another side to that, which is those who find it difficult.

00:06:58.737 --> 00:07:00.377
To do the fighting absolutely.

00:07:00.980 --> 00:07:01.940
To do the fighting.

00:07:01.940 --> 00:07:15.471
I suffer from apathy fatigue and I look at Travis and I marvel at him because he has managed to.

00:07:15.471 --> 00:07:25.557
I think a lot of it's got to do with his personality prior to Parkinson's, if I may say so and challenge me if I'm wrong, Travis.

00:07:28.081 --> 00:07:31.490
Neither of us have known him before his PD, so we don't know.

00:07:31.879 --> 00:07:34.704
But we have to assume I agree with you.

00:07:35.682 --> 00:08:01.064
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 and uh, you know I have some dystonia symptoms which are really debilitating and but I can still.

00:08:01.064 --> 00:08:13.829
I know that the dbs is working because when I turn it off, when it's turned off in a controlled environment with a specialist nearby, I go completely solid.

00:08:14.571 --> 00:08:14.730
Wow.

00:08:15.639 --> 00:08:22.593
I'm like a person from Pompeii after the Vesuvius eruption.

00:08:23.434 --> 00:08:26.877
Right, so it just you freeze completely, which I think.

00:08:26.877 --> 00:08:36.462
This is what some people don't understand is that this is a very real part of Parkinson's and some people do not experience that.

00:08:36.462 --> 00:08:51.899
But when you do, it is a bit frightening and so uncomfortable and maybe there's another word other than uncomfortable it can be painful, correct and frustrating, beyond frustrating, probably.

00:08:51.940 --> 00:08:57.424
Well, you realize that even though the DBS, you think it's not working, but it really really is.

00:08:57.424 --> 00:09:12.952
And I had DBS in two separate targets the DBS for the uninitiated it goes into targets in the brain and typical for Parkinson's, which they call idiopathic.

00:09:12.952 --> 00:09:16.423
I like to vary that and call it idiopathic.

00:09:16.423 --> 00:09:19.248
It's like no one knows anything.

00:09:19.248 --> 00:09:27.067
I mean, even the movement disorder specialists don't know that much.

00:09:27.067 --> 00:09:34.044
They just know what they know better than we know and their guesses are far more educated than ours.

00:09:34.044 --> 00:09:38.272
Yes, but they're still kind of guessing.

00:09:38.572 --> 00:09:42.587
Yes, they don't know everything about Parkinson's.

00:09:42.587 --> 00:09:53.854
They don't know everything about the brain and they don't even know where it starts for individuals, because there are so many different versions of Parkinson's.

00:09:53.854 --> 00:09:58.371
If one person has Parkinson's, one person has Parkinson's.

00:09:58.390 --> 00:10:04.389
Yeah, I mean everyone is different in Parkinson's Right With the, because there are two types of symptoms.

00:10:04.389 --> 00:10:06.667
I mean for those who don't know.

00:10:06.667 --> 00:10:10.340
I mean, am I out of place by saying that?

00:10:10.399 --> 00:10:12.649
No, I think, just say it.

00:10:14.241 --> 00:10:26.904
For those who don't know, then there's motor symptoms, which affect the way you move, and non-motor symptoms, and those non-motor symptoms go on and on and on.

00:10:26.904 --> 00:10:59.413
In fact, when I was first diagnosed by an eminent MDS movement disorder specialist, dr Tagliati, michele Tagliati, one of his junior doctors, came in and ran through this list of what must have been 40 non-motor symptoms, and in fact, sometimes non-motor symptoms can sort of dominate your Parkinson's experience.

00:11:00.179 --> 00:11:03.488
Yes, that's very true for many people.

00:11:03.488 --> 00:11:05.753
Some people don't have tremors or dystonia.

00:11:06.919 --> 00:11:08.868
Yeah, some people don't have tremors or dystonia.

00:11:08.868 --> 00:11:16.929
Some people have other movement disorders, but slowness and rigidity is a key part of it.

00:11:16.929 --> 00:11:23.508
So there are some common traits, but even the common traits express themselves differently.

00:11:23.508 --> 00:11:34.467
But yeah, I mean, the list of non-motor symptoms just goes on and on and on, and Michele Tagliati and I think he's kind of right calls Parkinson's a syndrome.

00:11:34.467 --> 00:11:40.852
It's more of a collection of diseases than it is one disease, Mm-hmm.

00:11:40.852 --> 00:11:51.552
And it's not like and unlike having a heart surgery or a heart problem, where you know what the problem is because you can see it for the most part.

00:11:51.552 --> 00:11:58.668
I mean I realize I'm speaking to you, Judy, and your husband- Right, right, no, absolutely.

00:11:59.220 --> 00:12:12.953
I mean Sandy suffered so terribly from heart disease from a very young age in his early 50s or 50, 51, and it was very clear what they needed to do if they could do it.

00:12:12.953 --> 00:12:14.381
That was the question.

00:12:14.381 --> 00:12:17.990
But they knew what was causing the problem.

00:12:17.990 --> 00:12:27.703
They could see it, it was clear, through scans and until very recently you couldn't even tell if someone had Parkinson's through a scan.

00:12:27.703 --> 00:12:38.732
Now they do the DAT scan and they do a skin test, but it's still not definitive as to where and how this has started.

00:12:41.942 --> 00:12:53.096
Yeah, I mean, it's a terrible disease, but also it's wrapped by not knowing Right.

00:12:53.096 --> 00:13:02.075
You know there are things that you can do to improve your situation, but even they are not proven.

00:13:03.241 --> 00:13:08.690
Right, it's all trial and error and I think it's very important for people to understand this.

00:13:08.690 --> 00:13:19.408
So we have two people here on this podcast Travis, whose experience, although he has definitely and I have seen Travis.

00:13:19.408 --> 00:13:22.929
I've spent a lot of time with him and I have seen him.

00:13:22.929 --> 00:13:26.812
I would say, travis, I've seen you in pretty bad shape, would you say.

00:13:26.812 --> 00:13:43.142
I've seen you in some of your low moments, but I've also seen him through his high moments and I think what people need to understand, as Simon is saying, it's a terrible disease.

00:13:43.142 --> 00:13:46.849
It is, it is a terrible disease.

00:13:46.849 --> 00:13:48.390
There's no question about it.

00:13:48.851 --> 00:14:14.403
However, there is another side to it that through that, even though it's so challenging and so difficult and sometimes feels impossible to get through, you can do other things and live a very full life, which I want to say in Travis's case, he is just sort of giving everybody the middle finger.

00:14:14.403 --> 00:14:20.114
He's saying fuck you to everyone and this is what he does.

00:14:20.114 --> 00:14:22.245
He just goes on and does what he does.

00:14:22.245 --> 00:14:39.494
And for you, simon, I think you're finding, because of more of the non-motor symptoms, of the depression and apathy impacting you so much, it makes it a little more difficult for you to be able to put the middle finger up and get on with it.

00:14:39.494 --> 00:14:40.115
Am I right?

00:14:40.115 --> 00:14:43.206
Is that okay to say, safe to say?

00:14:43.807 --> 00:14:44.811
Okay, safe to say?

00:14:44.811 --> 00:14:51.952
Yeah, I mean, I think there are a lot of responses to Parkinson's, but there is the.

00:14:51.952 --> 00:15:00.573
No one wants to hear a sob story, but there are a lot of people out there who are hiding sob stories.

00:15:01.200 --> 00:15:04.922
Yes, of course, and are afraid to share them.

00:15:04.922 --> 00:15:15.589
And I think that's part a big issue for people with Parkinson's not having a voice to be able to share their sob story.

00:15:15.589 --> 00:15:21.351
Maybe hear someone else's sob story and go, oh, but now how are they approaching it?

00:15:21.351 --> 00:15:23.894
What are they doing to help themselves?

00:15:23.894 --> 00:15:28.255
And it may or may not work for you, right, and it may or may not work for you, right?

00:15:28.275 --> 00:15:49.072
Yeah, I mean I think you find out who you are and I'll be honest with you, I'm not that happy with who I am and you know I represent a cohort of people with Parkinson's who are struggling to put up their middle finger.

00:15:49.072 --> 00:15:58.011
Mm-hmm, I mean, mean, that's one of the things I enjoy about talking to travis is he doesn't take any of my shit.

00:15:58.011 --> 00:16:19.591
He says, get through it, right, but it really is hard, especially when you're dealing with umstonia, which is, I would say, I mean, I don't know this, but I would say it's probably one of the nastiest phenotypes of Parkinson's.

00:16:20.100 --> 00:16:22.107
Yes, I agree with you, simon.

00:16:22.107 --> 00:16:31.676
I think it is very debilitating and a lot of people that fortunately do not have it don't quite understand that.

00:16:31.676 --> 00:16:34.423
But yeah, have you tried?

00:16:34.423 --> 00:16:47.004
I'm just curious because I know people that have had dystonia in different parts in their shoulders, in their toes, curling in their feet and and have you done the botox shots to try to help it?

00:16:48.326 --> 00:16:51.081
done bot Botox twice hasn't helped Didn't help.

00:16:51.221 --> 00:16:52.224
Okay, that's what I wondered.

00:16:52.224 --> 00:17:04.954
And here is where, just to give an example, sandy had terrible dystonia in his right arm and right shoulder and it was terrible.

00:17:04.954 --> 00:17:08.667
They did Botox on him and it was like a dream.

00:17:08.667 --> 00:17:15.592
It just totally worked and he didn't need it again for literally it felt like it was years.

00:17:15.592 --> 00:17:19.131
It was like two years or something before he had to go back again.

00:17:19.131 --> 00:17:27.609
I know other people that have it in their neck or their shoulder and they're going back every three months regularly for the Botox.

00:17:27.609 --> 00:17:36.082
Three months regularly for the Botox.

00:17:36.082 --> 00:17:45.365
So I want people to understand how Parkinson's is so unique to the individual that you have these different cases where some people respond to the treatment of the Botox, some people do not.

00:17:45.365 --> 00:17:48.269
Some people get quick relief, some get.

00:17:48.269 --> 00:17:51.761
It takes a while, it takes many treatments to make it happen.

00:17:51.761 --> 00:17:56.435
There's no quick fix and they don't have a specific.

00:17:56.435 --> 00:18:02.854
They have specific ways of treating it, but it may not be right for you necessarily.

00:18:02.854 --> 00:18:05.141
That's the point I kind of want to make here.

00:18:05.441 --> 00:18:10.147
Yeah, I mean I am the poster child, for I mean this has nothing to do with the doctors, they're not.

00:18:10.147 --> 00:18:11.529
These are great doctors.

00:18:11.631 --> 00:18:12.731
These are great doctors.

00:18:12.731 --> 00:18:15.016
Yes, I mean, I am the poster child for I mean this is nothing to do with the doctors.

00:18:15.036 --> 00:18:15.276
They're not.

00:18:15.276 --> 00:18:15.757
These are great doctors.

00:18:15.757 --> 00:18:16.438
These are great doctors.

00:18:16.438 --> 00:18:17.839
Yes, we are talking about them.

00:18:17.839 --> 00:18:23.702
This is to do with just coming across a patient who is, you know, pain in the ass.

00:18:23.702 --> 00:18:34.467
As far as symptoms are concerned, I mean, I am just the poster child for medications and procedures that don't work and it's not helpful.

00:18:35.369 --> 00:18:52.768
No, and it's understandable as to why you would feel this sense of the depression that you've experienced, the apathy that you're experiencing and that debilitating feeling that you have of not being able to even get the middle finger up.

00:18:52.768 --> 00:19:00.268
You know, and I think that's a great way of describing it, oh good, we're getting a good middle finger right now.

00:19:00.268 --> 00:19:03.413
Okay, perfect, good quality.

00:19:03.413 --> 00:19:05.041
Thank you, simon.

00:19:05.041 --> 00:19:08.207
We have to make sure our listeners know.

00:19:08.207 --> 00:19:13.815
But, travis, when you've had your DBS, have you been pretty satisfied with that?

00:19:14.819 --> 00:19:18.127
The second time?

00:19:18.127 --> 00:19:20.814
Yes, Okay.

00:19:20.814 --> 00:20:01.378
But, it was something that my first go-round, with it a whole lap of salt.

00:20:02.700 --> 00:20:03.040
Okay.

00:20:05.222 --> 00:20:12.069
When it does not quite work.

00:20:12.069 --> 00:20:19.297
Where do you go from there?

00:20:21.605 --> 00:20:22.548
Yeah, I think you're right.

00:20:22.548 --> 00:20:28.450
We'll have to dedicate an episode to this, Maybe just a whole DBS episode, I think would be great.

00:20:28.450 --> 00:20:29.962
I like this idea.

00:20:29.962 --> 00:20:52.175
I mean I think that there's value for people to understand because today it is such a common treatment now and the technology is so amazing and so precise and there's new things on the market now where, in terms of the programming is incredible.

00:20:52.175 --> 00:20:55.730
I think a new one just got released from Medtronic.

00:20:55.730 --> 00:21:03.827
But I think and it doesn't matter which company you go with they're all so high tech and the care that you get from them.

00:21:03.827 --> 00:21:20.981
We can go into detail when we do the episode, but I think it's important for people to understand that DBS is just one treatment, it's one thing that they can do for Parkinson's and not everyone may respond or qualify for it.

00:21:20.981 --> 00:21:24.949
So you know, I mean, I think that's part of it too.

00:21:26.271 --> 00:21:27.653
Well, I think DBS.

00:21:27.653 --> 00:21:32.686
I mean I remember when I first had it I thought it was going to be.

00:21:32.686 --> 00:21:45.571
I mean I was told I knew it wasn't going to be a panacea, but I have to say I really trusted it a lot and I didn't realize, and it also changed during the course of it.

00:21:45.571 --> 00:21:49.152
That's why I ended up having the second one, which was in.

00:21:49.152 --> 00:22:00.335
It gets a bit technical, but the second one was in a target in the brain which was more conducive to dealing with dystonia.

00:22:00.335 --> 00:22:04.786
Okay, the first one wasn't okay that makes sense.

00:22:04.826 --> 00:22:11.336
The sub subthalamic nucleus, all that stuff, because that will scare off all our listeners.

00:22:11.336 --> 00:22:19.064
Look, if someone said sub-thalamic nucleus to you in a podcast, you'd run as well.

00:22:19.064 --> 00:22:37.746
Yeah, but it goes back to the original point about Parkinson's, which is that they just you know, my doctors have been some of the best in the world, but they just don't know.

00:22:37.746 --> 00:22:43.607
I mean, no one knows, and that is a very frustrating thing.

00:22:43.607 --> 00:23:03.461
There's no cure and, in terms of maintenance of the disease, we're always going back to carbidopa, levodopa and the amount of new formulations of that, whether it's into the gut or a different type of release mechanism in a capsule.

00:23:03.521 --> 00:23:21.806
I mean carbidopa lev Dope is freely available in bananas, right, right, there are certain foods that you can eat, right right, exactly, but you could never get enough from food.

00:23:21.806 --> 00:23:28.073
So I do want to say that, yeah, you couldn't eat enough bananas to make that happen.

00:23:28.073 --> 00:23:31.237
Yeah, yeah, exactly.

00:23:31.237 --> 00:24:03.942
You know, as I speak with you, and I and Simon, I've really gotten to know you a lot more in the last I would say this last year and I, you know, I feel there is a certain strength that both of you bring with your Parkinson's and I want to talk a little bit about that, because we're talking about how difficult Parkinson's is and what you know that it's a sucky disease and no one wants it, no one wants to be in the club.

00:24:04.702 --> 00:24:10.721
But even though you do things differently, you both bring a certain amount of strength.

00:24:10.721 --> 00:24:41.296
And where I see your strength, simon, is that, although you don't feel strong with this, you have been able to get yourself to a support group and you've been willing to share about your feelings and share the frustration and the difficulty that you are having, and there is so much value to that and I think that's partly why Travis and I wanted to even bring you on into this conversation today was.

00:24:41.296 --> 00:24:46.085
You know, you have been very open about the fact that it's a.

00:24:46.085 --> 00:25:06.132
It's been so difficult for you and a lot of people don't do that and I guess my question for you have you found that support groups have helped you with that in, in giving you strength to kind of fight on and get out there and put up your shield and get your sword ready and start attacking?

00:25:06.759 --> 00:25:18.864
Well, it's funny because I started very early on in the disease going to a support group and then I stopped because one of the doctors said why are you going to this support group when?

00:25:18.864 --> 00:25:32.808
Um, so I went to a support group at the very beginning of my uh, parkinson's and the doctor said why are you going?

00:25:32.808 --> 00:25:37.383
I mean, you're going to see things that you know will come down the pipe for you.

00:25:37.383 --> 00:25:40.988
And it was true.

00:25:40.988 --> 00:25:42.088
So I stopped going.

00:25:42.088 --> 00:26:00.571
And then, about nine years later, I started going again and mike weinman's group had been folded into this group and that was the one I went to sorry that doesn't you with the were with the YOPD group.

00:26:00.692 --> 00:26:01.954
Mike's YOPD group.

00:26:01.954 --> 00:26:03.266
Mike's YOPD group.

00:26:03.306 --> 00:26:11.285
Yeah, Even though I was sort of not quite I'm not, I was diagnosed 15 years after Travis.

00:26:11.285 --> 00:26:12.488
In terms of Right.

00:26:13.029 --> 00:26:14.092
But you're still considered.

00:26:14.092 --> 00:26:17.009
You were in your fifties and you were still considered YOPD.

00:26:17.009 --> 00:26:18.442
Yeah, I think so.

00:26:18.442 --> 00:26:20.669
Yeah, absolutely A hundred percent.

00:26:20.669 --> 00:26:27.388
And just so people know, if we have listeners that don't know what that means, it means young onset Parkinson's disease.

00:26:27.388 --> 00:26:43.446
So usually if you're under 55 or under 50, probably, 55 is probably the cutoff Although Sandy was 61, but they felt he was so young, thinking that they told us oh, you should go to the YOPD group.

00:26:43.446 --> 00:26:49.588
He did go to one of the other ones and he did not like it as much, so he also started with a YOPD group.

00:26:49.920 --> 00:26:55.111
Well, I think the one that I went to was a very good group.

00:26:55.571 --> 00:27:02.932
It was extremely good, but I did see things that and I was a relatively normal person.

00:27:02.932 --> 00:27:26.691
But the thing is it creeps up on you pretty quick and the symptoms come fast and furious after a while and it's been very frustrating because of the DBS, because you can't help thinking of it, despite the fact I said it wasn't a panacea, that it is a panacea.

00:27:26.691 --> 00:27:41.608
You can't help thinking they put this fancy gizmology into your brain, in our case twice, and you can't help thinking that that's going to do it, going to clear it for a while.

00:27:43.428 --> 00:27:54.820
Do it going to clear it for a while and when it doesn't you know you do get pretty down.

00:27:54.840 --> 00:28:11.792
Of course, I think it makes sense that you would get down and I think the expectation but I think part of it is maybe, you know, travis, you sort of have taken this attitude of having no expectations, like you try something.

00:28:11.792 --> 00:28:22.162
And I remember when you started on Raitari and you just said I'm going to go.

00:28:22.162 --> 00:28:22.867
I said, what are you doing for this?

00:28:22.867 --> 00:28:23.471
How are you going to stop it?

00:28:23.471 --> 00:28:24.480
And you went nope, I'm going back to the doctor.

00:28:24.480 --> 00:28:25.885
Nope, I'm going back.

00:28:25.885 --> 00:28:28.826
I'm going to figure this out, I'm going to work through this.

00:28:28.826 --> 00:28:36.308
And I remember how it was not an easy road for you and you still pushed through it.

00:28:36.308 --> 00:28:55.176
And I think there's so much to be said for that of your ability to be resilient, to just keep pushing and going through, and I think we're going to hear that when we talk to you about your early days of DBS, your first DBS surgery.

00:28:55.176 --> 00:29:27.851
The other thing I want to bring up here now is that Simon is sort of pushing himself now, because one thing we didn't say at the beginning of this podcast that this is our first us on the website at PCLA and hopefully we're not going to be censoring ourselves.

00:29:27.851 --> 00:29:30.991
We've already dropped a few F-bombs in this episode.

00:29:30.991 --> 00:29:33.113
So I think it's okay.

00:29:33.113 --> 00:29:58.073
You know I don't think anybody's going to really care, but you know it's exciting for me because we really get to have people know that we are part of a community and I think, with the depression and with the isolation and everything that happened during the pandemic, more people were so impacted by that isolation.

00:29:58.073 --> 00:30:05.883
It made it really really hard, and PCLA was able to start online support groups and get things rolling.

00:30:05.883 --> 00:30:15.647
So, just so you know, we're excited to be part of this organization and be able to bring this to you through PCLA.

00:30:16.288 --> 00:30:27.153
And, at the same time, simon, who's a writer and I did not know that when I first met him and then getting to know him, I discovered that he's a writer Simon is going to start.

00:30:27.554 --> 00:30:40.445
He has a column called Simon Says that is going to be part of the PCLA new website, which is going to launch in a couple of weeks, and we're really excited about this.

00:30:40.445 --> 00:31:11.041
So, simon, I know that you are struggling and fighting and pushing and a little disappointed with the fact that you're not out there jumping on trampolines, but to me, the fact that you've written some really important, wonderful articles that talk about PD and how people journey through it and how you've journeyed through it, and your perspective and others' perspectives, and I think there's so much value to this.

00:31:11.041 --> 00:31:37.333
I love that both of you are now part I mean, you've always been part of the PCLA family, but now you're really integrated into PCLA because you're going to be on the website in a couple different ways and that's exciting for me to see that it's part of our new launch that we're doing and the growth that the organization has made and a half nine years in 2016.

00:31:37.333 --> 00:31:46.846
So here we are, folks, we're right behind you.

00:31:46.846 --> 00:31:48.827
We all started this at the same time.

00:31:50.842 --> 00:32:13.526
I think one of the things I think is important to recognize and I do this through my writing is I don't want to be a sad sack here, but I think that a point of view that isn't the conventional inspirational point of view is important.

00:32:13.526 --> 00:32:25.843
I mean most people, I mean inspirational stuff is great for a lot of people, but for most, for some people, it's not.

00:32:25.843 --> 00:32:28.988
It's actually anti-inspirational.

00:32:28.988 --> 00:32:52.569
I know that sounds crazy, and it's only when you talk to people like travis, who are able to basically call you on your BS, that you I mean in a psychologically sound way to do that, that I think that's when it's useful for someone like me.

00:32:53.551 --> 00:32:54.913
Yeah absolutely.

00:32:55.560 --> 00:32:57.528
Let me just say something about Travis.

00:32:57.528 --> 00:33:01.050
Travis came up with this concept called cake or death.

00:33:01.050 --> 00:33:02.384
Cake or death.

00:33:02.384 --> 00:33:06.230
Marie Antoinette would have understood it quite innately.

00:33:06.230 --> 00:33:13.626
But basically it's a sort of version of the Jewish what are you going to do, kind of thing?

00:33:13.626 --> 00:33:19.088
You're going to do cake, you're going to make the best of it or are you going to die?

00:33:19.088 --> 00:33:27.028
And it's a version of get busy living or get busy dying, which is a quote from the Shawshank Redemption.

00:33:27.759 --> 00:33:28.789
I'm doing a lot of quotes here.

00:33:28.789 --> 00:33:30.326
Yes, wonderful quote.

00:33:32.840 --> 00:33:53.570
But I admire Travis tremendously and I will always say that Tremendously, and I will always say that Because he has the metal M-E-T-T-L-E to just drive right through this.

00:33:53.570 --> 00:33:55.858
He's like the blitzkrieg of pockets and nations.

00:33:55.878 --> 00:33:58.346
Yes, that's a great description.

00:33:58.346 --> 00:33:59.049
I love that.

00:33:59.049 --> 00:34:02.544
That's perfect.

00:34:02.544 --> 00:34:05.411
That's a great way to describe it.

00:34:05.411 --> 00:34:18.382
I think it's true, but you know, he has been willing at times to share some really tragic moments for him.

00:34:18.382 --> 00:34:45.934
He has shared that and the fact that he has shared and I feel the same thing with you, simon, when you have both shared these moments of tragedy for yourselves in some way that inspires others to say, okay, I can see that they are not having a party here.

00:34:45.934 --> 00:34:48.041
It's not always every day.

00:34:48.041 --> 00:35:34.469
Oh, I'm doing this, I'm doing that, I'm feeling great, I'm having a good day, I can see that, and that gives validation to someone who really is struggling, at the same time, knowing that you've come out on the other side, that you did get through it, that you are here, you're present, that you are writing something, you are making a statement, you're making your voice heard, and I think there's so much value and validity in giving people a voice to be able to express what they're going through, even the negative shit that happens and there's plenty of it, you know.

00:35:35.480 --> 00:35:36.501
I agree completely.

00:35:36.501 --> 00:35:54.677
I also think that hearing from people who are having a bad time can be very rejuvenating for people who are having a good time Right.

00:35:54.677 --> 00:35:58.005
They should know that it's not all as you say.

00:35:58.005 --> 00:36:02.054
You know it's not all sweetness and light.

00:36:03.099 --> 00:36:04.887
No, it's not.

00:36:04.887 --> 00:36:07.126
So on that note.

00:36:07.981 --> 00:36:09.146
Yes on that note.

00:36:09.581 --> 00:36:34.913
On that note, it's not all sweetness and light, but I think it's good to say that we are here, we're having some impact, we're helping to make people live their absolute best life, whatever that looks like and it's different for Travis, it's different for you, it's different for Mike, it's different for everyone but we're doing it, and we're doing it collectively.

00:36:34.913 --> 00:36:50.704
We're doing it knowing that we can reach out, that you can pick up the phone and call Travis, that he can pick up the phone and call you, that Mike can reach out to you, that we can reach out, that you can pick up the phone and call Travis, that he can pick up the phone and call you, that Mike can reach out to you, that we know that collectively, if we stand together, we can make changes.

00:36:50.704 --> 00:36:58.621
And that goes for everything from research to medications to emotional support.

00:36:58.621 --> 00:37:06.664
And I think it's important for us to acknowledge that we're doing this together and collectively.

00:37:07.385 --> 00:37:07.586
Yes.

00:37:07.586 --> 00:37:09.992
I think that's a really important point, by the way.

00:37:11.682 --> 00:37:18.505
Yeah, and I love that we have been able to bring this together today, travis, and I'm so glad that we have you here, simon.

00:37:18.505 --> 00:37:25.630
It's been really a very wonderful conversation and hopefully we can do it again another time.

00:37:25.630 --> 00:37:26.824
It's been really great.

00:37:28.081 --> 00:37:50.068
Yes, simon, thank you for sharing your story, or part of it, and I wholeheartedly agree with everything that you said.

00:37:50.068 --> 00:38:17.818
I may not show it, but I have had challenges and days where I'm less lit-screegy.

00:38:17.818 --> 00:38:35.577
I'm sure you have so it is nice to hear the other side of it.

00:38:35.577 --> 00:38:38.065
This is a wrap, bing.