I'm Not Dead Yet!
A close look at an extraordinary life with Parkinson's Disease. Quirky and irreverent hosts Judy & Travis take a look at this most tragic of events: life with an incurable disease and why it’s important to declare that I'm Not Dead Yet!
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I'm Not Dead Yet!
EP - 129 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
Welcome to I'm Not Dead Yet, with Judy and Travis, a podcast about living an extraordinary life with extraordinary circumstances.
Speaker 2:Welcome to the I'm Not Dead Yet podcast. I'm your co-host, Travis Robinson. I was diagnosed with Parkinson's disease at age 35 in 2014.
Speaker 3:And I'm your other co-host, Judy Yarris. My husband, Sandy, had Parkinson's disease for 18 years. I was his care partner since disease.
Speaker 2:for 18 years I was his care partner. Today's episode we'll be talking with Simon Garlick.
Speaker 1:Hi Simon, hi Simon, hi Dad.
Speaker 3:Just to give our listeners a little background. Simon Hi there, Just to give our listeners a little background. Simon was born and bred in the UK, so I thought that's kind of cool. You'll hear this wonderful accent and Simon was a screenwriter and now he is a copywriter. 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. But welcome. I just want to welcome you to the podcast today.
Speaker 1:Simon, thank you very much. It's a great honor to be here.
Speaker 3:We're excited. Can you share with us a little bit about your journey with Parkinson's? When you got it, what was your life like? How it has? Just give us a little background.
Speaker 1: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 I am. I got it quite quickly. A lot of people kind of spend years getting diagnosed and I just had this feeling that something was up. 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. Initially I was fine, because everyone's initially fine when they have Parkinson's Well, not everyone. But people who are diagnosed quite quickly, suppose, have more of a honeymoon than people who aren't, and I. 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. It's not spasms, it's involuntary muscle contractions, cramping.
Speaker 3:Cramping and contractions.
Speaker 1:Yeah, and they became very, very bad quite quickly and I had DBS and then I had it again. So I think Travis has got two DBSs, so him and I are catching up. One will win when we have our third.
Speaker 3:I think just for clarity, because we have some people that may not know what DBS is and that is deep brain stimulation.
Speaker 1:Deep brain stimulation. 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. But with dystonia it's a lot more difficult to find the target and that has been the case with me. It's been like finding a well, a pin in a haystack. To be honest, I have never really conquered it.
Speaker 3:So you're still struggling with the dystonia after 10 years.
Speaker 1:Yeah, and it's getting worse, naturally.
Speaker 1:Of course I've now. I worked for a while and I stopped working a year ago. That wasn't me stopping working, that was them stopping me working. But I'm finding it a little challenging to be honest with you. 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. Actually she was an associate member.
Speaker 3:Associate member yes.
Speaker 1:Good way to put it and you just don't want to be this. 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. You wouldn't want to. You join that club club and you definitely don't want to be a member.
Speaker 3:Right, that's a good way to put it.
Speaker 1: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. I haven't climbed kilimanjaro just yet, um, and I think I'm I'm not winning the battle, I think. 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. And I'll fully admit that there's another side to that, which is those who find it difficult.
Speaker 3:To do the fighting absolutely.
Speaker 1:To do the fighting. I suffer from apathy fatigue and I look at Travis and I marvel at him because he has managed to. 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.
Speaker 3:Neither of us have known him before his PD, so we don't know.
Speaker 2:But we have to assume I agree with you.
Speaker 1: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. 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.
Speaker 2:Wow.
Speaker 1:I'm like a person from Pompeii after the Vesuvius eruption.
Speaker 3:Right, so it just you freeze completely, which I think. 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. 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.
Speaker 1:Well, you realize that even though the DBS, you think it's not working, but it really really is. 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. I like to vary that and call it idiopathic. It's like no one knows anything. I mean, even the movement disorder specialists don't know that much. They just know what they know better than we know and their guesses are far more educated than ours. Yes, but they're still kind of guessing.
Speaker 3:Yes, they don't know everything about Parkinson's. 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. If one person has Parkinson's, one person has Parkinson's.
Speaker 1:Yeah, I mean everyone is different in Parkinson's Right With the, because there are two types of symptoms. I mean for those who don't know. I mean, am I out of place by saying that?
Speaker 3:No, I think, just say it.
Speaker 1: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. 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.
Speaker 3:Yes, that's very true for many people. Some people don't have tremors or dystonia.
Speaker 1:Yeah, some people don't have tremors or dystonia. Some people have other movement disorders, 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 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. It's more of a collection of diseases than it is one disease, Mm-hmm. 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. I mean I realize I'm speaking to you, Judy, and your husband- Right, right, no, absolutely.
Speaker 3: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. That was the question. But they knew what was causing the problem. 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. 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.
Speaker 1:Yeah, I mean, it's a terrible disease, but also it's wrapped by not knowing Right. You know there are things that you can do to improve your situation, but even they are not proven.
Speaker 3:Right, it's all trial and error and I think it's very important for people to understand this. So we have two people here on this podcast Travis, whose experience, although he has definitely and I have seen Travis. I've spent a lot of time with him and I have seen him. I would say, travis, I've seen you in pretty bad shape, would you say. 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. It is, it is a terrible disease. There's no question about it.
Speaker 3: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. He's saying fuck you to everyone and this is what he does. He just goes on and does what he does. 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. Am I right? Is that okay to say, safe to say?
Speaker 1:Okay, safe to say? Yeah, I mean, I think there are a lot of responses to Parkinson's, but there is the. No one wants to hear a sob story, but there are a lot of people out there who are hiding sob stories.
Speaker 3:Yes, of course, and are afraid to share them. 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. Maybe hear someone else's sob story and go, oh, but now how are they approaching it? What are they doing to help themselves? And it may or may not work for you, right, and it may or may not work for you, right?
Speaker 1: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. 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. 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.
Speaker 3:Yes, I agree with you, simon. I think it is very debilitating and a lot of people that fortunately do not have it don't quite understand that. But yeah, have you tried? 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?
Speaker 1:done bot Botox twice hasn't helped Didn't help.
Speaker 3:Okay, that's what I wondered. And here is where, just to give an example, sandy had terrible dystonia in his right arm and right shoulder and it was terrible. They did Botox on him and it was like a dream. It just totally worked and he didn't need it again for literally it felt like it was years. It was like two years or something before he had to go back again. 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. Three months regularly for the Botox. 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. Some people get quick relief, some get. It takes a while, it takes many treatments to make it happen. There's no quick fix and they don't have a specific. They have specific ways of treating it, but it may not be right for you necessarily. That's the point I kind of want to make here.
Speaker 1:Yeah, I mean I am the poster child, for I mean this has nothing to do with the doctors, they're not. These are great doctors.
Speaker 3:These are great doctors. Yes, I mean, I am the poster child for I mean this is nothing to do with the doctors.
Speaker 1:They're not. These are great doctors. These are great doctors. Yes, we are talking about them. This is to do with just coming across a patient who is, you know, pain in the ass. 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.
Speaker 3: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. You know, and I think that's a great way of describing it, oh good, we're getting a good middle finger right now. Okay, perfect, good quality. Thank you, simon. We have to make sure our listeners know. But, travis, when you've had your DBS, have you been pretty satisfied with that?
Speaker 2:The second time? Yes, Okay. But, it was something that my first go-round, with it a whole lap of salt.
Speaker 3:Okay.
Speaker 2:When it does not quite work. Where do you go from there?
Speaker 3:Yeah, I think you're right. We'll have to dedicate an episode to this, Maybe just a whole DBS episode, I think would be great. I like this idea. 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. I think a new one just got released from Medtronic. 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. 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. So you know, I mean, I think that's part of it too.
Speaker 1:Well, I think DBS. I mean I remember when I first had it I thought it was going to be. 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. That's why I ended up having the second one, which was in. It gets a bit technical, but the second one was in a target in the brain which was more conducive to dealing with dystonia. Okay, the first one wasn't okay that makes sense.
Speaker 1:The sub subthalamic nucleus, all that stuff, because that will scare off all our listeners. Look, if someone said sub-thalamic nucleus to you in a podcast, you'd run as well. 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. I mean, no one knows, and that is a very frustrating thing. 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.
Speaker 3: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. So I do want to say that, yeah, you couldn't eat enough bananas 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 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.
Speaker 3:But even though you do things differently, you both bring a certain amount of strength. 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. You know, you have been very open about the fact that it's a. 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?
Speaker 1: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? 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? I mean, you're going to see things that you know will come down the pipe for you. And it was true. So I stopped going. 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.
Speaker 3:Mike's YOPD group. Mike's YOPD group.
Speaker 1:Yeah, Even though I was sort of not quite I'm not, I was diagnosed 15 years after Travis. In terms of Right.
Speaker 3:But you're still considered. You were in your fifties and you were still considered YOPD. Yeah, I think so. Yeah, absolutely A hundred percent. And just so people know, if we have listeners that don't know what that means, it means young onset Parkinson's disease. 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. 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.
Speaker 1:Well, I think the one that I went to was a very good group.
Speaker 1:It was extremely good, but I did see things that and I was a relatively normal person. 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. 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.
Speaker 1:Do it going to clear it for a while and when it doesn't you know you do get pretty down.
Speaker 3: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. And I remember when you started on Raitari and you just said I'm going to go. I said, what are you doing for this? How are you going to stop it? And you went nope, I'm going back 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 not an easy road for you and you still pushed through it. 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. 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. We've already dropped a few F-bombs in this episode. So I think it's okay. 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. It made it really really hard, and PCLA was able to start online support groups and get things rolling. So, just so you know, we're excited to be part of this organization and be able to bring this to you through PCLA.
Speaker 3: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.
Speaker 3: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. 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. 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. So here we are, folks, we're right behind you. We all started this at the same time.
Speaker 1: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. I mean most people, I mean inspirational stuff is great for a lot of people, but for most, for some people, it's not. It's actually anti-inspirational. 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.
Speaker 3:Yeah absolutely.
Speaker 1:Let me just say something about Travis. Travis came up with this concept called cake or death. Cake or death. Marie Antoinette would have understood it quite innately. But basically it's a sort of version of the Jewish what are you going to do, kind of thing? You're going to do cake, you're going to make the best of it or are you going to die? And it's a version of get busy living or get busy dying, which is a quote from the Shawshank Redemption.
Speaker 3:I'm doing a lot of quotes here. Yes, wonderful quote.
Speaker 1: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. He's like the blitzkrieg of pockets and nations.
Speaker 3:Yes, that's a great description. I love that. That's perfect. That's a great way to describe it. I think it's true, but you know, he has been willing at times to share some really tragic moments for him. 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. It's not always every day. 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.
Speaker 1:I agree completely. 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. They should know that it's not all as you say. You know it's not all sweetness and light.
Speaker 3:No, it's not. So on that note.
Speaker 1:Yes on that note.
Speaker 3: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. 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. And that goes for everything from research to medications to emotional support. And I think it's important for us to acknowledge that we're doing this together and collectively.
Speaker 1:Yes. I think that's a really important point, by the way.
Speaker 3: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. It's been really a very wonderful conversation and hopefully we can do it again another time. It's been really great.
Speaker 2:Yes, simon, thank you for sharing your story, or part of it, and I wholeheartedly agree with everything that you said. I may not show it, but I have had challenges and days where I'm less lit-screegy. I'm sure you have so it is nice to hear the other side of it. This is a wrap, bing.
