Life threw Andrew Kinder a curveball in the form of a young onset Parkinson's diagnosis. Listen as Andrew courageously shares his personal journey from the first symptoms, through the diagnosis, and his current treatments. He candidly reveals how he grappled with the mental and emotional impact of his diagnosis, and the delicate balance of maintaining workplace transparency while keeping his condition private.
Lisa and Andrew discuss the realities of living with Parkinson's in a professional context, from potential unconscious bias, to the challenges of disclosure at work.
Andrew shares his experience with:
• The time it took to make his diagnosis
• Why he kept it a secret for so long
• How he is learning that transparency, once you are ready is the best course of action
• His experience with sharing his diagnosis at work, and
• How people, including work colleagues, like to label things when they notice something different. Once they’ve categorised the issue as not being a threat, they’ll happily move on.
Would you like to get in touch with Andrew? Connect on LinkedIn or email to andrew.kinder@ymail.com
The Culture Ministry exists to create inclusive, accessible environments so that people and businesses can thrive.
Combining a big picture, balanced approach with real-world experience, we help organisations understand their diversity and inclusion shortcomings – and identify practical, measurable actions to move them forward.
Go to https://www.thecultureministry.com/ to learn more
If you enjoyed this episode and maybe learnt something please share with your friends on social media, give a 5 star rating on Apple podcasts and leave a comment. This makes it easier for others to find A Dog Called Diversity.
A Dog Called Diversity is proud to be featured on Feedspot's 20 Best Diversity And Inclusion Podcasts
Thanks for listening. Follow us on LinkedIn, Instagram and Facebook.
Life threw Andrew Kinder a curveball in the form of a young onset Parkinson's diagnosis. Listen as Andrew courageously shares his personal journey from the first symptoms, through the diagnosis, and his current treatments. He candidly reveals how he grappled with the mental and emotional impact of his diagnosis, and the delicate balance of maintaining workplace transparency while keeping his condition private.
Lisa and Andrew discuss the realities of living with Parkinson's in a professional context, from potential unconscious bias, to the challenges of disclosure at work.
Andrew shares his experience with:
• The time it took to make his diagnosis
• Why he kept it a secret for so long
• How he is learning that transparency, once you are ready is the best course of action
• His experience with sharing his diagnosis at work, and
• How people, including work colleagues, like to label things when they notice something different. Once they’ve categorised the issue as not being a threat, they’ll happily move on.
Would you like to get in touch with Andrew? Connect on LinkedIn or email to andrew.kinder@ymail.com
The Culture Ministry exists to create inclusive, accessible environments so that people and businesses can thrive.
Combining a big picture, balanced approach with real-world experience, we help organisations understand their diversity and inclusion shortcomings – and identify practical, measurable actions to move them forward.
Go to https://www.thecultureministry.com/ to learn more
If you enjoyed this episode and maybe learnt something please share with your friends on social media, give a 5 star rating on Apple podcasts and leave a comment. This makes it easier for others to find A Dog Called Diversity.
A Dog Called Diversity is proud to be featured on Feedspot's 20 Best Diversity And Inclusion Podcasts
Thanks for listening. Follow us on LinkedIn, Instagram and Facebook.
Welcome to a dog call diversity, and this week I have a super special guest. Super special guest and that is because not only is he a friend that I've known for over eight years, he is lovely. Wife Meg edits this podcast, so when she goes through and edits, will see what she leaves in and what she takes out. But welcome to the podcast, andrew kinder.
Speaker 2:Thank you, lisa, thanks for having me.
Speaker 1:Yeah, it's so lovely to talk to you and unexpected, but we will talk about that later. I'm wondering if you'd like to talk a bit about you and your career and bit about where you're located, just so people can think about that.
Speaker 2:Sure, sure, so well. Once again, thanks for having me. I was. I was born in the UK but my family moved to Sydney in Australia when I was quite young, when I was about four years old, grew up there, university, all that I didn't really. You know, I studied psychology at university but didn't really have a big plan about what I do thereafter. I was, you know, thinking clinical practice maybe, but for whatever reason that just didn't work out and I finished up university and hit the workforce during a recession in Australia and it was quite hard to find something was probably the last big recession that Australia really had in those early 90s and I didn't have anything going and I was on unemployment benefits and it was a bit miserable, I guess. But I ultimately ended up in it like a small consulting firm.
Speaker 2:About half my time was spent working on assessment centers, so I was putting people through psychological tests and sort of interpreting and writing up reports, that kind of thing, and the other half was on compensation and I, you know, consulting was a great foundation and things were going well. But I also realized that if I kept moving up the tree, so to speak, I'd hit principal, and they seem to, at least you know, in my view they seem to be doing the same kind of work but less of it. They were spending more time on sales than actually consulting and the sales side of things just didn't really. You know, I wasn't feeling jazzed about doing that. So I looked to make the switch to corporate life and I was lucky enough to land a great role with it like a large US multinational covering Australia and New Zealand for compensation and benefits. And you know, of the 10 things on their list that I should be able to do, there was at least three or four of them that I had no idea how to do. So I was sort of comfortably outside my, you know, comfort zone and that made it in my mind a really great opportunity because I learned so much. That was in Sydney and I'd stayed with them for four years while I was in Sydney.
Speaker 2:And then there was an opportunity to come up to Singapore and essentially take over the region, doing the same kind of stuff around pension plans and incentives and all that sort of good stuff, but doing it for the region as opposed to, you know, just A and Z Did that for another four years, which you know was great, but after that four year mark I was starting to get the itch of doing something new and and then a role at a bank came up here and it was quite unusual because the bank that I joined was listed in London but pretty much the head office was here in Singapore because it was very much an Asia focused bank.
Speaker 2:So I was able to pick up a job as the global head of reward for wholesale banking at this institution and you know, I essentially ended up doing a global role in the headquarters but still managed to be able to live here in Singapore, which at the time was great because you know I mean young family, you know disrupting kids in school and all that sort of stuff isn't fun, and yet I still managed to get that experience. Then, about three years into that wholesale banking job, an opportunity to switch over to the dark side of being like a generalist came up, and so I ended up taking over a HRBP role, you know, in a global capacity, once again for corporate banking, and I did that for about three years not three and a half years and then switched over to being a retail banking generalist and kept on moving around a little bit. But basically those 10 years, or the last 10 years with that bank, were all in generalist roles. I also double headed as the global head of talent, learning and culture at one point and had to present to the board on our D and I strategy, which, as you know, lisa, that would have really put me way out of my comfort zone.
Speaker 1:I was thinking that.
Speaker 2:But it was great. You know, I learned lots and it's been an interest to me ever since, which is, you know, one of, I guess, the legacies of working at that place. Anyway, it was great experience. After 13 years at the bank, it was time to move on. I the opportunity to take a package came up and, you know, after talking to a few people I realized it was, it was the right thing for me to do. I then looked around for the next big thing. Took me a while to find it, but worked at a US asset manager, you know, once again as a generalist. So a few different things there, but generally speaking, corporate consulting company, ben, specialty type roles versus generalists, mainly in Singapore, I guess now. But but yeah, bit of experience there. Hopefully. Hopefully that's not too windier or long explanation, but that's, that's the last 25 years.
Speaker 1:Wow, it was really interesting when you were talking and you were thinking of going into clinical psych practice. I guess I can. When you were talking I could. I could see you doing that kind of work and and then also doing the assessment center work. I did some of that at the start of my career as well. It must be. I don't know, do companies run assessment centers anymore?
Speaker 2:I don't hear about them so much but they do like executive development stuff and they might run people through a personality test to see what unconscious biases they might have, that kind of thing. But when I was doing those things it was yeah, it was more, it was more. What's the phrase? I don't know, it was just in vogue, I guess at the time.
Speaker 1:Yeah, I think so too, but we're not here to talk about your HR career, even though it's very interesting. You know, I what I want to get you to talk about is something I guess you shared with me a couple of months ago and I was sitting on my lounge and in comes a message or messenger from you telling me that you had Parkinson's and could you come on the podcast, and so I wanted to talk a little bit about that. So tell me about Parkinson's, and maybe start with like how were you, you know, how did you work out that something wasn't right?
Speaker 2:Yeah, I mean for me, it was a cycling friend who pointed out to me that I had a tremor in my in my left index finger. So I was just sort of standing around we're waiting for the ride to begin, and she noticed that my finger was sort of, you know, twitching, I guess, and I never had thought about that or seen it or thought, you know, and then so and she said, oh, you might want to get that checked out. And so I went to a neurologist and he said Listen, you know it could be Parkinson's. And you know, my heart sort of sank because I didn't really know what that meant. I just knew it wasn't good.
Speaker 2:But he said, or it could be like a benign, what he called an essential tremor, which is, you know, apparently about eight times more common than Parkinson's, and it doesn't really lead to that much, or typically doesn't. It's annoying, but it should be okay. So then I spent the next three years sort of worrying about you know, is this Parkinson's? Is this a benign tremor or what is it? And then, after about three years so in late 2018, he confirmed that you know, the diagnosis was Parkinson's, because I was under 50, it's it's, you know, it's classified as young onset Parkinson's.
Speaker 1:Wow, how I mean like I'd noticed that you had a bit of a shake and a tremor, but I've worked with another man who had that as well and so I never worried about it, I never thought about it. So how do you go from having an index finger that's shaking or tremoring to a diagnosis Like what are the kind of things neurologists looking for?
Speaker 2:Well, I think there's, at least at the moment there's no really good tests. You can't just take a blood test that says, yes, you've got it. I mean they're working on that and they're making good progress, but it doesn't exist right now. And you know, on one visit to the neurologist I said, is there a good way of working this out? And he said, listen, we could put you under this brain scan like MRI and then inject you with this radioactive stuff, and then you know that should basically tell us. But in Singapore at least, we don't bother really doing that anymore because it costs 20 grand or something to do the test. And frankly, whether you know whether you have a positive test or not, the outcome is the same. I mean, we don't have a cure for this yet. All we can really do is try.
Speaker 2:And well, there are some drugs that help, at least in theory, help slow the progression of the disease, or other drugs that are there to sort of manage the symptoms. But whether you have this official diagnosis or more of just sort of clinical observation diagnosis, it doesn't really matter which way. I mean they both end up in the same place, but the kind of things the doctor was looking for, like you know, if I go in I've actually got an appointment coming up. He'll make me like I twitch my fingers to see like little pincer movements with my fingers to see whether the left side is catching up with the right, or, you know, outstretch your hands and touch your nose, you know all sorts of sort of. At the time they sort of feel weird, but those kinds of tests to see what's see, what's going on. But generally speaking, you know they might look for the tremors, so that you know the twitchiness.
Speaker 2:An awkward looking walk. So your gait, you tend not to swing your arm. At least I don't tend to swim my arm on my left side when I walk, so that kind of looks a bit weird. Just generally being stiff, you tend to start looking down more because you're you're, you're thinking more consciously about what way you're going to walk and not wanting to trip, and so you tend to get more of a hunch. Posture Balance can be an issue, but you know it's different for everyone. So some people get the tremor, some people don't. So you just don't know. It's not. You know. One thing that it's good to know is that you don't die from Parkinson's. You die with it. So it's not like some doctors just told you that you've got listen, sorry, but you've got stage four cancer. You've got four months to live. It's not a diagnosis, trust me. It's not a diagnosis that you want to have. No, it's not the end of the world either.
Speaker 1:Yeah, I've learned from the notes that we put together beforehand that it's driven by a lack of dopamine in the brain. So does, I guess taking a form of dopamine is you know? Is that one of the treatments?
Speaker 2:Yeah, it is. The trick is to work out what kind of way you can do that that doesn't have too many side effects. Because it's a little bit like there's a part of your brain that isn't making this dopamine. But taking a pill that just floods your brain generally with dopamine is a little, can be a little bit sledgehammer to a nut kind of thing. So, and early on, you know, I tried one medication and it just made me feel really nauseous. It sort of made me quite sleepy. It just wasn't good and for the benefit that I had from the tremor or other physical stuff it just wasn't worth it. So you know I didn't go there.
Speaker 2:I do take a couple of different pills for it, but they're pretty minor. There's a bunch of other meds that you can take that are a bit more serious, but luckily I'm still fairly early in the progression not to need those more sort of serious kind of drugs yet. And the other good thing is that you know you might try a particular medicine at some point and it doesn't really work for you, but that's because you're not quite ready for it yet and later on, when you are ready for it, it helps you without you know crippling side effects at the same time.
Speaker 1:Okay, so I guess Parkinson's is somewhat well known as a disease because Michael J Fox contracted it pretty early in his life. So how do you have a sense of how common Parkinson's is in the population?
Speaker 2:Yeah, I mean it's probably about one to two percent of people. Typically it's white men and you're usually starting well into retirement, so you're usually, you know, a fair bit older than me. But there is this rare aversion on young onset which you get if you diagnose before you're 50. And they're pretty much the same thing, but the progression is often slower with young onset. So Michael J Fox famously diagnosed I think it was 29. So you know how he dealt with. That is pretty amazing, but 29. He's retired now, but he just made a movie still at age 62. So he's had it for like 33 years and he's still going. To be honest, he's obviously not in great shape. But if he'd had that when he was seven, if he was diagnosed when he was 70, you know, the chance of still being around 33 years later will be pretty, pretty marginal. So that's kind of an example of how that you may end up in the same place, but the progression is usually slower with young onset.
Speaker 2:Interestingly though, I think one of the things I learned when I was reading about this stuff is that Parkinson's is, you know, apparently it's the fastest growing neurologic condition in the world. So no, no, no, no, no, I really know, it's for sure, why, but at least there's enough people who have this or who are getting it for it to get attention and funding. So people like you know Michael J Fox did a huge amount and still does do a huge amount of fundraising for research, which is great and, at least from my sort of selfish perspective, it means that it's more likely that they will find treatments or hopefully even a cure, you know, within a reasonable sort of time span. If you had like a one in a million disease, that's not great, because you know big farmer etc. Big companies, they're not going to see this financially viable to research.
Speaker 1:So but yeah, oh, it's looking up because there's more money for research, but not so great that so many more people are getting it or being diagnosed.
Speaker 2:No and no one for sure knows why, because no one's like some people think it's. It's most likely a mix of genetic and environmental factors. You know it's been linked to pesticide use. It's been linked to, you know, gut health, so it's your microbiome and what's happening there and it's been linked to connective tissue disorders. So maybe there's gaps in your system and you know stuff from your gut then makes it weigh into your brain. Anyways, there's all different theories. No one knows it for sure why. But yeah, like I said, at least it's getting, at least it's getting attention.
Speaker 1:Yeah, One of the things. So I went and watched the movie still and it's it's worth watching, not just to understand about Parkinson's disease, but it was. It's a very cleverly told movie, the way that it's put together, but it is sobering because Michael J Fox is not in great shape. This things that he does, I guess, is part of keeping him mobile, keeping him moving, so he sees trainers, he, you know, he does physical things. What are some of the things that you, I guess, decided to do to, I guess, be as healthy as you can?
Speaker 2:I think I mean it's different for different people. I, you know, I'm I'm on a focus sorry, not a focus a Facebook group runners with Parkinson's, so these guys who get out and do marathons and stuff, and certainly aerobic exercise is, you know, is is one of those things that probably helps people the most. You know when, when you ignore the sort of the medical side of things and just look at lifestyle, then exercise is really important. Particularly aerobic Diet is important as well, and I'm trying to do better on that sort of score. As you know, I like my food, so you know that's, that's hard, but getting out for a brisk walk or trying to do a jog or a run is good.
Speaker 2:The one thing for me is that I can get a cramp in my left foot so, where the toes kind of try and curl under, and you know. So that means that if I'm jogging or walking every day and again I'll have to sort of stop and stretch that out, and I've not found a good way of dealing that other than simply stopping and stretching. You can, apparently you can get Botox and that can help. I wouldn't have necessarily thought of having Botox in my foot, but, but then the danger of that is that it actually weakens the muscle over time as well. So you start to atrophy, so it has to be. You know I'm not there yet to warrant doing that, but but yeah, so I like to get out and do that. I mean, I used to be quite into cycling. I mean, that's how we know each other.
Speaker 1:Yeah.
Speaker 2:But, but unfortunately it sort of put me off cycling because, as you know, we used to like ride, or when I was riding, you know, you'd have maybe 12 people out on the road. You'd be a foot, maybe two feet behind the person in front of you to try and save on wind resistance. And these days, you know, while I used to love doing that, I'm just not confident anymore. You know, it's a small margin of error for cyclists anyway.
Speaker 1:Yep.
Speaker 2:I can't risk having a tremor or getting a cramp suddenly, you know, out there on the road.
Speaker 1:So it's going down the freeway.
Speaker 2:Exactly. But but other than that you know the, I think I think exercise is the one key thing and trying to get good sleep. You know, getting to sleep can be an issue for people with Parkinson's, or if you wake up, then trying to get back to sleep can be an issue. So doing all of the good things that you know norm are a normal for people who have sleep issues. That that can be another one as well. But yeah, otherwise I think just risk walks. A bit of exercise, really, yeah.
Speaker 1:Getting out the sun.
Speaker 2:Getting out the sun.
Speaker 1:I'm not sure which question to ask you next, but maybe I'll start with you. Know, when you approached me, you, you wanted to talk about this disease because mental health month and day is coming up and this episode will will actually be dropping sort of right in the middle of all of that. Why was it important to talk about the mental health aspect for you?
Speaker 2:I think for me it's a lot of. It is just about realizing how people deal with these things, realizing how I've sort of gone through the change curve with this as well and, you know, trying to make even the sort of tiniest little contribution to that world. Now it doesn't quite make sense. I'm kind of rambling, I guess, but I think, I think, you know, I went through a stage of basically denial. You know, if you can't see this, it doesn't exist, you keep it to yourself because you don't want to be treated differently. You know, and particularly at work, you worry about being marginalized. You might get passed over for promotion or just generally taken for granted, you know, or potentially even being fired, and I think that's one element, that's sort of a work element. You're also, you know, probably wanting to keep it quiet because you've been embarrassed. You don't want to be pitied, you know. But I think a big part of it for me, in terms of being in denial or trying to hide it, was that somehow talking about it, giving it oxygen, somehow gave it life. And I didn't want to do that. I didn't want, I didn't want to have it. I still don't want to have it and I don't like talking. I generally don't like talking about it. I'm, you know I wanted to do this podcast but coming on this morning, you know I'm quite, you know I'm quite nervous about it, about talking about it. I don't even typically like watching TV programs that have a character with my instance because once again it's sort of it's a reminder and obviously it's not secret at night. But that's just how my irrational thing can be. I don't want to give it oxygen. But you know, I've come around to the view after quite a while. Like I was, I first had those symptoms on as 44, diagnosed about 48, sorry, 47. I'm 52 now. I mean, this is not new for me, but it's taken a while to come around to the view that you know talking about it actually helps neutralize the issue. So you know, because you can imagine it, if we've spoken about it and then you see my tremor or see something else, you just go oh okay, that's his Parkinson's. You know no big deal, let's move on. But if we're not spoken about it or you had no idea, you probably make at least some part of your brain is saying like, is this guy okay, you know, is this like a drinking problem that he's got, or is he particularly nervous? So like what's going on? So you know, and I think this, this for me, is part of that sort of disclosure I could say disclosure, transparency, awareness, whatever it's part of that.
Speaker 2:And the mental health side of things, I think, is that you know, I am being in that state where you're worried about what people think. It's just really draining, you know, because I could be in a meeting. I noticed someone sees my tremor. So then I, you know, then I go to sit on my hand, so the tremor stops or at least isn't so noticeable. But then I'm starting there thinking, you know, what are they thinking? You know, like you know, did they really notice? Or did I, you know, did I miss that signal or what's going on? And it just becomes a really unhelpful distraction Because then each meeting or each encounter, you're putting at least a bit of energy into dealing with how to hide it, as opposed to just being yourself and getting on with things.
Speaker 2:So it may not seem like that much, but in all honesty I think the emotional drain is material, whether you're worried about what people think, whether you think it's going to hurt your career, they're going to pity you, whatever it is.
Speaker 2:But I'm realizing more and more that you know, actually transparency is the way to get around that and most people just want to be able to put a label to something. Because, frankly, I tell people you know, one on one or face to face, and it's almost like you can cue sad face. So as soon as you say Parkinson's, the oh, that's no good, and the sad face comes on, and then they might have one or two questions and then suddenly we just move on, because I think people instinctively have this desire to, you know, be able to label something so they know whether it's a threat or not. You know, I think if you go back to your lizard brain, instinctive days, that's where it kind of comes from. And once they do have that label and they realize it's no threat, they realize that, oh, okay, well, physically he's not in great shape perhaps, but you know, that's not necessarily an HR, it's not going to affect his job. So let's all just move on.
Speaker 1:People are fine In many respects.
Speaker 2:They just don't care. But that's actually a good thing, if you know what I mean. I mean yeah. So anyway, sorry if that's a bit convoluted.
Speaker 1:No, no, I think it's. I think that was a great explanation and I think everything you've said is true. People just want to. You know, our brains want to categorize people and put them in a box so that we can make sense of the world and but ultimately it doesn't matter. You're still Andrew, you're still a friend, you still have terrible jokes and like wine. So what do you do with that? Right, yeah, yeah, are you? It's almost like if you are part of the LGBTIQ plus community, it's almost coming out of the closet. You know being out into the world, being open about what's happening for you, are you? I mean, you are doing this podcast, so you are going to be fully out, but up until now, is it only a small group of people that you've told, or are you telling everyone now?
Speaker 2:It's still a pretty small group that I've been telling face to face. It's one of those things, like you don't necessarily just want to suddenly blur it out, you know, I mean, I just, I mean, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I, I just. You know, one of the reasons for the podcast is that it's a way of telling people and hopefully helping them understand what I'm going through without those. You know, 100 or 1000 different one-on-one conversations that are just really a bit horrible to go through. It's so much easier if people you know I meet someone and they already know, they already know that I got this thing. They don't really care, you know, we can just get on with things. It's so much easier.
Speaker 2:Otherwise, I have told a bunch of people, but I usually wait until there's a reason to do it. So the other day I was having a drink with a neighbor up at the local place and and he said, oh, should we, you know, get a cab back or walk back? And I said, listen, I'm happy to walk, but you know I may need to stop every day and again, because you know I've got Parkinson's, blah, blah, blah, blah, blah. And you know Q sad face. Sorry to hear that, but no worries, you know, let's just head back home and and it was once again, it was no big deal. So I guess I get a little bit braver each time I have one of those interactions where I'm told someone, and it's actually been fine, it makes it makes it easier to try the next one and the next one.
Speaker 2:So I think there is potentially an analogy with the sort of the coming outsider things from an LGBT, et cetera, perspective. But I don't really, you know, use that term, you know, coming out, because I think it is different, you know, I think it's one thing to to, to have a disease, et cetera, versus having something that is deeply personal to you and which clearly isn't a disease. You know, I wouldn't want to confuse things on those lines or detract from the experience that those people have, because I think in many cases it's probably harder for them than for someone who, who is, who has contracted this At least I was, you know, at least I was 44 when I started having symptoms. I think, trying to go through something like coming out when you're, you know, a teenager, or I just think that would be really difficult. So there are some parallels there perhaps, but I think it's different.
Speaker 1:Yeah, I wanted to talk a little bit about work because you know, I said earlier that I had someone in my workplace who, I believe, had a benign tremor. I'd noticed it during the recruitment process. It didn't matter to me, it was irrelevant to the job. But once that person started work, other people noticed, other people came to me Should we get that person tested? There was a whole. You know all these things and and that's just one of the things you need to deal with in the workplace, I guess. So how has it affected you at work? What are the things you've noticed?
Speaker 2:In many respects. I don't think it has affected work that much. I think it goes to that energy perspective in terms of how much energy you have to put into hiding something. So I think that's a factor. I don't think people have consciously discriminated or done anything against me as a result of having this, but I do think there is an angle to that. If they don't have a label for something and they don't know what to do with it, that can unconsciously hurt you. I don't necessarily think that it has particularly hurt me badly, but I'm, over time, coming to the realization that it is a good thing to be more transparent, explain things, be a bit more proactive there. That because, like I said before, as soon as people have that label to put on something, they're fine.
Speaker 2:And I think Parkinson's is a bit weird because most people get it when they're in their 70s or something, so they're well into retirement. I mean, Parkinson's is not something that you typically see in the workplace at all. So if they see symptoms, they won't necessarily jump to the conclusion that it's Parkinson's. They may you jump to other things that could be worse or could be more detrimental to the job, and I think most managers don't really care so long as you're productive, you're working well and they can see that happening into the future. So you still got runway to do more jobs or meet more interesting things. If you tick those boxes, they're not going to care and for someone like me in an HR role which is not physical, there's really not many, if any, accommodations that need to make in the workplace. Okay, if I was paralyzed or wheelchair bound then I have to make sure the ramps or accessibility considerations. But with Parkinson's the worst thing is from a work perspective is probably that my typing isn't as fast as it used to be, but I can still bang out 30, 40 words a minute, which is plenty. So I think from a work perspective it hasn't sort of affected things, but at the same time I don't think it's helped either.
Speaker 2:So I think there are probably times for instance, one of the symptoms that people can have that I get from time to time, they call it the Parkinson's mask, and it's where you tend to have more of a poker face, so which, if you're playing poker is great, but if you're sitting down and having a conversation with someone, you don't want them to mistake that for a lack of interest or for a lack of caring about what they're doing. So that's one. Another one is the way I project my voice. So for some reason I don't know why and I may not ever know why, maybe but I will be talking and to me it sounds like the regular volume, but other people having difficulty hearing me and my wife says stop mumbling or stop low talking. I'm not low talking. And she says pretend that instead of talking to me now you're talking to the far corner of the room. Make sure the person in the far corner. And so I try that and it just feels way loud and weird and so on. So there are things like that that can potentially unconsciously go against you. So I know from the voice thing stronger voices or louder voices are more positively correlated with attraction or people wanting to hear that. So if you're a bit too monotone or you don't project enough or you've got a little bit more of a neutral expression, how are those things being picked up by the people around you as nonverbal communication, and we all know how important nonverbal stuff is.
Speaker 2:So I can't put my finger on anything that's gone wrong that I could say oh, that's because of Parkinson's at work, but I can imagine that it's made life more difficult generally without even knowing about it, if that makes sense. But once again, if those people know about it and have that convenient label, then they're fine and they move on. So there's a couple of times when I've told my manager at work and I've been lucky to work in companies or to have managers who are good managers and I told them and once again it's sort of Q sad face, and then they quickly moved into more pragmatic things. I would say so is the medical plan giving you what you need? You're getting the support you need. How would you like us to deal with this with the teams? Do you want to tell them? Do you want me to tell them, or do you just keep it quiet? You know they made it safe to talk about it, at least with them. So I've been fortunate in that regard.
Speaker 1:Yeah, yeah, I mean, you and I have both worked in HR roles and we're often in the position of advising managers and leaders about all sorts of situations. You know what would be your advice to other people with Parkinson's or other diseases? You know, should they tell their employer or not?
Speaker 2:Well, I think you know, I think telling your employer is probably required If they say yes, if you're doing a job that requires a sort of physical side or you're doing a job where you reasonably know it's going to be negatively impacted by the thing that you've got. But even then I don't necessarily think there's necessarily an obligation to tell them. Maybe some jurisdictions it's different or some employment contracts are different, but for the most part I don't think it's necessarily an obligation. But I think if you think it's going to start impacting your work at some point, you're probably better off having a common understanding with that manager about what to expect and how to deal with it, and that will actually probably lessen the likelihood that something will go wrong. But it is super hard.
Speaker 2:So I think for leaders, I think for them to understand that these kinds of issues are really common. So it could be something rare like my one, but chances are if you have 10 people on your team, at least one of them struggling with depression, maybe an addiction of some kind, anxiety, god knows what. But there's tons of this stuff going on all around, things like mental health awareness day or month. Those things are good at helping create an opening for a conversation. But if someone does come to a leader and start to open up, I think the best employers or the best leaders are the ones who create that space for people to be open and to just generally listen not overpromise or underpromise, but just listen and then help people feel safe to be their best and to channel their energy into work, rather than how do I play today with Parkinson's or what's my story now? Kind of thing.
Speaker 2:If they can have that more open conversation. Because when my leader said, oh, are you getting what you need from the medical plan? It's kind of a moot point because they're not going to change the medical plan just because I've got a bad thing going on. Do you know what I mean? But it was just that sort of sense of offering support. Even if in reality is a bit hollow, it still helps. And then once that person has worked out what's going on with you, they're fine and you can just move on.
Speaker 1:Yeah, I'm hoping you can't hear my dog sparking the going off. You know it's interesting with the medical plan. You know an organization might not change it for one person, but if they know there's a number of people with something that's similar and it's not being covered, yeah, there's a hope.
Speaker 2:Right, there is there is, and my last comment actually had a really great medical plan, the one before, yeah, it was kind of average, it was. It was what you like. As you know, in Singapore, private health insurance is pretty, you know, it's a bit thin on the ground. So you tend to have these really super expensive policies designed for international staff, which literally could be 50 grand a year for a person or for their family. Or there's the basic sort of government support, which is fine if you're in a car accident, but if you need something like a hip replacement, then it's less useful. So so, yeah, so I've experienced the range of options and I am glad to think that you know more companies are putting more emphasis on the health whether it's, you know, health and well-being generally and hopefully therefore putting a bit more money into things like medical plans so people do get the support they need.
Speaker 2:But yeah, I was just thinking of that one instance where she asked me. You know that one instance clearly wasn't going to change things. But you're right, I think there is more attention, there is more money Good question.
Speaker 2:And people realise that, or leaders or companies are realising that there's a payback to this. You know, if we invest a little bit in health and well-being, we'll get an outsized return in terms of productivity.
Speaker 1:Yeah, yeah, one of the things I wanted to ask you and it's in some of the work that I do, so you know I work with organisations to try and make them more inclusive and diverse and I'm actually doing some work at the moment around recruitment. So how do you do inclusive recruitment and what are all the moments in that, in that process, where you can be more inclusive and that you can? You can help people be better as part of the project, the process? One of the things we often say to candidates in job ads or if they've been given an opportunity for an interview, is is there anything, any accommodations, we can make? How can we make this process more accessible for you? And I know that you're interviewing for roles at the moment. The market hasn't been great in the last, you know, a couple of years. So how you know, do you talk about that? You have Parkinson's during interviews. Do you ask for accommodations in any way? Like, how do you, how are you handling all that at the moment?
Speaker 2:That's a good question. I don't have an answer on this one. Let's say, you're you walk into an interview, it's going to feel pretty weird to at some point weave into the conversation something about Parkinson's Now being being more open about those questions like is there something we can do to make it more accessible, or accommodation. I think most people's instinctive reaction in that situation we're just no, no, I'm fine, we're all good, let's carry on. I think launching into oh well, let me tell you about my medical history it just it would feel very weird.
Speaker 1:Yeah, but there's this, there's a, you know, there's a, there's, there's gap in the middle between advocating for yourself and, you know, telling the I get it, I get it.
Speaker 2:But if an interviewer notices something like the tremor or something else, they're pretty unlikely to say anything as well, because they're probably worried about legal issues around discrimination or or just opening a Pandora's box that they don't really know how to deal with. So I think trying to create that just like with the manager example, trying to create a safe space where people can open up if they're ready to do so I think is a good idea. But yeah, I typically wouldn't lead with it in an interview. But but yeah, I haven't worked out how to deal with that comprehensively yet. I think part of the once again, part of this sort of you know, coming out or being more transparent is part of that. I just, you know, if I could flick a switch and everyone knew that I had what I have, yeah.
Speaker 2:And and what that means. That will be awesome, because then I wouldn't have to explain it to all the time, but I also wouldn't have to worry about it either, because they already know. They know it's not going to, in fact, impact my work. So let's, let's keep going.
Speaker 1:Yeah, cool. Tell me about how your family have been dealing with the diagnosis and supporting you.
Speaker 2:Yeah, I think to be honest, I've not told everyone in my family yet, so my wife did remind me that you know that that might be something you want to get out. After about four years, podcast goes live, right, yeah. But you know, of course the ones I have spoken to are being super supportive. My wife in particular has been amazing when, when the diagnosis first came out, I was I was super conscious about hiding it, and not because because I was still dealing with what it meant. I didn't know how to deal with it from a work perspective or just general life perspective in terms of people knowing and, and I said, listen, you can't tell anyone, right, because once the genie's out of the bottle, it's out of the bottle and I can't control the narrative, but at least right now, while symptoms are pretty mild, etc. And this is going back five, six years, right, so when things were earlier on, you know I don't want to let that, as I said, that, genie out of the, genie out of the bottle.
Speaker 2:But that actually put her in a really tough spot too, because, for instance, one of her good friends is a nurse and we spent a fair bit of time talking with each other and she clocked it, there's something not quite right. And she privately said to me so you know, is it, is it okay, everything going all right? And Meg held the party line and said, yeah, he's fine, nothing to see here, move, move, move, move along. And but of course that wasn't the case. The friend just sort of thought what? Probably thought, well, you know, that doesn't quite add up, but then obviously not really talk about it, so I'll leave it alone. But that's still that friend is wondering. So what really is going on? You know, they're my wife. Wife is sort of the well, how do I deal with this with different people? And I wasn't giving her the space for her to deal with it as well. You know, I just said listen, let's not talk about it.
Speaker 2:And from my perspective it was very much a practical, pragmatic thing about trying to manage the narrative. But I really put her in a tough situation in doing that, which I only really recognize much later on. So you know, I think that's one of my sort of advice is to people is you know, this isn't just you that's got Parkinson's or you that's got whatever the issue is, it's your whole family, really the people around you, you know, because this could have implications for work. It could have implications, I mean, long term, could change where we want to be, what we want to be doing. You know it's the whole family that's got some skin in the game, and recognizing that early on would be really helpful, I think, for most couples or for most families.
Speaker 2:But I just my brain wasn't in that space, it was still in that don't give it oxygen. You know, if you talk about this stuff it makes it real. You know, so luckily that that that that has passed. I mean, I still don't enjoy talking about it with people, but at least at least I've made that sort of leap of logic.
Speaker 1:Yeah. What's your outlook now, both, I guess, medically and mentally? Where are you at now?
Speaker 2:Yeah, listen, you know I have my bad days every now and again and I'd obviously prefer not to have this, but I'm so, I'm generally positive about what's next, because it has moved very slowly for me, so hopefully that will continue. I mean, who knows what the future will bring, but that should just continue. And there's a you know I'm not on serious meds yet, like I mentioned before, so there are various options I can pursue before things get bad, and there's tons of research on this topic, which is great. So, if you know, if quantum computing and AI doesn't turn into Skynet and kill us all it, you can at least fire it for, you know, find a cure for Parkinson's instead and I say that jokingly, but it is true that things like AI, you know it has its risks, but this is one area where it can make a huge difference in finding a cure or or for finding more effective treatments. So I'm generally positive. I mean, the big question for me is and Will Lowe's discoveries happen in time?
Speaker 2:Yeah and if I've got another, probably productive 15 years where I could be working if I want to be, you know, is the 15 years enough? And I'm pretty confident that it will be, that there will be things to come up. I was chatting to someone the other day, in Quite independently of this whole Parkinson's thing. They quoted some news article that they'd read saying Life expectancy for us. For us, right here and now, our life expectancy will be five years better than it is now Because of discoveries that are yet to be made.
Speaker 2:Wow so and I have no idea how reliable that that quote is. It's from a fairly unreliable friend. So you know, take it with a grain of salt, with teaspoon or whatever. But but the idea of that sort of resonated with me and I could see how that could very much be true in my case as well. So I think we just got to wait and see what happens. In the meantime, you know, staying close contact with my neurologist or other support, you know medical people Getting the exercise, all those sorts of things help. So so I'm, generally speaking, like I said. I had my bad days but I'm positive about it.
Speaker 1:And one of the, I guess, unintended consequences of this podcast which I had Not really thought about when I started at.
Speaker 1:One of the things I thought about was just sharing people's stories so that Others could connect emotionally with those stories and then think about, well, how can we be better in the world, how can we make the world better for everyone really?
Speaker 1:But one of the things I didn't think about and it happened on my very first episode was with a mom and her fourth son who has dwarfism, and she came and talked about that experience being in Asia with dwarfism, but also just generally that condition and and the the episode went out and Maybe I don't know how many weeks later, maybe a couple of months later, she contacted me and said Lisa, your podcast episode has made a difference for someone else. Family in Singapore who've just had a baby with dwarfism contacted me because they heard me on your podcast and they were able to connect. She was able to share her experience of having a child with those challenges and it was a massive help for the Singapore family because you know it's not a common disease in Singapore. So I know that you have an offer, I know that, that you would like to help as well. What, what, what do you say to people about how you can help them?
Speaker 2:Yeah, I mean I think one thing just before I answer that, one thing I'd say about Facebook that is actually quite good is all of those support groups that they have there, because if you've got a one in a thousand thing, chances are you don't know people around you that can help right. But suddenly on Parkinson's Young onset Parkinson's groups that I'm on there's a couple of posts a day about people who've tried new things or Try you know, like I mentioned cramping in the foot, like what do they do for that? You know, and you get practical tips on the way. So that can be quite useful. But my offer is really that you know whether someone's going through Parkinson's or something similar. That's probably less likely. But if people are going through something where they're worried about how to manage it in terms of work or or how to manage how they you know, how they become more transparent about these things or whether they should be more transparent, you know I'm happy to try and help.
Speaker 2:I Might not have the answer and I'm conscious that it's different for everyone. So me having something that's more physically a Problem with a job that is not physical, I mean that's the easiest combination. If you're gonna have one of these things. That's easy combination. But you know, sometimes it helps just to know that you're not alone, that there are other people going through similar things. And if there's a way I can help in that regard, then I'm happy to. I mean, people can contact me through LinkedIn or what have you, and I'm happy to sort of privately have a little chat about it. I mean, within reason, if there's like a thousand people who call me up, that's gonna be tricky, but but I'm guessing, you know, I'm guessing that's not gonna be a problem.
Speaker 1:I hope not, I hope not.
Speaker 2:Well, I'll deal with that as and when it comes, if that is a problem, but I just I generally just want people to know a little bit more about Parkinson's. Yeah, I want them to know that it's. It's not something that Stops you being able to work, that you can still you continue to be productive and and and useful and and for people to know my story a little bit, so I don't have to talk about it all of the time. But but yeah, if there's a way I can help other people in the process of all of that, then I'd love to.