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Jane Simpson: Hi everybody. We've got another young man today. Todd, are you young?
Todd Johnson: ⁓ I I wouldn't have thought so. But thank you, I'll take it.
Jane Simpson: Okay. Today we're joined by Todd Johnson. Todd has MND living with him. He lives in Victoria. And I'm gonna let him tell the story, otherwise I'm gonna ruin it for him. So Todd, you know, we always start off with, Who are you?
Todd Johnson: Well, who am I? Well, I'm a bit of a family guy, I guess, is probably where I'd first identify myself. So I'm at home with my ⁓ family and a couple of dogs. So yeah, I live at home with my wife Catherine and ⁓ my two amazing daughters who are eight and twenty three, so they're still with us at home. No, thank you. Yeah, I've got a bit of a baby face back. Yeah, and ⁓
Jane Simpson: ⁓ you're not that young then. You're not as young as you look. No.
Todd Johnson: No, that so that that's who I am first and foremost. But ⁓ you know, in terms of a bit of my background, I mean I was working in financial services in executive roles for you know, pretty much my whole career. Well, I didn't start off in exec roles, but ⁓ spent a lot of time running operational teams and strategy in super and investments, insurance, workers comp and you know, big teams, ⁓ You really my Denny w was really big on customer service and really big on just good people leadership. ⁓ they were the two things I really identified and wanted to be known for. and ⁓ yeah, I stopped working ⁓ about a year after I was diagnosed with ⁓ and D. So I was diagnosed in on the sixth of July twenty twenty two. ⁓ I feel like all of us when we get diagnosed, we all know the date because
Jane Simpson: And y we often know the time as well. Yeah.
Todd Johnson: It's yeah, yeah, well yeah, I was diagnosed that well it was meant to be eleven, but I didn't go into my appointment until about twelve thirty. ⁓ because then it just was so late. ⁓ yeah, well I I didn't I didn't really think I was going into be told I had ⁓ and D. I thought there's no chance. ⁓ but ⁓ yeah, that's not what I walked out with. ⁓ so yeah, I w it was funny. ⁓ well not funny, it was
Jane Simpson: ⁓ God Agony ⁓
Todd Johnson: A little bit sad. And it was just after COVID for so the hospital system had really blown up. And the neurologist was doing trying to help with other things at the same time as taking patients. So when I saw him, I thought I was going in because I I'd always been told if you get diagnosed with ⁓ and D, which was a small possibility, I'd always been told I'll tell you to bring a support person. And I wasn't told bring a support person and I thought, ⁓ I'm safe here.
Jane Simpson: Yeah, ⁓ no.
Todd Johnson: So I'm either going to be told we just need to do more testing or or I'll I'll be told you don't have it, you've got something else, which is what I thought. ⁓ and then yeah, he sort of he he wasn't prepared for the meeting. He ⁓ he sort of winged it on the spot. So went through the results in front of me, read them out loud. And they were like results from the nerve conduction study and ⁓ various testing that we'd done, and it was pretty conclusive, I know. A lot of people when they do that testing, it's not conclusive, but mine was like, This guy's got ⁓ and D, basically. ⁓ but I still didn't think he was gonna tell me that. He sort of read in it out. I mean he ⁓ took a about three or four phone calls during the ⁓ during the ma meeting and then he just looked at me and said, I think you know what I'm gonna say. And I I said to him, ⁓ I did it, but now I think I know you are gonna you're about to tell me I've got ⁓ and D. And he said, Yeah, I'm pretty sure you've got it. And ⁓ it was a really funny one in that I had a F POS machine in front of me within about two minutes. so it was I mean, he was you know, aware of the fact that he was running late and here he was giving me a two hundred and ninety dollar bill when I'm just trying to come to terms with what on earth. I remember just walking out and going, What on earth do I do now? like what do I do? ⁓ which ⁓ yeah, it was it was it was a huge shock and ⁓ so that's where my ⁓ and D journey ⁓ started. And then I just kept working for about a year until I started saying, Well, this is not really how I want to spend my remaining time on this earth as much as I love the people I worked with. I I just it was pretty tiring and the work came at me whether I liked it or not. So I stopped working and started just doing any little volunteer piece I could with. ⁓ and D ⁓ just to try and keep busy but also to help in any way I could.
Jane Simpson: ⁓ your story unfortunately is not unusual. And I haven't gone through the results yet, but I I've done a survey of of people's diagnosis stories and unfortunately yours is quite common. ⁓ and the fact that you go in there with no support person, you know, I sit here thinking, ⁓ shit, he had to drive home. And that's so dangerous, you know.
Todd Johnson: Yeah. Yeah, I yeah, I just don't remember getting home to be honest. ⁓ you know, and and the support person's crucial because when you're diagnosed with ⁓ and D, if you think about any other diagnosis, and on any other, you know, illness is awful too, but quite a lot of other illnesses, your your mindset you might already know a bit about it, but your mind will go into fight, how do I fight this? And so you're pretty quickly going, Can I, you know, take some medicine? Can I
Jane Simpson: Exactly.
Todd Johnson: You know, have an operation, can I go into a treatment overseas? Can I change my diet? What can I do? And with with ⁓ and D, you can't really go to that. So you need a person there to just wrap their arms around you and be there for you. And ⁓ yeah, unfortunately, I yeah, it is a bit of a common sort. I mean, I don't think there's ever a a great way to tell someone they've got ⁓ and D. It's the most devastating thing.
Jane Simpson: Agree.
Todd Johnson: they're ever going to hear. But the number one thing that
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has to happen is you net the doctors need to know that you've got it before you walk in the room. You must have a support person. And then they need to make some time to tell you about where to from here, what you can start doing. Because there is great support out there for us. But who who gets diagnosed with ⁓ and D that knows about any of that? So he feels very, very lost.
Jane Simpson: You do. Take me back a little bit, ⁓ to why did you start getting the testing?
Todd Johnson: Well, I was you know, d I was I used to go to gym and ⁓ used to play a bit of tennis and I I was running a fair bit and funnily enough I I used to think I used to run at decent speeds, but I I saw this old guy, Mark he couldn't have been a day under seventy five. And he ran he ran from the side when I was going for this job. And I looked at him and I thought, gee, you're going slow. You are, you know, like at least I'm go a bit faster than you are. But anyway, good on you for being out. And then he ended up in front of me and he passed me. And I thought, ⁓ my God, I'm slower than him. And I think I've got a bit of a limb. ⁓ and I just kept thinking it was just a calf strain that you get when you get a bit older. ⁓ but then I noticed ⁓ some twitches in my legs, so the fasciculations and from that I thought, ⁓ you know, I don't know what this is, but it's not doesn't look right and my calf isn't getting better. ⁓ it really wasn't much more than that. It w I just thought I was going to I had a calf tear or something. And so I yeah, I just went in and saw the doctor at that point. And believe it or not, I didn't see my normal GP who's amazing. I saw another doctor because I just wanted to get in. And he said to me, you know, with your symptoms, it could be this, you know, number of things. But he said, Look, ⁓ and D's a possibility, but you you want it's not ⁓ and D because it's not in your face. And I said, ⁓ I I don't know if that's right. Like I'm pretty sure Neil Danahoo, I just read his book, ⁓ got in his hands first. ⁓ so I don't know if that's right. And you go, No, no, you could definitely get it in the face. ⁓ went home, googled that, and found that not to be true. ⁓ but you know, I mean he's a GP, he's got a lot he needs to know. And he didn't You know, ⁓ that didn't make, you know, a huge difference. At the end of the day he referred me to a neurologist and yeah, the rest is history. But yeah, it just it was something really small, like just a a a limp, a bit of a limp that wouldn't go away and ⁓ and twitches in my l I'm in my legs.
Jane Simpson: What did you know about ⁓ and D prior to that G P saying something?
Todd Johnson: I knew. I I think I probably knew Well, I was you wouldn't believe, like I was actually just by complete coincidence reading Neil's book and I remember he tells a story about not being able to swing a golf club and I was thinking, gee you know, look, I've got some really strong weakness in my leg. So I learnt about it through that, but also
when I was about twenty, I we had a close family friend who died from ⁓ and D and
Jane Simpson: ⁓ you read Neil's book, so yeah. Mm.
Todd Johnson: I I remember we I remember going to our funeral with my dad and ⁓ I said to him, gee dad, you know, I reckon that would be probably the most horrible way to die. Like I out of all illnesses, I I couldn't think of anything more cruel. And I've never forgot I said it. It was my first funeral. And ⁓ you know, you don't remember things you said from 30 years ago. ⁓ but I've never forgot I said that because I just felt
Jane Simpson: Yeah. No.
Todd Johnson: she'd become a a prisoner in her own body and I just thought it was really cruel. And yeah, I I so I I I had the I I knew of it. ⁓ I just didn't think I had it because really I I was pretty I felt pretty healthy apart from a bit of a limb.
Jane Simpson: And that's a common story too. Very fit, very healthy. Yeah.
Todd Johnson: Yeah.
Jane Simpson: You do a lot of work, volunteer work within the ⁓ and D sector. So you're the chair of ⁓ and D Victoria?
Todd Johnson: That's right. I am.
Jane Simpson: Tell us and so tell us about your journey, how you started working in the ⁓ and D, volunteering, and then working your way up to the hallowed heights of chairman of ⁓ and D Victoria. Did was that too much?
Todd Johnson: Yeah, you ⁓ it's it ⁓ well no I'm I'm happy to share my story. It's ⁓ it's it's not anything exciting. I really ⁓ I mean when I was diagnosed, my first instincts were I'm just gonna travel with my family, I wanna spend time with my family because you gotta think about your initial diagnosis, you don't know if you're gonna live for twelve months or ten years. ⁓ so my initial instinct was I just want to spend quality time with my family. And then after about a year, I started to get a bit of a sense that, you know, I was going to be a little bit slower than average. ⁓ and so I just started and I I'm I'm I just liked to contribute and give back. So I was giving feedback to whoever would listen. and then I started volunteering on some ⁓ committees at Calvary Healthcare, Bethlehem and ⁓ then yeah, we did some fundraising with my mum. She did a lot of fundraising for ⁓ and D ⁓ at her retirement village and Yeah, she's pretty good. She's just done an amazing amount. She's constantly raising money for ⁓ and D VIP. And I got through that I got to meet ⁓ the CO at the time, Kate Johnson, and ⁓ we got to know each other and then she said, Would you like to join join the board? And I thought, Yeah, I I would, yeah, I really
Jane Simpson: Mm, bliss.
Todd Johnson: ⁓ you know, I could bring a bit of lived experience, but also my different lens that I've had through my career. ⁓ so why not? And ⁓ I I joined the board and you know basically contributed as a ⁓ a member of our our board or our state council and ⁓ over time what happened was ⁓ we'd had ⁓
Jane Simpson: Yeah.
Todd Johnson: couple of chairs, ⁓ a chair one of our chairs, David Lone Party he stepped down
after twenty-five years of service, which was just incredible. And then ⁓ we had an another chair for for about just over a year or maybe a couple of years and ⁓ he also stepped down because it's a pretty big commitment and we'll have family commitments and other things can happen. And ⁓ I remember When that happened, I'd made phone calls to a few of there's a few pretty talented board members and I've made some phone calls so and I think you should put your hand up for the chair position. That's really why I went into the meeting going, I you know, I think you'd be a great chair and I fit spoke to a few people and Yeah. And then in the end I ⁓ someone sort of s sort of said, Well, why don't you be chair? And I'm like, What? Like, no. ⁓ I'm you know, I'm here to help and
Jane Simpson: Got I've got the numbers up for you.
Todd Johnson: And in the end, I said, Well, I'll tell you what, why don't I just step in and get us, ⁓ you know, we were looking for Kate's replacement. She'd moved on to Cystic Fry Box after seven amazing years. And yeah, I thought, well, you know what, I'll I'll help recruit a new CEO. ⁓ we needed to rebuild the board a bit because we'd had a few exits. And I thought, you know, I'm really passionate about getting more people with lived experience on the board. I wanted to hear things like, what does this mean for people with MND a lot. ⁓ and I wanted people who are working in the industry and have lived it to s have a bigger voice on the board. so so I was I thought, well I'll I'll just do it for a little bit. ⁓ and then I'll hand over to someone else because I'm just a bit concerned as to whether I can meet some of the obligations just from an energy perspective and and you know, from the challenges I have with my health. But yeah, that was I've gone. I think that was about September last year and I've stayed on. It's my intention at some point to step down but stay on the board ⁓ and keep supporting. I I think we've got some wonderful state councillors. So we've got a you know ample amount of choice ⁓ for our next president. But at the moment, yeah, I'm just loving working with the team a bit more closely and ⁓ with our CEO Mary Jane ⁓ more closely and probably too engaged from their perspective. as a as a chair, but I can't help it. I just ⁓ care so much. And yeah, so that's how I became president. And I love it. The bits I really love are working with the team. Yeah, when we're working on strategy or business planning. I I love that. ⁓ that's that that's the part that I really really thrive and and enjoy.
Jane Simpson: If you enjoy it and if you're thriving and if you're annoying people, I'd stay there for as long as you possibly could.
Todd Johnson: Yeah, hopefully I'm not too many people. I I wanna say Yeah, it's you know like I I I'd like to I think there's two elements to it. I I have my head and my heart which wants to say doing this forever. And then I have this body that sometimes says, You're not doing anything today. ⁓
Jane Simpson: I I thri I I I thrive on annoying people, you know, just just reserve it. Hold it.
Todd Johnson: And that's the that's the challenge. You know, I I've said I'll keep doing it for as long as I can, but let's prepare for succession planning and and the like. So yeah, I i if it means I s I take a little bit of a step back, I I'd still love to be involved. ⁓ but yeah, it's still working away with the team and just loving every bit.
Jane Simpson: ⁓ this To be fair, everybody in a position, chair or president, should always have a succession plan in place. From the big from the very first day they start, they should have a succession plan. It's not something that should just wander off. ⁓ I wanna say that David Lampard listens to every single podcast and I regularly get texts from him with feedback. So and I really appreciate that a lot. It's lovely.
Todd Johnson: Yeah, I go. Yeah. That's ⁓ Yeah. Yeah, it was a beautiful man. He was ⁓ he was just such a a gentle soul, very good listener, and just a natural leader. And the fact that he stayed on a board for 25 years, I mean, it's just phenomenal what he did. And, you know, I think, you know, to give up like sometimes we have privileged lives, we have great careers, we learn all these different things, but
Jane Simpson: Mm.
Todd Johnson: ⁓ to be some people and a lot of people get to a point where they say I want to give I want to give back. I wanna I wanna do something bigger than just earn a salary. And and David ⁓ and Wayne after him ⁓ were terrific. And I'm just you know, Wayne served on the board for a long time too and they're just wonderful people that just wanted to help.
Jane Simpson: We spent a little bit of time this year together in Canberra. ⁓ why were we there? Strategy for ⁓ N D A. Yeah, that's right. And then we had a pretty good party that night at Parliament House, ⁓ Parliamentary Friends of ⁓ and D. And I was very impressed this year at the turnout of people, ⁓ politicians and the engagement.
Todd Johnson: Yeah, yeah. Yeah. Yeah. Yeah, so was I. Yeah, and it was nice what I think if I sort of start with the strategy session, what what I think is happening now and better than ever is the state associations who provide all the care for people with MND and they provide all of it. They are coming together with ⁓ and D Australia to say, how can we do it better together?
Jane Simpson: Mm.
Todd Johnson: And then that is going to make better outcomes for people with ⁓ and D. So I was really excited by the collaboration in that room, firstly. And then and to have a really clear strategy and plan. ⁓ with a focus obviously on better Yeah, people with ⁓ and D and their care outcomes. ⁓ and then yeah, it was nice that sometimes politicians, you know, they might have late events or and it's difficult for them to come, but the attendance was really strong and
Jane Simpson: People with ⁓ and D. Yep.
Todd Johnson: ⁓ there was a very confronting emotional speech ⁓ about by Kara
who lost her husband. Yeah. And I think, you know, I I was ⁓ I mean, I was so moved, but it was it hit pretty close to home. But
Jane Simpson: Yeah, Helen. P the politician standing next to me cried through the whole thing. Which is good.
Todd Johnson: Yeah, well that that goes to Yeah. Yeah, well it's good in that ⁓ it's good in that they yeah. Yeah, I I think I think what it hopefully we're starting to be able to do is there's been such a big brand built with fight and Neil's done the most incredible job. I I think there's obviously there's the obvious advocacy and awareness of MND and the money raised, and even though they haven't found the cure.
Jane Simpson: It's good in the
Todd Johnson: You've got fail a lot before you eventually find it, right? So whatever they've done, it's not lost. But then ⁓ you know, I I think I think there's a lot that can still be done around the care side. And for those of us with MND, yeah, we we we're pretty lucky to be in Australia, but there's real gaps. and I I think the thing that Neil did for me personally. was because some days I I'm s I'm stru I'm struggle with my health and Neil just taught me to keep getting up and keep turning up. And I I keep you know, there's days where I think I I just can't I can't do this today. And I think, no, no, Neil, look at Neil like his last big freeze a year ago and you know, he he he's in a wheelchair, he completely can't move. He's completely paralyzed. And I thought, no, he would show up. So he taught I think a lot of us with ⁓ and D I don't think there's a right or wrong way to live with it, but he inspired a lot of us to keep getting out there. ⁓ so I think that's the other big big thing that he brought to the ⁓ and D community.
Jane Simpson: Yeah, stay engaged with life. Mm.
Todd Johnson: Yeah. It's so easy to curl up in a ball and just stay at home. It really is. And I don't blame anyone who does that, but you know, ⁓ I think he gave us some courage to keep getting out there.
Jane Simpson: What ⁓ are the gaps in care that you I that glare at you that you want to make change with?
Todd Johnson: Yeah, I mean that's the area I'm so passionate about doing. ⁓ well, I I'll start by saying I think care in Australia is very good and the care that you you know, we we this the care we're able to give out ⁓ MND Victoria, I think is extraordinary. But yeah, and I think part of that is because we've got an amazing organisation, but we've also worked really closely with the clinics by Calvary Healthcare. ⁓
Jane Simpson: Me too, mate. Mm. It is. It's best practice.
Todd Johnson: In terms of gaps in care, I what I want to really us to do is do some customer journey mapping so you can understand, okay, this is the point that someone's diagnosed to their first appointment, to the s challenges that they might have with diet, saliva, coughing, breathing, pain management, ⁓ orthotics, being able to walk, losing their hand function, having a shower. All of these things happen on a person's journey with ⁓ and D. And what I want us to do is to map it out and understand where we're really good and where there's gaps. And I think so that's the big picture where where I really want us to go back and look at because I I think and and this might not be the thing that makes the biggest difference to longevity of life, but When you're diagnosed with ⁓ and D, and this is from my experience when I talk to others that are also living with ⁓ and D, you when you get diagnosed, your mindset is, what can I do to live the best life from here? And the reality is your journey is it's already mostly decided for you. It's not like you can suddenly you have some treatment overseas and you can slow it down by half. It's you know, I I I think some people think because you live longer maybe they had some special did something special or not. I don't really necessarily believe that. I think that the person's journey is mostly predetermined. But we still want to find a way to live our healthiest, best lives. And one there's probably two areas that I'm most passionate about in care gaps. One is around diet. ⁓ I feel like you There's been a huge focus on when you lose your ability to to chew and swallow. Obviously, there's you know, feeding tubes of pegs, but when a person's first diagnosed, what they'll do is they'll turn to and say, What can I do with my diet to live a healthier, longer, better life? And it might only extend it a little bit. We don't we don't know, but what I think it can do is give you better quality of life. And there's a lot of things that can be done in terms of food. That can help you have better days. So that's one area that I'd I'd like to say at some point, someone who's diagnosed with ⁓ and D says, I've been diagnosed with ⁓ and D, and the research tells me that if I go on this diet and there's someone saying, Go on, change your diet to this, and you will live the best. That's the best you can do. It gives you back a sense of control of something. Yeah, because the rest is out of your control. And so that's one area that I'm really passionate about. And the other one is around orthotics. Like I I mean, w we've all seen the the YouTube pictures of the dancing robots in China and they're they're unbelievable. But it's in the orthotics space, what tends to be is a lot of orthotics are designed for people who are either recovering from an injury and getting better. Or someone who might have a problem with a limb that just it's static, right? Like they're either missing a limb or a limb doesn't work. Whereas a person with ⁓ and D is getting worse every day. Just a little bit, right? But and so I think I would love to see some more robotics that just help people that might have weak legs or weak hands ⁓ to be more focused on helping them still maintain a quality of life. a bit more. So I think there's an opportunity to put a lot of research funding into that space where you could say, Well, I you know, I I still want to be
independent and I but I can't transfer chairs on my own and maybe there is a piece of equipment that can do that. You know, there's there's a guy who invented a device that pulls his pants up. Yeah, so there's
Jane Simpson: ⁓ that's sensational. He he and he's also invented one that pulls his his Duna up too.
Todd Johnson: Well legend. And and you can't like sometimes I've got the Duna on. If it's not in the right spot I have to call for help. And ⁓ you know, pulling your pants up, I can tell you it's something you take for granted. You go to the toilet and then it's it's a battle. Like you're you're what
Jane Simpson: ⁓ actually hang on, we're talking about two guys. So there's one guy here, ⁓ I've asked him to come on the podcast but he doesn't want to, who invented the pulley upy panty thing. That's he's a legend. And then there's a guy in the UK who was an engineer also and he's inventing he's invented the Duna pull up thing, the a whole range of robotic robotic things, which is i you know, going to what you're saying, is that it allows independence and dignity for a little bit longer.
Todd Johnson: What a legend. Yeah. Nothing. Yeah. Yeah, yeah. I mean I I would love something to help me roll over in bed. ⁓ you know, I I think it it's something it's pretty hard when you're on one side and you can't get to the other side. But you only need I for a while I only need like a little nudge. but there's so many other things like ⁓ you know, disability clothing and the like that could make a huge difference. You know, I think there's devices now that help people run up mountains with less effort.
Jane Simpson: Yeah.
Todd Johnson: So why can't those devices be refit to help people that have got weak legs but hold them upright so they can walk instead of going into a wheelchair? ⁓ so I I reckon that robotics has come far enough that we could do some great things for people with ⁓ and D. ⁓ yeah, so th th they're a couple that I'm I'm really passionate about.
Jane Simpson: They're really good ideas too. ⁓ all right, we can talk more about that. Now let's talk about how MND is affecting you physically now.
Todd Johnson: All right. So while I'm in a wheelchair permanently, I I can transfer out of the wheelchair. transferring in's a little bit difficult because if I'm coming from somewhere that doesn't have arms, I can't hold myself. So I sort of shuffle across. So my legs don't really work from the knees down. ⁓ I don't have any movement, just a tiny movement in my right feet. and ⁓ from ⁓ upper body perspective, I've got really weak hands now. So I my wife cuts up my food. I can't open a can of drink or a bottle. ⁓ I can still use them. I I can sort of write but I kinda write like a doctor now. Really on messy writing when I used to have really much writing. so yeah and and then I'm I'm struggling with ⁓
Jane Simpson: Okay.
Todd Johnson: My my respiratory muscles combined with my asthma are causing me a few challenges in that sometimes I really am short
of breath and it come can come along quite heavy. Although like you live and you learn and you ⁓ I sort of realised it was partly asthma and not just the ⁓ and D, ⁓ which I didn't realise. I thought it was just ⁓ and D when it was first happening. So that's something I'm dealing with. And The the one area that I I'm I I struggle with that I think some people with ⁓ and D get and some don't is I get a lot of body aches and pains, but quite severe. and to the point where I can almost be not functional some days. So I've gone through a lot of cycles where I've tried different, you know, pain meds to just take the body aches away. ⁓ and I think that one's a a a bit of a tricky one in that
Jane Simpson: Yeah.
Todd Johnson: A lot of people don't get that. They might get a bit of mess. ⁓ but then I see on the forums I see a lot of people and saying things like, you know, the thing I'm struggling with is pain. I think, ⁓ hang on a minute, I thought I was the only one who had that. ⁓ so yeah, that that's a bit of a challenge. I feel like at least I can rest and take some pain management ⁓ tablets that help with it, but ⁓ you have to be careful because if you take too much.
Jane Simpson: Yeah.
Todd Johnson: Or the meds start playing around with his stomach, so
Jane Simpson: Yeah. Yeah. And then there's the then we got a whole cycle. My husband suffered terrible pain. Terrible lying on the floor screaming in agony pain, you know. So each each person's different. Mm.
Todd Johnson: Yeah. Yeah, well that's Yeah. ⁓ it's it look, each person is different. There's there's a lot of similarities and differences. ⁓ and it's just like human beings, right? Like some people, you know, I one of the things I always say to people is find your way to fight. ⁓ don't fight someone else's battle. So, you know, you if your thing is staying at home with your family and living a quiet life, then that's nothing wrong with that. If your thing yeah, if your thing is travel,
Jane Simpson: Yeah. Yeah. Do it. Yep.
Todd Johnson: Go travel. If your thing is getting a tattoo, go get a tattoo. but like you I I still believe the journey is is the journey you're going to go on is pretty much predetermined. Once you've got MD, I think, you know, it it is what it is. Like you've either got a slow form or a fast form or a medium form. ⁓ but you can the the thing that you I I think you can do is don't let it Don't let it win the battle with your mind because it's the only battle you can control. You can't there's nothing you're going to be able to do to stop your hands or your feet or whatever from working. But you know, the one thing you've got control over is your mind and your mindset. And I I think and it's it's not just as easy as saying it's not it's not just as easy as saying just be positive. You've got to really train it.
Jane Simpson: Yeah.
Todd Johnson: practice it and then train and practice again so that you can when you're having the tough days you can put your strategies into place to get through the days. Cause the reality is, ⁓ people have tough days with an illness like this.
Jane Simpson: Did you travel in that first year?
Todd Johnson: Yeah, heaps. I went berserk. Yeah, I was one of those people that really I I was really saving for a time and I wanted to be a bit of a grey nomad and go round Australia with a caravan and the world and ⁓ but
Jane Simpson: Ha ha. So you accessed the super and you thought, What the hell?
Todd Johnson: Yeah, well, ⁓ you know, well, this is one thing I would say before I answer the question around travel is when you're diagnosed under sixty-five, especially if you're diagnosed in your thirties or your forties, you haven't financially got to a point often where you've set yourself up. And what not only do you lose your income, but you lose quite often your partner's income who's going to need to take care of you. And yes, there's the NDIS, but I don't give you any money. They just help you.
Jane Simpson: Go you. Yes.
Todd Johnson: Right. So they might give you a wheelchair or they might help, you know, change a home so that's accessible. But you don't make money out of being on NDIS. They're a caring organisation that help you. And ⁓ what I think is really challenging is ⁓ people lose their income. And I've seen single mums get ⁓ and D that people lose their profession who've got kids and, you know, a real small support network because they might have Yeah, grew up overseas and ⁓ so I think I I I would say ⁓ I've been lucky in that we were able to have things set up just in case something went wrong. ⁓ and then yeah, and then once we had that, we were like, Yeah, let's travel. So we went all over Europe ⁓ straight away with the kids and yeah, made some really good memories ⁓ throughout Europe and ⁓ spent time of my wife with my ice family in Poland. And then ⁓ we went to the Maldives, which was always a bit of a bucket list and ⁓ heck, that's an ⁓ the most beautiful place on earth. And then we we did Canada and Alaska ⁓ buy a cruise. I I I would say to people with ⁓ and D ⁓ cruises are really friendly for people with ⁓ and D's they're so accessible. ⁓ and
Jane Simpson: Okay. Okay.
Todd Johnson: You can be in a wheelchair and still just have an amazing trip. ⁓ and then we've done Vietnam and ⁓ Bali and then a few spots in Australia. So yeah, we did a lot of travel. I didn't think I'd get to do that much, but yeah, and I di I did it early because I didn't know what I'd be able to do after a couple of years. So yeah, I've really enjoyed that.
Jane Simpson: What what do you want to achieve in the short term for the community?
Todd Johnson: Yeah, well I want to ⁓ one of the things I I really want to achieve is we've got if you look at the pro the institutions that look after people with ⁓ and D, you have Fight working really hard on a cure and really bringing the the name of ⁓ and D to the surface so it's understood. You have incredible care organizations and then So such as the state
associations that guide you through the journey and are there with you every step of the way. And then you have your clinics, which some people can go to a clinic, but other times it's they've just got a neurologist if they're in the country. I want that group talking to each other all the time on every initiative. I want them I don't want them trying to solve the same problem separately. I want them coming together and saying, Well, hey, you guys are really good at that. We've got some money or some funding. Why don't we work together to get to solve that problem? And I don't think there's been enough of that up until now. And we're working really, really hard to just keep inviting everybody into the room so that we don't all go and solve the same problem. ⁓ the other one is I really am passionate about getting the data problem solved. it's
Jane Simpson: Mm-hmm.
Todd Johnson: Yeah, and I I've in my career we did it a few times successfully. And I can tell you the data for superannuation investments and insurance is a lot more complicated than it is for MND. ⁓ but and we've got this this wonderful portal called ⁓ Mind Oz Registry. But we need to get the data from the states and the clinics into it because as soon as we do that, then we can get insights into health, into trends.
Jane Simpson: Correct. Mind us. Yep. Yep.
Todd Johnson: But it's it's there, but it's really difficult accessing it. So I want us to solve that problem. And then I just want to keep working with MD Victoria and ⁓ and D Australia and the other states to keep solving problems of care. So that that's my passion is care. So how do we keep making helping people with ⁓ and D have good experiences, ⁓ live their best lives ⁓ while they can? So ⁓ I want us to be at the forefront of innovation and service and care. So yeah, they're the things that I'm I'm really passionate about in my little stint ⁓ of influencing somehow.
Jane Simpson: ⁓ you will. You are, and you do. Yeah. ⁓ no doubt about that whatsoever. And there are all those three things that are my are my passion points to. and you know, the thing that I hear over and over from the community is if we could all stop working in silos, that'd be a really good thing, which is exactly what you're saying. So let's get rid of ego, let's get rid of protection brackets, whatever the hell. Let's just work together. Also
Todd Johnson: Yeah. Kind of Yeah.
Jane Simpson: The dollars that we have will go a lot further. And referring something you said at the very beginning is we learn through failures. And so there's no such thing, you know, we have to learn through failures. We learn through success. So we have to share our failures as well. Because, and I've said this on the podcast many times, if research lab A a researching something that research lab C did four years ago and it failed. Hey, let's talk about it. It's not that you know, it's not brain surgery, dude.
Todd Johnson: Yeah. And I think the thing that's happening now off the
back of Neil's wonderful work is there's a lot of money that's come in to the system. The government have given support as well. ⁓ but you've got to remember the expertise in care comes from the state associations and it comes from the ⁓ and D clinics. And they are the experts in care. So if we're going to spend money to raise it to a next level and improve care. We have to work together. And ⁓ I'm really pleased that the government was able to give some money and funding to fight for care. ⁓ because, you know, I I think, you know, we're restricted in that we've got to run sustainable organisations and prioritize our services, but we don't have endless buckets of money to throw at millions of dollars at research projects. But
Jane Simpson: Mm-hmm.
Todd Johnson: I think there could be some pretty amazing research projects that while we're waiting for a cure and that work continues, people can live better lives. ⁓ yeah.
Jane Simpson: Correct. And that's not just people in the city, but more more importantly in many ways, regional and rural too, who don't have the convenience of a a clinic or a neurologist there all the time. You know, they've just got visiting ones.
Todd Johnson: Yeah, and that's the other thing that we've got to do more around. If you think about everybody's got a computer, a laptop, a phone, an iPad now. ⁓ and to be honest with you, I'm I'm in Melbourne, but I don't I I do most of my stuff online. ⁓ so we can still we can still apply
Jane Simpson: Rude. Sorry. I thought I had it off. There go.
Todd Johnson: Yeah, so I I'm I'm definitely passionate about improving a care in care in re regional areas. ⁓ but also if you think about something digital. So every time you do something digitally, it's silly if you just do it in one state, right? So say we do a a marketing campaign that is about ⁓ saliva management and people living with ⁓ and D and there's a story. Like if we do that, but we only release it to Victoria.
Jane Simpson: This is what's the point?
Todd Johnson: Well, what's the point of that? Why can't it go to all of Australia? ⁓ so I think that's one of the things that we we can start doing more of is yeah, we provide we've got a team dedicated to education for care, and we educate people in the allied health industry, we do education for people living with ⁓ and D and their carers. But if that's a digital online session, why can't the whole country come to that? ⁓ so we still need our local presence. ⁓ but I think there's an opportunity to be able to do more and to learn ⁓ from each state who does everything a little bit differently. So yeah, I really think there's huge opportunity in working together. And the state CEOs, they are really, really focused on this now, more than ever, on learning from each other and working together, putting ego aside and working as a team to solve problems. And I don't think it's
Jane Simpson: So yeah, yeah.
Todd Johnson: ⁓ like there's a long way to go, right? But I I think it's never been better than it is right now for working as a team.
Jane Simpson: Been a very good run up to that. I couldn't agree more. I'm so grateful for your time today. Thank you. Is there anything else you'd like to say? Any words of wisdom you'd like to drop?
Todd Johnson: ⁓ interesting. ⁓ look, you know, I I reiterate reiterate to people living with ⁓ and T, I I would say to you, there's a couple of things that I'm really big on. I I said earlier, ⁓ you need to find your way to fight. ⁓ I think the other thing I'd say is you're gonna become more and more dependent on having an amazing team around you. You know, you you need a lot of people to help you through this journey. So, you know, you're you're Your OTs, your physios, your masseurs, your doctor, your neurologist, your dietitian, your speechy. ⁓ and what I would say is just build the best team. Like absolutely you have a right to build the best team you possibly can. ⁓ and set the standards that you expect. And I think if you do that, they can be an incredible support to you living the best quality of life you can. And then just got lean on them because ⁓ and I I've I've put in heaps of time to having a really great team. I think my team's amazing. So yeah, I
Jane Simpson: That's also that's about being preemptive, about planning, and not being fearful about your future. I mean, at some point you need to have all of these services with you. Don't put it at arm's length until a it's a crisis or you really need them. As Todd said, interview them, talk to them. If you don't like them, you don't have to work with them, you know.
Todd Johnson: Yeah. Yeah. Yeah. Yeah, absolutely. And ⁓ and give them feedback because I don't know what they don't know. But like you said, Jane, I'd say, ⁓ you've got to get ahead of things. Yeah, if you if you think you need something in twelve months' time, you need to start working on it today. ⁓ be it equipment or a house mod or ⁓ building a good team. So yeah, just don't put it off because it'll creep up on you really quickly.
Jane Simpson: Yeah. It really will. Thank you, lovely. No, thanks for being here. And ⁓ I'm gonna be seeing you in rooms anyway, so it don't matter. Thank you so very much.
Todd Johnson: ⁓ thanks for having me, Joan. Yeah, no doubt. Good on you, Jen. You're welcome. Yeah. I'll see you later.
Jane Simpson: Bye.