Living with Parkinson’s: Clyde

It's. Nine years ago now since I was diagnosed, with Parkinson's. He'd. Shocked myself have events are healthy on my life, to. Be, diagnosed, with the disease so, I knew very little about. I. Was. 44 years old. Thought. I'd be healthy until 70 80 plus without, a problem. Most. People see Parkinson's, come on over, a longer period of time and. There probably were symptoms. Of Parkinson's, but I didn't see them. Nine, years in it changes, in exchanges, on a weekly basis. Such. A multi-faceted. Disease. Initially. Like, anyone it's just shocked that, you've actually got a disease that's incurable and, it's going to compress continuously. Get worse so. For myself was about how to soak up as much information, as I could about the disease and then, what could I do myself. That would make tomorrow. A better day instead, of a worse one, I. Can. Except I've got the disease I don't, like it what, are we gonna do about it and for myself that was just crystal clear we're gonna find a cure. What. Happened what. Happened is this is just wearing. Off of one tablet and waiting for another one to kick in and it get a bit cold a little bit cold out when I actually went for a paddle so, this is yeah what. It looks like when. You're starting to wear off and. Normally, I wouldn't, experience, it all the time but, it's not unusual at the back end of the day it's, been I'm trying to get one tablet to work and another tablet is, being dissolved, in. The body itself and if I go and do something like exercise, it, makes the body and. Getting a bit cold this is what quite often happens, I'm comfortable, and you can make it stop for myself, with doing different things like if I get up and all if I lean on something, or. If I put my hands together or I move around a bit it'll. Stop. But. As soon as I go. And do something like typing, on a keyboard now, I'd be, what. Wouldn't tell the time. Okay, so you can see there since i sat back down again I need. To be able to do something lean on something do, something with my hands feel, the stop it. There's. Six tablets I need to start the day so, that was no movie at six o'clock when I get out of bed and then I need a tablet every two and a half hours to be able to maintain my dopamine, levels. You. Start to have we're off so for myself wearing, off means more tremor so, normally, my left hand side is my tremor side so. My left hands will start to shape, and. It'll get worse and worse. I. Was. Doing a planning, day speech and are doing the opening address for a team I got, up to speak and had notes in my hand a four pages and they started to shape and.

Half The heads gonna toughen up you must be nervous and. The other half the heads gone what the hell's happening, here I. Went. And saw care straightaway, and said look this, is what's happened during the day I was at the meeting and I remember, I remember sitting, there thinking why, is he walking around, the room why doesn't he just stand, in one spot and deliver the speech and at that time I didn't know what, was, happening and and still, even throughout the day he hadn't told me what had happened, you know what's playing I'm doing. And. That was Sunday and Monday, went, straight to the GP and he, went through a whole lot of different checks. He. Said Clyde I'm gonna have to refer you to a neurologist and I said I'll look doc just tell me what it is and he. Had, that look, written, right across his face he didn't want to tell me and at. That point in time he said look Clyde you look like you've got young onset, Parkinson's. Parkinson's. Mainly affects movement. Over. Time brain, cells progressively, failed to produce a chemical messenger called dopamine. I. Remember. Client came home and I looked at him when I said that everything. Good he went no I've, got Parkinson's and. Yeah. That was tough and. How. We get that through I suppose to cars to make sure we could stabilize, relationship-wise. As, no one expects, that when you're 44, been. Married for you know 14 ideas, and. Plenty, of things ahead of us I. Think. It was really tough to sort of you know to be finally, given that diagnosis. And to. Not sort of really understand, what. The future was going to be for us but, he was just so incredibly, positive he, was you, know he was just he. Had just accepted it and he had just moved on and, he. Was all about you know I can't change the, fact that I have Parkinson's, but you, know I can change what the future means and and, for. Him it was just he. Was he, just made it really easy for us. How. The time was to talk to the kids I'm. A great believer is you don't keep secrets you just get things out there and deal with it together. And. Everyone's got a different way of doing that for most people with Parkinson's, like to lock it up because they need to find out how they can work with it where I'd much rather get, it out there and find out how we can work with it we. Sat down with the kids and it was in this room that. Talked to the kids about what, what it was and, I said, to Joshua said made you okay and he said dad do you need a hand another nut ball okay at this point but only enough I do. So. Just remember dad telling everyone to come to the living room and normally it would be fine but had. More of a solemn food to it I guess and he just sat us all down and we're sitting on the floor and he was like I have. Parkinson's. Disease and for us at the time we were so young so, it, seemed like a big deal to us and I remember my first reaction was just like I thought. Dad wasn't gonna be here anymore so I thought he was gonna die. I know for, me I thought it was pretty big deal because that starts, gently sensitive to me so. Yeah, so. For me when he came and asked me I started, crying and I said to him I don't want you to go I can't. Live without you because, he's. My dad and he means so much to me so having him say that to me I thought, he wasn't gonna be here anymore. Didn't. Understand it too well at the time but, then it so just like started explaining it to us and then we understood. And I was, a bit, concerned because I dads, like that a bit, because I he'll say things aren't too much of a problem when it like they our of it. So. Just, said he went yep I'm okay, and that was means no I'm not okay and Phoebe, just went I don't know what's that know cuz I'm free, so. He told me about a week later and said, dad are you gonna die. And. That was her concern, because. Why would you think that and, she said all everyone that gets a disease dies, and, how, much longer would will you be here for so. He had to change that mindset and explained, to a while was about I feel, reassured because he, takes everything positive, any stride and just because he has shakes or his Parkinson's, and some days are bad it's he, always has a very positive outlook and he doesn't let. That affect his family life so. He's always there for us that's who, he is and he's personality. And it was always just so, willing to help everyone. Thirty. Years ago client, and his brother started a company that would become a world leader in robotics, and automation. When. Hyde was diagnosed with Parkinson's they, sold the business to a New Zealand company Scott.

Automation, Yes. If we can have a look at the BAC robot first and then. Maybe the actual mining, robot and, then we go back the blade stop. I've. Always been excited about automation. In general and the great believe you've got to love what you do if you don't go and find something else, so. This is a job to the mining, operation. So, it's only early days to do trials. For myself of loved doorways engineering. Loved. Having. People in the business and, really enjoy bringing young people on, finding. Out what their, passion is and how do you be able to grow them inside their business. So. The early days at RIT the company grew because of my technical ability, and, how to be able to work with their comments. Yes, a the operation this one's similar to what we did last time with Bayer cetera yeah so with dry ice and loading in this container that's it it's a big group recipe, so. It's always a little bit of stepping stones from, the early days where you had so much control because, your hands on all the time to, the time you had to take your hands off that actual, day to day and work on the business more to make it grow. Myself. I thought the best way for the business was to be able to have someone else acquire the business we. Had two companies, come to us at the one point in time and that, really made. My decision, at that point in time that we needed to progress that. We. Also detective, Fenton fingers. Are underneath the make and ensures that when we come in contact with a blade we, stop it under 9,000, to the second. So. Parkinson's, played a big role in that primarily. Because we wanted to ensure the, business had a life after Clyde. If Parkinson's. Was. More aggressive than what we thought it was going to be. So. Machinery, automation, and robotics and, blade stock was acquired for around between 20 million dollar mark, by Scott and we've, progressed, it since then so. We're we're up to commercially, with transports we announced to the stock, exchange last. Thursday. That we acquired, transporting. That. Was conditional, on trans bollocks getting a sign-off from their shareholders. Worth. Of the company's 160. 180. Odd million dollars that's. Significant, pride for myself I. Think, for an Australia New Zealand operation. It's fantastic, you know there's so many times it goes the other way around where people from internationally, are acquiring our businesses, and how do we take that technology, to the world. When. I was diagnosed. The. Day d-day, at the actual neurologist, so I promised myself two things before I put the key in the car so, I'm a great believer in strategy, but been great a believer you must take action to, back up that strategy.

Didn't. Have a great medical knowledge but I do have a good business knowledge it was a matter of how could I use what I already have and that's business sense to be able to make a foundation that could do the medical research that we needed to undertake, to. Be elif's low stop and cure the disease but, then the hard part began as to how are we going to do it Clyde, came home one day and he said I think I'm gonna start a foundation cuz there's just nothing like it in Australia, that's you, know just funding, research and I said I don't you, know I know and he said will you help me and I said I don't. Know anything about not-for-profit. I know anything about sort, of running a charity and he said well he. Said we'll just treat it like a business. So. They launched the shake it up Australia, foundation. If. We want to find a cure we need to do research if we need to do research we, need to find researchers, and funds to be able to make sure they can do what we need them to do what. Type, of opportunities. Do we have coming up so. The big one is the Neil Diamond tribute concert, that we've got coming up so. It's, just finalizing, the venue now I take it he's doing that because of, Neil Diamond, coming out and being diagnosed, with Parkinson's. Yes that's correct and he feels very passionate, about that because he's benefited. So much from doing these concerts, for 25 years so he really wants to give back in. Business you find people, that do things really well, and how do you be able to take on their learning so had a good look around not-for-profits. In Australia and found. Someone said I thought did a really good job but when you looked under the hall a bit more there, wasn't a lot of that money getting through to research, so. Here and we've got the Michael J Fox connection. In here ok great which, we needed so, we wanted to make sure that was put to bed first so he said we'll fund all the overheads, of the foundation, so, every dollar that comes in will, go out to research as a dollar we. Just wanted a way to be able to make a difference in research. Clyde. And his brother Greg put. Their hands in their pocket to cover any costs that means they pay my, salary everybody's. Salary who works with Foundation out of their own personal. Income, I mean, if that's not putting your money where your mouth is I don't know what is I think. He's a workaholic. Loves. These the work he's passionate about his work both his robotics, work and his and shake it up he's. Just really engaging it's just one of those decent, good Ozzie, blokes that's got a really big heart.

You, Know nothing's. Ever too difficult, for him he never says no. Life. Is full of positives, for, Clyde and you can't help but get on that train and go on that journey with you. It's. Gonna be frizzy. Incredibly. The Foundation has raised more than 10 million dollars and they're. Discovering, ways to identify the disease earlier good. Morning. Say, they could see your day and, I've got rich balance in with us he, ever met rich before but rich has been working really closely with, Simon, Lewis and myself on about linked clinical trials and the repurposing, of drugs and your, biomarker, side comes in in parallel with what we plan on doing there, so I was hoping you guys can show a little bit more about what you're doing in research, in the lab here today come, in thank, you. Come. On through. I had. A look around Australia, and New Zealand and found some really good researchers. But all of them underfunded, and if we funded them at a higher level how, do we ensure they were strategically. Directed. To. Make, the best use out of those funds the. Disease, itself, actually only affects really, particular, neurons even in the brain yes and Nick figured. Out that if he looked at only particular. Cells in the blood he, might get a better signature, and he's, been right and so he's focused now down on to, one, particular blood, cell and it's, giving us a tremendous. Amount of results it's possible, that we won't find biomarkers. Until we're actually treating. People and you, know finding, some therapies, that work you, may need to do them both at the same time I think that might help to move things forward I, think. We definitely have to do them both the, thing we know is that there's, already multiple, causes because there's multiple genetics. There's. Multiple, environmental. Factors that are known to actually cause the disease, there's. Not going to be a single, cause and, for each person it, may actually be quite particular the, work that we've been able to do since, Clyde.

Has Actually had the foundation we. Wouldn't been able to do before. We're. Repurposing, drugs for other conditions. And the, hope is that even, though the drug might have been designed for helping people's, diabetes. And fixing their sugar will, actually be looking to see whether or not in the drug actually helps the, parkinson's disease what. Are your thoughts on those biomarkers and, what. Are their ways forward from. What you're studying yeah, you're, right it is it is crucial because if. Parkinson's, is a loooong disease course and clinical, trials are only shot he's a dynamic, person, that pushes, you to make sure that you actually get, the outcomes, and that's, actually good. He has a active. Role. So, that if you if if, you if your ideas, are stupid he'll tell you if, you're not thinking about the right ideas, he'll tell you and so, that's actually been very effective so we've had over. The years there's been a really. Good balance to get to this stage where we, have. Very, promising, biomarkers. And in fact we're the only laboratory in the world at the moment that has that. Richard. Balancin is an American entrepreneur, he. Had personal, reasons for wanting to get involved with a shake it up foundation. If. I think back about what happened 15 months ago I was diagnosed, with the disease and. I was lost but not, an Australian, I didn't know the area very well did other people, so. I started looking it. Everybody kept from talking about you yeah, when I started, I easy guy there, was a whole, lot of nothing, it was yeah there's one person and a wife and, then we started to grow the foundation, but. We wanted to make sure the foundation was always getting the small level so you can get all the funds through to actually read medical research. I'm. Familiar with a lot of charities I've never seen wonderful foundations, or. Someone covers all the overhead, the. Biomarkers, stuff is the key to the whole story yes, you know the the drug trials are very important, they give us a lot of information but, if we can find a marker, you're ptosis how far the disease is gone that, we can start to in fact solve the problem intention, is to truly make a difference and. Just. Watch this space we will make a difference. We. Had a look around the world I suppose for, myself and found that who, was doing research and, how are they going about it and the Fox foundation, were the best at their doing the research anywhere, in the world. Michaels. 58. Now he was 29 when he was diagnosed, the, disease has progressed, it's. Such a big organization out. There this, year raised, over 100 million dollars just for research. Now. I find them I emailed, them it took us probably a month to be able to get the right people that work so one of their CEO, or one of their key researchers, so for going to go and fight see them make, sure we had the right people in the room that could make a difference to what we were wanting to so. Kaiser myself, jumped in the plane went, over there to their next board meeting and gave their presentation. Michael. Got up at the end of it and said Clyde I can see you've got purity, of motive you've got my vote so. I knew I had the other 49 boats in the room at the time. The. Fox foundation, now matches every dollar raised in Australia, doubling. The power of shake it up. And. We did a lot of do-it-yourself events. Internally. We were asking, people to come a lot on run a race for us run a Sydney Marathon duel 10k. Is 3, K events. And that, grew us in the first two to three years but we first started a run out of steam yeah people were been, to our events and they've got a lot of other good causes to be able to also, contribute, to so. That's when we started to spread it wider and how we got people that wanted to help us and how we could educate them, on how to be able to runner afternoon. Tea a golf day a tennis match a, running, thing yeah, in all the states around Australia, and it started, to get more and more traction for us and then, corporates, come on board and then high value donors have made a huge difference to us in the last five, years.

Today. Shake it up has hundreds of ambassadors, people, with a personal, connection to Parkinson's. Sydney. Kapil Phoebe and Robert garland are legends in the fashion trade and big, supporters. So. I want to have a bit of a chat about different, things but, things, like our ambassadors, which you are one of and, how do we actually get, the best use out of new events that we were coming up and your skill set you, know Robert from yourself having Parkinson's no thanks for all the things you do to put yourself out there it's not an easy thing it, comes, naturally if I were to say okay. You. Know what's been so amazing, is some of the responses, that we've had you know I'm quite sort. Of social, media savvy and some of the responses, that we've had from social. Media is people have learnt so much through some of the posts, and stuff like that I, was very keen on taking. The stigma out, out of Parkinson's, I'd seen, sufferers, just go, into a ball and shrink, away and, to me that's not acceptable so, I. Thought. This gives us an opportunity to have a voice okay, so this is some of the this, is one of our ranges peri that we've sold for summer it's really beautiful, boho it, sells really well because it's not it. Was a no-brainer for us that's been a big part of our lives since we've, actually come. On board the. Hope remains, a cure how, far off that is who knows but. So. In the meantime it's a matter of healthy. Fundraising, to just. To fund the research and, and, find that cure it'd, be great to have both you guys involved if, you are professionally, and also on the Parkinson, side say if I can keep in touch with you and rich and. Lovely get involved you know we we're. Very passionate about this so absolutely, we're really look forward to hearing more okay. Good. To see you. Parkinson. Side is one of those real challenges, mentally because, I've always been of the belief that look you don't have to be in a great spot that you need to be always going, towards a good spot a. Lot. Of things have changed and. A lot of things have stayed the same so, we need to beacon cognizant. That the disease does progress, if, I myself have been really fortunate its progressed quite slowly but, it still affects my day-to-day life drastically. Busy. Just. Had six weeks off. No. Major changes, still, done my exercise in the morning same. Medication, medication, has. Definitely got more of a issue with food and when I take medication so, I just need to be a little bit more careful there than what I was in the past play draw feel good excellent, you, look good lead thank, you. Clyde's. Neurologist. Dominic Rowe is also, involved with research for the foundation. There. Are some people with Parkinson's, disease who, move very very slowly and respond, to medicine, and they stay, very. Stable for, many many years and, they're. A small minority of people with Parkinson's disease who. Don't respond, well to therapy, and who, progress quite rapidly now if it's the same disease. There. Has to be a biological explanation, for, that so understanding. That biology, is gonna be critical to, developing, therapies, that slow and stop Parkinson's, disease and again. Those therapies, may even be under our nose because. In. The last ten years there's, been an, explosion of, research in two different areas of science the. Especially. Oncology, and metabolic. Syndromes, where we're getting, to pull apart the basic. Mechanisms, within the cells that may well have relevance, for Parkinson's. Disease and other neurodegenerative, diseases. Clyde. I've had the privilege of looking after for, quite some time now and he. Tells me what's going on and so, very much I consider. My, care. Of Clyde is that he's the captain of the ship and, I'm. The navigator. So. He hasn't charted, these waters, himself, before. I, have. And. Hopefully. With my skill we can plot. A path that keeps him well for decades, to come. Some. Of them were cool, I've. Got probably three. Real lives I'm alive it's family and friends, enjoyment. Of automation, in robotics, and to be able to find a cure for Parkinson's. For. Me that's an after reason to get out of bed with a smile on my face every day. Last. Six, years really, has seen the foundation. Really start to pick up speed now we are funding, bigger, research, dollars, more. Areas. That will make a difference to slow stop and cure the disease. The. Research is molding pillar we, don't need just one thing to be able to work if something, doesn't work it's not the end of the world and.

We Don't expect it all to work. But. You've need to keep positive to be able to make a difference in your life. But. It's about how to be able to make the best out of each day. Positive. Focus comes from a great grounding and you need a great grounding, with family, people. Within your life and cads gives me that. The. Kids are a big part of what we do and. It's a big part of our security net. And. If you've got that it's easy to be able to look good in other areas. Parkinson's. Is part of my life but it's not my whole life business-wise. We're still doing what we were doing but in a different way so. There's a whole lot of good things in anyone's, life and in mine I'm pretty, blessed in a lot of ways and we need to make sure we don't lose sight of that. Attitude. Was made with funding from New Zealand on, air.

2018-08-20 02:56

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