Engaging Conversations | Inspiring Dialogue, Empowering Communities
Welcome to Engaging Conversations, the podcast that connects you with the pulse of our local communities. Hosted by Leon Goltsman, Co-Founder of Ecolibrium Headquarters, each episode invites you on an inspiring journey into the stories that shape and uplift our neighbourhoods.
From visionary leaders and industry experts to everyday heroes making a difference, Engaging Conversations offers an exclusive look into our society's diverse and dynamic fabric. This podcast is your gateway to broadening your perspective, building meaningful connections, and being inspired.
Tune in, join the conversation, and discover the people, places, and purpose driving positive change.
Engaging Conversations | Inspiring Dialogue, Empowering Communities
#3 - Transforming Parkinson's Care: Advocacy, Empathy, and Community Action
What if you could change the course of Parkinson's disease for thousands of people? Join us on a compelling journey with Mary Kay Walker, CEO of Parkinson's NSW, and Rachel Tanny, Chair of the Board. You'll hear their deeply personal stories, from Mary Kay's pivot from corporate life driven by her advocacy for the ageing brain to Rachel's dedication fueled by her aged-care experiences. They highlight the critical need for better healthcare services and the urgent political action to address this rapidly growing neurological condition.
Our dialogue dives into the mission at the heart of Parkinson's NSW. Mary Kay and Rachel open up about their daily operations, supported by vital services like an 1800 info line and counselling. They are all driven by a budget that relies heavily on community donations. Learn about the impactful work of their community nursing and support groups and their push for state and federal funding to ensure sustainable support. We highlight real-life success stories demonstrating their services' life-saving potential and strategic priorities to meet the needs of the rising number of people with Parkinson's.
In this candid episode, we also explore the unseen aspects of Parkinson's disease, from depression and mood swings to its effect on those who are living with it. The conversation touches on the significance of empathy and communication in building trust in vulnerable communities. Discover how businesses and community organisations can partner with Parkinson's NSW to create a more supportive environment.
As we wrap up, the emphasis is placed on the urgent need for increased governmental involvement and advocacy to improve healthcare interventions, prevent unnecessary suffering and enhance the quality of life for those affected by Parkinson's. Tune in and discover how to be part of this crucial conversation.
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To contact Parkinson's NSW, call 1800 644 189 or visit their website at www.parkinsonsnsw.org.au
Thank you for listening!
Good morning, good afternoon or good evening, wherever you are, and welcome back to Engaging Conversations, the show where we explore the heart of our communities and connect with real people making a difference, shining a light on the stories that truly define our neighbourhoods. I'm your host, leon Golsman, co-founder of Ecolibrium Headquarters, and today's episode is proudly brought to you by Lake Mac Business and Focus Because, let's be honest, we all want to advocate for those who are helping make this world a better place. Right Now. I have something really special for you. Today we are joined by two exceptional leaders who are making a profound impact in the world of healthcare. With us are Mary Kay Walker, CEO of Parkinson's New South Wales, and Rachel Tanney, chair of the Board. I had the privilege of spending the morning with these incredible women, and what I've learned from them has been nothing short of eye-opening. Trust me, by the time you hear what they've got to say, you'll be writing letters to your local members urging them to do more. You see, I have a close friend who's been battling Parkinson's, and it took over five years just to get his diagnosis. And that's not an isolated story. It's a reality for so many.
Leon Goltsman:Parkinson's is now the fastest growing neurological condition in the world, yet it's still flying under the radar when it comes to the health agenda. How is that possible? Why isn't it a priority? Here in New South Wales? We're in the midst of local government elections and soon enough we'll have federal elections on the horizon. Politicians are out there making promises, slapping their faces on posters and throwing around buzzwords like it's a competition. Whether it's local, state or federal, we need to make sure that our community is truly being heard. Our government should be advocating for better healthcare services, especially when we know that misdiagnosis of Parkinson's is one of the biggest reasons for hospital bed blockages in the country. So today we're diving deep into this issue, and I'm honoured to introduce you to these two remarkable leaders. Their insights will inspire you and, most importantly, leave you with a sense of urgency to take action. So, without further ado, let's begin.
Mary Kay Walker:My name is Mary Kay Walker and I am the CEO of Parkinson's New South Wales. I have been with Parkinson's New South Wales for six years CEO for the past five, acting for several months before that but want to share that my journey with Parkinson's has been across a number of years, so I'm very well au fait with the community and the mission and the values of the organisation. I have a background in corporate where about 10 years ago I had an epiphany and decided to go back to university and I did a psychology degree. My interest was the ageing brain, so it was very serendipitous that I've ended up at Parkinson's New South Wales.
Leon Goltsman:And how about you, Rachel?
Rachel Tanny:I'm Rachel Tanny and I'm the chair of the board of Parkinson's New South Wales. I've been on the board for about nearly three years now, been the chair for nearly two years, and I joined the board here when I was a CEO in an aged care organization and was really interested in being involved as a non-executive director because as a CEO in aged care, I went and studied governance and I got a diploma of business governance and that highlighted to me all of the work that a board does and I was really interested to have that experience as a CEO and be able to view things from both lenses, which is something I think is a really valuable experience for all CEOs, and have since gone and done the company director's course and I just love being on the board here, so Thanks, Rachel, and you're certainly very passionate about what you do.
Leon Goltsman:The next question I might direct to Mary Kay, as CEO could you please share Parkinson's New South Wales core mission and also explain how it shapes your daily operations?
Mary Kay Walker:Fundamentally Parkinson's. New South Wales. Here is for the Parkinson's community. Our vision and mission is to ensure that they're empowered every step of the way, and it's about quality of life. And in order for that to happen every day, the individuals employed by this not-for-profit have as their focus number one the community, our Parkinson's community, whether it's answering phones, the info line, the 1800 number where people can ring in and ask whatever questions they have personally about their condition, if they have Parkinson's, or if they're a carer seeking advice or clarification. But, more importantly, it is an avenue into other supports and services that we provide. We provide counselling, but it's more generally the information and education across the board, whatever it is, whatever question they have. So we are here to support those suffering personally with the condition, but the carers and the family and everybody associated and touched by this insidious condition.
Leon Goltsman:And it is an insidious condition. But with just 3% of your funding coming from government grants, how does Parkinson's New South Wales sustain its vital services?
Mary Kay Walker:So, with 3% of our funding coming from state government, that means 97% is coming from the generosity of our donors, and that is a really unstable cash flow. We are dependent, as I said, on the generosity of the community and we never know what's coming our way, and that does impact our daily services and our daily life here, which is why we are very much advocating towards the state and federal government for more funding to enable us to do more for our community and for it to be consistent and stable.
Leon Goltsman:So I can see why advocacy in the government and healthcare sectors is a significant part of your work. Mary Kay, can you also elaborate on the current challenges and successes in these areas?
Mary Kay Walker:the most significant part of my job at the moment is the advocacy towards government and health care. Parkinson's is the fastest growing neurological condition in the world and it's just not on the health agenda at the moment. We need to be the loud voice at both the state and federal level to get it on the health agenda. It is the second fastest growing neurological disease after Alzheimer's. It's a health condition that has to now start being on the health agenda, and that's what we're here for. It's what I do every day. I will talk to whomever to get our message across that it is an insidious condition, an insidious disease. It has such an impact on not only the person but the family and the carers and we need to be, as an organisation, doing more and we need to get more funding from the state and federal governments.
Leon Goltsman:But regardless, there's only so much you could do. If the government's not listening, they're not listening, and that is why we need to get your message across and highlight those very important issues that you have raised. I might direct the next question to Rachel, and I'm aware that Parkinson's New South Wales offers essential services. Can you also share or highlight some of these services and the impact it has on individuals and their families?
Rachel Tanny:So Parkinson's New South Wales offers a suite of supportive services for people living with Parkinson's across the state and in some cases actually even beyond. Those include our 1-800-INFO line, community nursing and support groups based across the state, of which we have about 70 currently. They have a massive impact on people's lives and, just by way of example, recently we had a gentleman with Parkinson's whose partner called the info line because he had felt very faint and when she went to see how he was doing, his blood pressure had spiked and his heart rate was up and he wasn't feeling well. And they were quite anxious and called the info line to find out whether or not they should be going to the emergency department. And because our info line is staffed with specialist nurses who know what they're talking about, the nurse on the other end of the line stayed really calm, calmed them both down and actually got him to sit down, have a drink of water and asked the right questions.
Rachel Tanny:And it turned out that this gentleman had been exerting himself somewhat and of course when you exercise your blood pressure goes up, your heart rate goes up.
Rachel Tanny:But because he's a vulnerable person with Parkinson's and because he's on all these medications, he didn't know that that was what was causing it. So, after relaxing for a few minutes, they did all the tests again and his blood pressure was coming down and his heart rate was back to normal. And that phone call, which took maybe 15 or 20 minutes of our nurse's time, saved him a trip to the hospital, saved the community from having a bed taken up in the hospital. And, of course, when people with Parkinson's go to the hospital, quite often they're admitted and they end up staying several days, and each day's stay in the hospital can cost anywhere between $2,000 and $4,000. So you can imagine how much money this has saved the state by this one very short phone call to our info line, where a nurse didn't even need to physically be there to see him. It was just her being able to provide that support, and that could have fundamentally impacted not just every taxpayer's budget but also this man's life and his partner's life.
Leon Goltsman:So this is more than just convenience. It's also saving money and possibly people's lives. Given the projected increase in the number of people living with Parkinson's, how is Parkinson's New South Wales preparing to meet this growing need?
Rachel Tanny:So, given the projected increase in the number of people living with Parkinson's disease and the fact that it is the fastest growing neurological disease in the world, it's really critical that we future-proof our organization.
Rachel Tanny:So in the past 18 months we have changed our strategic priorities as an organization to really focus on growing collaboration and increasing our advocacy efforts. It is not sustainable in the future for us to continue to provide these services that actually save the New South Wales government many, many thousands of dollars I mean well, in excess of millions of dollars, I would say every year, just by keeping people with Parkinson's out of the emergency departments and out of hospital beds without government support. So the way that we're future-proofing the organization is to let people in government and the broader community know about the work that we do, a, so that more people can access our services and, b, so that we can actually grow and continue to provide those services and provide them to even more people. With about 70,000 people in New South Wales with Parkinson's disease and that figure is just the people with Parkinson's. That doesn't include the people who are impacted directly the direct family, the carers, the friends, the community it's really important that we scale up our services and future-proof them.
Mary Kay Walker:I'd just like to add a little bit more to Rachel's answer to that question. How we are preparing is absolutely, as Rachel said, advocacy and collaboration at that higher level. But within the internal team we're really getting back to our knitting. We're not going down rabbit holes of exotic services or anything like that. We're actually getting back to what we do well and that is the information and education through our information line, but also our education seminars that we are holding around the state to consumers and clinicians. We're also getting ready to ensure that our services are top-notch such that when those phones start ringing and we do hope they start ringing we hope that everybody that gets a diagnosis of Parkinson's rings our information line to get information and be linked in with our support groups and linked in with our services and get the services that they need. We're getting the platform ready to expand.
Leon Goltsman:Expanding the current platform does sound exciting. What are the most urgent needs of Parkinson's New South Wales right now, however, and also how can our community members or potential donors make a difference? I'm not sure who wants to answer this one.
Mary Kay Walker:Leon, I can answer that question. Fundamentally, it's money, and how can our donors make a difference? Well, giving us that money to ensure that our services can continue and ensure that Parkinson's New South Wales is here for today and tomorrow and the future for all those suffering with the condition and their family members that are impacted by this growing disease.
Rachel Tanny:It's also important for community members who maybe don't have the financial ability to support us with money to advocate on our behalf. They can write to their state representatives and say this should be a priority for government for funding, because if the politicians hear from their constituents that this is a disease that's impacting their lives and the lives of their friends and loved ones, they will be more likely to keep that on their minds when they are setting the agenda and the budgets in the future.
Leon Goltsman:Yep, the squeaky hinge gets the oil. Look, you've both been deeply involved in Parkinson's New South Wales. What drives your passion for this cause and how has your journey shaped your approach to leadership?
Rachel Tanny:Yeah, so we've both been involved in Parkinson's for quite a long time and I think for both of us it's been a very personal journey, wouldn't you agree? Oh?
Mary Kay Walker:absolutely, and it's probably even more personal for me of us. It's been a very personal journey, wouldn't you agree? Absolutely. And it's probably even more personal for me, rachel, given that I have had my mother-in-law pass with Parkinson's. Her anniversary was only a week or two ago second year anniversary since her passing but coincidentally, virtually the same week that I started working at Parkinson's New South Wales, my brother-in-law was diagnosed with Parkinson's.
Mary Kay Walker:So from a very personal perspective, I understand certainly what the carers and families are going through. So through that connection, my passion is to absolutely ensure that people suffering from this condition get the best access to information and education, but also the right treatments. So one of the focuses of the organisation will be to advocate on behalf of better treatments and also education. It's the regional GPs that are the first that are necessarily likely to pick up on the symptoms, and there's 50 symptoms with Parkinson's and everybody's combination is different. If we can educate the GPs to spot the signs earlier, it's better for someone to get an earlier diagnosis. So one of the frustrating things is the journey to diagnosis. Very frustrating, but what drives me, as I said, the passion that I have because it is a family connection, but the way that it has shaped my leadership is that I lead from the front. Every day I am out there advocating. I will speak to anyone. I'll go to anywhere that needs to know and understand about Parkinson's and I bring the team on that journey.
Leon Goltsman:And Rachel.
Rachel Tanny:Yeah, I think my journey has been a little bit different because I don't actually have any family history of Parkinson's, although, having learned so much and been so involved, it's one of those situations where you really look at it and think, there, but for the grace of God, go I, because it is so prevalent and it is everywhere.
Rachel Tanny:And when I was working in aged care, one of my close friends, her father, Rabbi Fox, actually had Parkinson's and I was helping support him through that journey. And one of the things that really struck me a side from the fact that it was somebody that I really cared about, who I was watching experience this was that I was working in aged care and I saw older people with a variety of different experiences and a variety of different conditions. But what I noticed was, while things like dementia were being spoken about, a lot Parkinson's was not discussed. And when I saw how impacted he was and his whole family, family and the whole community because Rabbi Fox was very beloved by the Sydney Jewish community but across the spectrum not just those people who he directly ministered to, but the whole community adored him. He was just a lovely man and it really inspired me to want to do something more to bring this condition to light and to share the information about it with anybody who I possibly could.
Leon Goltsman:Yeah, I knew Rabbi Fox. I wasn't aware he had Parkinson's. I knew he had dementia, I just wasn't aware that he was suffering. So it just goes to show. If it doesn't get discussed, look. If it doesn't get discussed, look. Question for Mary Kay If somebody was hoping to get some support from regional parts of New South Wales or Australia, what services are there available for them?
Mary Kay Walker:So for those people who are living regionally and rurally, the access to certainly our services are via the 1800 number. Doesn't matter where you are, whether it's Walgett or Waverley, you can access our information and education. We also try and get our education out to the regions. We actually go to the regions like the. We can go to the Lake Macquarie region. We can go to the regions like the. We can go to the lake macquarie region. We can go to the waga region. We can hunter valley. We had, we're having education seminars this month in coffs harbour. We've had them in narrabri recently. So we we are here for the state, for the community. We absolutely know that the metropolitan cities get more of the access to health care and doctors etc. But anyone can ring our 1-800 number.
Rachel Tanny:And we also have our support groups based across the state. With 70 support groups, there is not a region across New South Wales does not have relatively easy access to a support group, and that does include the Lake Macquarie region. That does include Hunter Valley. So people with Parkinson's or people who are caring for people with Parkinson's have the ability to actually get that in-person support from other people who deeply empathise with them.
Mary Kay Walker:And Rachel, it's not only 70 physical support groups around the state. For those that are in really, really remote regional areas, there are online. We have about half a dozen online support groups so that we do try and get to everybody wherever you are in this rather large and geographically sparse state yeah, I think the really important thing to remember here is you're not alone.
Rachel Tanny:Nobody with Parkinson's, nobody caring for somebody with Parkinson's, is ever alone or ever needs to be alone, because Parkinson's New South Wales is here for you.
Leon Goltsman:And that is really, really good to know. I'm sure many people are going to be comforted hearing that Well done. Now you're both incredibly busy and I know that sometimes it's just well. Sometimes it's always important to bring balance, and one of the questions I like to ask is, yeah, stepping away from the hustle and bustle and doing things that bring you joy. The question is, how do you find balance while leading such a demanding, uh, and a needy organization?
Mary Kay Walker:I suppose certainly leading parkinson's new south wales. For me is a 24 7 operation I, if I'm not in the office, I might be in the car, and I've coined a new phrase WFC working from car as opposed to WFH. Everyone is on the Tom Toms of a morning saying whether they're working from home or not. I do a lot of calls in the car, but what I really need to do is get out to a little property we have outside Mudgee and it's really very cathartic for me to sit on the ride on lawnmower and just mow acres of grass. It gives me time to sit there and contemplate life, the world and everything, but also satisfying in that you're achieving some cutting of the grass, but pondering and strategically planning what's going to happen for the next week. And yes, we also have bees. So we have bees, and if anyone's ever kept bees, you understand and appreciate that it's a lot of hard work and getting stung is not fun.
Leon Goltsman:No, I agree, no one wants to get stung, but the rewards of looking after your bees having healthy bees is. Every now and then you get to have honey, and thank you, by the way, for that jar of bloodwood honey. I am going to have some over the next couple of days with my morning toast. Rachel, your voluntary work at Parkinson's New South Wales is clearly a labor of love. How do you stay motivated and what keeps you going through the challenging times?
Rachel Tanny:So our board at Parkinson's New South Wales is a volunteer board, so I am a volunteer chair and it can be really challenging at times to chair any board but in particular, to chair the board of an organization that is struggling to gain some traction with the government and the community to get our message out.
Rachel Tanny:It has been quite challenging at times and for me it really is a labor of love that is the best way to describe it. I care so deeply about the people that we help and for me, I don't sleep well at night if I don't feel like I'm making the world a better place and this is something that I can do to give back to my community not just my local neighbors who live on my block or in my building, but across the state and I feel like as a person I have so much to give and I want to give that support and that help to people around New South Wales and the most vulnerable people of all. You know, I've been told I have a very loud voice sometimes and I can speak up and I'm a pretty outspoken personality and I like to use that as my secret superpower to speak up for people who really need that.
Leon Goltsman:That's something that we share in common that we're actually giving people a stronger voice, and it seems like one of the benefits of advocating for our community. Irrespective of what we're advocating, we're in it together, aren't we?
Mary Kay Walker:That's absolutely right and our tagline. If you look around the room, leon is In this Together Parkinson's, new South Wales. You do so much more as a combined group the leverage you know. We are so much stronger and bigger and louder than the sum of the individual parts. We have to collaborate. We all share the same vision and the same purpose and can do just so much more together.
Leon Goltsman:I wholeheartedly agree. Very wise words. Now question to you both what do you hope listeners will take away from this conversation about the realities of living with Parkinson's and the support Parkinson's New South Wales provides?
Mary Kay Walker:I can answer that, leon. The fundamental takeaway from this conversation is anyone with Parkinson's, either the carer or the person with Parkinson's Parkinson's New South Wales, is in this together with you. We are here for answering questions, information, education, answering questions, information, education services. But we are here with you and for you.
Rachel Tanny:And if I could just add to that, I think one of the key things that I would like listeners to learn about Parkinson's is just how many symptoms there actually are. So I think when a lot of people think about Parkinson's, they imagine the tremors or maybe the difficulty walking, the stiffness of gait, but there's so much more that people don't realize. So people with Parkinson's may be suffering from depression, they may have mood swings and personality changes, nightmares, digestive difficulties, difficulty swallowing the list goes on and on. And so if you do know someone with Parkinson's, or if you see someone with Parkinson's, it's not just that trembling that might make it difficult for them to have their cup of tea with you. It is so much more than that and it impacts their whole life, and that's something that I think a lot of people aren't aware of and really need to know.
Leon Goltsman:Well, one thing I've learned already is that, as neurological disorders become the leading cause of disabilities worldwide, it's certainly I see it as the most significant challenges ahead for organisations like Parkinson's New South Wales. What are your thoughts?
Mary Kay Walker:as neurological disorders become the leading cause of disability worldwide. The challenge for Parkinson's New South Wales is to be here for that cohort, for the burgeoning cohort of the person with the condition. But the carers, the families, the supporters, we need to be here. So we need government to step in and help us help the community.
Leon Goltsman:And working with communities. It's all about building trust and empathy, and that is crucial when working with vulnerable members. Are you able to share some strategies for connecting meaningfully with staff and all those you serve?
Rachel Tanny:So if I could answer that building trust and empathy is really crucial when working with vulnerable communities and I think, as a board chair and a non-executive director, quite a lot of the time in organizations the board is seen as distant, sometimes sitting on their pedestal, and occasionally disconnected.
Rachel Tanny:So all of our directors are expected to keep in touch with the coalface. So we do have two of our directors are people with Parkinson's which maybe a lot of listeners won't be aware of, so that we do have that lived experience voice on our board. But also we as directors we show up in the office, we talk to all of the staff, we go along to support groups and listen to the people with Parkinson's across the state so that we can keep in touch. And by being there, showing up and listening, that is the best way to establish trust and rapport and show that we really are invested and we really do care. Because we absolutely do care, because we absolutely do and I'm sure Mary Kay has more to say about that about the staff and operational side of things as well, certainly from a staff and operational perspective.
Mary Kay Walker:Everyone is here for the same reason. We're all passionate about Parkinson's and our community I'm not alone in being the only one that has a family member with Parkinson's and it is that inherent understanding of the condition that shines through and that's how we can build the trust and the empathy, because we do understand well, it certainly takes special people to do what you're doing, and um, and people who are good communicators.
Leon Goltsman:So, um, how important is good communication to you?
Mary Kay Walker:I think that a theme that's come through in in this chat today has been the importance of communication and conversations. I think having and and that's the core of advocacy and collaboration is communication and conversations. I always say, whether, whether it's a difficult, difficult conversation, they're just conversations. You have to remember that the other person across the table or the other end of the phone, it's just a conversation, and communication is so critical for building trust, for progressing anything within the organisation, for providing services. It all comes down to communication and we can all do that. Let's talk more.
Rachel Tanny:I like to try to approach any conversations with humility and curiosity and I try to reserve my judgment on that conversation, because people can have different views and different experiences, but your experiences and your views are no more nor no less valuable than theirs. Everybody's experiences and views are valid in their own ways.
Leon Goltsman:And I suppose that's one of the things that makes life so interesting. And speaking of interesting, how can businesses and community organisations collaborate with Parkinson's New South Wales to create a more supportive environment for people living with Parkinson's?
Mary Kay Walker:Business and community organisations can collaborate with Parkinson's New South Wales very readily and openly Contact us. I'm always saying that Parkinson's New South Wales is open for business, whoever calls us. Whatever you ask of us, we're happy to answer and to pitch in and help. It's only through education and information will people truly understand what it's like to be somebody with Parkinson's. As Rachel mentioned a few minutes ago, it's all the symptoms that you don't see that impacts the daily life of someone with Parkinson's. We all see the tremor and not everyone has a tremor. Only 30% of Parkinson's people have a tremor. The rigidity, the facial masking, the freezing of gait these are all physical evidence of someone with Parkinson's.
Leon Goltsman:And Mary Kay, what is freezing of gait?
Mary Kay Walker:For someone who the freezing of gait is someone with Parkinson's suddenly comes across a carpet to wood, a change in what they're walking on, from carpet to any kind of other change in Change in surface, thank you, change in surface they stop and it's like their brain can't comprehend and they freeze and can't move forward. And there are tips and tricks to get them moving again and a lot of that is to do with starting to rhythmically move their feet on the spot to get their legs moving again so that they can continue to walk. And it's very debilitating for someone who is just walking and suddenly there might be a crack in the cement or you are stepping in from outside onto carpet, you get stuck in the doorway and it is very debilitating for someone with Parkinson's. But this is the education that we need to be doing for community organizations and businesses and people generally, that this is what happens with someone with Parkinson's. We have to educate more. We have to let people know how they can help someone with Parkinson's.
Leon Goltsman:So what you're saying is very fascinating, because the first time I really met somebody with Parkinson's was a really good friend of mine who I've done karate with. He's still a very good friend of mine now, but his condition sometimes has been really. I mean, in training we used to do karate together and at one stage he thought he just had a bruise and that was on on. I can't remember if it was his left shoulder or right shoulder, but over the years it started to get worse and worse. I mean he's got fully blown parkinson's and I still, to say the least, I'm learning about it. If there are other people like myself who don't have parkinson's but really want to learn more about that, not just so they can understand better themselves, but so they can actually help others who have it what would you recommend they do? Go on your website. What would you recommend for them?
Mary Kay Walker:Look. The best access to information is obviously our website, which is wwwparkinsonsnsworgau. There is a wealth of information on our website fact sheets but you'll also learn about seminars, upcoming seminars that we might be having in your neighbourhood. So website, but also our 1800-800 number, 1-800-644-189. Please look at our website, ring the 1-800 number, educate yourself about Parkinson's. We have online education modules. There's a Parkinson's 101, certainly on the website as well. You can put down your name and address and get on our e-subscription and get our newsletters and just keep in touch with us and understand what's going on locally If we're coming to your area, as I said, to have education seminars. But wealth of information on our website and please call the 1-800 number.
Rachel Tanny:Yeah, so you don't need to be a member of the organization to subscribe or to access any of our services or our benefits. All of our services are accessible for everybody across the state and, of course, anybody, whether you have Parkinson's or not or you're just curious. You absolutely can subscribe for free.
Leon Goltsman:So if someone's thinking of getting involved regardless whether it's volunteering, fundraising or advocacy where would they start? What advice would you give them?
Mary Kay Walker:If anyone is interested in getting involved, whether it's volunteering, fundraising, advocacy, please call us 1-800-644-189 or go onto our website and drop us an email.
Leon Goltsman:Okay, so the phone number is 1-800-644-189. 1-800-644-189, parkinsonsnewsouthwalesorgau, but I will put that in the show notes. What I do want to ask you, though, is if there's one message you could leave you want to leave our listeners with today about Parkinson's, New South Wales and the great work that you're doing. What would it be?
Mary Kay Walker:The one thing that we would to take away from today is that Parkinson's disease the incidence of it is growing Parkinson's New South Wales is here every step of the way for the person with Parkinson's, their carers, their families, and we really need the state government to take the condition and our organisation seriously and give us more funding so that we can be here tomorrow and into the future to contend with the growing number of people.
Leon Goltsman:And for our MPs and elected representatives who are listening to this or who might be listening to this, probably will be listening to this what can they do?
Mary Kay Walker:Certainly that we're probably a couple of years away from the state government elections, but what people and MPs can do now is really understand the growing incidence of Parkinson's and understand that each of them will have constituents impacted. Absolutely every electorate across this state will have people with Parkinson's. They will be impacted by this, and we encourage our Parkinson's people across the state to write to their local members, because it's regional and rural areas that lack services. That is where Parkinson's New South Wales steps in with our 1800 number that people can contact us wherever they are, and certainly Rachel referred to this earlier. We are here for people with Parkinson's every step of the way, but MPs have to understand they have constituents that do have Parkinson's and we would love to have more funding for us to do more for the community.
Rachel Tanny:Yeah, and if I could just add, as to the people living in those regional and rural areas who do have Parkinson's, what most people don't realize is there is actually. There are amazing interventions and treatments for Parkinson's today, and it is very rare that somebody needs to die from Parkinson's. Most people die with Parkinson's, not from Parkinson's. But when we're looking at our regional and rural areas in New South Wales, we have a high incidence of people dying from Parkinson's. These are entirely preventable deaths. These are losses to our communities, these are losses to our families. This causes grief, it causes trauma to our economy and it's unnecessary. It's entirely unnecessary.
Rachel Tanny:But Parkinson's is not a priority in our government and so it's under-resourced. And we have GPs in regional and rural areas that don't understand Parkinson's well enough to know what they're looking at. There are doctors in hospitals who will have a Parkinson's patient come in and not believe that they actually have Parkinson's because they don't have a tremor and they'll take them off their Parkinson's medications. And it is a huge problem and it can dramatically impact people's lives. It can impact their quality of life and their length of life, and that is not necessary and that is why we need our MPs to step up, not in the future, but today, right now, our MPs can start advocating on our behalf so that the New South Wales government can support our organisation to be able to deliver more education to these rural GPs and hospitals so that they can support people, so they can continue to live enriched, fulfilling, contributing lives in our society across New South Wales for many, many years to come.
Mary Kay Walker:And if I can just follow on from what Rachel just said, the biggest constituent of bed blockers in New South Wales are people with Parkinson's because for the very reason that they have had a fall, they turn up in hospital and what is the first thing that happens?
Mary Kay Walker:They don't get their Parkinson's meds. The one thing across the board that we say is meds on time. Every time we talk about Parkinson's on and being off. If you're on, you're on your meds on time and we could be sitting across from a person with Parkinson's and you wouldn't know that they had Parkinson's. You take them off their medication, they could be comatosed, they could be frozen in the bed and it is a big problem for New South Wales health. They get taken off their meds and they become bed blockers. And that is the number one issue for New South Wales health at the moment is people getting into hospital and not being able to get out. If it is a simple matter of education and understanding that someone with Parkinson's needs to have those meds on time every time, big impact to the bottom line of New South Wales health.
Leon Goltsman:And I hope the MPs who are listening to this are taking note, because more does need to get done. And I was just thinking about my friend who I mentioned earlier, with Parkinson's. He went shopping once and he got stopped by security guards. They thought he was shoplifting because he was acting a little bit strange, and so they not only detained him, they took his bag off him and they laid out all his personal items for all to see. And because he's just come from the gym, he had his underpants towel. I mean it was embarrassing and I felt for him. Is this the type of thing that happens often?
Mary Kay Walker:Yeah, One of the biggest issues that confronts someone, particularly a young, onset, newly diagnosed person with Parkinson's, is they try and hide it. They try and hide it because of the stigma. And I can give you an example of a gentleman who was young, onset Parkinson's, who was a security guard. So you can imagine this young fellow, fairly hefty, strong gentleman, was trying to buy a bottle of wine from a liquor store Because of his Parkinson's. The people thought he was drunk. This gentleman ended up getting tasered just for going into wanting to buy a bottle of wine.
Rachel Tanny:I think that's an absolutely heartbreaking story, but even in the less extreme situations, it can be really confronting and humiliating for people with Parkinson's, Even just in the instance that Mary Kay was describing earlier about somebody freezing. If somebody freezes in the front door of a shop and they're blocking the doorway and your reaction is to shove them, they could fall. They could very easily get hurt. We need to look out for each other and you know, especially if we're looking at small businesses and local communities, that's exactly what we want to cultivate in our local communities.
Rachel Tanny:So, local businesses and local individuals if you see someone in that kind of a situation you don't understand or there may be a bit shaky, don't jump to those conclusions. Don't assume that they're drunk. Don't assume that they're just stopping there because they want to cause you an inconvenience. Try to view things with a bit more empathy and find out if they might actually need some help or need some support. And, of course, if you don't know what to do, feel free to call our info line or direct them to call our info line and get the support and access support groups.
Leon Goltsman:Rachel, mary Kay, thank you so much. I really, really enjoyed this interview, catching up, and, thank you, I have literally come out of this learning so much more than before I came in, and I'm certain that our listeners are going to feel the same way. Thank you so much.
Rachel Tanny:Thank you so much, leon, for having us on this podcast. I think it's incredible what you're doing for the community bringing local businesses together and helping to share this information with everybody out there, not just for Parkinson's, but for all of the different podcasts that you're doing and all of the different people that you're speaking to. I just find it fascinating and I think it's an incredible podcast. I hope more people listen.
Mary Kay Walker:I'd just like to reiterate what Rachel just said, and I think it's a it's a wonderful vehicle to enlighten local businesses and communities, but it also has given us an opportunity for this time, to educate the listeners about Parkinson's just that little bit more, so that there is more empathy and understanding. So thank you so much for allowing us to share our knowledge with you and your listeners.
Leon Goltsman:Thank you, and I'm proud to say we're in this together. Thank you for joining us on today's episode of Engaging Conversations. I hope our discussion with Mary Kay Walker and Rachel Tanny left you with a deeper understanding of the challenges surrounding Parkinson's and the importance of advocacy. Let's remember it's easy to overlook what someone else may be going through, especially with conditions like Parkinson's, where the struggles aren't always visible. Compassion is key. So whether it's offering support, sharing a kind word or pushing for better services, we can all make a difference, whether that's through donations, volunteering or simply writing to your state representative, every small effort matters. For more information, please feel free to reach out to me directly or contact Parkinson's New South Wales. You'll find everything you need in the show notes.
Leon Goltsman:Now I'm thrilled to announce that next week's episode will feature a true community champion and a very good friend to so many Emmanuel Constantinou. He is the President of the Bondi and District Chamber of Commerce and the owner of Kwik Kopy Bondi Junction, one of the standout flagship stores in the Kwik Kopy network. Emmanuel has been a powerful voice for the local businesses, guiding them through the storm of lockdowns, financial challenges, disruptive street upgrades and every hurdle in between. So if you're looking for real-world insights and inspiring advice on how to thrive, no matter what the circumstances. You sure don't want to miss this one.
Leon Goltsman:But before we wrap up, I'd like to ask you for a small favor. If you've enjoyed today's episode, please take a moment to subscribe to the show and share it with your friends. And ask you for a small favor If you've enjoyed today's episode, please take a moment to subscribe to the show and share it with your friends, and if you have a minute, leave us a five-star review. It really helps us reach more people and keep these important conversations going. I'm Leon Goltsman and I'll see you next time on Engaging Conversations. Until then, stay compassionate, stay connected and let's keep making a difference together.
