In this week’s episode, Geoff is talking to Nikki Creber who was a Winner in the 2019 Queensland Community Achievement Awards.
Nikki A Creber is mission-fuelled and purpose-driven. Having Parkinson’s disease herself, she coordinated to date, the Tewantin Noosa Parkinson’s Support Group for 4.5 years in an area covering Caloundra to Cooroy in the hinterland, to Gympie in the north. Believing that movement is a key ingredient in maintaining a great quality of life when living with Parkinson’s disease, Nikki established a WrapAround Team which provides beneficial activities such as boxing, Physiotherapy driven exercise, singing, speech therapy and dance for the members of the Tewantin Noosa Parkinson’s Support Group. Nikki and her husband led a campaign to gain a dedicated Parkinson’s Support Nurse for the Sunshine Coast area and continues to campaign for a further three nurses through their newly formed, Parkinson’s Disease Community Advocacy, Sunshine Coast incorporated not-for-profit, charitable association. Her active advocacy continues as she connects with media, individuals, business, the local Mayor and State Members to raise awareness about this largely hidden disease and advocate for equality in Queensland by establishment of Clinical Consultant Parkinson’s Practitioner Nurses.
In this episode:
- We hear how exercise has extended Nikki’s life, who has had Parkinson’s disease for 16 years. But it’s hard work – 1 ½ to 2 hours a day!
- The impacts of COVID on carers and those with Parkinson’s was immense, but Nikki created online chats and kept her group as connected as possible
Links
Connect with Nikki on LinkedIn
Join the Parkinson’s Community Advocacy ; SUNSHINE COAST Group on Facebook
Visit the Parkinson’s Disease Community Advocacy website
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Transcript
Annette (00:05):
Welcome to the inspirational Australians podcast, where we chat to people, making a difference in their communities and in the lives of others. And here is your host for today, Geoff Griffin.
Geoff (00:21):
Welcome to the inspirational Australians podcast stories of inspiring achievements and community contribution. Every week we will celebrate an award program category winner or finalist. We hope you’ll be inspired and encouraged to know that Australia is in good hands. Together with our corporate partners and not for profit partners, Awards Australia showcases ordinary people from right across Australia doing extraordinary things. If you enjoy hearing the stories about inspirational Australians, please subscribe, rate us, and review us. We’d really appreciate it. Hi everybody. And we’re really glad to have your company today for this week’s podcast. My guest today is dedicated to helping people with Parkinson’s disease. Nikki Creber won the 2019 Australia Pacific LNG Community Hero Award from very, very big field of nominees. In fact, for work give the very best opportunity for people with Parkinson’s to live their best life by providing support and the quality they deserve. Congratulations, Nikki, and welcome to the podcast.
Nikki (01:35):
Thank you. Thank you. I’m very pleased to be here. Thank you, Geoff.
Geoff (01:39):
Nikki, 150 nominations in one category. Wow. So I guess that puts into some perspective, the value of your work as seen by the judges and certainly your peers and the people that use support. So another big congratulations. It is a massive, massive achievement. It’s a validation, I guess, but now you are an extraordinary woman. We are very thankful for people like you. Nikki, you have Parkinson’s disease yourself, which must give you a real empathy and a firsthand understanding of what people with the disease need.
Nikki (02:21):
I believe it does Geoff, but before I answer that you alluded to something before about Parkinson’s disease. And I guess part of our problem is that Parkinson’s is a hidden disease. So I’ll just take a moment to explain there’s idiopathic Parkinson’s disease, which is normal, what people expect to see when they see someone with Parkinson’s and let somebody bent over and with a tremor or a bad shake, but there are 15 other variants of Parkinson’s disease. And I have one of them called multiple system atrophy, which means that the disease affects me differently and a lot more internally. So I don’t have an external tremor, but I have a lot of other difficulties that come with it. I just wanted to put it out there that Parkinson’s disease is not readily known or understood. The understanding it gives me for helping others with Parkinson’s is, is a little unique, I think, because I understand how difficult it is to get through every day for people with Parkinson’s. And how does it support and a system, your world narrows and you connection with the world narrows down as you, as the disease progresses. And that that disconnect causes you to withdraw into yourself. And often people say, Oh, I never see that person with Parkinson’s. They don’t go out anymore. They don’t do this, they don’t. And it’s because of the, the symptoms that overwhelms like drooling very unattractive in a public place or moving very difficultly. So in a cafe you can’t move around tables and chairs, um, that sort of thing. So, uh, it’s, it’s a disease that I want to get a lot more awareness out there about.
Geoff (04:05):
I certainly never realized that in its full description, that you’ve given 15 variants of Parkinson’s disease and yes, I guess we relate to things that we see clearly. So awareness is so important for diseases like Parkinson’s. Can you explain what the impact of living with Parkinson’s disease has on those that haven’t and when, I guess you just gave a couple of examples, but can you expand on that?
Nikki (04:38):
I surely can, but when I said 15 variants, there’s some that it’s, it’s, it’s considered an auto immune disease now. So it’s on a, um, a spectrum and in that 15 variants, some become quite, um, serious and can cause quite a short life. And the onslaught of symptoms can be very fast and progressive and debilitating. So this disease is degenerative, it’s debilitating and it’s progressive. So it’s not as if it’s going to kill us stiff, which makes it less pretty than a lot of other or less attractive than a lot of other diseases. It’s the living with it. That is really, really difficult. And the impact is just so huge because it really depends on two things. I’ve come down to believing and that’s, um, about mindset. It’s about how you see yourself, whether you see yourself as a victim or with something else new to content within your life. And the other part of it is how are you going to live? Are you going to go into that good night quietly? Or are you going to remain the one in charge of your life? Not let Parkinson’s take charge, um, not let Parkinson’s be in the driver’s seat, but you take back conscious control of your life and the symptoms. Uh, they come in three areas, motor non-motor and neurological. So motor can take away your mobility non-motor can affect your voice. And I apologize in advance. If my voice gets a bit wavery through our interview, it can affect your swallowing. It can affect your breathing because all of these tiny muscles, 500 of them around the throat area, uh, involved in speaking swallowing, um, managing your saliva and breathing and they can become conflicted. The vagus nerve travels from the head to the toe, down the right side of our body, and it can be impacted by Parkinson’s. Um, and we know we’ve got as many neurotransmitters in the brain as in our gut. So our gut gets conflicted when dopamine is not operating in our system because it’s a neurotransmitter too. So a lot of people have suggested problems and then aligned with that. Of course I have elimination problems, bladder and bowel control problems. And then there’s the neurological part of it where you think you’re going crazy. Your short term memory can be impacted. You can doubt yourself, you lose your sense of confidence. You get brain fog, cloudy thinking, headaches. So the range of symptoms is huge and impacts on every aspect of our lives.
Geoff (07:32):
Yeah, that’s, um, uh, quite significant and having different types of symptoms must make it more complicated for people like yourself, because of course you’ve volunteered in the role of coordinator for the Tewantin. I hope I said that, right? Tewantin Noosa Parkinson’s Support Group for four and a half years. So that’s significant that would have complicated how you relate to people. Um, cause at first sight you wouldn’t know the symptoms yet to get to know the people and have them confident, I guess, to talk to you about how Parkinson’s affects them. What were the group’s major responsibilities and achievements during that time?
Nikki (08:17):
A support group is meant to be a very safe space for people that have a common concern to come together and share and feel enabled. So I first went to a support group when I was first diagnosed, 16 years ago, I was early onset. So I was 48 and I couldn’t leave the room fast enough. I couldn’t run fast enough because everyone in there was old, white head on walkers. And of course the common assumption about Parkinson’s is that it’s an old people’s disease. Well, that is not true, but that was my viewpoint, when I walked into this room, I just saw all these on walkers and I saw my future and it terrified me. So it was another 11 years before I got involved in a support group. But in that time I realized that support groups were meant to be many things, offer some education, offer, support, offer, friendship, offer connection. Um, and connection is really important because people with Parkinson’s withdraw from the community, both for the neurological aspects, but also because when you start to find it very difficult to find your mouth and to eat in public people, don’t like to do that. So they retreat, um, to their homes and then your close knit community of visitors and friends that would come that dies down over time too. So I wanted the support group to offer everything it could and we have, we’ve done amazing things. We’ve built a wraparound team of allied health professionals, um, and a friendship based and a support network. And it’s been, it’s been wonderful. And, but of course these things go through waves last year, we lost five members of our elder group and that was very hard on the group. Um, because of course, everything that you see is in front of you personally, when you see people with other people with Parkinson’s that have the down the track than you, but we also learn a lot from each other and it’s fun.
Geoff (10:28):
Yeah. Would it be wonderful to be there as a support for each other to tell each other your highs and lows, but you’re quite right. You know, and I, I hear that from older people, my parents, for example, whose friends are passing away and they, their mortality becomes more real every day. And if you’re in a group where your friends, people that you lean on and vice versa passing, it does become very real. And I guess scary for want of a better word.
Nikki (11:03):
We did get some amazing things though. We drew the community together. We have a community face now Tewantin Noosa Parkinson’s Support Group. And we developed our wraparound teams, which is really novel and innovative. And we raised $6,000. We had two years of walking the park fundraising for Parkinson’s Queensland. And that was the first time we’d done it up here. And that was fantastic. So we’re very active group in many ways.
Geoff (11:31):
And I know you are a strong part of that, that group in leading the way. Uh, and you mentioned the wraparound team that’s been developed because, because you’re a great believer in we’ve been, I had been that key quality, uh, key to quality of life and subsequently that’s I guess, how the wraparound team was developed. Can you tell us a bit more about the wraparound team? What’s the focus and really the benefits?
Nikki (11:59):
It started from me realizing how expensive it is to have Parkinson’s disease. The longer you have it, the more expensive it gets. It can cost anywhere between 30,000 and 90,000 a year or that old adage use it or lose. It is absolutely real. Once upon a time when people were diagnosed, they were told to go home and sit down and rest, and that was it, taking medication. So, people took up a sedentary life in front of the TV, and very, very quickly, they went downhill and lost the ability to move their whole body, their fine motor, their mobility generally. And I realized that we had to keep moving and the research tells us this. So, um, the cost comes in trying to get to movement and exercise and gym often enough and you know, the costs are prohibitive. So we started out with the notion that we want to keep the costs down so our members could get to exercise four or five times a week and it was achievable. So when I say exercise, that means everything. Speech therapy, exercising, the mouth region, um, singing, exercising, the voice and breathing. Um, we have a thing called move it, which is a blend of PD, warrior, and other big movements that are good for Parkinson’s, boxing every week. And, um, dance is wonderful, but we also do a wing chun and a variety of other things like yoga. So over time, we’ve built a relationship with allied health professionals who are willing to just charge us a base price for as long as we put together, numbers enough for them to run once a week, um, activity. And if, if the numbers aren’t there, which comes and goes, depending on how well people are and how mobile, then we, we boost it up from the group to make sure that we can keep access to these wraparound teams that are so important for our health.
Geoff (14:02):
If I’m your support or your members a bit transient in terms of their health, does it go up and down?
Nikki (14:11):
Yeah, because it’s motor non-motor and neurological, there’s three areas where your symptoms play out. Often, you can just feel too tired or very sore from yesterday’s activities and you can’t rest yourself out of that position. And with COVID of course, last year, you know, we had to be so careful. We went online for a lot of our exercise classes, but that took a while to get underway. And lots of people are still elderly. People are still very reluctant to do things online, or they don’t have enough technology to do it. So our group meetings can have 45 people there one month, the next month they’ll have 22 or 18. It just depends on how well people are, whether they can get a carer to bring them support workers, to bring them all of that. We go up and down flux.
Geoff (15:07):
Yeah. How does going to the gym, for example, weight and that type of exercise affect Parkinson, is that counterproductive? In other words, is that not a good thing?
Nikki (15:18):
Uh, that’s a really interesting question because amongst our group, we have the world title holder in powerlifting in his age group, which is 80, he weighs about 66 kilos and he lives double his weight. And he’s had Parkinson’s for 11 years and he is an absolute advocate that to live a good quality of life with Parkinson’s, it is, uh, uh, a full-time job and exercise is the key. So, for him, weightlifting power lifting was the thing that enabled him to keep going. It was the magic exercise for him, for me, it’s wing chun and dance and boxing and, um, movement and walking and swimming. But those are the things that work for my body. Michael J. Fox put it this way. If you meet some, you know, Michael J. Fox or the Michael J. Fox foundation, a great, um, a great ambassador for Parkinson’s disease, put it this way. If you meet one person Parkinson’s disease, then you’ve met one person with Parkinson’s disease because the next person you meet will look altogether different. It is an individual disease because it’s auto immune limited. So, whatever you love to do, Geoff, yoga, that is the thing that will probably work for you. But then it’s a matter, it’s a matter of building up and getting yoga into your life on a consistent basis. So it’s every day, every day, every day, you can’t say I go to gym once a week and I cycle on Saturdays that will not do it. It is exercise every single day because our neural pathways are closing down because dopamine is not functional anymore. In as a neuro-transmitter doing its work, um, driving certain enzyme releases and so forth in our body, it’s closing down. So, we have to use synthetic dopamine or medication, or what dopamine we’ve got left and exercise to drive the building of new neural pathways to stay alive and active and able to enjoy life. So exercise every day, the consistency of it, will manage that force.
Geoff (17:50):
That’s interesting. So what you’re saying is exercise will tend to really and possibly extend your life.
Nikki (17:58):
Yes. Oh, it’s certainly extended nine. I saw a neuron; I wasn’t the subject of the neurologist visit. I was there as an advocate. The neurologist turned to me and said, what would you know about Parkinson’s? And I said, I know about Parkinson’s, I’ve been diagnosed for 16 years. He looks at me, he said, you haven’t got Parkinson’s. I said, yes, I do. I’ve diagnosed with MSA Parkinson’s. He said, Oh, you’re totally misdiagnosed. You would have been dead years ago if you had MSA Parkinson’s. And that just validated everything to me, the knowledge out there, even amongst specialists is very, um, non-embracive of, of, uh, lots of different perspectives on auto immune diseases. And if we decide to be in conscious control and we take up the challenge of finding something that works, but speaks to our body, works for our body, then we can slow down the progression of this disease. And I don’t say I’ve cured it. I’ve say I’ve retarded a lot of symptoms and slowed down the progression.
Geoff (19:10):
Well, it sounds like you’re an ambassador for, um, for people too, as a, as a role model to follow your example. And you’re a showcase of what you can do and how it can help you.
Nikki (19:24):
Intense work one and a half hours to two hours a day of exercise.
Geoff (19:30):
Wow! It says a lot for everybody really doesn’t it mean exercise is a key to longevity for all people let alone those who absolutely need it and like yourself and people with Parkinson’s. We do, um, I guess for everybody with, uh, Parkinson’s and other vulnerabilities through auto immune dysfunctions, a bit worried through COVID and, and, uh, any other outbreaks.
Nikki (20:00):
Yeah, well, we’re, we’re in a risk group and, um, a lot of people just stopped going out. That was it. I couldn’t go out into the world. And so the sense of disconnection became a lot more, um, emotionally significant for them. And so I very quickly started, this was what I did with, with our group set up online zoom meeting so that we could at least talk and see each other. And I was sending out emails all the time. We’ve come through it really well, but it’s left its scar. I think on risk of groups, particularly that we have to be very, very careful and most of us are now quite reluctant to go into large groups and, you know, like sports events and things like that, um, and will be for a good while, especially while these new variants of coming alive in our community. But it was a very scary time because, um, Parkinson’s people are, uh, have to fight that disconnection and that withdrawal into their home all the time. So it really, um, escalated that feeling amongst the community.
Geoff (21:11):
Yeah. I guess COVID would have affected your support group and people with Parkinson’s, as you say, you know, how to a whole new level over that.
Nikki (21:21):
There is a lot of them have carers coming in from, you know, the community. And so that was very compromised for a little while, while carers support workers, you know, had to make decisions about whether they wanted to still operate and, you know, wearing face coverings and, um, gloves. And it just changed everything quite sick. You can lean being an older group. Generally it took people a while to gather themselves and go on in a new way. We have our first meeting this week, actually coming back this year. So it’ll be a good one because all of last year was written off to COVID really people didn’t really come back strongly when, when you know, things were a bit safer.
Geoff (22:06):
Well, I hope the meeting goes well, Let’s talk about your husband, he led a campaign to get a dedicated Parkinson support nurse for the Sunshine Coast, were you successful?
Nikki (22:18):
We were indeed! The reason we went for, um, getting a dedicated Parkinson support nurse. Interestingly enough, Queensland is the only place in Australia that doesn’t have such a service in place in our health system. In the UK they’ve had community Parkinson’s nurses for many years. And the ratio there is one to 68 people in the community one nurse to 68 people. In Australia, a lot of our Parkinson’s consultant nurses and better in situation, um, around Australia might have a caseload of 200 to 500. So it’s, we, when I realized we had no such capacity in, in Australia, I felt very that this was a real case of inequity. So, we looked into it and we ran an awareness raising campaign. And we actually named the executive director of the sunshine coast health service as our, the name about online, um, survey asking people if they thought we needed Parkinson’s people in the community, we had over 2,800 signatures within a month. And then we looked for how we could make this happen. And as it turned out, there was nurse navigator funding still rolling out from the government to the health department. So we kind of piggy backed. We made an expedient decision to piggyback on something that was there already. We wanted a community based nurse, like they have in other parts of the world where they run community clinics, they’re available for home visits. They go into people’s homes, they support them. They can make a tweak your medication. They can send you for testing. It often takes people 12 months to see a neurologist or specialist in this country. So, if you have a problem, it’s very difficult and if you go to emergency, you just don’t get treated. They don’t know anything about Parkinson’s unfortunately. So, um, mind you, there’s been amazing inroads done to that in the last few years too, but anyway, we decided to ride on the back of nurse navigators. So, we did eventually get it. And I believe every head of department in the Sunshine Coast Region wanted that position. But fortunately, um, we didn’t, unfortunately we didn’t get it community back like we wanted, but in the Sunshine Coast region rehab, a center of excellence at the Malaney hospital called the Malaney motor disorder clinic. And, um, that position went into that clinic. They have a waiting list of 700 people. Normally it takes 12 months to get in there. So this did make a difference, that nurse has been able to establish, um, more tele health services and, and a lot more access once you’re in the, in the system. So it’s been a good thing, but not what we wanted quite.
Geoff (25:21):
I know you’re still fighting, aren’t you for four additional specialists, specialists, Parkinson’s community nurses. How is that progressing? Are you seeing light at the end of the tunnel for that?
Nikki (25:34):
Well, COVID just stopped everything last year. Unfortunately we were just setting up relationships with our state members and government and so forth and in COVID just put a stop to that. So, um, in that time we have incorporated, uh, a not-for-profit association that’s, um, becoming a charity and we’re driving it from that point. So we are going to government right at the moment we’re seeking there, um, funding or part funding for three specialists nurses. Now why three, because we have over 4,000 people on the Sunshine Coast with Parkinson’s disease, it’s a large number, but then all around the country, I think our numbers are being under rated. Um, and we, we happen to have three hospitals in our, um, health district. So there would be one attached to each hospital to that locality sort of thing. And we, uh, that we were this time, they will be community list.
Geoff (26:36):
Awesome. Some fingers crossed that all comes together. You can get access to the services they need and deserve of course, as well. Well, you also had part, and you’ve mentioned it a bit earlier. Part of the Parkinson’s Disease Community Advocacy Sunshine Coast. Tell us more about the role, we touched on it, but more about the role of the group.
Nikki (26:59):
Well, the role of the group is our task, as we have defined it, we’re a very tight group. We have built the association and we have a very tight committee and working group, um, membership. And our task is threefold it’s to campaign with the state government to, um, obtain these three nurses. We’re working on ways to offset the cost of that to the government. So we’re looking for private philanthropy and business sponsorships and so forth to help us do that. We want these nurses to be seen as a pilot study for regional Queensland, so that they’re community based, they can work in the field, they’re mobile they’re in liaison with the emergency departments of the hospitals and with an overseeing neurologist specialist in Parkinson’s framing it in the way of a three-year study, um, to measure their efficacy and see if it makes a difference to a regional community to have this resource. So that’s how we’re presenting it to the government. And then the third aspect is to set up an independent Parkinson’s community and response center on the Sunshine Coast. It’s terrifying if somebody with Parkinson’s goes to a hospital, their medication is taken from them. It’s incredibly important that somebody with Parkinson’s has their medication at, you know, five past 12 when they’re meant to have it not at half past 12 or not at quarter to one, because they’ve already gone into an off period and tremendous dyskinesia, and which is ungovernable movement of the body can take over like tremendous shaking and twitching and all sorts of things. So we find that a lot of emergency departments have no expertise with Parkinson’s. So, the person goes in and they’re left to sit there for hours, when they get finally in and treated, they asked for their medication, it takes another amount of time to come. And then they end up being kept in hospital for the longest time because their medication being upset, puts them back. And s0, patients with Parkinson’s amongst all types of illness, measured in hospitals to stay in the longest, therefore costs the most. So if we can bring these three Parkinson’s nurses into the community, they cut by three quarters of mission to hospitals by being in the community, being available and people can get to them and get immediate help and support. So, um, we’re to frame it as a three-year study and, and present it back to the state, hoping that it provides something that’s useful to other regional areas.
Geoff (29:50):
No wonder you’re so passionate about it. The task is sounds immense in some ways, but so important and people can support the Parkinson’s Disease Community Advocacy Sunshine Coast, by joining the mailing list to keep up to date, as well as check out the Parkinson’s Disease Community Advocacy Website. And that is, uh, tell us the, the website
Nikki (30:16):
It’s just that Parkinsonsdiseasecommunityadvocacy.com.au. and um, the Facebook page is Parkinson’s community advocacy, semi-colon sunshine coast. So we’re really interested in people following us saying hello and following us too, to keep up with what’s going on. We’ve had some tremendous inroads in the last couple of years, um, with Parkinson’s nurses in other States getting, um, services into emergency departments that have made a real difference. So we’re keen to have that happening in Queensland.
Geoff (30:54):
I think it’s a great thing to be, to be following the, uh, community advocacy group from wherever you are in Australia. But certainly, if you’re in Queensland and certainly if you’re anywhere near the Sunshine Coast, get on board to see what’s going on, what can be done and certainly what still needs to be done. So, all power to you, that sounds amazing. Now heading in a slightly different direction, you’ve been doing amazing work, and I know you don’t look for accolades because people like you just do it because it needs to be done. There’s a challenge. There’s, something that is missing and it needs to be filled. But how did you feel when you were nominated for the 2019 Australia Pacific LNG community Hero Award in the first place?
Nikki (31:43):
I felt really truly humbled and then a feeling of, of great gladness came over me that the community could see the need for this hidden disease to be illuminated and brought into the foreground. I just felt very humbled and very glad.
Geoff (32:02):
Yeah, well, that’s, that’s lovely. And that’s what the awards are all about really is just giving people an opportunity to acknowledge someone for their really good work in the community. People like you, as I mentioned, don’t look for accolades, but it’s just so lovely to know that someone appreciates what you’re doing, that your work is validated by someone saying, you know what? I think they’re so good and what they’re doing is tremendous and we really should say, thank you via this vehicle. So, I’m so pleased to hear you say that and of course you then went on to make the finals, which was awesome. And you attended the awards, gala presentations at the roll on the park. We weren’t able to do that last year due to COVID, but, uh, in 2019, you were there, I remember you’re coming up on stage, uh, and it was hosted by the amazing Kendall Gilding, she is just a lovely, wonderful person. She looks after the reads, the 4:00 PM news updates on seven, and of course, uh, does reporting as well. And she wouldn’t miss the awards for anything. In fact, when she was pregnant, she still wanted to be there, she was not too far away from baby. And, you know, and that says a lot about her and 7News of course, seven years, but the, she, she hosted the awards. You were presented as a finest. And later you were announced as the winner by Alex Kennedy Clark, who was the general manager of Origin, that must have been such a thrill for you.
Nikki (33:44):
It was totally unexpected! When I met the others in contention who were there that night, it just made me feel absolutely amazed by what people can achieve in their stories. So I was truly, fluxed truly taken aback when, when it was announced. And interestingly enough, there’s been two occasions, uh, in the last couple of years when I’ve completely lost my voice due to Parkinson’s, you start to speak and your voice just cuts out the muscles to stop working. That was one when I met the health minister in Queensland, in original cabinet, up here. And then, and before that, that was afterwards. And that night when I stepped up onto the stage and Alex, the general manager of Origins started to speak and as paused for me to speak the voice and I whispered to her, could you please read my speech? It was so funny, but then my voice came back up a little while, but that’s the impact of Parkinson’s, it’s totally overwhelming. And it comes at any time out of left field. And, you know, I work on my voice. I have vocal coaching to keep my voice going because it will just fade away. It is one of my Parkinson’s symptoms, but that night it just went, boom and there’s nothing that will take your confidence away, then losing your voice. And that is another aspect of why I do this work while I can. And that night it’s a beautiful event, just so lovely. And you feel so special and it’s big, and there’s people from all over the state and it’s amazing. The people you come across and the people meet at the great networking night as well. And it’s so beautifully orchestrated and so welcoming. It was just a fantastic night. And then to get the award as well, just over the top cherry on the cake, as they say.
Geoff (35:54):
I think as organizers, and I’ve been doing this for a long time running award programs, it’s such a special privilege to be in a room with so many champions and to meet people like to see yourself and to see the absolute thrill of being awarded. You know, it’s not just about winning of course, but it’s about being recognized. And it’s about what you do, being recognized by the community and opening up access and awareness for what you do. Has winning the award helped your work?
Nikki (36:29):
Initially there was a lot of, um, media interest and that was great, but then COVID hit.
Geoff (36:36):
Yeah, I’m into everything.
Nikki (36:39):
I, I sort of felt like the year was taken away from me in some ways, because there was a low, I kept up my local, um, awareness raising work. There was not a lot that could be done against the media coverage of COVID. So I really feel now that, you know, it was a COVID year. It wasn’t a year about being a community hero. Um, so I feel very enthused and empowered to carry on this year as if it is my not to take away from the COVID, but, you know, um, in terms of my local work and, and getting on with our vision.
Geoff (37:21):
Well, if what you do, it’s always your year, you are so important to the community. So we wish you well this year, but I’m so pleased. You got good media exposure. And of course that gives credibility as well.
Nikki (37:34):
Absolutely. Absolutely. And, and the outcome of the years that Noosa Parkinson’s Support Group has the community face now, which is bright, which is great. And we’re working a lot more closely with a lot of community, other community groups now, which is also phenomenal. So that’s a very positive outcome.
Geoff (37:55):
Yeah, brilliant. I think back to that awards night and a big shout out to Fraser Power at Australia Pacific LNG. So, he is a huge fan of these awards, he attends every judging, every awards night Australia Pacific LNG is very passionate about supporting those like you and the community that make a difference, Nikki. and, uh, I see his face because it’s always beaming. He sits at these awards nights and his face is beaming with pride, for their involvement in making these moments special for people like yourself, especially in the sense that, so you get the opportunity to be acknowledged and put on a pedestal for the important work you’re doing. So, a big shout out Fraser if you’re listening, mate, thank you so much to you and Australia Pacific.
Nikki (38:46):
We’ll add to that too, because a great supporter of ours has been there out. Um, Noosa State, MP Sandy Bolton. She was my invited guests that night. And of course being an MP, something came up, she couldn’t make it at the last minute. And, um, so she was texting me and she was blowing me back texts, you know, and Fraser walked up behind me and quietly introduced himself. And I didn’t really, it was very noisy and I got up to hear him better. And I found myself surrounded by this whole group of people and that I hadn’t expected. And Fraser has offered some wonderful mentoring help in the year since. And I’m very, very thankful too his personal interest and his commitment to voluntary work in this country, he’s an awesome volunteer of himself and has been for a lot of years and a lot of thanks to Australia Pacific LNG who support this because you know that the figures are frightening without volunteers. And that’s what community heroes are, where volunteers to do this from a passionate base without volunteers supporting Australia. I didn’t know where we’d be because the volunteer is in Australia is at a tremendously high level, right across the range of services and the gamut of things that could happen. And, um, I was just so, so amazed by the Community Hero Award that was about volunteerism.
Geoff (40:26):
Yeah. It’s a very special award and it’s all about partners. In fact, who are focused on giving back to the community, even when times are tough, they’re optical and missing in terms of their budgets. But we do thank all of our partners for the dedication that they make towards making these awards possible, there are plenty out there want to give back. So we, we do thank everybody. And sometimes I get a bit of a bad rep, like 7News, you know, you’re all negative and stuff, but they support these awards and our 7News Young Achiever Awards because they do want to make a difference that you want to give back. And then to want to take the opportunity where it presents such as these awards to actually acknowledge people, give them that opportunity. And if anybody’s listening out there and in your business or a business you work for, it gives back to the community, would like to let us know because we’d certainly always looking for partners for our awards. And it is an opportunity to not only get good brand alignment with community, but also to give back most and make a difference to people like Nikki.
Nikki (41:37):
And I think the whole range of awards gives an element to our culture and society, that is good, humanitarian based altruistic. It is the best of us. It is looking outward, is looking outward to our community, embracing everything that’s happening because sometimes we can get very self-centered in our society the way we live now and these awards and the businesses that sponsored them are really important as an aspect of Australian life.
Geoff (42:13):
Yes. Thank you, Nikki. What’s something that we might not know about you?
Nikki (42:20):
Uh, I’m a workaholic that’s obvious, but equally I have to close down and get my hands dirty to nourish myself to do that outside work. So I love renovating and I love gardening and I’ve just taken up paddle boarding, stand up paddle boarding. Well, yes, I fall off a lot because of my issues, but yeah, it’s exciting.
Geoff (42:53):
It’s great to do something different. And, um, that is certainly something that I haven’t tried. I’m a little bit fearful of falling all the time. So good on you for tackling it. What sorts of driving passions that make you tick?
Nikki (43:06):
I’ve just thought about this recently. My dad was in Lions International for 44 years. He was so service orientated. That’s how we were brought up that you need to give back to your community. You need to volunteer and be out there doing things for your community. And that’s what makes community better. I can still drive down around the South side of Brisbane and say, yes, he was part of building that toilet plugs, part of building those swings in that park, you know, part of the barbecue they share at this park, just amazing contributions that we take for granted. But that’s where I learned my belief that every single one of us can make a difference and should contribute to our community.
Geoff (43:55):
Yeah. They said it must be time. So, when it all gets a little too much for you or you’re feeling low, what do you do to help reset bounce back and recharge?
Nikki (44:05):
Yes. Good question. I garden and I draw and design dream living spaces. Like I’ve designed the Parkinson’s community response center. Now I’ve drawn it all up and I’m going to get the concept map drawn up shortly. I find that relaxing.
Geoff (44:25):
Wow. Sounds stressful. Um, sorry. Do you have, um, previous background studies or skills in, in interior design or was that just a natural talent you have?
Nikki (44:37):
It’s a natural talent. I did get into architecture when I graduated high school. Uh, but it meant I had to go and live in Townsville. And my father was a very practical man. He said, no, you’ll do teaching because when you’re a mother, you get school holidays. In those days, you had the purse strings. And, um, there wasn’t, you know, scholarships and well, I did get a scholarship, but there wasn’t enough to live on. So I had stay in Brisbane and do teaching and that I’ve always loved design. So, I’ve done bits and pieces of design.
Geoff(45:14):
Oh, that’s brilliant. They should get to still be a part of it and use the skills in that area. And what’s next for Nikki Creber?
Nikki (45:23):
People asked me, what’s the timeline on getting these three Parkinson’s nurses? And I could say three years ago because Parkinson’s once it begins to progress in advanced stages in the advanced stages, very quick and around. And I see a lot of people now and during that stage, and that’s when they need those Parkinson’s nurses. So this year three Parkinson’s nurses, that’s my goal.
Geoff (45:48):
Do you have any words of wisdom for our listeners and the following their dreams?
Nikki (45:53):
That’s a really hard one because I, a lot of people have a problem with the word dream. I say are mission-driven and purpose fueled. And, and that to me is, is more, is better than a dream because the dream, well, I use DVD of desire, a vision, a dream. So, you’ve got to have the desire and the vision and a dream, but you’ve got to have the desire first, you’re going to have a vision of what you’re going to achieve, then it can take on the dream and putting that to reality. So I think it’s really important that people get to know what really answers is them and lights up their heart space. Cause that’s when their mission and purpose starts.
Geoff (46:38):
Yeah. Beautifully said, uh, I think they’re powerful words. Remind us again, where our listeners can connect with you or get involved?
Nikki (46:48):
Um, yes, certainly they can get involved at our association website, which is https://www.parkinsonsdiseasecommunityadvocacy.com.au/, or follow us on Facebook at Parkinson’s community advocacy; SUNSHINE COAST, or my website is https://www.nikkiacreber.vip. And I’m there nikki@nikkiacreber.vip.
Geoff (47:26):
Awesome. And LinkedIn too,
Nikki (47:28):
Yes, I’m on Linkedin too
Geoff (47:31):
I presume would like to follow your inspiration woman. So, I think I highly recommend that people connect with you and they can learn a lot, not just about Parkinson’s, but how they’ve been inspiring, how you are in the community. Nikki, it’s been an absolute pleasure to have you on the podcast today. You’re a real inspiration. Thank you so much for sharing some of your story with us. I hope everybody listening, listening has enjoyed hearing Nikki’s story. Thanks so much, Nikki.
Nikki (48:05):
Thank you, Geoff! It’s been a real pleasure and I would encourage anyone who knows. Somebody’s making a difference in their community to think about nominating.
Geoff (48:19):
Thank you so much. Well until next week, everyone be kind and remember together we can make a difference.
I hope you enjoyed today’s interview as much as I have. We would love you to subscribe to our podcast so that you won’t miss an episode. Join us each week, as we talk with ordinary Australians achieving extraordinary things. Did you know that Awards Australia is a family-owned business that proudly makes a difference in the lives of those that make a difference for others? And we thank our corporate and not for profit partners for making our awards programs possible. Do you know someone that’s making a difference or maybe your business might like to sponsor an award, contact us through our Instagram page, Inspirational.Australians or head to our website awardsaustralia.com. It would be great if you could share this episode with your network because who doesn’t like a good news story and please rate and review us. We would really love to hear your thoughts until next week, stay safe and remember, together we make a difference.
Annette (49:30):
Thanks for joining us today on the inspirational Australians podcast, we hope you enjoyed listening and have been inspired by ordinary Australians, achieving extraordinary things. So, it’s goodbye for another week. Remember, together we make a difference.
