22 minute read
Central Coast Stories
“I’m trying to get my drivers license again, that’s one of my big goals,” says Rod. “I’ve got my learners now!” Flying his flag
“I’ve lived in Wyong for just over 8 years now. I grew up in Wagga but I wasn’t born there. I was born in Port Kembla. My mother and father worked in Lithgow for a while too and I love it. Lithgow is the bomb! My grandfather was driving from Sydney to Lithgow, I was in the back seat as a three year old without a seat belt. When he hit the brakes I went flying from the back seat straight through the windscreen and hit a brick wall. I survived but of course I don’t remember anything. The doctor’s and my family told me about it years after it happened. The accident caused me to become an epileptic and I used to have grand mal seizures. Now I take medication and since I’ve been on the meds I haven’t had one fit at all.
I started school at year seven. I first had to repeat literacy and numeracy class and so I went and I went and improved on those two subjects because I knew I wasn’t any good at it. I thought to myself “swing it round”, and so I did.
I went through to year ten. I went from year 10 to the TAFE college across the road from the school, and just started doing course, after course after course after course, non-stop. I did chef’s assistant, cooks assistant, welding, computers, car detailing, spray painting, panel beating, and mechanic school. I’ve also done building, paving and was a stable hand down in Wagga. My mum passed away, God love her, and my family said “look we’re up here on the Central Coast. Why don't you move up here and then we'll help you with some family support”. So I decided to move up here to where my sister and nieces and nephews are. They’ve helped me out a lot. And I mean a lot. My biggest challenge for me has been losing my mum. Some people say it takes five years to get over something like that but no, it doesn’t. I was introduced to the Men’s Shed up here, which was good, but that finished about two years ago. I’ve also joined up with Yerin (Aboriginal Health Services) and got to know them really well. They have another men’s group who meet every fortnight. We get together and see what has to be done, and then we do it.
From then I’ve just been taking life every day as it comes. Every challenge that comes at me I say “There’s got to be a way to get through and deal with this. Let’s try it. Let’s do it.” While living on the Central Coast Headstart said that they could help me besides my family, and so I thought “ok, good”. They’re helping me to achieve the goals I’ve set, like get my money back into budget, make sure I don’t overspend, get myself towards getting my license. I tell you Rachael (my support worker) is a Godsend! She really is. My father was Aboriginal, my mother wasn’t. I’m 99.9% Aboriginal and I’m proud to know that I’ve got that in me.
I get furniture restored and paint it with Aboriginal colours. I’ve got a real big coffee table here which I did about three years ago, I’ve also done some other chairs and then a bedside table that I did in Aboriginal colours just a couple of days ago. I just do the Aboriginal flag because I’m very proud of my culture. I used to do swimming some time ago but when I lost mum I stopped. But now I’m getting back into it. I’m doing things that mum would be proud of so I might was well get on and do it! Our Headstart group has been out a bit lately. Swimming felt as though I was getting my strength back in my arms and legs and I loved it. The bowling though I was a bit shaky at first but I’m getting the hang of that again. We’ve also done archery and that went great the second time. I’m just getting a lot better. I went the first time in October and I was a bit all over the place then.
I go for driving lessons with the instructor at the driving school. He and I get on very well. His feedback is that every lesson I'm getting a lot better at it, but I need more consistency. So things are working in my favour and he says that we’re working towards getting my P plates. And that’s one of my goals. I got my L plates and that took a fair while. I went with Rachael to the library one or twice a week to practice the test on the computer. That also helped with my computer skills. I’ve also got my iPad tablet and I can practice my driving test there too.
I’ve got my car downstairs and I really want to be able to go out myself to see my family and do my shopping instead of relying on everyone else. Being independent is a big goal. Rachel supports me twice a week. She helps with tidying up, making sure everything’s in order and the place is completely tidy. When COVID first started, the way I thought of it, was if the place was dirty that’s where it would sit. But if the place was completely spotless, well, it’s got nowhere to stay. If I didn’t have Rachael I’d sort of be lost, even though I do have family in the area who are there when I need them. after she has something to eat at night time runs around the place trying to headbutt anything and everyone. She’s a headbutt cat!
We’ve been working on my fish tank and got a couple of fish to look after. I also have my car to maintain. There’s lots to do and keep me busy. Actually two fish have gone missing since we’ve had the fish tank, now we’ve got covers over the top the cat’s left them alone!”
A support worker’s perspective:
Rod is motivated most of the time, but sometimes it’s a bit tougher if he’s feeling lazy. But we get there. COVID slowed things down but we’re doing more outings again. We’re wearing masks of course, they’ve been compulsory down here for a few weeks. Rod had his fish tank empty for years so we got that up and running and filled it up with water. We’ve been to the pet shop learning how to maintain that and try to keep the fish alive! We did a lot of driving to the library for Rod to do the practice RMS tests on the computer. We did a lot of that for the last two years, even when Rod got his L’s we’d continue doing that off and on besides the usual appointments and things.
We spent time painting a few chairs recently for a Christmas present. They’re dining room chairs we found on the side of the road, bought some fabric and put new cushions on them and painted them the Aboriginal colours. It’s just having the money to get paint all the time. - CSW Rachael
No place like home
My favourite place on earth is right here on the Central Coast. This is the best place on earth. I’ve been to Bali and Fiji and there’s nowhere else I’d want to live than here!
“I’m originally from Sydney but since moving up here I’ve been supported by Headstart for about five years now. My main support worker has been with me for three and a half of those years. She’s helped me get out of a difficult time of grieving. I’m thankful for that. She still does four days a week with me and we have a great relationship. She’s a good support worker because she can understand how my brain is and my downfalls and how I am with it. I love the Central Coast and would never go back to Sydney, it’s much more relaxed up here and you don’t have to get dressed up to the nines. The physio comes to my house every week, which is good, giving me new exercises to do. They’re helping my back a lot as I have a neck and back injury. I had two very bad car accidents in 1981 and 1989 and I’m stuck with the injury from that and I’ve just deal with the pain and keep taking medication. My brain injury was caused by lack of oxygen to the brain. I had a very bad knock on my head at high school and came back home with a migraine. I took a shower as I always did and my mother was out shopping so I was alone. I had epileptic fits and on top of that I was gassed by an old gas heater and was resuscitated by the local fire brigade up the road. I was in hospital for a couple of weeks after that. My memory was affected, and I couldn’t learn. I wasn’t able to continue with school and they gave me a certificate based on the grades I had already got, and that was up to fourth form. The retentive part of the brain was damaged and I just kept getting lost even three blocks from my house. But it was only the left side of my brain which the doctor’s said was ‘dead’. It’s sad that my friendships were lost right away. When you’re 15 you don’t understand and don’t learn about things like brain injury. But it could have been a lot worse, I could have not been here at all. My mother has been an enormous support over the years. It was a confusing time for both of us because it was really bad at first things did
get a little better with time. But I still can’t read a book because I forget what I’ve just read. I still misinterpret things quite a lot. Rachael is my main support worker and it’s hard not to become good friends with a role like this. She’s very professional and that’s how I’ve got to respect her and treat her. She’s very helpful with getting me motivated and understanding things. I really like Rachael and she is the one that was the right pick for me. I’ve had a few great workers too, but they’ve moved on. I like doing things that make me happy. I want to die happy, so I try and do the things that make me happy. We go around The Entrance and go to different places for brunch. We do walking because that’s good for my back. We go swimming at Mingara. We do cooking because I’m not a good cook but my support worker has the know how and helps me there. It’s good food, and we make it up and put into containers and freeze it up so that we don’t have to do it every day. We do a bit of baking too. We tried to do a bit of gardening on my small balcony but it’s hard to get things growing. Cactus is good! I’ve always liked orchids and plants - I’ve always had lots of gardening books and they remind me how to look after them and re-pot them and so on. We go to gardening expos, orchid shows and nurseries. We go to Bunnings to get equipment and plants and things. Growing things like pansies isn’t easy though as I have limited space and all I have is pots. Some are growing really well, some I think they got too hot and died. But I like to try. I need to have routines otherwise I’m a bit scattery. Support workers help to keep me organised and keep me doing things to keep my mind off the past which wasn’t easy. We also go to the shopping centre to pick up things and I just like to buy myself a little something every fortnight. Even if it’s a little plant, I don’t care. Being a pensioner I don’t have tons of money so we find stuff that I can afford to do like diamond paintings, or cooking. I like going to the beach and having a walk. Places like Toowoon Bay, Shelly beach, Bateau Bay. It’s a beautiful part of the world especially down by the water.
When it comes to swimming I call Rachael ‘little turtle’ but I just paddle round and use the noodle thing and use my muscles because I can’t do laps. We go to an indoor hydro pool and have just recently gone to the ocean baths at The Entrance a couple of times. We recently went to see the movie “The War With Grandpa” for a rec activity. Because of COVID many of the things I did with Headstart were cancelled. So it’s been nearly two years now since we went to the movies. Comedies are my favourite! Many of the rec activities were cancelled last year. It’s good that we can start to go out more now. Dale, Rodney and I have been doing things together lately here on the Central Coast. We went bowling a couple of times, not like we have any great skills! I like the social side of things and I’ve gotten to know them because we’ve been out a few times.
My approach to life is to always be positive. Sometimes you’ve just got to pick yourself up and get on with it. You’ve got to make yourself happy and you can’t depend on other people to do that. Other people can help, but it’s mainly up to you. Even if that means to give yourself a good kick!”
Soldiering on
Soldiers Point is at the northern end of Soldiers Beach. Dale loves watching whales breach when they’re around.
Dale loves going to his favourite place, Soldiers Beach. His regular support workers make sure that he gets to spend time there as often as possible.
“I was from Sydney and moved up twenty years ago. It’s pretty quiet here in Charmhaven. I don’t have family around but I do have some mates here and we go out a bit. My old mates are from Sydney and they also moved up to the Central Coast years ago like I did. It’s been a few years now, I don’t remember when I started with Headstart exactly. But it’s been good. My injury came from a car accident in Sydney. I ran into the back of a parked truck. I don’t remember anything but I was told about it. I woke up from a coma a few weeks later.
My memory got badly affected, even the sound of my voice changed. I need to use a cane for walking because of my balance. I’d already had diabetes when I was a teenager, but it got a lot worse after my accident. I used to work as a trade assistant for an electrician, and I did go back for a little while but it wasn’t easy. I did have to stop in the end. It doesn’t make me feel real good, but what can you do? My goals are to get out into the community and do things, like the shopping and head to the beach for a coffee. I love cappucinos and get two on every support shift. Lately we’ve done archery twice, we just go there and pay $25 for as long as we want. I’d never shot before. It actually makes my arm sore but it’s good. I like to have a go. We’ve also been ten pin bowling, that’s allright too. I cook food with my support workers. I get by in the kitchen. Today we made curried chicken, so that’s what I’ll be having tonight. I enjoy playing the electric guitar. I’ve never played in a band or anything though. My favourite music is heavy metal and I like the band Slayer. I also love the football and follow the Tigers. I used to do acrylic painting and did art off and on over the years. But lately I have lost interest, I don’t know why. It felt pretty good having the painting (the green man) in an exhibition.”
Dale at his favourite cafe Fade Nation barber & cafe in Toukley
Cooking up a storm with CSW Rachael The instructor at Feral Archery was genuinely amazed at Dale’s ability as a first-timer
Dale had paintings displayed in the ‘Mental Health Art Works! Exhibition’ held by Primary Care in 2019
Dale’s favourite curried chicken recipe
• Passage to India Vindaloo packs X2 • 1 chicken breast diced • 1 zucchini cut into moon thin slices • 1 pack of mushrooms sliced up Cook in electric fry pan in a little oil. Dale cooks the mushrooms then zucchini then put in a bowl, cooks the chicken adds the sauce then adds the veggies, he buys the microwave fried rice to go with it :) easy! Other times he buys the spices and follows instruction on the pack. At the moment he’s really liking this Vindaloo pack. He tried different ones than stick to then ones he really likes for a few weeks. - Rachael, CSW
Shane’s exciting
Shane’s parents had tried many different therapies over the years with limited success. They were worried about Shane’s balance which had deteriorated badly and was causing regular falls. Things took a positive turn when they discovered Engage VR Rehab, Australia’s first dedicated virtual reality rehabilitation clinic.
“S hane was a young boy and began having headaches and light was hurting his eyes,” explains Margaret, Shane’s mum. “He couldn’t balance and put his feet on the floor. He was sick too, it was making him actually sick. This all went on for the first week or two. He was diagnosed at Maitland hospital and we went to the John Hunter – or the Royal in those days - and then we said we wanted to take him to Sydney because there wasn’t a lot of options then. We took him down to a neurosurgeon at the RPA and he operated. The tumour that Shane had was very fast growing – a malignant tumour – and most people didn’t survive at the time. It was only about a 2% survival. They were able to remove all the tumour and then he had radiotherapy, just as a safeguard. The tumour’s never came back, fortunately.” While it’s been a long time coming, Shane’s father John is a lot happier with things today. “Shane has shown a lot of improvement since coming here for therapy. It’s been approximately forty years since he had the brain tumour and he had deteriorated in the last twenty years.
We’ve tried things before with other physios and there’s been no improvement. Since coming to Engage VR we’ve seen a big improvement. Something that we’d always wished for but didn’t see. And we’re so happy about the improvement we’ve seen here.” “At first after when Shane first had the tumour removed he couldn’t even sit in a chair. He had to be tied in a chair. Then he showed a lot of improvement in the first two years. He was pretty mobile, he was pretty good then. But in the last twenty five years he really got a lot worse.”
new reality
Scan the QR code with your smartphone camera to watch a video of Shane doing some VR therapy.
Margaret agrees “It’s really been a big change. It’s only really through an article I read in the newspaper is how I learnt about it. I thought this might be OK for Shane, it sounds like it may help, and I think it’s been wonderful. Here he’s been coming since October, I think it is, so that’s about four months. Once a week, about 14 sessions.”
John continues: “We’re so happy, to see our son to be able to walk around the house now with less falls than he was having. It was a concern to us because we’re getting older and if Shane was going to keep deteriorating the outcome is not going to be very good.
We picked Headstart to be the provider for Shane with Headstart, because they specialise with people who have a brain injury.
Unfortunately Shane follows Eastern Suburbs in the rugby league and he’s very one eyed!”
We asked Shane a few questions.
What do you think of virtual reality? It’s been wonderful coming here. A new idea sort of. Very good people here and very helpful.
What’s it like to be goggles and then be on a beach or in the forest? Yeah it’s a bit unusual and you get used to it. I couldn’t speak highly enough, they’re very good here.
How do you feel your progress? What do you think is improved? My general mobility is getting better.
What are your goals Shane? Just to get better and as well as I can, yeah. To keep improving.
Tell us a bit more about yourself Shane. I don’t go out much. I like my own company, so I stay at home mostly. I enjoy listening to the stereo. I’m a stamp collector. I enjoy collecting stamps. I spend a fair bit of time watching telly or mainly things around the house. I have a lovely dog – a Labrador retriever.
Engage VR Rehab is Australia’s first dedicated virtual reality rehabilitation clinic, based in Mayfield West. The use of VR in rehabilitation is new, exciting and being used throughout the world to treat people with spinal cord injuries, stroke, Parkinsons, brain Injury and neurological disorders.
www.engagevr.com.au
Rohan is excited about the progress Shane is making. Harrison loosens Shane up for his therapy session
Rohan, Technical Director
“I’ve been in the rehabilitation game using technology for about five years now and we’ve been lucky enough to work with multiple clients from Headstart. We know that we can make good progress with them because they’ve got a great team supporting them.
At Engage VR we just love seeing our Headstart clients grow and seeing their parents or their family members saying “look, this is actually making a difference”. So for us, our primary goal is to make life feel better and do it in a fun way. On a typical day with Shane, firstly we’ll figure out if he has any tightness in his body. We‘ll correct that with some body work and just make sure he’s as balanced as he can be. Then we come out into the play gym area and we work on things like balance and walking. We work on focusing the mind, so that Shane’s brain can get clearer signals down to his body. We do things like breathing which is very important and we need to slow everything down and create a calm state.
And then we do fun stuff like virtual reality. We may go for a walk in a forest with some birds and deer and lots of amazing things. Or we might be on a tropical deserted beach just having a look around and focusing on our balance and just feeling what it’s like to actually be calm and be upright and stable.
In terms of how Engage VR work it’s always a collaboration. It’s between us and Shane and Shane’s support networks. So we’re a team together and we basically come up with a set of goals, and we focus on those goals specifically for six weeks and then we measure them again and see what’s changed. What’s been really positive about working with Shane even within two weekly periods is that we can see significant differences. Even for simple things like being able to stand up without using any aids and taking slow, considered steps.
It’s been amazing thing to watch Shane and evolve and see in his eyes that he knows that he’s making progress. We’re really proud of Shane”.
Harrison, Physiotherapist
“Our work here at Engage VR is mainly with neurological patients. We do a lot of rehabilitation work with them. We’re basically your standard neuro clinic, but then we also have the virtual reality as well. So we incorporate VR to challenge balance, gait, everything like that. It just adds a little bit more fun to the sessions.
Shane came in about twelve weeks ago. He’s got a massive cerebellar issue, and basically we’ve been working on a lot of sit to stand, a lot of hip mobility with myself and with Rohan as well we’ve been working on some gaze focus. So for him in particular, he tends to get up and be all over the shop and basically be constantly stumbling and really relying on his walker.
We get Shane to focus on his breath, get some strength behind him, and also we add a bit of a virtual reality to challenge everything. His mobility and his balance have improved a lot. He’s doing really really awesome!”
