Volume 26 Issue 3 Mar 2021
VR: a giant leap A mother’s story for Shane Pg 10 Brain injury has a lasting impact on the whole family. Pg X
Central Coast Update
The latest news and stories Pg 3-9
Y ur The Blind St ries Chefs Pg 17
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The Headstart Acquired Brain Injury Services commenced in 1987 and is recognised as a premier provider of specialist services for people with an ABI in the Hunter and Central Coast region. Headstart provides individually tailored services across community access, in home support, life skills, social, leisure and recreational services, case co-ordination, and community information and education. 95 Turnbull Street, Hamilton NSW 2303 P 02 4965 4420 F 02 4965 4424 E info@headstart-abi.com.au W www.headstart-abi.com.au
ABN 75057986026 I CFN 13046 Headstart ABI Services is a registered provider under the National Disability Insurance Scheme (NDIS)
Our Vision For people living with brain injury to have opportunities that strengthen and enrich their lives.
Our Purpose To make a difference in the lives of people touched by brain injury by providing opportunities and inspiring hope. Executive Staff Executive Director: Manager Service and Supports: Finance & Admin Manager: HR Lead: Quality Lead: Marketing Lead:
Sue McHattie Kesley Skippen Therese Paksi Kathryn Fitzgerald Bronwyn Doherty Andy Meier
Now you can read NewsLink online with Issuu! If you aren’t on our email list then let us know. What stories or information would you like to see in future NewsLinks? Do you have some great stories or photos? We’d love to hear from you! Email Andy at our office: comms@headstart-abi.com.au
From the ED’s Desk
A
s 2021 marches on and with COVID-19 still affecting all of us to some degree, I’m reminded of a quote from psychiatrist and Holocaust survivor Victor Frankl: “Everything can be taken from a man, but one thing: the last of the human freedoms - to choose one’s attitude in any given set of circumstances, to choose one’s own way.” It’s a powerful reminder that a positive attitude can help people handle the most challenging of situations and setbacks. Whether yours are health-related, emotional or practical, I want to encourage each of you to take keep smiling and make the most of any situation. Ged (pictured below) takes a larrakin - and gentlemanly - approach to life and often makes us laugh. Laughter is often the best medicine! This edition showcases even more of our creative consumers, from furniture art to diamond art, from cooking to drumming. Successful life after brain injury means having activities and hobbies that you enjoy... you’re never to old and it’s never too late to start new ones! Mark has low vision and is following his dream of becoming a chef. Be inspired by his story in this issue. Over the past few years we’ve had several consumers benefit from therapies using new technologies. One of these is virtual reality and we put the spotlight on Shane’s story. You can discover even more new technologies, therapies and products at the Hunter Disability Expo on 21/22 May. This COVID-safe event promises to be the biggest and best yet. Bye for now and stay safe! Sue
Nominate a staff member for outstanding achievement We continue to recognise the work of our staff who have gone above and beyond in any capacity to support our consumers in their daily lives. Please help us thank and encourage our support workers! To make a nomination please contact your Co-worker or email: info@headstart.com.au Have you checked us out on Facebook recently?
Catch all the latest news, stories and rec activities. NewsLink March 2021 I Page 2
Pg 4
Central Coast Stories
Pg 10
Virtual Reality Therapy
Pg 13
About Epilepsy
Health & Safety Update
COVID-19 Fri 21 & Sat 22 May 9am - 3pm
Newcastle Entertainment Centre Showground, Broadmeadow The COVID-safe Hunter Disability Expo is set to be the biggest and most anticipated disability event on the 2021 Hunter Calendar. It brings together everyone in the disability sector, with the aim to enhance the lives of people with a disability. Find out about the latest products, services, technology, aids and equipment... all in one place... and Headstart ABI Services will be at booth 33.
Facilities & Accessibility: • Free parking, including disability • Accessible drop off zone • Multiple disability toilets • Adult changing room with a hoist (own sling required) • Free wheel chair hire • Cafe and seating • All-ages entertainment room Free entry, register at www.hunterdisabilityexpo.com.au
At Headstart we continue to follow best practice health and safety guidelines and staff have undergone training aligned with the NDIS Quality and Safeguarding Framework. If you’re concerned then call the Government Coronavirus Health Information Line for advice:
1800 020 080 (24/7)
Pg 17
The Blind Chefs
What about vaccinations? Disability support workers are the front line of support services, and have been placed at the front of the vaccination queue. However, vaccinations are voluntary and not mandatory. Whether vaccinated or not, consumers and support worker need to continue with safe work practices, including sanitising, wearing of masks and physical distancing. Contact us if you have any questions.
Detailed information about COVID-19 vaccines for people with disability >
Scan QR code with your smartphone camera for Govt. website link
Central Coast Update Headstart on the Central Coast is steaming along with everyone kicking goals and striving to always try new things.
If you’re on The Coast and we haven’t had an activity you like, then let me know and we can add your idea to the calendar. Or just People are engaging in the things come along and enjoy what’s on. Everyone is welcome to join each that they enjoy on the new week. All you need to do is let monthly Recreational activity Calendar, which includes ten pin your co-worker know you’d like to book in or you can call me to bowling, archery, bush walks, BBQ’s, fishing, swimming, sailing, register your name on a particular activity. Come and meet our lunches and gathering with the friendly group of people on the Newcastle Crew. Over the next Coast. We would love to see you few pages of this edition you can there. The more the merrier! read stories about people from the Coast and discover more - Leanne, Headstart Co-worker about what’s been going on. from the Central Coast
Romeo can’t wait... and he’s telling everyone about it!
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Central Coast Feature
“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!
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 My grandfather was driving from you with some family support”. So Sydney to Lithgow, I was in the back I decided to move up here to where seat as a three year old without a seat my sister and nieces and nephews are. belt. When he hit the brakes I went They’ve helped me out a lot. And I flying from the back seat straight through the windscreen and hit a brick mean a lot. My biggest challenge for me has been losing my mum. Some wall. I survived but of course I don’t people say it takes five years to get over remember anything. The doctor’s and something like that but no, it doesn’t. my family told me about it years after it happened. The accident caused me I was introduced to the Men’s Shed up to become an epileptic and I used to here, which was good, but that finished have grand mal seizures. Now I take about two years ago. medication and since I’ve been on the I’ve also joined up with Yerin meds I haven’t had one fit at all. (Aboriginal Health Services) and got I started school at year seven. I first to know them really well. They have had to repeat literacy and numeracy another men’s group who meet every class and so I went and I went and fortnight. We get together and see improved on those two subjects what has to be done, and then we do it. because I knew I wasn’t any good at it. I thought to myself “swing it round”, From then I’ve just been taking and so I did. life every day as it comes. Every 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
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 NewsLink March 2021 I Page 4
“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. I’ve also got my feral cat - a short haired tabby - she sleeps all day right but
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
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Central Coast Feature
Angie at Bateau Bay beach with the penguin sculptures done by a local artist. Angie adores penguins!
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. NewsLink March 2021 I Page 6
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
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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
Central Coast Feature
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.”
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The instructor at Feral Archery was genuinely amazed at Dale’s ability as a first-timer
“I love cappucinos and get two on every shift.”
Dale had paintings displayed in the ‘Mental Health Art Works! Exhibition’ held by Primary Care in 2019
Dale at his favourite cafe Fade Nation barber & cafe in Toukley
Cooking up a storm with CSW Rachael
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 NewsLink March 2021 I Page 9
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.”
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 While it’s been a long time coming, even sit in a chair. He had to be tied Shane’s father John is a lot happier in a chair. Then he showed a lot of with things today. “Shane has shown improvement in the first two years. a lot of improvement since coming He was pretty mobile, he was pretty here for therapy. good then. But in the last twenty five years he really got a lot worse.” NewsLink March 2021 I Page 10
new reality 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.”
Scan the QR code with your smartphone camera to watch a video of Shane doing some VR therapy.
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.
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.
How do you feel your progress? What do you think is improved?
We picked Headstart to be the provider for Shane with Headstart, because they specialise with people who have a brain injury.
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.
Unfortunately Shane follows Eastern Suburbs in the rugby league and he’s very one eyed!”
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.
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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, 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
Rohan is excited about the progress Shane is making.
Harrison loosens Shane up for his therapy session
it’s like to actually be calm and be upright and stable.
Harrison, Physiotherapist
“O
ur work here at Engage VR In terms of how Engage VR work it’s is mainly with neurological always a collaboration. It’s between patients. We do a lot of us and Shane and Shane’s support rehabilitation work with them. networks. So we’re a team together We’re basically your standard and we basically come up with a neuro clinic, but then we also set of goals, and we focus on those have the virtual reality as well. So goals specifically for six weeks and we incorporate VR to challenge then we measure them again and balance, gait, everything like that. see what’s changed. It just adds a little bit more fun to the sessions. What’s been really positive about working with Shane even within Shane came in about twelve weeks two weekly periods is that we can ago. He’s got a massive cerebellar see significant differences. Even issue, and basically we’ve been for simple things like being able to working on a lot of sit to stand, a lot stand up without using any aids and of hip mobility with myself and with taking slow, considered steps. Rohan as well we’ve been working on some gaze focus. So for him in It’s been amazing thing to particular, he tends to get up and be all over the shop and basically watch Shane and evolve and see in his eyes that he be constantly stumbling and really relying on his walker.
knows that he’s making progress. We’re really proud of Shane”.
One of the many virtual environments. NewsLink March 2021 I Page 12
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!”
An effect of acquired brain injury Epilepsy is recurring brief episodes of abnormal electric activity in the brain leading to uncontrolled convulsions and unconsciousness, or just a momentary loss of awareness.
E
pilepsy is a chronic condition produced by temporary changes in the electrical function of the brain, causing seizures which affect awareness, movement, or sensation. It is a condition that affects many of our consumers at Headstart. The effects can be very similar to general seizures, but these usually occur due to causes other than abnormal electrical activity in the brain (e.g. stress, drugs, fever, low blood sugar or sodium). Seizures can vary from a brief lapse of awareness to unconsciousness and jerking convulsions of the body. The majority of recurring seizures can be prevented by medications. Diagnosis of epilepsy One seizure alone is not enough for a diagnosis of epilepsy – it may be a once-off occurrence. In primary epilepsy, there is no discoverable abnormality in the brain and therefore no known cause. In secondary epilepsy, the seizures are caused by an abnormality in brain tissue which can be found by a CT or MRI scan. A brain injury can lead to secondary epilepsy. Links between epilepsy and brain injury Epilepsy has a close relationship with TBI and other brain disorders. It can cause neural damage by itself, and epilepsy is a risk factor for a TBI through a fall or violent convulsion. Epilepsy can also result from acquiring a brain injury. Epilepsy caused by a brain injury does not usually start with a severe seizure. It may begin with absence seizures categorised by memory
All about epilepsy loss, attention problems or other subtle symptoms that may not be recognised as a seizure. Treatment and management of epilepsy The most common techniques for managing epilepsy include: • taking medication on time • avoiding alcohol, coffee and other stimulants • sleeping well and minimising stress • avoiding conditions that trigger seizures • wearing a medic-alert bracelet • ensure friends and family know all about epilepsy and managing a fit. There is frequently an ‘aura’ before a seizure, which can include sensory hallucinations, dizziness or lightheadedness, feelings of panic or déjà vu. On the other hand, there may be no warning at all. Recognising and acting upon pre-seizure sensations can be an important technique for preventing serious physical injury. In some cases, there are triggers that may increase the chances of a seizure, including alcohol, caffeine, missing meals, infections, lack of sleep, flickering lights and missing medication. There is no cure for epilepsy, but seizures are controllable with medication in the majority of cases. Different medications may be tried until the most effective treatment is found. Families and partners can play an important role by ensuring medication is taken when needed and obtaining first aid certificates to know how to provide first aid if a fit occurs. NewsLink March 2021 I Page 13
In a small number of cases, people may benefit from a ketogenic diet – food that is high in fats and oils and low in carbohydrates to stress the body into burning fat for energy. It is only used under strict medical supervision and when drugs are proving ineffective. In severe cases that don’t respond to medication, surgery might be used. It does not guarantee any benefit and there is the risk of brain injury. First aid See a doctor immediately or call an ambulance. A seizure may indicate a serious medical condition. If the seizure is severe, calling for an ambulance is the very first priority. If a person is alone, they need to call an ambulance as soon as they have recovered enough to be able to do so. People should not be restrained during a fit. If possible, they should be rolled into the recovery position and their airway cleared, e.g. no vomit in the mouth. If a person could hurt themselves against nearby objects like chairs or tables, then these should be removed. It is important to ensure the person is still breathing, and to time the duration of the fits as the ambulance officers will want this information when they arrive. When the fit has passed, the person will normally be quite groggy and tired when consciousness returns. They need to rest until they have recovered enough to get up. Republished with permission, information source: Synapse ABI “The Facts” www.synapse.org.au
Rec Ramblings
Headstart’s rec activities keep many of our consumers busy and we don’t have room on this page to feature all of them (Facebook is a good source of weekly updates for this!). Here’s a snapshot of some of the activities over Jan, Feb and March.
Shaun K and Dave C getting out the big guns at Fort Scratchley.
Gloucester Scenic Drive crew having a picnic lunch by the side of the river, nearby the first of 5 exciting river crossings! Part of a scenic drive around the Buccan Buccans (the Bucketts Mountains) near Gloucester. We crossed 5 rivers, and survived to tell the tale!
Fernleigh track bike ride. First time rec participant, Brock C joined James and Austin for a ride on the beautiful track. Shaun K, CSW Jasmine, Callan, Peter, and CSW Steve enjoyed a Sunday afternoon at the footballwatching Newcastle Jets come home 1-0 over Melbourne City. Callan’s heckling game was strong!
Maitland Gaol: Ben told everyone to ‘look mean’ for the line-up photo! Shaun K nailed it, Marika G & Gary H - not so much :)
Goodbye Ben!
Colin R & Jason C questioning their life decisions after being thrown in the Gaol slammer!
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We’re sorry to see our rec coordinator Ben leave us as he follows his dream of becoming a paramedic. But he’ll be awesome! We are currently recruiting for a new reccie. (PS. Kynan isn’t leaving!)
Women’s Group
Women’s Group has been running regularly on Wednesdays from 10am-3pm. With Pat T stepping back from leading Women’s Group (thank you for everything Pat!) we are currently having some special guest Women’s group leaders. Here’s a snapshot of just a couple of events.
“The ladies enjoyed the art group activity last Wednesday. A comfortable location at the Newcastle Tram Sheds with parking access and bathrooms nearby. The art project allowed creativity, and conversation to flow. We all moved to the older part of Marketown for lunch.” - CSW Therese B
“Women’s group salon day! They had a great day with students providing cheap salon treatments at Waratah. Nails and waxing and looking fresh and feeling great.” - CSW Jo-Anne NewsLink March 2021 I Page 15
Sharing is caring Headstart’s Community Education Team regularly share their stories at Traffic Offender and Drive Alive Programmes, Universities and schools. Kurri Kurri High School provided us with some fantastic feedback which is an encouragement to our amazing CET team.
Sara de Silva
Head Teacher Wellbeing and Engagement Kurri Kurri High School
“W
e run a Smart Choices program in conjunction with our local community services. It runs right through from year seven to year twelve. We have a really great relationship with Headstart who come in and share their stories and experiences with our students.
Will Doran
Youth Development Officer, Cessnock district
“W
e’ve been working with Headstart for probably 10 years now on various programs around crime prevention, trying to get young people to make smarter choices for brighter futures. We've had the pleasure of lots of people coming from Headstart to talk about their brain injuries, how they acquired them, and what people could do to avoid those sorts of injuries in the future. It's really has a fantastic impact. I notice that the young people are very quiet when they're listening they give lots of respect to the people with acquired brain injuries who are coming in to talk. They students have a thirst for knowledge around what's happened to those people and how these injuries can be prevented.”
We’re not there to scare students, we’re there to give them tales of real life and it’s really about harm minimization which is what wellbeing education is really targeted at. I think it’s a way to show young people the impact of acquired brain injury. Especially young people are statistically shown to engage in high risk taking behaviour because they think it’s not going to happen to them. So having someone stand up in front of them in real life and share their story is powerful for young people to see. It’s much better than seeing a YouTube clip with someone from another country or another context. The stories really hit home. It also shows that there are support services in the community to help people with acquired brain injury, which they may not have known about before. When we survey our students, they often say that it’s one of the most engaging presentations that they have. So that’s why we keep getting them back year after year. When we run wellbeing focused presentations the stories the students really are aware and awake at those times! What Headstart’s CET team provide can’t be matched by anything virtual that’s out there.”
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The blind chefs “T
he main thing that’s inspiring me to follow down this path is that I’m just really loving it and want to learn more. I want to learn about all the different sorts of foods and get a lot more cooking experience. The reason I want to go down this path is so I can gain a whole lot more experience and become a better chef and hopefully find a career in it.”
Mark’s loss of vision following a brain tumour meant he wasn’t sure he’d ever work again. However, since contacting Ian Edwards at The Blind Chef bistro he is as inspired and inspiring - as ever!
But it hasn’t been an easy journey to this point. Mark has lived at home with his Dad ever since his brain tumour was diagnosed seven years ago. “If it wasn't for a car accident I wouldn’t have been here 12 to 18 months later because that’s how they discovered the tumour. I was a delivery person for a computer store and on my way to my second job for Steggles chicken when my life changed. They couldn't put a time limit on how long the tumour had been there because it was one of the slow growing ones. I had blurred NewsLink March 2021 I Page 17
spots in my vision and just got worse as time went on, and when I completely lost it, it changed my life. It wasn’t for the better.
It sent me down the path that nobody likes going down.
Since Christmas 2014 I’ve had seven lots of brain procedures to remove some of the tumours that they found, but some of it they can’t do anything about. It is a struggle some days, but the people I’ve got in my life make it so much easier. Actually starting work again really helps and gives me a clear train of thought.
So while I do have the loss of vision, today the chronic nerve pain and constant headaches are the main things that really get to me. What keeps me going is doing things with my support workers. It gives me something to look forward to, because I’ll be out and about not sitting around home doing nothing. Now I’m out gaining more independence in the community.
“Here at the bistro I’m just doing one day a week at the moment. When I feel ready to do two days a week I’ll speak to Ian and we’ll try and organize something. Because he knows that I absolutely love my surfing he said he’ll never interfere with that in any way.
I started with Ian back in early December. He seems like a top bloke, easy to talk to and easy to get along with. For as long as I’ve been doing it he’s been a great mentor and I’m already learning so much.
With my vision up close is better and a whole lot easier. But the further and further it gets away that’s when things start getting blurry and hard to make stuff out. So I do ask for help to find those certain things or get shown the right places to put stuff away in the kitchen. I’m learning the proper way to slice and dice all the meal preparations up and just all the basic and general kitchen duties really. All the safe methods and safe ways of how to use all the cutlery so you don’t cut any fingers off.
When Ian thinks I’m ready to do more then he’ll start to teach me how to do the cooking side of things in the kitchen.
It just feels good to experience a work environment. The new people you meet and friendships that you build.
On miserable days when the surf’s crap I’ve started doing cooking lessons at home with my support workers. Not only for my own benefit but also to help dad. Now he doesn’t have to worry about finding something for tea and cooking it up when he gets home from work. Hopefully I’ll end up teaching my carers how to do it one day!
At home one of my favourite meals to cook up for me and dad is a spinach and ricotta quiche.
I get four, sometimes five days of support a week. Headstart means a whole lot, they’ve helped me so much. If it wasn't for them God knows where I’d be. I’ve been with Headstart since the end of 2015. Over that time I’ve built such a great rappore with my support workers and they’ve become my extended family and little brothers and sisters that I never had. My support workers have helped me get back into the bodyboarding which I love and that helps with the mental health side of things so much. It’s like I’m in a completely different place while I’m out there with my carers having fun and catching waves and seeing dolphins. That’s when I’m loving life and I just live one day at a time.
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Mark builds strong relationships with his support workers, like Daniel.
When not in the kitchen Mark loves his bodyboarding - and so do Headstart’s support workers who join him!
My life has definitely changed for the better because I’m getting back into the things I love again. I’m doing things that I never thought I would do again before anything happened.“
Ian Edwards started “The Blind Chef” bistro after losing his sight through a detached retina.
“I
was unable to continue with what I was doing due to not being able to see”, says Ian.” So we started The Blind Chef project in 2017 to give hope to other people having the same problem. Also to get myself back in the kitchen, and at the same time hopefully help people with cooking life skills and possibly a future in hospitality.” Ian has plenty of experience as a chef having cooked in Newcastle and Sydney since 1985.
“I don’t know anything else other than this. I think I still have a lot to offer, so I thought trying to impart a few skills to other people would be helpful.”
“Mark contacted me and spoke of his passion for cooking. So he came on board a few months ago and works here every Friday with us to learn a few things each time and see how we likes it.
Mark puts 100% into what he does, and he's going very well indeed. Being legally blind is challenging, of course, but it's what you get used to. The way you’ve been trained helps and once you make a mistake you don't generally make it again.
Mark has got a future in the kitchen. He loves it and he's very meticulous in what he does. Whether he stays in hospitality, or whether he's just going to use it for life skills to make himself more independent at home. It'll be a good win for him either way.” NewsLink March 2021 I Page 19
The Blind Chef bistro is at The Boolaroo Bowling Club and The Cardiff Bowling Club, Wednesdays to Sundays for lunch and dinner. Visit www.theblindchef.com.au for more info. Ian often has employment opportunities for staff and trainees, especially people with low vision. Get in touch to find out more.
Scan the QR code with your smartphone camera to watch a video of blind chef’s Mark and Ian cooking up a storm!
Loving and learning Christine’s love for and devotion to her husband is evident in the way she talks about him – “I love him despite the Parkinsons” – as well as her actions.
“M
y husband Doug has Parkinson’s disease and he has his own supports with Baptist Care who help with his personal hygiene and showering. He’ll be doing social outings when his package builds up. We were married in 1997 and had three kids, Samuel (21), Hannah (19) and Sarah (17). Sam still lives with them and is studying to be a screenplay writer. When finished he may eventually move to America. If he does I’ll miss him. My brain injury happened to me when I was a baby, so I don’t remember anything. I have a slight intellectual disability but I’m still able to get around and do things. I don't drive a car so I catch trains and buses. So physically I’m allright, it’s more mental.
I was still able to work years ago, when I was single. I used to go to work as a cleaner in a nursing home in Wyoming. I have a mild case of epilepsy, and so I’m on medication for it. It was in 2019 that I got taken to the hospital for epilepsy.
I’m nearly finished it, just two weeks to go! I‘ve been with Headstart quite a long time. My regular support worker Kath and I go regularly to our favourite café in Cooranbong which is quite close to Morriset. I also had Beth support me a couple of weeks ago while Kath was sick.
As far as my goals go, I want Things we do are changing and to work again and become an office assistant in an aged making the bed each week, doing the washing and other things at care facility. I love to study and so I’m working hard towards that. I don’t have internet at home so I go to APM (disability services and support organisation in Toronto). It’s just a stop or two on the train. Besides computers I've recently been studying a course called customer engagement. NewsLink March 2021 I Page 20
home. I get help setting routines. One of the big things we’ve done has been getting the house and the yard sorted out.
I also really like a support worker for the company and conversation, that’s very important to me.”
Two of the footbridges that cross the beautiful Dora Creek at Cooranbong
It takes two to tango... CSW Kath shares some of her own experience in Christine’s purposeful journey.
“C
hristine is a very capable woman. She’s very independent, probably because her injury happened as a baby. So she really hasn’t known any different. Christine likes having a chat. She misses female contact because she’s got a son and husband at home. Her mum used to live with them until she passed away some years ago.
Christine is a very resourceful woman and does an amazing job keeping up with the housework, the inbetween stuff. Doug’s had personal care supports for a couple of years now and that’s really helped.
Christine enjoys going to her 7th Day Adventist Church. Several friends there have kept in touch throughout 2020 and ‘the lockdown’, with her Pastor visiting When I met Christine she seemed on occasion, during times when it was not possible for Christine and a bit overwhelmed with the Doug to go to church. housework. So it was a fairly rapid journey to get the house When the Coronavirus lockdown first began, Christine was organised, get the overgrown studying for a Cert III in Business yard sorted out and fixing and Administration at Gosford the clothesline. Even more importantly, supporting Christine TAFE 4 days a week. After lockdown, this was no longer to know that she needed to get possible. Towards the end of last help for her husband Doug. year, Christine’s employment She was only just coping and he agency suggested changing had no diagnosis or supports. NewsLink March 2021 I Page 21
courses – since it was unknown when Gosford TAFE would reopen for students. Ever the adaptive problem solver, Christine agreed and is now studying for a Cert III in Customer Engagement online – with the help and support of her job provider... but Covid hadn’t finished messing with Christine’s learning plans. As of January, when new coronavirus cases emerged again, Christine was no longer able to attend the APM offices in Wyong to use their computers. So Christine booked herself into her local library to use their computers. However the library then became unavailable so Christine now goes to the local Multi-Purpose Centre to use their computers and wifi. It’s clear that Christine is a very resilient and determined student!”
Beating the blues
I had a fractured hip and pelvis, four rib fractures and a punctured lung. Plus a brain injury. It was a post traumatic brain injury and I get muddled with my word finding. I get fatigued really easily and I get headaches constantly. But mainly with my words. I can’t pronounce things properly and I get tongue tied easily so I say the wrong thing. I have to go in regularly and have procedures done like nerve blocks done on my back, for my backache. I still see a physio regularly and a psychologist to work through things too. The psychologist helps me work through things and helps get me motivated. I sometimes go through ruts where I just go to bed when Lyn’s carer comes in.
That’s where things like the drumming help me get out and do something. I care for my sister Lynette who also get support from Headstart. Lyn had a grade five brain aneurysm and so my husband and I look after her. She lives with us after we took her in seven years ago. When Lyn has her support I get to go out and do a bit of walking. Lyn’s up all the time though the night, which isn’t easy. I do get help with support, but I am helping my sister 6 days a week. Besides Headstart, other help we get is some personal care for two hours a day for Lyn and I get a cleaner once a week to help.
While Deb is supported by Headstart she also supports her sister as a fulltime carer. Some days Deb just needs a break and that can take the form of a djembe drum.
“I
’ve done drumming on and off over the years with Headstart. We use djembe with an African style of drumming. I really like the sound! We play along and follow the instructor and sometimes we can add our own bits too. It’s very relaxing. Over the years I have done other rec activities and my main one has been the photography group. That hasn't started up yet after COVID but I did enjoy it. I’ve done some exhibitions with Headstart.
I have support from Headstart one or two days a week now. We’ll be doing gardening together today. I mainly just do pot plants and succulents, but not a veggie garden. When I had my car accident I was working at Port Stephens Council doing gardens, mowing lawns, or looking after cemeteries. So I still enjoy gardening.
My brain injury was in 2003 and I was in hospital for about 14 weeks. After I came out I went to the Brain Injury Service (BIS) on Darby street as an outpatient for about a year before they put me onto Headstart. Headstart were much smaller then – I think only about 4 people in the office including Sue, Kesley, Adrienne.
I would describe my brain injury as being invisible. People look at you and think there’s nothing wrong with you. It doesn’t bother me so much now as I don’t really go out much. My sons who were 15, 13 and 12 at the time of my accident. It really affected everyone. My husband is a big help doing all the cooking and all the shopping. He does all the financial side of things and the banking. I don’t do any of that anymore. I’m not allowed to drive because my peripheral vision is impaired. So they wouldn’t give my license back to me because of my eyesight, although I did have bad eyesight before my accident.
I overeat because my pituitary gland is damaged. My thermostat is out so I get hot all the time. Summer is difficult for me, and so I love winter.
Headstart has grown and it would be good if more people were aware of them. I’ve come across people who have had some type of brain injury or a stroke. They were unaware that there’s places like Headstart that they could go. I have a long involvement with Headstart. I’ve been on the committee over the years, I’ve helped with NewsLink and the rec calendar. It’s only recently that my psychologist said it would be good for me to have regular one-on-one support so that’s a new thing, whereas previously I’d just get support for three or four weeks at a time. The idea is to help me to get out of the house or we do gardening together.”
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Calling all artists If you’re making any kind of art (like drawing, colouring, photography, poetry, woodwork ceramics, sculpture, singing or dancing...) we'd love to know and share your creativity. Get in touch today! Call us or email: comms@headstartabi.com.au
Karl’s on target
Karl is getting more confident with his release aid and sight using the Feral Frame (at Feral Archery) to shoot. It’s great to see how his form is improving!
Have you checked us out on Facebook recently?
Catch even more of the latest news, stories and rec activities. NewsLink March 2021 I Page 23
Bag this!
Headstart jute (hessian) bags are available now. Size 35cm H x 40cm W x 20cm D, with double 17 inch handles. Contact us or pop into the office to purchase: $7 each, OR $6 each for 2 or more.
Happy feet for Mark!
You could also say that it was “one giant leap for Mark” (or was he simply over the moon?) when his long awaited new shoes arrived and were fitted by his Podiatrist. It’s lovely to see Mark so happy and proud to show them off!
When he’s not out walking Mark loves creating mosaics at home and he has a big table set up for it. Love your work Mark!
“I had to wait a long time for them because they came from overseas. They are especially made, they had to be widened and now that I’ve got’ em on they’re fantastic! Heaps better yes. I got specially made inner soles moulded to fit my feet and straighten my walk up. So I walk a lot straighter. Much better. I do a bit of walking everyday. They’re really comfortable. It’s great, I love it!” - Mark F
Making a Complaint If you would like to continue receiving NewsLink, become a member by contacting us on 4965 4420 for a membership application. Our membership year starts from the 1st July. Your contributions to the newsletter are welcomed, and we will keep you up to date on all the issues, activities and the developments in services.
You have the right to complain under the Community Services (Complaints, review and monitoring) Act 1993. If you have a complaint there are steps to take. At each step, every effort will be made to resolve your complaint before going to the next step. Step 1. Talk with the person concerned Step 2: Talk with Co-worker/staff member Step 3: Talk with Director Step 4: Talk with Chairperson Step 5: Talk with Committee Step 6: Talk with an outside service
At each step you have the right to have someone else present if you wish. This person is called an advocate and may be your friend, family member, staff member, paid advocate or someone else. If you wish Headstart can help you locate an independent advocate.
NewsLink is produced by many people at Headstart ABI Services. We welcome contributions from everyone: an article, letter, photograph, poetry, etc. We also welcome suggestions as to articles that we could write about for future issues. We appreciate feedback on things like the kind of stories, size of our typeface, layout and general appearance of our newsletter.
“Believe you can and you’re halfway there.” - Theodore Roosevelt
HAVE YOUR SAY on these, or any other issues by writing to us at: Headstart ABI Services 95 Turnbull Street HAMILTON NSW 2303 or email: comms@headstart-abi.com.au NewsLink March 2021 I Page 24
