Volume 27 Issue 1 Sep 2021
Locked down but not out
Setbacks won’t deter Kate’s determination, with the help of her mum Carol, pg 16
We can’t do without carers
Support for carers, Pg 10
On ya bike Neil!
Living life to the max again after stroke, pg 12
NewsLink Sept 2021 I Page 1
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. Leadership Executive Director: Manager Service and Supports: Finance Manager: HR Lead: Quality Lead: Office Administration: Marketing Lead:
Sue McHattie Kesley Skippen Therese Paksi Kathryn Fitzgerald Bronwyn Doherty Kathy Provost 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
Nominate a staff member for outstanding achievement
From the ED’s Desk
W
ith so much of the past year comprising of lockdowns, restrictions, vaccinations - and for many frustrations, loneliness and isolation - we so hope that things will ease soon. It continues to be an extra challenging time for so many people and times like these can test all of our resilience and take the wind out of your sails. ...and so sometimes the only thing we can do is to find ways to build up your own resilience. That doesn’t simply mean you just need to ‘try harder’ but rather be mindful of the strategies that you can put in place to help you become more resilient (see page 8 for more). If you are looking to get more involved in different types of contact with other people then checkout our online rec activities with Nikki, our rec co-ordinator. In this edition we also want to acknowledge some very amazing people... Carers. As National Carer’s Week approaches (10 - 16 October 2021) we want to say a massive “Thank you” to each and every one. You do amazing things every day with love and care. Whatever your situation or support needs are in your caring role, from services to information and practical support, counselling, peer support or advice – check out the Carer Gateway’s website or call them on 1800 422 737 to access the free services available. The Carers connected to Headstart are the unsung heroes. The following is a quote from the late Christopher Reeve, the American actor who played Superman and became paralysed after falling from a horse. Riding was one of his greatest passions. “A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” It doesn’t take a superhuman to be a hero, so be encouraged and know that you are valued. Till next time - Sue PS. Lockdowns can test our patience, but with some extra time on Renai’s hands she’s been able to get her hair done at home... probably more than once! Renai has also been video calling her mum, Ailsa, who is at an aged care facility.
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 workers! To make a nomination please contact us or email: info@headstart.com.au NewsLink Sept 2021 I Page 2
Pg 6
Meet our COS
Pg 7
Why HMRI?
Pg 8
Resilience matters
COVID Update
Pg 24
Rec Roundup
Feeling isolated, lonely or anxious?
With ongoing COVID-19 restrictions, consumers please bear the following in mind: From time to time you may find that we need to make changes to the supports you receive due to changes in covid restrictions or covid testing requirements; this includes a change to support workers who normally work with you, we will try to minimise these disruptions the best we can.
Some face to face activities, particularly Rec, is currently on hold but we will recommence these as soon as we are able to do so following covid safe guidelines. To help get you off the couch we have put together a ‘Rec at home’ calendar (see pg 24 for more info). We are able to meet with you virtually. If you would like to have a Zoom meeting with your Coordinator, just let them know Not being able to see your family and friends, go to work or socialise in the community can be tough. If you are feeling isolated please speak with your Coordinator so that we can work with you to ensure you receive any additional supports you may need during this time.
It’s our priority to keep consumers, families and our staff safe. We have protocols that staff need to follow when working with each individual, these include: Checking that you and anyone else in the house is well before entering your home, if someone is unwell the CSW will contact the office for further advice on how to proceed prior to providing services Wearing a mask – staff must wear a mask while in your home, when travelling with you or out in the community eg. GP, shopping. If a staff member has a medical exemption we will let you know prior to their shift so you can decide if you are still happy for that CSW to continue to work with you Sanitising and washing hands – we encourage our staff and consumers to ensure that they keep up good hand hygiene while they are working Encourage everyone to get tested if feeling unwell.
If you have questions about COVID vaccination please speak with your health professional or a family member who can provide you with the appropriate advice and support in making your decision.
Information about vaccinations and current restrictions is also available at: NSW Government - www.nsw.gov.au/covid-19
Disability Gateway - www.disabilitygateway.gov.au/coronavirus NewsLink Sept 2021 I Page 3
At Headstart we know that lockdown can be a difficult time, so you may like to know about this Hunter-based service.
A free friendly chat
Volunteers are available for a friendly chat. They are not health professionals or counsellors but they have time to listen. If you need specialist help they will assist you in finding that help. Hello Hunter also offer free delivery of essential food or medicine if a temporary situation means you can’t get to the shops.
4948 6837 Hello Hunter is not a crisis or emergency number. If you are in immediate risk of harm please call one of the following numbers. For EMERGENCY call triple zero 000 or LIFELINE 13 11 14
Meet a few new Headstart team members... Finance Assistant
Natalie
I love living in Newcastle! Have lived in Kurri, Raymond Terrace and Merewether. Went to the University of Newcastle studying a Bach of Commerce. Started at Hunter United Credit Union and other accounting firms but have felt the most reward from working at the Hunter Women’s Centre and now at Headstart where even though numbers can be boring, there is a better outcome being provided to people that need it. I have two beautiful children who drive me nuts but bring the most joy to my life. I love seeing spending time with them and getting all the cuddles!!
Get to know Natalie Favourite food: Ice cream! Favourite movie: The Royal Tenenbaums Favourite band/music: Garbage, Chvrches, Julia Michaels, The Carigans, Halsey, Sia, Mallrat, Clean Bandit, Vera Blue… list goes on Favourite sport/team: Roller Derby Favourite cartoon character: Sailor Moon Favourite hobby: Lego Favourite place on earth: Anywhere there is pool with a swim up bar If you could be any animal? Llama If you could meet someone famous? No one. I go completely mute when I meet anyone famous. Examples being meeting Helen Razor and The Sandman from Triple J in the 90’s. Couldn’t talk. LOL. Craziest/silliest thing you’ve done: Going to the 1997 Big Day Out in Sydney, and catching the train home with friends at 2am. There were some interesting people!! Three words to describe you: Loyal, joker, curious.
Office Administrator
Kathy
I have two beautiful children 25 and 22. My husband and I love to travel.
Co-Worker
Alan (again!)
I grew up in country NSW to an Aussie dad and a Kiwi mum. I’m part of a We used to travel family of 5 with each of us living in on a motorbike, now we have a different towns or cities (or countries) caravan and spend every weekend these days. I spent my early 20’s we can camping and travelling this working in hospitality (bar life) all with beautiful country. the purpose of funding overseas travel. My father had an acquired brain injury I’ve now visited 22 countries and have lived in New Zealand and Canada. I’ve and passed away when I was 13. worked in Community Services for After 33 years working in the public around 4 years including previously sector, I wanted a more personal being a Co-worker at Headstart. After rewarding career and wanted to give returning to Newcastle earlier this year, back. I feel truly blessed to be part of I was re-employed as a CSW before resuch a caring, life changing group of joining the Co-worker ranks in July. people at Headstart. It’s great to be back!
Get to know Kathy Favourite food: Seafood Favourite movie: The Last Samurai Favourite band/music: BonJovi, James Taylor, Neil Young, Eric Clapton, anything 70’s and 80’s but more recent Morgan Evans, Keith Urban, Ed Sheeran, Niall Horan, Sam Smith Favourite sport/team: Used to love V8 supercars but not the same without Craig Lowndes Favourite cartoon character: I’ll have to get back to you! Favourite hobby: Camping, Kayaking and fishing Favourite place on earth: Hawaii, but love the red centre of Australia If you could be any animal? Bird. Love watching them fly If you could meet someone famous? Jon BonJovi Craziest/silliest thing you’ve done: I’m a bit clumsy and have fallen into the water several times trying to get into my kayak, sometimes straight into mud Three words to describe you: Caring, loyal and talk a lot : ) NewsLink Sept 2021 I Page 4
Get to know Alan Favourite food: Thai Favourite movie: 2 Fast 2 Furious (R.I.P Paul) Favourite band/music: Anything with a beat Favourite sport/team: CrossFit Favourite cartoon character: Jay Bilzerian Favourite hobby: Mountain Biking Favourite place on earth: Mexico If you could be any animal? I was a bit of a sloth in school, so a sloth If you could meet someone famous? Bob Hawke Craziest/silliest thing you’ve done: Took a flight to New Zealand for a weekend just to go to a music gig Three words to describe you: Bald but bearded Describe your first month (back) at Headstart It’s been completely new, but completely familiar at the same time. I’ve enjoyed getting to know our new Consumers and CSW’s, and reconnecting with those I knew previously. My new desk was also something to get used to (briefly), before having to work from home.
Accessible Beaches Once lockdown is over you’ll likely want to get out and about, and who doesn’t love the beach?
Create a COVID-19 check-in card COVID-19 check-in cards are for people who can't use the COVID safe check-in tool at venues. Print and use your card to check-in at certain COVID Safe venues.
apply.service.nsw.gov.au/covid-checkin-card/
It’s worth looking at the National Beach Directory for accessible beaches and researching booking options for equipment.
The program supports people with a disability to access beaches by organising equipment incl. beach mats and mobi-chairs for beach groups to use. Now over 50 accessible beaches are on board the program including the iconic Bondi Beach in Sydney. Check out the accessible beaches directory on the Accessible Beaches Australia website.
www.accessiblebeaches.com or call 1300 721 328
Get ya Headstart gear! 500ml Thermo drink bottle
Cap
$12
$10
$7
$6 for 2 or more
Headstart’s attractive and durable hessian bads are perfect for all your shopping needs. Size 35cm H x 40cm W x 20cm D, with double 17 inch handles. Contact us then pop into the office (COVID safe) to buy these items!
Have you checked us out on Facebook recently? Catch all the latest news, stories and rec activities. www.facebook.com/headstartabi/
NewsLink Sept 2021 I Page 5
Meet Dianne
Our dedicated Co-ordinator of Supports After a year in the CoWorker role, Dianne is now Headstart’s Co-ordinator of Supports (COS). Two months into the role we asked Dianne some questions to get to understand what she does.
D
ianne, you have a background that helps you in this role, right?
Yes absolutely! I worked in the Local Area Coordination (LAC) role at Vinnies for four years before I came to Headstart. That’s brilliant because at the time they were the NDIS Partner and that gave me a solid foundation and I really understand the nitty gritty of NDIS. This helps me to know how best to address any NDIS arguments or any reasoning why you may want to have something in a persons plan. Dianne, what are the benefits in a dedicated COS role at Headstart?
I’ve certainly being able to concentrate a lot more and get into the detail that I didn’t have the time to do before. Some of the topics of funding are really challenging and you need to be able to concentrate without interruption. For instance, home modifications require a large amount of work to actually get them ready for the decision to be made. The NDIS planners often require a lot of detail to make a decision, so by focusing on areas such as builders consultations - and ensuring that quotes are current means things can happen quicker. How many people are you helping?
At the moment I’ve got about twenty people for COS and I’m getting more and more as I go. When you first start you’ve got to do a lot of work to get to know how the plan is going and what the person’s goals are. They might have goals on the plan but they might be
interpreted a little bit different by the consumer. I met a guy today that was really good because he stated that his first priority was the support worker, then the next was his meals and then OT, lawn mowing and physio. He isn’t able to speak very clearly so he was pointing at different things to help him communicate. I thought “good on him!”
But generally a COS it’s not something you can request, as not everyone will funding for a coordinator in their plan. Therefore you can’t really just request one because it’s the NDIS who decides whether you need it or not. COS is an NDIS specific role.
Are they all supported by Headstart?
With regards to the NDIS, it’s really important for Headstart to have no bias shown towards our own company. So I need to be transparent in that space to make sure of “is the best thing for the client, and how do I find that person?”
What have been some early wins?
Do you only do COS for people with acquired brain injury?
I currently have two people who I’m purely doing COS for. They get all their support from other providers.
A big win is that I’ve simply got more time to understand what consumers would really like to do. I’ve had a few wins with getting people into housing, which is of course a big victory for them. Sometimes people are in that vulnerable, unpredictable, often homeless position. I’ve been able to find community housing or housing with the New South Wales housing. I’ve also built some relationships which has helped me move forward with consumers who may have more challenges, so that’s good. How does someone find out about using a COS? The NDIS first need to make an initial referral, but if a consumer finds that their coordinator isn’t working for them - or they’re not getting feedback or a response from their COS - then they would be able to make a change. NewsLink Sept 2021 I Page 6
Yes, Headstart specialise in this area, and that’s a good thing because then you get to know the neuro psychologist or the neuro OT’s, and it’s easy to refer because you get a relationship with some of those people. Because I know the therapists, people get the support a little bit quicker and we can move forward. With brain injury it’s very individual. I believe that you don’t make any assumptions about someones ability until you get to know them. It can be really challenging to be able to identify exactly what they’re really having a problem with. What independence might mean to one person doesn’t mean the same to another. Listening is the key!
Why HMRI? The Hunter Medical Research Institute and the University of Newcastle do valuable work to help people with brain injury. Following our June NewsLink story about Mark and Tracey, we continue to highlight the opportunities that often become available at HMRI. These include trials and opportunities to volunteer in research.
“W
e live in New Lambton and if you’re going to suffer from a stroke you couldn’t possibly live in a better suburb than having the John Hunter Hospital at your doorstep. The HMRI there do some absolutely amazing studies, and we’ve been involved in a few.
One of them in particular was a real game changer in our life. Mark took part in a fatigue study where they would trial a drug called Modafinil. When Mark was taking part, the study had you taking the medication for six weeks, and it was either placebo or the medication. You didn’t know which one, and you know they wouldn’t have known which one because to do the research properly they wouldn’t know either. But we knew instantly when Mark did his first six weeks. He said the fog lifted, and he was so much more lively. He was definitely on the drug, and we could see a complete change in Marks fatigue levels.
So much so that when he started taking the medication he said to me, “I just feel alive”.
The hardest six weeks was going on to the placebo knowing that he’d already had this feeling of “aliveness”, and then having to take that away from him. That particular trial is still going. We’ve still got our fingers crossed that it will get through because one of the biggest issues for Mark since his stroke in 2002 is
fatigue. Even for a very mild stroke - like the first one he had - still probably took Mark six years to get his energy levels back. So when there’s a catastrophic stroke you really need something to help you with energy. Especially when the very first thing they’re trying to do in hospital is to get you doing rehab. You’ve got no energy to do anything, let alone participate in the HMRI therapies. Often for people it’s the only time you are offered these therapies. If you can’t participate in them then you’ve got nothing and you’re too fatigued, so that’s a shame.
We will be able to access that particular medication through private script, but if it could be on the PBS, that’d be great for us.
There’s absolutely no way I can take that medication away from Mark at this stage because it really does make a big difference. Other ways that Mark deals with fatigue is: rest, sleep, recharge. But for Mark, the right medication makes a big difference because fatigue is still a struggle every day.
The medication has meant that Mark could do therapies during the day, have a sleep, then do some more work in the afternoon, and he still have ‘give time’ left for the evening meal with the family. I really think that you need the energy to be able to do some of those things. You’ve got to have the energy to do the good stuff as well, like having a meal with your family, going to things like concerts, down to the beach, going up to Hawk’s Nest to have our holiday breaks. We are still able to enjoy those things as a family.” - Tracey
Interested in joining the Hunter Stroke Research Register? The Hunter Medical Research Institute needs people who have had a stroke or transient ischaemic attack (TIA) to help researchers make new discoveries. You can help them to find new ways to prevent strokes, and to advance stroke and TIA rehabilitation and recovery. By registering you will join a list of people with stroke or TIA who will be contacted when researchers need people to participate in important research. Scan the QR code with your smartphone or visit the website: www.hmri.org.au/stroke-register NewsLink Sept 2021 I Page 7
Resilience
noun 1. the capacity to recover quickly from difficulties; toughness. 2. the ability of a substance or object to spring back into shape; elasticity.
NewsLink has always featured remarkable stories of courage, hope and determination - despite the very real challenges. These attributes don’t always come easily, and resilience is not simply a case of ‘toughing it out’. Here are some very helpful strategies on dealing with traumatic brain injury (TBI) that are also relevant to many with an ABI.
P
sychologists define resilience as the ‘process of adapting well to challenges, stress, or trauma’. When we are resilient, we are better able to respond to adversity, and can even experience personal growth after the traumatic/stressful event (this is sometimes referred to as posttraumatic growth). After a TBI, there will be things that cannot be changed (for example the injury severity), and the person may need to adapt to those things. But there will also be things that can be controlled or modified in some way. Being resilient is partly about identifying what you can and can’t change, and learning to adapt to the new circumstances. It also empowers you to grow and even improve your life along the way. Being resilient doesn’t take away negative feelings such as distress or
anger, and people who are highly resilient don’t necessarily feel strong or as if they are coping well. And the road to recovery can still be rocky even when someone is highly resilient. It is very important to remember that while some factors might make some people more resilient than others, resilience is a characteristic that can be strengthened. Increasing resilience is like increasing your fitness – it takes time, and needs to be actively focused on. Some of the ways we can increase resilience include: • Building connections: developing good relationships with people who can understand your situation, and who will be supportive. This might include family or friends, or some other community group or organisation. • Self-care: making sure you are getting enough sleep, regular exercise, and having a good diet all help to improve mental health in general, and can increase resilience. • Looking after mental health: this can include things like practicing mindfulness or meditation, and using psychological or counselling services. Recognising the early signs of mental health problems and taking steps to stop them developing further can also be helpful. NewsLink Sept 2021 I Page 8
• Acceptance: while it is important to try and overcome challenges, it is also helpful to recognise the things that can’t change, and try to accept them. This allows you to focus on the things you can change, and to set new goals. • Optimism and gratitude: it can be difficult to see positive things in challenging times, especially if you’ve experienced a dramatic change to your circumstances as a result of a traumatic brain injury. But reminding yourself to be grateful for the things you still have that bring you joy and happiness, and trying to maintain a positive outlook to the future, can be very beneficial. • Setting goals: having a goal to work towards can be helpful, but it is important that goals are realistic. Sometimes it is good to set a large goal, but break it down into smaller steps. • Being proactive: trying to come up with solutions to problems, actively engaging in social activities, and asking for help when needed. Source: The Wicking Dementia Centre (University of Tasmania), Understanding Traumatic Brain Injury MOOC, 2021.
Craig Johnston: resilience personified In his biography “Walk Alone” Aussie soccer legend and Headstart Ambassador Craig Johnston is described as ‘a tireless runner who gave always 100 per cent for the team’. The book details the dramatic twists and turns of Craig’s soccer career and personal life. His other endeavours include sportscaster, businessman, entrepreneur, photographer and family man. Even though Craig says that he’s been blessed, there have certainly been period of struggle and challenge: from football politics and health issues to bancruptcy and even a period of homelessness. We bring you a few short excerpts from Craig’s biography to give you a little insight into this colourful man’s character.
winter to trial as an apprentice with Middlesbrough FC. His parents selling their family home in Australia to fund his venture added to the pressure.
“It took less than half an hour of training for the awful truth to be revealed. The idiot from Australia couldn’t play. It came down to a simple choice: either learn to play properly, or get on the next flight home.”
This realisation fuelled Craig’s determination to succeed and remain with the club. He did chores, cleaning, polishing club boots, and even lived At six years old Craig was diagnosed in a coal shed at times. Craig began with osteomyelitis, an inflammation a gruelling training program: four or that attacks the bone marrow and five hours every day as the carpark almost required amputation of his leg. wall became his friend and he dribbled Thankfully surgery was successful as through garbage cans. Exercise by they scraped the bone of all infection exercise Craig worked through the and Craig spent seven months in fundamentals footballing skills as he hospital, missing a football season. On recalled his father’s words to ‘make leaving hospital he was warned to avoid the ball talk to you’ and ‘Practice. robust sports and definitely no more Practice. Practice makes perfect.’ soccer. The illness only fuelled young Craig collapsed into bed at the end of Craig’s enthusiasm to succeed. each day and on his fortnightly reverse charge call home he reassured his “When I felt strong enough I resumed mother, “Yes Mum, I am still washing training with Lake Macquarie, still my osteo scar with Rexona soap.” mindful of the scar on my leg. With plenty of fresh air, lots of exercise and “My goals were now clearly defined and self-belief I was back as good as ever.” I hated myself when I didn’t reach them. Fast forward to fifteen years of age. While a star back home, Craig soon learned that the standard was much higher on arrival in the bitter UK
My training investment slowly started to show a profit. In the pick up games I was still the last player selected, which indicted what the others thought of
me. But I was no longer intimidated. The odd pass went astray but not by so much. At least I was contributing. And nobody could catch me for sheer speed or mobility.”
The next season Craig got a trial game for the Middlesbrough under 19’s vs Leeds United. The great Jack Charlton tongue lashed the whole team after a poor performance, singling Craig out: “As for you, you’ll never be a footballer while your arse points to the ground!” What did Craig do?
“There was no time to lose. I was desperate to prove him wrong. I stepped up my private training. I rose even earlier and ran the 3 km’s to the Hutton Road training ground to arrive well before the rest of the squad. When the other boys would be heading off later for a drink or a game of snooker, I’d take the ball into the carpark and practice some more. Mine was a monklike existence with one objective: to play first division football.” And so Craig’s slow and steady progression to achieve his dream continued. There were more setbacks and injuries - but also much to celebrate - as Craig went on to play for Middlesbrough and Liverpool first teams and cement his place in Australian soccer folklore forever.
“A boy from Lake Macquarie scored at Wembley. That, in itself, might inspire others with seemingly unattainable dreams to reach their own goals.”
NewsLink Sept 2021 I Page 9
To watch Craig’s Headstart video and as brother to his sister Faye, go to our website: www.headstart-abi.com.au
Thank you carers! O
ctober 10 to 16 is National Carers Week, an initiative of Carers Australia. It’s a time for us to recognise the 2.65 million Australians who provide care and support to a family member or friend with disability, mental health condition, chronic condition, terminal illness, an alcohol or other drug issue or who are frail aged. Anyone at any time can become a carer, and our consumer stories often describe how a person is thrust into the position with little or no choice. National Carer’s Week provides us with a chance to show our appreciation for carers who often go unnoticed. Carers make an enormous contribution to our communities as well as our national economy. We want to take the opportunity to say ‘thank you!’ Did you know that more than half of Headstart’s consumers have carers (54%) with around one third of carers being males? Please share your carer story with us, email: comms@headstart-abi.com.au as we’d love to hear about your experiences.
Caregiving often calls us to lean into love we didn’t know possible. - Tia Walker
Daily help for carers C
arer Gateway has been offering free phone-counselling and online self-guided coaching and skills courses through the Carer Gateway website. Launched at the end of July, a new service gives carers the opportunity to work one-on-one with a coach who supports you towards improving your overall wellbeing. Other available services include:
1. Carer support planning - helping you identify the areas affecting your quality of life and wellbeing, supporting you to be effective in your caring role
2. Peer support - providing you with an opportunity to meet other carers in similar situations to you, where you can share experiences and knowledge 3. Counselling - giving you support through one-to-one sessions with a professional counsellor
4. Carer directed support packages - one off amounts or packages to be used for practical supports incl. cleaning, respite, cooking and transport
5. Emergency respite care - providing care in case of something urgent or unplanned arising, ensuring that the person you care for is well looked after.
More information at www.carergateway.gov.au or call 1800 422 737 NewsLink Sept 2021 I Page 10
Just a few of our amazing carers, with so many more untold carer stories. Why not share you story with us? Carer Gateway is free to access if you are looking after a family member or friend living with a disability or long term medical condition.
The support needs of carers The care needs of people impacted by a brain injury often Suggested solutions include: fall informally onto their parents, spouse or siblings. Maintain your identity n Australia, 97% of people under 65 years with a brain Emphasise the importance of keeping your own identity injury live in households, whereas only 3% live in cared throughout the caring role. Make a conscious effort accommodation Research by Pakenham et al. (2005) found of taking control of your situation – don’t let your these caregivers reported caring an average of 114 hours circumstances control you. per week, and that half earn under $20,000 per annum. Taking time just for yourself The sudden and abrupt nature of brain injury places huge demands on family members, and comes at a personal cost Find ways that can help you cope through stressful periods. to the primary carer. Taking time out just for yourself is incredibly important to
I
Caring for their loved one with severe disabilities is often a huge psychological burden as well as the loss of their own identity. Many carers can experience depression, distress, frustration, anxiety, social isolation, family strain, sleep deprivation, burn out and adrenal fatigue.
The sudden and abrupt nature of the injury means that there’s no time for emotional, psychological or financial preparation. Uncertainty and the lack of direction for their loved one’s present and future circumstances is a source of significant stress. A common issue faced by carers is the feeling of isolation that can occur after brain injury. Friends and family often drop away when they don’t understand the impact of a brain injury, and distance themselves to avoid embarrassment or being offended. Emotional and behavioural changes can occur after a brain injury which often lead to social situations which are strained and/or embarrassing for the carers.
Another issue that carers face is the changing of the roles within their family. The lack of employment opportunities for people with disabilities, caring costs, lack of time, and the everyday costs of running a household places a significant financial strain on themselves and their families. The behavioural disturbances that can result after a brain injury have a tremendous affect on day-to-day life for carers. These can include emotional and personality changes, violent outbursts, substance abuse and inappropriate sexual behaviour. Theses changes place significant pressure on relationships within the family.
Wayne shares about caring for wife Lyn
maintain your quality of life. This could include things like exercise, using social media and taking a hot bath. The point is to stop, breath and focus on you. You need to make sure you are looking after yourself in order to care for your loved one. Find the positive aspects
Although the stresses and demands of the caring role have a negative impact, there are still many positive aspects. Realising that you are helping to make someone else’s life better can lead to closer relationships within the family – this is a common positive experience for carers. The role can generate new appreciation of life, providing valuable life lessons that can lead to rewarding experiences. Know where to find support
Knowing where to look for support can be incredibly daunting and frustrating. Depending on your area of location, services and support will vary and it is often up to the carer to go out and source these services for themselves. You can start by: • Searching for your local disability services in the area • Searching for local respite agencies • Contact a counsellor • Join online forums to connect and share experiences • Contact your the Brain Injury Association in your State. Source: Synapse, 2021. More helpful resources available online: synapse.org.au/understanding-brain-injury/family-and-carers/
It’s 18 years since Lyn’s stoke (16 with Headstart) and honestly, the first couple of years was hell. I’ve found that you just adapt. Lyn comes first, I get her up and organised in the morning. When Lyn’s support with Headstart is on that’s the only time I get a break, so if it wasn’t for that I would be at my wits end. That’s when I get my spell and I can recharge. I very much appreciate the support workers and they become like family. NewsLink Sept 2021 I Page 11
Financially it’s not easy for us, and I still work as a casual cleaner. I’ve never experienced anyone with a brain injury until Lyn and it can get you down. You’ve really got to live with them to know what it’s really like. 17 years ago I didn’t think I’d be in this position, but I am. It’s really hard, but you’ve got to carry on. Lyn was my best mate and she’s still my wife. I would never see her go to a nursing home or anything happen to her.
True blue You can’t keep a good man (or woman) down! Neil and Vicki have made the most of a tough situation that started with a stroke in 2013. Neil shares about his motivations, goals and challenges.
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‘ve started calling my stroke anniversary “Happy not dead day” and I try and push myself to do something challenging each time. My ninth anniversary is coming up again in October and I’m going to ride the Fernleigh twice in one day - 60 k’s. I want to do it simply because I can.
I’ve made some great friendships with the workers. It’s just all a plus with Headstart, a great organization. I often ring Kellie up at the office and talk to her about what I want to do and what I want to change and, yeah, it’s no problem at all.
Apart from the riding I’m working on strengthening my left arm, trying to get some muscle working again. After my stroke I had no ownership I just love getting out and about riding. whatsoever. Very reduced sensation I was a cyclist pre-stoke. I used to ride down my whole left side, leg included. 30km’s every day to and from work With the work it is improving slowly. rain, hail or shine. The recumbent bike means I can still keep on riding and the Two hours on a Monday I do physio or hydro. Five hours on a Tuesday I go support workers help me along the way. The guys are terrific, all of them. riding. Two hours on a Wednesday we do whatever I choose, and five hours Having their support gives me some on a Friday I go riding again. I also do a great independence. lot of walking, around 12 k’s a week.
I’ve always been a man on a mission. Don’t do things by halves. Got that from my father. You can do more in the day if you don’t sleep too much! Thankfully for me fatigue isn’t too much of a problem, although I am wasted by the end of a typical week. I keep busy doing jobs around the house: pressure cleaning the concrete, mowing the lawn, pruning the garden washing the cars and so on - with one hand. I’ve also got a big shed that my kids call “mini Bunnings warehouse” where I stay occupied with all sorts of machinery, my mock trains, LP’s, TV and so on. My main struggle is mobility and also some mental, cognitive stuff, like board games. I’ve finally got my head around, pardon the pun.
Now THIS is a shed! Neil has a metal lathe from BHP training centre, 1 ton crane, milling machine (mill drill) and more. NewsLink Sept 2021 I Page 12
Vicki shares about caring for Neil and Jodie Once Neil had the stroke I became a full time carer. Life went on and we managed each day the best that we could. We always try to have fun times in between everything. If you don’t laugh at least every day you can sit in the corner and cry all day, and you can’t do that! The kids needed me, Neil needed me. Being a carer can be a very lonely job. Not that it’s a job. Lonely because you lose some friendships, but then you also gain some fabulous friends as well. Like the ‘Stroke Wives.’ We all lean on each other at different times.
daughters who do step up to the plate when I’m not well. Plus I also have my family with two others on the spectrum and various medical issues, and then the opportunity came up to care for Jodie, a young mum with motor neurone disease, and I said “Mmmm, can I do this? Can I or can’t I? I’ll give it a go and see how I go!” and I gave myself three months. I did tell Jodie that.
I loved it. Loved looking after Jodie and the family for about four years and Vicki spent many years caring for Jodie it just all of a sudden got too much and her family. for my family, things were falling apart Some friends don’t know what to do or at home and no one was coping and what to say. They don’t know how to I still see them fairly regularly and help help. Instead of picking up the phone out when I can. Which is good! But it and saying “Hey, how can I help you just got to be too hard for my family today? Can I cook you a meal? I’m and as hard as it was I had to prioritize going to the shop”, just those simple my family. things can mean a world of difference So while being a carer is really hard to somebody. work emotionally, mentally and Being a carer is definitely not for everybody. I know some people that it just wouldn’t suit. I think it’s just myself, my nature. I like doing it, I enjoy looking after people. But it’s hard sometimes when you’re the one that’s sick there’s no one to look after you. Thankfully I do have a couple of older When it comes to concentration I do get fatigued easier than I do physically. I can only read a few pages of a magazine at a time, then I come back the next day and read a few more. It’s testing me. Mobility-wise I also wear an AFO (artificial foot orthosis) which stops my foot turning and rolling.
physically, it’s also very rewarding when you see people grow, particularly in Neil’s circumstance. It’s reqarding when I look at where he is now because of his determination and everything that we’ve been through together. All the exercises, the long days... it’s a team effort!
Over the years I’ve done quite a bit of volunteering with HMRI for stoke research. It gives me a good feeling to help other people and get the news out there about stroke. The students get a lot out of it. I did a lot of videos there in the early COVID days for uni students to watch while doing all their online learning.
Neil does the 5 km Walk to D’Feat Motor Neurone Disease earlier in 2021 (wheelchair there just in case, but not often used).
I actually bumped into one of the students a month ago, and she said, “I know you“, I said I don’t know you, then it clicked that she’d seen me on one of the videos at the Uni. But we‘d never met.
My wife Vicki is amazing! I’d be in a nursing home if it wasn’t for her.
My kids have also been terrific as far as I’m concerned. They’re all willing to give you a hand if you need it. They’re not too wrapped up in their own existence which is good.
I’ll just keep on working hard and giving 110% every day. If not more!”
Twice weekly rides are the highlight of Neil’s week, pictured with CSW Dylan. NewsLink Sept 2021 I Page 13
Watch an inspiring video of Neil and Vicki’s story. Scan the QR code with your smartphone camera or go to www.vimeo.com/595739976)
True Blue continued
Vicki’s experience with husband Neil.
21 February 2014, After 4 months in Rankin Park. Neil finally came home uesday, 15 October 2013, 4:44am. – walked out of hospital (albeit with a I woke to the sound of the toilet walking stick) – a moment we cherish. seat lid banging, thinking it was my son out of bed too early, I set off to In March 2014 we attended Advanced Rehabilitation Centre in St Leonard’s investigate. The image of what I discovered will live with me forever. – these people Neil, my extremely active, very fit man are nothing short collapsed on the floor, left leg bent of amazing and awkwardly around the toilet and he inspirational – they was trying very hard to stand up so he love their jobs could go to work!! and they are very passionate, driven I knew instantly he’d had a stroke at people helping only 47years old. everyone get the best possible result I remember the out of rehab, they drive the patients neurologist telling hard, but the results are worth it. We me in emergency have been attending 2/3 days every that it was a very month or so – sometimes 5 days for an large clot and that intensive workout. The benefits have they couldn’t go paid off. ARC put us in contact with in and get it as it Royal Rehab/Return2Sport people who was too large and it would possibly kill run a recumbent cycling hub at St Ives. him. He had the clot busting drug at 6:30am – unfortunately it didn’t work. Bike riding was Neil’s pre-stroke At 7am the next morning he was taken passion, he would ride his push bike to theatre to remove part of his skull to to work (30k round trip) every day. relieve the pressure on his brain. There are no words to explain the joy and freedom he gets from riding his The next few days in ICU was really very own bike. If ever you are on the hard for our young family. Our Fernleigh Track or around Speers Point daughter at the time was only 5 years – watch out for the bright orange bike! old – daddy’s little shadow. He then spent 3 weeks in G2 – fabulous people Christmas day every single one of them. 2013 he joked with his mate On arriving at Rankin Park rehab he Tony that on couldn’t sit up, no movement in left Christmas Day leg or left arm. Once the rehabilitation 2014 they would started he gave it 100% every single ride the Fernleigh time, every single day, trying very hard track together. and concentrating – often wearing Never in a million years did we think himself out. It is certainly not easy it would happen – but it did. 3 days watching your man go through hell before Christmas we went to Sydney every day, whilst trying to keep it to collect his bike. Even though he can together for everyone at home. walk, it’s still very tricky getting him in On 31 January and out of the bike, his non-working 2014 he had an left arm in a sling and there is a special operation to insert brace for his left leg. the bone flap back We are hoping this year to try and in his head – a organise a cycling hub for people with total of 109 days brain injuries somewhere in Newcastle. wearing a bike Neil’s determination and recovery helmet to protect is nothing more than inspirational. his brain. Unfortunately he missed Whilst in Rankin Park we met another taking Sophie to school on her first day young family in the same situation, of kindergarten.
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Stephen’s stroke (same age as Neil) was on the opposite side of the brain. His wife Tracy and I joke that at least they would be able to hang the clothes out together – one right and one left hand!! You have to laugh every day – Tracy and I believe we are extremely lucky to still have our men. We have now become firm stroke friends catching up whenever we can.
In September 2014 Neil had a further operation to realign the bone flap as the plates holding it in place broke meaning the bone was shifting in his head causing a great deal of pain in his jaw. The surgeon reattached the bone flap with titanium mesh and loads more screws. The surgeon even emailed me before and after pictures of the operation, they are awesome - if you don’t have a weak stomach.
15 October 2014 – the 12 month anniversary of the stroke – we decided to have our family for dinner to celebrate Neil’s recovery. All was going smoothly until after he had finished cooking the sausages, he could remember having a tooth out the day before, didn’t know what day it was etc. Back to hospital again. If you have ever seen the movie 50 First Dates, that’s where I was that night, every 5 min or so he was asking me the same questions over and over, at the same time it was very funny it was also extremely scary. Turns out he was having seizures on the good side of his brain!! 12 months to the day, are you serious? Anyway back to good old G2 for 5 days, trialled medication, then allowed home.
20 February 2015 was a day of celebration. After 9 years together Neil and I married in a lovely ceremony in our backyard surrounded by 60 of our closest friends and our amazing families. We then spent 4 lovely days together (minus the kids) in Shoal Bay.
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ince 2015 life has been a bit of a blur. Neil and I have worked extremely hard together on his rehab. One of our many goals was for him to become independent in getting out of bed and getting dressed on his own and showering independently. After many many months of trialling different methods and setups, with the help of Neil’s support workers, we finally came up with the perfect system for Neil. Which I am pleased to say is still working today. Neil being independent in getting out of bed and getting dressed allows me to have some very rare sleep!
same time. As the one who needs to pack everything, pack car, drive, then unpack car etc etc, exhausting thinking about it!
of us altogether), Gold Coast for Commonwealth Games, explored beaches around Coogee, Mudgee on historic railmotor tour, but I think we both agree our favourite place to visit and relax is Tuncurry. Once lockdown has been lifted we will be back there for a week, hopefully. Neil went from having Headstart support workers twice a week to now four times per week. He enjoys immensely riding his recumbent bike twice a week, he averages about 60km each and every week. He also attends Engage VR twice a week for some intensive rehab on his left arm.
In November 2017, Neil & I travelled to Wollongong by train, ultimately to see Elton John. I left it up to Neil to sort accommodation out – rookie mistake! It was challenging to say the least, Neil in manual wheelchair, me with suitcases, on and off trains, get to the accommodation and you open the front door to see a flight of stairs with only a hand railing on one side. In the early days, we spent a great deal of time travelling to Sydney to Advance Rehab Specialists, sometimes twice a week, then every 2 months or so he would have an intensive 2 days. They were tough on Neil, but they got him up and walking which motivated him to do even more. After the intensive days he would be asleep before we reached the freeway. We have been on several fabulous holidays, which have proved challenging at times, due to the fact it takes Neil a bit of time to adjust to his surroundings and different bathrooms are always challenging for him. In December 2015, we spent a week in Mudgee with 2 of our friends to celebrate Neil’s 50th birthday. Having Bob (as another driver) and Del for support and company during that week was fantastic. We both have very fond memories of that week. As a carer, holidays are rewarding but can be very challenging at the
In 2016 Neil built a massive shed in the backyard, he has filled it with machinery, model train table and loads of other ‘stuff’. He enjoys spending time in the shed doing his exercises, cleaning trains and doing little odd jobs he can do by himself. There are 13 steps up to the mezzanine level in the shed with a hand rail on both sides, sometimes he will do 50 laps of the stairs, then he will say ‘think I have done enough for today’. He really does put a lot of able bodied people to shame, me included. Our grandson, After an already exhausting day, I had Jensen, is almost 15months old. Neil to carry 2 suitcases up a steep flight of is looking forward to the day Jensen is stairs, the wheelchair, then help Neil up old enough to climb the stairs to show the stairs. I was exhausted! However, him the trains and how they work. all of the travelling we have done on Every day Neil wakes up with a plan on trains, we cannot fault the system that what he would like to achieve for the SRA have in place, always helpful. day and 99% of the time he succeeds, Over the last 8 years since Neil’s he may be exhausted and need to go stroke, we have been to Cairns, to bed with BigDog, but he is always happy with his achievements. Melbourne, Tasmania on a cruise (with all kids & granddaughter – 8 He always says: give 100% every day.
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Living a
Kate’s mum Carol shares a few of the highs and lows after her daughter’s bleed to the brain twenty years ago, at just ten years of age.
“W “For her 21st Kate’s father asked if she wanted to do a skydive. And she did! She jumped out of the plane with her father because he had the bug, and he actually went and got his license so that he could jump out with her. So Kate’s not backward in having to go at things!”
hen Kate arrived at John Hunter they put her into ICU and she was still conscious, still talking. The next morning they took her in for an angiogram to see where the bleed was, and the pressure had just built up and they had to take the side of the skull out to relieve the pressure and put in a drain. That was the main cause of the brain damage. Perhaps if they’d acted a bit sooner, we may not have had as much damage, but that’s the way it is. Kate had an AVM or arteriovenous malformation. So the blood vessels get tangled or and sometimes you’re born with it, while others will have no trouble their whole life.
We’ve had a lot of ups and downs over the years with different things. She actually, she used to walk a fair bit. Not normal walking more like the old goose step marching but at least she used to walk. She used to eat a lot more pureed food. But then you have a setback. They found that she had reflux, and that really knocked her off her perch. Otherwise, she’s been quite healthy, but with some difficulty breathing more recently which is always a big thing as she breathes through her mouth. People get a bit worried about that when they hear it. We’ve had a few close calls and once had the trachy put back in but we’re past that. Now Kate is peg fed but still has some pureed fruit and yoghurt for different tastes and textures and to keep her swallowing.
Communication-wise Kate knows her own mind, she knows what you’re talking about. She understands everything. I just talk to her and ask So early on we had a few really close questions and give a choices you’ll calls, a month in ICU and five months quite often get a thumbs up or thumbs within the wards before we could get down, that sort of thing. We go by her her home. It was very touch and go a body language and expressions: just few times. a smile says a lot and you’ll know if But we got there and she’s she’s upset or in pain as she’ll scream still here, that’s the main thing. or something. Once she had a wisdom NewsLink Sept 2021 I Page 16
rollercoaster tooth come through sideways and it was extracted in the dental surgery. It was pretty traumatic but still, she handled it better than I would have! It would be good to have a bit more sound communication because I’m not going to be around forever and it would be good to know she’d be able to let you know what she wants, if she’s hungry, uncomfortable, needs to go to the bathroom, tired or wants to get out of the chair. Basic things but that’s my main goal for her, and that she is happy and enjoying her life. She just likes to be just part of things and not left out. I want to make sure that she has the right people around to look after her because she needs help 24/7. Kate’s on medication mainly for her high tone and reflux. It does work to an extent but she’s on the limits of what she can take. If I were able to get her on to the medical marijuana through a proper doctor it would be good to see if that would help give her have a little bit more control and take away the edge. I feel we could then move forward with communication and everything. That’s very hard to get on because she doesn’t fit the criteria. Kate goes to a day centre four days a week and to respite one night a week in Warners Bay. She seems to enjoy that and they are really nice respite group, and they have got to know her well. Because of practicalities we’re not able to make many of Headstart’s longer day programs, although they look fantastic.
One of the highlights for us is Headstart’s weekly karate class on a Thursday. They’re such great people and Peter is an excellent instructor. With all the repetitions and movements the class has been a great source of physio for the last twenty years. Kate’s also learnt how to block and defend herself should someone hit at her. That’s really good because she is very vulnerable.
We’ve had some great support workers with Headstart over the years. Keryn is currently our regular and she’s very good with Kate. They have a good time. I drop her off somewhere for two and a half hours respite on a Saturday. Often it’s Warners Bay foreshore or the markets for a bit of fresh air, or if it’s wet and windy they to the movies. I pick the movies for her like action ones and the last one was Black Widow. Otherwise loud ones with music or animation. It’s good if they’re really loud, colourful and bright to keep your attention or she will tend to drop off. Lately we’ve been avoiding shopping centres or where there’s large amounts of people due to COVID. Kate’s sister Kelly is doing her RN’s (registered nursing) and currently in her last year at Uni. She’s got an eight year old son, and they live here so it’s never a quiet house. Kate’s nephew was very upset that she went to see Black Widow before him!”
Watch a short video of Carol and Kate at karate class. Scan the QR code with your smartphone or go to www.vimeo com/585593039
Carol shares about her role as Kate’s primary carer It’s very up and down, you know, there are highs and lows. Sometimes when she's at her day centre I turn around and say “I miss her, she should be home” because when it’s your kids you want them there with you.
So other than that we get along pretty good. I don't get much sleep that you get used to that when you're a parent, you just adapt she tends to wake sometimes as early as four in the morning. Even though she doesn’t always get up I can hear It's a juggling act sometimes to get her breathing from one end of the house to the other. That does get to and from everything. I think a bit tiring. But you cope. You just since the NDIS has come in, it's made life a lot easier. And I've taken keep going! over self managing, because I find Being a parent you do pretty I found that there are some places much anything for your kids that will just try and rip you off. and you just put everything And I think with Kate I’m more else on hold. When they than just a carer and probably her need you, they need you and personal auditor as well so I'm makthe reward you get is just by ing sure that she's actually getting having them as healthy as what she needs, and that she's not can be. really exploited. NewsLink Sept 2021 I Page 17
Family Ties
At 27 years of age, Kayla survived a stroke that brought her family even closer together. We caught up with Kayla and her Mum Pauline in Maitland recently. Four years on Kayla’s goals are to live as independently as possible.
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ayla: It was four years ago. I went inside after having a smoke and said “Mum I think my brain is dying.” She called an ambulance and after that I don’t remember anything apart from what she tells me. Pauline: Kayla had an aneurysm. In fact she had quite a few of them, not just the one. She also had a mild stroke at 19. But this one was quite a severe stroke. They had to open her once for the aneurysms and then again because she got an infection they had to clean. Kayla: I was surprised that I was still here after the second one happened. I had high blood pressure and I was taking tablets that can lead to stroke. My lifestyle wasn’t helping my health. Today I’ve cut down on my drinking and I don’t smoke anymore. I’m very different to what I used to be. Pauline: They had her up in ICU where she couldn’t talk or walk for a few weeks. Then they end up putting her into a ward. They had to get a helmet because she didn’t have the bone in (her skull) to help recovery. I’d just lost my Mum and then she ended up in John Hunter. I thought “God, I can’t lose two a year apart from each other.” It was terrible. Kayla. They were surprised I was alive. Pauline: I was worried about her. We all were. I’ve got a big family, there’s eight of us and we’re all close. We were going to the chapel every day and praying for her.
So she got an infection and they had to open her up again and she was in ICU again for another week. After that they put her in for rehab at John Hunter for about two weeks to do things like learn to walk again, because she was using a walker then. Then they moved her to the Hunter Brain Injury Service in Newcastle and for what the doctor said would be four weeks. Kayla: As soon as I got there I said “I’m only here for four weeks, and then I’m going home!” All I wanted to do was go home. At HBIS There they taught me to talk better and handle my money. I was there all week and then home for weekends. Pauline: They were pretty good there at HBIS, things like speech therapy and counselling. She got to a point of being really angry, especially at me. Mum cops it all the time. So at the moment Kayla sees someone to help her with anger issues. Sometimes she gets fired up or if she gets really depressed she’ll take it out on whoever is there first. Kayla: I don’t really do it much anymore. If I get angry now I go into my room and away and I tell everyone to just leave me alone. Pauline: Not like she used to, she’s been good since she’s been seeing the counsellor. She was never like an angry person, but I think it’s just built up because she can’t do what she used to. Kayla: Yes, I can’t do what I used to. NewsLink Sept 2021 I Page 18
Before my stroke happened I was about to get a job, then I couldn’t. Pauline: She can’t read or write, at the moment. So one of her goals is working on this at the moment because the one she had was down in Newcastle way, and now she’s not there anymore so we’re just trying to get to get someone else to help. When she came home from hospital I was her carer. Well, I was at home mostly anyway, so not that big a change for me.
Kayla had people come and stay with her while I was at work. She had a sister here to watch her too which was good. I was only casual but that was helpful for the days I worked. These days as a carer there’s not as much to do as at the start. When she first come home I had to help her when she had a shower and make sure she was alright in there and keep an eye on her and just talk to her and if she needed anything. When she got home most things she could do herself. She didn’t really need me to help here. She had like a shower chair and but she didn’t even use that for long, she was fine to stand in the shower by herself as long as I was there to watch her. Kayla: Coming home I was fine to do some things on my own.
Pauline: At Hunter Brain Injury Service I met Kesley from Headstart. She came out here to our place and helped us with the NDIS and as we had to have someone to help out. Kayla: The support workers are really good. They make life easier for me. I like the people that look after me, they come here and pick me up. Sometimes I need to go and get food lunch or play bingo at Green Hills. But we stopped doing that because of COVID. I’ve also started taking photos recently and we also do stuff around the house. Pauline: She has her support workers come and look after her and take her shopping and does things with her that she wants to do. She doesn’t like sitting at home much these days. Yeah, I don’t really do that much myself anymore. I just work most of the time and I do a lot of nights too.
Pauline: She gets a bit paranoid. Kayla: I was about to get a job four years ago and work at a pub but then my stroke happened. I was about to get my RSA license for serving alcohol but the job never happened.
These days Kayla will do the washing and cleaning (while I still do most of the cooking!). Kayla: I do love things clean. When I have my own house one day it’ll be the cleanest house!
I want to be back to who I was. But I’m not going to be back to who I fully used to be because I can’t read and write properly.
My partner and I are want to buy a house next year. Not too far from here though, because we are a close family. I met my fiancé before we got together on 5 October. Then I found out his mother had the same thing as I had, but in January (stroke the same year). But that’s just life. I’ve just got to deal I hadn’t told him about my stroke but with it. Life is life, pretty much. once he told me what happened to his My main goals are to get my own house. mum I told him what happened to me. I I want to go for my licence. But I also met his mother after that, and she can’t need a car! An auto. And I want to get a really walk. job. They are my three things.
I have my family. My partner. I’ve got people to wake up for and people who were there when I was in hospital. Kayla: Yeah, Mum’s not home all the I’m close to my family and time. She works most days. I manage Pauline: Yeah, of a night time is when to do most things by myself anyway. one of my cousins was there her speech gets really bad. She’ll talk to you but then get all muddled up and at the hospital every day, Pauline: She’s got her sister and she’s got that’s what irritates her too, and she gets her partner when he’s here who does a she’d call in after work. In the morning I don’t understand what people say and at night time, I get really tired. So I usually lay down and watch TV or go to bed.
lot for her. It’s good having friends and family all living around this area too. They’re not far away.
a bit paranoid. She can’t understand certain things, like the time because the numbers confuse her.
Kayla: This year I want a job, just casual work for a few hours a day. Ideally a place where I have to deal with money and where I don’t have to talk to people much. If I have to chat to people too much it’s difficult for me. Because of what I’m like now, I get very unsure.
Kayla: My brain is always going to be like that. Pauline: She can walk properly now but it’s mainly what her brain does early on the morning and at night is when she struggles. Getting speech therapy going again should help with that.
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I’ve also love my two dogs. They’re bull arabs. Eight months ago my dog had seventeen pups!
Nathaniel started with an easier, larger target (left) and has progressed to the smaller target.
Bulls Nathaniel struggles to get out of bed some mornings but has recently found something to focus on: archery.
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can’t remember the specifics about my brain injury, but I was hit when I thought I’d take a short cut across train tracks one day in 2013. I think the whole length of my hospital visit was like around a year or so. At the brain injury unit at Westmead I was in the transitional living unit which helped me get some independence back. I had plenty of rehab involving physios, speech pathologists and so on. My biggest challenge is stability: walking in a straight line, and balance. The left side of my body doesn’t work well My right side vision is completely gone, left side is ok at the moment. I started doing archery regularly about a year ago. I had tried it a couple of times when I was much younger. It’s something that I really enjoy and like getting out the house to do it. My archery coach Lyn is so helpful and understanding.
One of my support workers, Elise, gets me there and back and helps me out - she’s become like a good mate to me.
Besides archery we’d go shopping, for a coffee or lunch. I like McDonalds. Sometimes we go to the beach at Salamander. That’s when we could go out that is, but we can’t right now with COVID, although we can still get Drive Thru Maccas!
I’ve been with Headstart six or so years, and they’re very helpful in all ways but mainly to get out of the house. I’ve enjoyed the socials and parties and that gets me out of the house too.
I do still have some friends from before my injury, I know where they all are. I see them birthdays and sometimes Christmases. They pop up depending on how busy they are. But my day to day friendships are my house workers and support workers. I live in a group home. One of the houseworkers has a husband and he’s turned into a friend over the years.
One of my main goals is simply getting out of the house. Staying inside is a little bit too much sometimes. My other goal is to do more archery.” - Nathaniel
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Nathaniel and CSW ELise have become good mates.
While Nathaniel has a few other Headstart support workers, Elise has worked with Nathaniel for three years and built a strong relationship over their time together.
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eah I love him, he’s great. We get on really well! I make an effort to keep Nathaniel motivated. That’s the main challenge that I keep working on.
The archery has been great for him, as I’ve tried a lot of other things to engage him with. There are limits because of his vision. A lot of the things he would have liked before he can’t do now as he can’t enjoy it the same way, because he can’t see. For example we go ten pin bowling, which he likes but can’t enjoy it as much as he used to because he’s struggles to see how many pins he’s knocked down. There’s really very few things he likes to do, which is challenging as he has to spread it out over the five days of the week.
I recently got a remote control car and I want to take him out to a skate park when there’s nobody there.
We’ll race the car away and see if he enjoys that, although I’m not sure how much he’ll enjoy it visually. Vision is a boundary we’ve got to get over and I hope will get his interest and eventually want to get into it a bit more because you can go and race people and make friends. I’d also like to get Nathaniel into the idea of putting the remote control cars together and knowing how the engines work on them and stuff like that, because he’s interested in cars and engines, so I’m trying to find ways we can do it that might not involve a full sized car.
Archery is real highlight for Nathaniel. He can kind of see where the target is but his perception is still out. So we’ve kind of worked out roughly where the deficit is and how to help him compensate.
Now it’s just getting consistency and having him understand how to improve if he’s off by a few inches. I’d like to help get him some kind of monocular scope, even if it’s not attached to the bow, so that he can look and see what’s going on down at the target. That could help in motivation as it’s hard for him to be excited about, as he can get a bullseye and he might not know until we walk up there. Because he needs a left-handed bow, he’s a little bit weaker there so we’re trying to build up his strength. So he has lots of exercises to do at home. The physio has approved some and I’ve just given him basic things like using those hand strengthening grips.
Also resistant bands and weights as well but it’s a matter of getting him to actually do it. So I prompt him a lot and remind him that while exercises might seem boring, the more work he puts in at home the better he’s going to be when he’s at archery.” - Elise
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Nathaniel’s bow when he started
Bull’s eye! continued
Nathaniel’s coach at Feral Archery has some great feedback on his progress over the past year.
“I
have been Nathaniel’s archery coach for a year now and I’ve seen great changes in his form and ability.
Nathaniel comes to our Indoor Archery Centre every Wednesday morning. Nathaniel is supported by Elise, who assists Nathaniel when needed. Our aim is to make our archers as independent as possible which means learning how to achieve the whole process of shooting a bow. This starts with standing on the shooting line, loading the bow, drawing, anchoring and aiming, and finally executing the shot to hit the target. Nathaniel’s new bow CSW Elise assists Nathaniel
In the beginning Nathaniel shot with one of our very low poundage bows. Due to Nathaniel’s injuries he has to shoot left-handed to be able to aim correctly. This means he holds the bow in his right hand and draws with his left hand. His left eye, although quite weak in vision is his only working eye, so he must aim with his left eye. Nathaniel’s left hand is not his strongest but with work this is improving. At first Elise had to assist with much of the loading process and remind him to anchor correctly. In the beginning we put a very large target up for Nathaniel to aim at. Success and confidence are what we are trying to achieve so having a large target allows the archer to aim and shoot with the confidence he is going to hit the target.
Coach Lynne
With the help of Elise again, Nathaniel has now purchased his own archery equipment. He is getting stronger; he has better dexterity and his ability is improving. Nathaniel has now progressed to a smaller target with great success. Nathaniel is a cheeky young man and due to his acquired brain injury needs continued reminding of some of the steps needed to achieve his goal of hitting the target. We are confident that with the great support he has he will continue improving in this wonderful sport”. - Lynne Fairhall, Feral Archery Head Coach (Rutherford) NewsLink Sept 2021 I Page 22
Pedal to the metal Chris joined the Rec group at Go Karts Go in Broadmeadow prelockdown. Chris shares a little of his story after being with Headstart for the past 18 months.
“I
’ve never driven a car in my life. The go karts was something I wanted to do for myself, and it feels bloody great! If I’m honest I don’t really like being around a lot of people, so I was surprised when I went to the go karts. I thought I’d be snappy - like I sometimes am with lots of people but it was very relaxed and I had a very good time.
I’ve never driven a car properly because I was in an accident in Queensland when I just turned sixteen. My noggin copped a bit of a floggin’. I went through the side passenger window of a car and hit a telephone pole or something like that. I’ve got no idea. I can’t remember and the doctor told me that’s the natural response to something like that. When I was living in Muswellbrook not too long ago there were a couple of people there who told me about Headstart. I had a yarn with one of them and I told him what I’ve been through and I’d just had a few grand mal seizures. Then I went to Queensland for a while and came down here to be close to Mum.
I ended up living with my parents for a long time but I don’t live with them anymore. I can now live independently because I’ve got Headstart helping me out. Thank you very much! I live with Miss Binnie, my dog. She’s a humdinger!
I’ve got a hidden disability. At times I get very confused and lost. You wouldn’t know to look at me but you can easily tell when you talk to me. Since I joined up with Headstart my life’s improved 1000%. You’ve got no idea what it was like before.
I’m not a real good cleaner or anything like that. My Tuesday support worker, Belinda, she’s awesome. She helps me clean the place real good, and my Mum’s really happy with it. Gemma is my Friday support worker and we go and do shopping and things in the community. Every second Friday we take Miss Binnie for a walk and wash her and we can do whatever we want. My goal is definitely to get out more. NewsLink Sept 2021 I Page 23
I honestly haven’t been out in twenty two years. I have been out with my parents, but that’s to places they wanted to go to. So I’ve never been out by myself and got to go anywhere I wanted to go. My life has improved heaps.
I enjoyed the go karts but the only thing is the track was too small, you couldn’t open it up properly. Couldn’t put pedal to the metal. Too many corners and too tight. But it was good to get out of this bloody place! My goal is definitely to go out more now. I’ve put in for the Rec pool comp too, although I haven’t picked up a cue in decades!”
Rec Roundup Pre-lockdown
Photography class in action
“This quarter has been impacted by COVID lockdowns, so quite a lot of our face to face Rec and Women’s Group activities had to be put on hold, unfortunately.” - Nikki, Rec Coordinator
Glenrock walks keep people coming back for more
Lawn bowls is always a favourite... can’t wait until it’s back! A popular Rec activity is “rock art”. The idea is to paint a design and/or write an inspirational message. Rocks are then randomly left in a park or in our community for people to find and bring a smile to their face! Words like “Be kind to all”, “Smile” and “Unity”. Everyone loves a random act of kindness!
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Rec at Home In lockdown
Above: A Rec Zoom catchup Leah (below) is very proud of her letter to an aged care resident, written in her own words. Awesome job Leah! Thanks to CSW Therese for assisting. This is one of our ‘Rec at Home’ activities, as we reach out and encourage the elderly who may feel isolated at this time.
“A revamped calendar for lockdown means that people can stay active and connected using technology. Rec at home is proving really popular!” - Nikki, Rec Coordinator
Headstart’s Karate Class sampler
While lockdown puts regular karate classes on hold, try this 15 Min online sample! Scan the QR code with your phone camera for video (or go to www.vimeo.com/580698675) We’ll be starting a regular online exercise class every Tues & Thurs (via Zoom) from 10.30-11am. Our Rec coordinator, Nikki is a qualified Personal Trainer and Group Exercise Leader and has experience running classes for varying levels and abilities.
Headstart
Total Body Workout with Nikki
All you need is an exercise resistance band (we can help get one posted to your house). This will be a great addition to our regular Rec calendar, even when we are back to running regular Rec after lockdown. This means more people can participate. The classes will be gentle routines that can be done standing or seated, and designed to increase strength, flexibility, and cardio fitness. It’s also great for mental stimulation as we work on coordination and some more complex movements. For more info call Nikki at our office on 4965 4420. NewsLink Sept 2021 I Page 25
King of the jungle! "I supported Dom to achieve a video telling the story of his life to date. After showing him a personal project I asked if he would like to create his own.
Dom’s journey so far...
As a creative soul who has attended Headstart creative classes over the years such as mosaics and photography I thought it would be a great outlet for him, initially to send to his family but also his Headstart friends. Dom enjoys watching it, and also watching others as they watch it. I think it’s a project that he’s proud to share!" - CSW Elaine Watch Dom’s video set to the Guns ’n Roses classic ‘Welcome to the Jungle’ Scan QR code with your smartphone or go to www.vimeo.com/594928027
Ben’s mum Cheryl shares her ABI experience For Brain Injury Awareness Week we premiered our new video, with Cheryl sharing candidly about her experience with son Ben. As is often the case, brain injury can occur unexpectedly and lives change in an instant. Ben was 23 years old, and he went to a party and then the next morning they went to take some photos on top of a building in Newcastle, and he fell off the building. We had no idea what we’d be in for when we brought Ben home. Initially Headstart came out here. They sat with us and sat with Ben and realized that we needed a lot of help.
It was the way they spoke to Ben in the first instance. You know how they treated him like someone like our son. They didn’t treat him like someone with a disability. After all these time I’ve learned that you need a service provider that understands brain injury, and the only service provider that I’ve come across that knows brain injury is Headstart. It’s all got to do with the fact that they understand.
We continue to support Ben and his family week in, week out 13 years on. Thank you for sharing your story Cheryl! Watch the video:
Scan the QR code with your smartphone or visit the link www.vimeo.com/580180269 NewsLink Sept 2021 I Page 26
Headstart Community Education Team
Feedback
Ivan takes action to save Link Road bushland
F
rom Jon, our CET Team Coordinator: “I just wanted to send you some of the feedback I have received on the feedback forms from the TOIP’s (Traffic Offenders Intervention Programs) over the last 6 months. I’m thankful to everyone for their hard work. What they do is making a difference in the lives of others!” “Very informational and engaging due to the personal aspect.” “Very brave presenters speaking about their life experiences and hardships whilst still remaining positive and having a sense of humour.” “Honestly perfect seeing that not only yourself but how others drive can affect you too. Excellent talk.” “All were brilliant!”
“I think this really helps to make us all understand and realise the effects and outcomes of driving irresponsibly. It was quite emotional.” “Thank you for sharing your stories.” “I think the team are amazing people and so brave to stand up and talk to us. I so appreciate their time and thank them immensely for their time.” “Thank you so much for your time and stories. It has changed my life.” “An amazing presentation that was very informative and inspiring. I will definitely always remember your stories. Thank you.” “It takes a lot of courage to share personal experiences like yours. Well done guys!”
Ivan is an outdoors man at heart: mountain climber, international sailor and environmental activist.
“D
uring rehabilitation following my abseiling accident and receiving Headstart support, I’ve had a lot of time on my hands. The spare time between doctors appointments has allowed me to learn about and join the fight to save our Link Road forest.
Either side of the link road between Wallsend and the freeway is bushland that is home to various animals and unique plant species. It is also part of the remaining 15% of coastal plains forest left in NSW between the Victorian and Queensland borders.
The coastal plain is the flat land between the ocean and the great dividing mountain range. Unfortunately, the coastal plain is both good forest growing land and great land to build houses on. So we humans have been slowly destroying the woods across the entire length of the coastal strip. Developers along with councils have been exchanging brief labour opportunities for long term environmental destruction for many years. IT MUST STOP!” “Jessica has assisted me continuously for the past 18 months with day to day chores and cooking. I have the highest regard for the quality of assistance from the Headstart team, and Jessica as an individual.” - Ivan
“Very inspirational people.” “It really hit home and was Congratulations to our an eye opener.” CET Team! “Very informing, personal and genuine. Inspiring. Thank you all.”
Have you seen our new Community Education Team video? Scan the QR code with your smartphone to watch our new CET 3 min promo video. Or visit the link www.vimeo.com/556022274
We’ll be following up with Ivan’s in-depth story in our December edition of NewsLink, stay tuned. More info at about the Link Road campaign: www.hcec.org.au/link-road-rezoning
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Congrats Owen Bronze at Tokyo Olympics!
Owen Wright’s story is an encouragement to all recovering from brain injury. Owen had to learn to walk - and surf - all over again and won bronze at the 2021 Olympics inaugural surfing event.
“To anyone out there who has suffered a Traumatic brain injury (TBI) or something that’s reduced them to their most raw vulnerable form, I hope this can inspire you to never lose that light at the end of the tunnel. There were moments I doubted I would ever get back to full capacity and moments where I had great results but was still suffering silently. I want to inspire you to be
vulnerable enough to ask for help to get the answers you need and to never give up on the dreams you once had!! I just want to thank all the people that believed in me and supported my dreams. This week has made me reflect on the journey and I would not be here without you all, thank you!” - Owen’s Facebook page (29.07.21)
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.
“Great works are performed not by strength but by perseverance.” - Samuel Johnson
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. 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 Sept 2021 I Page 28