Getting Out There 2018 by Northern Advocate

2018-19

Valued, Included and Participating

2018-19

Valued, Included and Participating

Contents 6

Information & Services relating to disability in Northland Tiaho Trust

Tiaho Trust – Wally Noble

Alzheimers Northland

Alzheimers Northland Mike and Lesley Bailey Arthritis New Zealand

25 26 27 28 29

Arthritis New Zealand A relationship that works The Blind Foundation

The Blind Foundation Jacqui Gardner The Brain Injury Association

The Brain Injury Association My name is Tony Green CCS Disability Action

CCS Disability Action Lee-Ann Kerr Deaf Aotearoa

Deaf Aotearoa – Tuhoi Henry

Down Syndrome

Down Syndrome – Daniel’s Story

Epilepsy awareness – see the person, not the condition Epilepsy – Ashley’s Story

Huntington’s Disease Association

11 12 13 14 15 16 17 Published by NZME Northland in conjunction with the Tiaho Trust.

37 38

Huntington’s Disease Charles Sabine Motor Neurone Disease About MND New Zealand Motor Neurone Disease David Seymour Multiple Sclerosis Northland MS Society Multiple Sclerosis Cathie Mussell NorthAble Disability Services NorthAble Disability Services Breeana Towns Parent to Parent Northland Parent to Parent Northland Derek Senior Parkinson’s Disease Parkinson’s Northland Parkinson’s Disease Mel Clements Stroke Foundation – Supporting life after stroke in Northland Stroke Foundation Reuben Williams Citizen’s Advice Bureau Whangarei School holiday respite now available in Whangarei! Blomﬁeld School TLC4U- Small enough to care big enough to provide

Tiaho Trust will be celebrating the International Day on the Canopy Bridge – Whangarei Town Basin

7 December 10.30 – 2.30pm • Mini Jeeps • Airbrush Tattoos • Papermill • Live Entertainment • Circus Kumarani and much, much more! Disability service & Equipment information

Information & Services

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Relating to disability in Northland

Linking people, families and carers living with a disability to information, advice and support in their community.

Visit www.tiaho.org.nz/-*002., %#3+ 2*, !2.& about what services these organisations provide in Northland.

In Northland, there are a range of organisations providing a Disability Information Advisory Service. These are known as the ‘Northland DIAS Collective’. Tiaho Trust supports these organisations by helping to improve the access to and utilization of their you are unsure who to contact or have any questions, call us on: FREEPHONE: 0800 430 3406.

• • • • •

Advice and information Advocacy Community education and awareness Support groups and networking Home visits

• • • • •

Access to health professionals Referrals and assessments Equipment Seminars/workshops Resources

Together, Tiaho Trust and the DIAS Collective, empower the Northland community by promoting the disabled community as valued citizens who contribute, participate and add to the diversity of New Zealand society.

Northland Down Syndrome Support Group

For DIAS contact details please refer overleaf

disability – a matter of perception

Tai Tokerau Maori Trust Board Building 3-5 Hunt Street, Whangarei PO Box 374, Whangarei FREEPHONE 0800 430 3406 Phone 09 430 3406 info@tiaho.org.nz • www.tiaho.org.nz

Information & Services

Relating to disability in Northland

A Tiaho Trust Project

Your A –Z directory of disability support providers: Alzheimer’s

www.tiaho.org.nz/alzheimers 148 Corks Road, Tikipunga PO Box %D@%, 0$!$=6P(EG Whangarei DB++ PO Box 1179, Whangarei Phone: (09) 438 7771 Fax: (09) 438 2974 northland@alzheimers.org.nz northland@alzheimers.org.nz www.alzheimers.org.nz www.alzheimers.org.nz

Brain Injury Association

www.tiaho.org.nz/brain_injury PO Box 4001, Kamo, Whangarei Phone: (09) 459 5013 5013 northland@mybrain.org.nz Fax: (09) 437 0714 www.mybrain.org.nz northland@brain-injury.org.nz www.brain-injury.org.nz

Down Syndrome Support Group www.tiaho.org.nz/down_syndrome

Arthritis New Zealand

www.tiaho.org.nz/arthritis /P$7 L&OC,; HE99 Whangarei 2>E?G Suite8G1,-#1 James Street, J,47>PG :6A!REP? P O Box 74581 Freephone: 0800 663 463 Greenlane, Auckland 1546 $P*><E;7&;$7$9F>;(FPN Freephone: 0800 663 463 www.arthritis.org.nz www.arthritis.org.nz

CCS Disability Action

www.tiaho.org.nz/ccs

291 Kamo Road, Whangarei PO Box 8035, Kensington, Whangarei Phone: (09) 437 1899 Fax: (09) 437 0209 Freephone: 0800 227 2255 northland@ccsdisabilityaction.org.nz www.northern.ccsdisabilityaction.org.nz

Epilepsy Northland

www.tiaho.org.nz/epilepsy

Kara Road, RD 9, Whangarei Phone: (09) 434 6723 Freephone: 0800 693 724 national.coordinator@nzdsa.org.nz www.nzdsa.org.nz

Suite 5, 71 Bank Street PO Box 712, Whangarei 0140 Phone: (09) 438 5498 -%+ )-% Freephone: 0800 0800EPILEPSY northland@epilepsy.org.nz www.epilepsy.org.nz

Multiple Sclerosis Northland

Motor Neurone Disease

www.tiaho.org.nz/ms

Suite 6, 71 Bank Street Whangarei Phone/Fax: (09) 438 3945 Mobile: 027 539 9883 nthlndms@xtra.co.nz www.msnz.org.nz

Stroke Foundation

www.tiaho.org.nz/stroke .&EP(E;,$ S Whangarei 5$97;$A79 PO Box 1937, 3;,,=&>P,T Freephone: D#DD 0800 +)" 459 ")+ 954 P>;7&REP?<97;>!,F>;(FPN Mid North/Far North Mid North/Far North Freephone: 0800 566 383 Freephone:northland@stroke.org.nz 0800 566 383 Northland: far.north@stroke.org.nz Far North: far.north@stroke.org.nz www.stroke.org.nz

www.tiaho.org.nz/mnda Yarnton House, House, 14 14 Erson Ave, Royal Royal Oak, Oak, Auckland Auckland PO PO Box Box 24036, 24036, Auckland Auckland 1345 1345 Phone: Phone: (09) (09) 624 2148 Mobile: Mobile: 021 021 036 0218 7,EQR?;<QP?EF>;(FPN www.mnda.org.nz www.mnda.org.nz

Parent to Parent Northland

www.tiaho.org.nz/parent2parent %%) .$;>E 2? Whangarei 0141 PO Box 4295, 25B I!E$&E6 D+%) Phone: (09) 437 3337 K>C: D@% #D# -"+@ Freephone: 0508 236 236 Freephone: 0508 236 236 northland@parent2parent.org.nz northland@parent2parent.org.nz www.parent2parent.org.nz www.parent2parent.org.nz

disability – a matter of perception

Blind Foundation

www.tiaho.org.nz/blind_foundation 277 Kamo Road, Whangarei Phone: (09) 437 1199 Freephone: 0800 243 333 generalenquiries@blindfoundation.org.nz www.blindfoundation.org.nz

Deaf Aotearoa Northland

www.tiaho.org.nz/deaf_aotearoa 1A Deveron Street Phone: (09) 437 2022 Fax: (09) 437 2028 Mobile: 021 641 178 aklrception@deaf.org.nz www.deaf.org.nz

Huntington’s

www.tiaho.org.nz/huntingtons

PO Box 16181, Sandringham Auckland 1351 Phone: (09) 815 9703 Freephone: 0800 432 825 huntingtonsakld@xtra.co.nz www.hdauckland.org.nz

NorthAble

www.tiaho.org.nz/northable 40 John Street, Whangarei Freephone: 0508 637 200 drc@northable.org.nz www.northable.org.nz Equipment Plus Showroom: (09)430 4303469 3469 Store: (09) www.equipmentplus.org.nz LYNKZ: (09) 430 3470 ') M>&P 17;,,7, 43 Tirarau Place,.&EP(E;,$ Dargaville

Parkinson’s Northland

www.tiaho.org.nz/parkinsons PO Box 641, Whangarei 0141 0140 Phone/Fax: (09) 437 6878 6876 Freephone: 0800 473 4636 northland@parkinsons.org.nz www.parkinsons.org.nz

TaiTai Tokerau Maori Trust Board Building Tokerau Maori Trust Board Building 3-5 Hunt Street, Whangarei 3-5 Hunt Street, Whangarei POPO Box 374, Whangarei Box 374, Whangarei FREEPHONE 0800 430 3406 FREEPHONE 0800 430 3406 4301679 3406 Phone 09 430 3406 Phone • Fax 0909438 info@tiaho.org.nz• www.tiaho.org.nz • www.tiaho.org.nz info@tiaho.org.nz

Valued, Included and Participating

Tiaho Trust

iaho Trust is a disabled led organisation that is proactive in providing advice, education and training to develop communities that are inclusive of disabled people and who value their contribution to the community of Northland. We are unique in that we disability lead from governance through to management. Every year we (in conjunction with the Northern Advocate) produce this ‘Getting Out There’ magazine to assist with what disability services are available throughout Northland. Not only do we proﬁle 15 disability support organisations but we also provide stories about people who use their services. This year our magazine is focusing on the value disabled people give to our community either in paid or volunteer work. The stories behind the individuals are fascinating both in the impact they have on people around them and what it took to put them into that role.

Roadshow – Free Advocacy and Information workshops This year is an exciting year for us as we will be hosting 5-6 free “Roadshow workshops” to educate people with disabilities or whanau/caregivers of people with disabilities using professional facilitators at the same time discussing: • Organising long term welfare of your young person with a disability. Organising who will support them to make decisions on their personal and physical welfare when the parent has passed on. Difference between welfare guardianship, power of attorney, property management and how a Trust may be useful. Making a Will. • What youth with disabilities options are for alternative living care. • Offering of Advocacy for anyone with a disability and educating on self- advocacy when dealing with agencies. It is our intension to host these workshops Northland wide in the second week of October 2018, so keep an eye on our website. “No Problem, You’re Welcome” – Disability Awareness Customer Service Training We have been delivering training that educates organisations on how to deliver excellent customer service to the large market segment in our community; the

disabled community. We deliver this training not only to non-government organisations and health and disability providers but also to commercial organisations who may be eligible for a 50% discount through the Regional Partnership Voucher Scheme that is administered by Northland Inc. If your organisation is interested in receiving this training please contact us or look at website. Two major organisations that have stepped up in the community and done this training are Whangarei District Council and Far North District Council. We do provide training for smaller organisations and can taylor training requirements as needed. Each year we host events that promote disabled people and the value that they add in our community. The celebration of the International Day of People with Disabilities is a great example. This year will be held back at the Canopy Bridge in early December, so come and join in the fun.

Tiaho Trust Ground Floor Tai Tokerau Maori Trust Board Building 3-5 Hunt Street / PO Box 374 Whangarei Phone: 09 430 3406 Free phone: 0800 430 3406 Email: info@tiaho.org.nz Web: www.tiaho.org.nz

Valued, Included and Participating

Wally Noble

ally always stands out in a crowd because of his share good looks. I first met him some three years ago at a public consultation meeting regarding the new NZ Disability Strategy. He asked some great questions which captured my interest. I thought to myself, now here is someone who fits right into the Kopapa of Tiaho Trust; to empower our community to value disabled people. Wally was previously a scaffolder and in March 2007 he had an accident resulting in him falling several floors through a commercial building roof and is now a wheelchair user. He’s is an extremely handsome (according to all my woman work colleagues) a charismatic Maori who has six tamariki and two mokopuna. Tiaho Trust engaged Wally as a Presenter for a new video we were shooting at the time called “No Problem You’re Welcome”, a video that would be used as part for Disability Awareness Customer Services Training. He co-presented with Jaqueline Guerts (a professional actress) and did such a great job we asked Wally if he was interested in being one of our facilitators that carry out the training for businesses, Councils and Health sector professionals.

Wally has carried out some of these training sessions with Kim Silvey and says that “I fully support the message the training has, which is for people to understand the challenges disabled people face and to not make assumptions about their disability.” Wally has done some work place assessments which places him in businesses for 12 weeks, such as Mitre 10 and Sports Northland. He enjoyed the working for Sports Northland (Green Prescriptions) helping run exercise groups, unfortunately there were no permanent positions available that didn’t require a diploma. Wally says, “having too much free time makes you start to go into the dark side, with not enough to do and I urge local employers to give disabled people a chance. All I want is to have employment that helps support people, is challenging and sustainable”. He will in the near future start working for CCS Disability Action as a mentor and will continue to be a facilitator for Tiaho Trust when needed. Check out this link to Wally promoting the Tiaho Trust training which has been advertised on Maori TV. www.tiaho.org.nz

Having too much free time makes you start to go into the dark side, with not enough to do and I urge local employers to give disabled people a chance

Shalom Aged Care Come and feel the difference Quality Care Within a Small Home Like Environment 62 Mill Road, Kensington, Whangarei | Ph: 09 437 6511 Email: shalomagedcare@xtra.co.nz

Valued, Included and Participating

Alzheimers Northland Living life in the present moment

ommunity Advisor Teresa Urquhart brings a wealth of relevant experience to her role at Alzheimer’s Society Northland. With a background in Health Psychology, Teresa works with her colleagues to help people and their families ‘live well with dementia’. While a diagnosis can be scary, it doesn’t necessarily mean that suddenly everything has to change. With the right support and information, those living with a diagnosis can still live life to the fullest.

Focusing on the bigger picture Her goal is to encourage and to assist, building a support network unique to each person and their situation. This can include referrals to the Needs Assessment Team from the DHB, and other relevant specialists as well as liaising with GPs. She also works in an advocacy role, particularly for people who have no family nearby. Teresa’s previous involvement in a research project with Auckland University highlighted the importance of the link between cognitive health, nutrition, exercise and socialisation. Sharing this knowledge is something that she brings to her current role. We’re all well-aware that good diet and being active are essential to health and general well-being, but not all of us are aware of how vital socialisation is to maintaining good brain health. Alzheimer’s Society work to offer ample opportunities for socialisation to all their clients, caregivers, family and whanau. It’s during their weekly coffee mornings and monthly support groups that Teresa sees the two threads of socialisation and living in the moment come together, resulting in some delightful experiences.

Doug the Digger loves working in the Community assisting people with disabilities

A diagnosis of dementia or Alzheimer’s can be isolating, which is another reason these social support groups are vital. One of the most important and poignant things Teresa has learnt through her role is that a diagnosis with dementia or Alzheimer’s can teach us to live in the moment. Teresa recommends that those diagnosed with dementia, along with their families/whanau, develop and create a plan which can help to take away some of the fear and uncertainty people have about their future. The plan includes getting financial and legal issues sorted, such as power of attorney. Teresa and her colleagues work to also make sure the person diagnosed and their caregivers have the appropriate level of support and information for the stage they are at. Once they have their plan and support in place, they are then encouraged to live their lives to the full. Alzheimer’s Society Northland –awareness, education and support The team offer a range of supports including: • Weekly coffee mornings • Monthly Friday night dinners • Monthly support group • Advocacy • Interactions with GP • Home visits • A range of resources they can post out to you Did you know – you don’t need a diagnosis of dementia in order to receive support! If you believe that a parent, friend or partner may have cognitive difficulties, please get in touch with the team at Alzheimer’s Society. They’re there to answer any questions or help with any concerns you may have. You can phone, email or drop in to their offices on Cork Road. Alzheimers Society Northland Inc PO Box 1179, Whangarei Whangarei 0144 Phone: (09) 438-7771

Valued, Included and Participating

Mike and Lesley Bailey Finding a way forward has accepted his situation and is able to move forward with a positive outlook. At present, Mike can manage quite well by himself - he can still drive and even does the shopping on Fridays after Alz House and doesn’t worry about what the future may bring. He and Lesley both understand how stress and worry can worsen symptoms, so they take each day as it comes. Now that they have the information and support that they need, provided by The Alzheimer’s Society, Mike and Lesley are enjoying their lives together. They set aside time each day to talk, so that the lines of communication between them are always open. Socialising and keeping busy Mike and Lesley are involved with a number of support groups and activities offered by Alzheimer’s Society. They have their week all planned out with various appointments and social activities, so they always have something to look forward to. They both emphasise how vital socialisation is to their quality of life, and encourage everyone with a diagnosis of MCI, dementia or Alzheimer’s and their carers to get out there and get the support they need.

■ Mike Bailey

itting in their Maunu home on a sunny winter afternoon, Mike and Lesley Bailey talk about the importance of accepting your condition, communicating well with your partner and not being afraid to ask for help when dealing with a cognitive impairment. Mike was diagnosed with Mild Cognitive Impairment after his wife Lesley observed changes in behaviour not typical with the aging process. Lesley noticed that Mike was being uncharacteristically forgetful. He’d always been meticulous with his gardening tools and taken great care of them. So, when he began to leave them outside in the garden, alarm bells started to ring for Lesley. Asking for help Lesley took advantage of a chance meeting with Kevin Salmon from the Alzheimer’s Society to ask for advice on what she should do. Appointments were set up for Mike to be tested by his GP to assess what was happening with him and to determine a course of action leading to a diagnosis of MCI. An equally important part of the diagnosis process is for the partner or carer to also receive the appropriate help and support, which was what Lesley badly needed. She met again with Kevin Salmon, who listened to her concerns and gave her some strategies which made life easier.

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Acceptance - “it is what it is” Mike and Lesley had different reactions to the diagnosis of MCI. To begin with, Mike’s biggest concern was losing his driver’s licence, seeing as Lesley doesn’t drive either. However this hasn’t eventuated and through the support offered by the Alzheimer’s Society, and in particular meeting others like him at Alz Club, Mike Ph: 09-437 1144 110 Boundary Rd, Tikipunga, Whangarei.

Valued, Included and Participating

Arthritis New Zealand Arthritis – a leading cause of disability

At least 647,000 New Zealanders are affected by arthritis and 49 percent of those are of working age

rthritis is a painful and debilitating condition for anyone but for those who are trying to earn a living the difficulties can be even greater. They may have problems getting time off work to go to specialist appointments. Workers may have to use up all their sick leave or take leave without pay when coping with a ‘flare’. Sometimes it’s the physical demands of the work itself (standing or lifting) that are difficult. Or it may be the negative perceptions of work colleagues that add to the stress. On the other hand, flexible hours, modified equipment, understanding colleagues and managers who take a positive lead can go a long way towards

making sure that workplaces are accessible and welcoming for people with arthritis. Musculoskeletal disorders like arthritis are among the leading causes of disability and represent a huge ﬁnancial burden to the New Zealand health system and the economy. Arthritis New Zealand provides information and support for people with all forms of arthritis, at any age. While there is no cure, most people can live fulﬁlling and productive lives with early intervention, good treatment and self-management tools. We also advocate for all those affected by arthritis, including families, and provide training for health professionals through workshops and seminars.

Arthritis educators are available on 0800 663 463 during business hours to give advice on treatments, pain management, employment issues and access to other support services. We also have a Q&A session on Facebook every Monday night from 7.00pm to 9.00pm on topics of interest. There is an active arthritis support group in Whangarei and water-based exercise classes are run independently at the Aquatic Centre.

Phone 0800 663 463 visit our Facebook page Website www.arthritis.org.nz

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A relationship that works Brent’s Story

utual respect is the key to Brent Hill’s relationship with his employer, A.J. Erceg. Brent has been a painter and decorator for the last 30-odd years, apart from a break of about ten years when he was making wood furniture. That’s when lupus, a form of inflammatory arthritis, first manifested itself. “The factory was noisy and dusty and my lungs were constantly clogged with it. I went upstairs one day and I was huffing and puffing and I thought, ‘This isn’t right,’ so I went to the doctor.” Brent ended up in hospital with pericarditis – inflammation of the membrane around his heart. The doctors first thought it was due to a viral condition, but after several relapses, they eventually diagnosed lupus or SLE (systemic lupus erythematosus). Brent explains that it means his immune system is attacking his own tissues. “My joints are perfect but I have a lot of muscle pain. On a bad day, the pain goes from my knees to my shoulders and breathing can be agony.” If he’s not careful, a flare-up of the lupus can mean a return of the pericarditis, which feels “like an elephant sitting on your chest”, makes him breathless after walking only about four metres and could put fatal

pressure on his heart. Brent’s condition means he’s had to take lots of time off work – three months was the longest – but his boss Tony Erceg is okay with that. He says Brent has been working for him for about 25 years and would be

yourself. If it’s bad, just knock off or take time out or whatever you need to do.’ The job might take longer but I know it will be done properly. “He’s very good at what he does. I have a lot of time for Brent and so have my men.” For his part, Brent really appreciates having a manager and colleagues who are understanding and supportive. “I just try to carry on as best I can. I know if I need a hand I can call on them.”

“He’s very good at what he does. I have a lot of time for Brent and so have my men” very hard to replace. “Brent always gives his best and if he has to have time off, it’s always justiﬁed. We sort it out. I tell him, ‘Don’t overtax

■ Brent Hill (right) with his employer Tony Erceg

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Welcome to the Blind Foundation Life without limits Kahore e Mutunga ki te Ora

he Blind Foundation is here to help. If you, a family member or friend, is blind or experiencing sight loss, we can provide the support needed to help you face your future with confidence. To become a client, you can register on line or over the phone. Once you’re set up, you’ll be able to get a wide range of support. These supports may include: Library; We have collections and services available through the Blind Foundation library, including the BookLink digital lending and reading service, as well as how to join. Getting Around; We’re here to help you stay independent when getting around, whether with a cane or guide dog, on public or private transport. Daily Life; We can help you adjust to sight loss, be independent, make the most of technology, and live a life without limits. Cultural support; We have cultural support for Maori and Pacific clients and their whanau, family and friends. Deafblind services; If you’re experiencing dual sensory loss, we’re here to help support you- wherever in New Zealand you are. Children and Youth; We offer a range of support for children who are blind or low vision, and seek to empower our young clients to live independently and fulfil their potential. And if you’re the parent of a child who is blind or low vision, we’re here to help

you too. Businesses and Professionals; We offer a range of services to help businesses and educational institutions. If you employ or teach a person who is blind or has low vision or want to improve your accessibility, we can help. We look forward to meeting you and helping with your vision needs.

• Heat Pumps / Air Conditioning

You will ﬁnd us at: 277 Kamo Road, Whangarei Phone: 09 437 1199 Ofﬁce Hours: Monday, Tuesday, Thursday & Friday - 9am-2pm If you have any questions, call our team on 0800 24 33 33 or email generalenquiries@ blindfoundation.org.nz

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Jacqui Gardner Life without limits Kahore e Mutunga ki te Ora After three years, Jacqui returned to Blenheim and attended high school. She worked as a telephonist through the Blind Foundation and then attended Bible College and worked in Christian Ministries since. She now works voluntary and co-ordinates the Northland branch of Elevate – Christian Disability Trust. A wife and mother to three sons, Jacqui says, now that her kids are older she has become more involved with the Blind Foundation and has recently begun teaching the iphone. She enjoys busking and can be found singing and playing the autoharp down town with most of the proceeds going towards the Elevate - Christian Disability Trust national camp. Six years ago, a black lab/golden retriever cross joined the family. Paris, now eight, and Jacqui are tight. The two often partake in Sport Northland events, including the Kerikeri half marathon. Although she still gets severe headaches, the tumour has never reoccurred and Jacqui counts herself lucky. “I am really grateful I had vision up to the age of ten. I can still vividly remember what things looked like. I’m very imaginative and a visual learner so I visualise things all the time.”

■ Jacqui Gardner with her guide dog Paris

hen Jacqui Gardner fell off a slide and landed on concrete on her head, aged four, that was the beginning of the end of her eye sight. The following year, she began having severe headaches, daily vomiting and balance issues but repeated visits to the doctor turned up nothing. Her vision started to deteriorate and finally an x-ray when she was ten, showed a brain tumour. “Sadly, in the 60s, they had kept putting my symptoms down to stress and thought it was psychological,” explains the 56-yearold, adding that an x-ray when she was eight, failed to detect the tumour. By the time it was discovered, it was five centimetres in diameter. By that stage Jacqui couldn’t read script written in pencil or see the blackboard at school. The tumour was successfully removed. However, Jacqui’s eye sight couldn’t be restored. “The day I went into hospital, I remember looking out the window and still being able to read a sign outside but after the operation, I was basically totally blind.” Over the following months, Jacqui regained what she estimates to be about ten per cent of her vision, whereby she could see movement, colour and shapes but not faces. She was enrolled in a school for the blind based in Auckland and, hailing from Blenheim, this entailed boarding. “I didn’t mind because I used to read Famous Five books, where they went to boarding school and get up to all kinds of mischief so I kind of had a romantic view of it,” she laughs. “When I first arrived, it was such an adventure but I eventually came down to earth.” It was there she learnt braille and, during this time, her mother decided to learn braille too, enabling her to send her daughter letters.

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The Brain Injury Association

rain Injury is often called the “silent epidemic” and referred to as a “hidden injury” as more often than not there are no outwardly visible changes to a person after a brain injury. It is reported that 99 people a day in New Zealand have a brain injury. However, a brain injury can have life changing results for both the injured person and their family / whanau that can lead to loss of careers, businesses and at times result in family fracture. The causes of brain injury are many and varied, from impact injury’s such car crashes, violence, falls and sports injuries, to health-related events such as strokes, infections such as meningitis, brain tumours, neurotoxic disorders, chemical injury due to poisoning by drugs, alcohol, gases, solvents and pesticides. It can be very difﬁcult to predict what the long-term outlook might be as every person; every injury and every recovery is different. People with brain injuries are often seen as lazy or hard to get along with by family and friends. Their personality may have changed, they can no longer process information quickly and make poor decisions.

The Brain Injury Association Northland provides a safe, barrier free service to support and assist people understand and navigate through the confusing aftermath of an injury, this includes both the individual with the injury, as well as the family and supporters. Currently the organisation has two Liaison Ofﬁcers – Vikki Herdman and Dave Wright. We cover from Wellsford to Cape Reinga. There are monthly support groups in several areas in Northland. We offer education and information to families and the community; we can assist in ﬁnding appropriate professional assistance and services as well as liaising with ACC, WINZ, Insurers and other health care providers. We are also very involved with injury prevention and roadsafety education. We participate in in the annual RYDA program in high schools, Court directed driver retraining with St John’s Driving Academy and the roadside Fatigue Stops during the summer in partnership with local agencies such as Northland Regional Council and Northland Roadsafety Association.

98 Cairnﬁeld Road, Whangarei, PO Box 4001, Kamo Phone 09 459 5013 Hours: Monday, Tuesday, Thursday and Friday 9am-2pm Email: northland@brain-injury.org.nz Website: www.brain-injury.org.nz

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My name is Tony Green and this is my story

was buying a motorbike, a 2009 Triumph Tiger off Trademe. I was on the phone saying “OK I will go to the bank and put the money in ……” Moments later, I was found collapsed, not breathing, frothing from the mouth and turning grey! I had suffered a cerebral Aneurysm. I was taken to Auckland ICU by helicopter “Dam” wish I could remember that trip. 14 days later I was discharged. I took 12 weeks off work to recover, doing jigsaw puzzles and hanging out with family. I went back to my job as a boiler maker/ welder, something I can do in my sleep, but things were different. I was not the same person, I looked like him and talked like him, but I didn’t feel like him. At my next job I told the boss what had happened, and he asked how my depression was, WOW that was the change. I managed at work, ship building is in my blood as I was born in Liverpool, England. However, my home and football life deteriorated. Alcohol became my coping tool. A year post aneurysm a series of events fractured my family. It was my lawyer who told me I needed to speak to Vikki at the Brain Injury Association. My work contract was ﬁnishing and so I spent the next 4 months learning about the person I had become and how to manage

my symptoms. To me everything is Black or White, there is no grey. When I am in new surroundings, I just need time to process information and digest it. I am not stupid, but I can’t cope with too many instructions or too many people speaking at once. The guys at work are very supportive. I still get support from the Brain Injury Association and ongoing counselling. I work at Morgan Engineering and my foreman is Paul Hartigan has this to say; “I met Tony one night and we started talking as he knew my son from football. We had a common interest in welding. After talking with him we organised a time to meet at work to talk about possible employment. He told me about his brain injury and I wasn’t sure if he was ready for full time work. He explained that he had rehab to go to during the week which would interrupt his work, but he really wanted to attend these meetings. We accommodated him and were happy for him to attend and employed Tony under these circumstances. “As Tony got to know everyone, we found him to be a mad keen footballer. He loved to talk about football a lot. He is very passionate about his sport. Tony also liked to talk about his injury with the guys as he was learning more

about brain injuries as he progressed and attended his meetings. I think Tony would be a great advisory for brain injuries as he is approachable, friendly and passionate. He can offer some great advice. “As an employer we appreciate there are people who have acquired impairments through injuries that can affect their ability to move back into the work place. One of our aims in the Company is to help these people obtain employment on a long term basis.” Some of my family and most of my old mates help me regulate my emotions and my actions and reactions. I can now understand the person I have become. My work life is great and my football life fantastic, however, my emotional road is a rocky one. Life is beautiful, and I live each day fully.

■ Tony Greene with his employer Paul Hartigan

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CCS Disability Action About Us Mo Matou

CS Disability Action is a nationwide organisation that provides support and advocacy for people with disabilities. We work in partnership with disabled people, families and whanau to support them to have choice and control in their lives. As well as creating individually-tailored supports, we work in communities to identify and remove barriers so that all people can lead positive and connected lives. We also advocate for local and national policies that ensure that disabled people’s rights are upheld. What we offer Our model is based on putting people ﬁrst, and ﬁnding ways to support the choices they want to make, and the lives that they want for themselves. At CCS Disability Action, we believe that all people have the right to be included in their communities and enjoy the same rights and opportunities that every New Zealander might expect.

We offer a range of services to support individuals and families to achieve these aims: • We support people to access paid and sustainable employment by providing individualised support for potential employees and employers. • Our ongoing vocational support services enable people of all abilities to participate in training, work or community activities. • Our dedicated youth team can offer tailored support with education, employment and can connect you with friends, youth groups and your community. • Our Karanga Maha group supports people of Maori and Paciﬁc Island descent to engage with their own cultural identities and develop personal leadership. • Our Community Support Coordinators provide advocacy and support to remove any barriers to accessing the quality education of your choice. • We provide ongoing support, information

and options for young people preparing to leave school for further study or employment. • We work in partnership with disabled people to support them to lead independent lives. We provide community-based support and also support people to transition from residential care into their own home. • We offer a range of respite options designed to provide a break for families and a positive and rewarding experience for your child. • We administer the mobility parking service in Northland, supporting people to park in accessible spaces in the community.

CCS Disability Action Northland 291 Kamo Road, Whangarei Phone: (09) 437 1899 or 0800 227 2255 e: northland@ccsdisabilityaction.org.nz www.northern.ccsdisabilityaction.org.nz

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Lee-Ann Kerr My story

■ Rob Battcher and Lee-Ann Kerr

oving to a new place can be tough, but Lee-Ann Kerr has found that with a little support, there is “light at the end of the tunnel”. After 17 years living and working in Auckland, she moved up to Dargaville for a fresh start. Initially she found it hard to ﬁnd new employment. With support from CCS Disability Action, she was able to get a job working for Kaipara Refuse, where she ensures that the materials people bring

to the plant are properly separated and recycled. Lee-Ann found acclimatizing to her job relatively easy. “Well, I’ve never worked out in the elements before but I’m slowly learning. Where to stand when there’s a lightning strike, where not to stand…” Lee-Ann’s job has also allowed her to develop one of her talents: salvaging things. One of her biggest ﬁnds was a weaving loom which she uses to make her own cloth and fabrics. After restoring it herself, Lee-Ann learned how to use it via Youtube videos. Thanks to this talent, she has also supplied the plant’s on-site op shop with plenty of items to re-sell. One of her other favorite parts of the jobs is destroying any chipped plates or glass. “We call it therapy!,” she says with a laugh. Rob Battcher, Kaipara Refuse’s managing director and Lee-Ann’s boss,

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says her key quality is the willingness to assert herself. “A lot of people, even older people like myself, struggle with telling other people how to do things,” he says. “Lee-Ann doesn’t have any problem with that, whatsoever.” Thanks to her job, Lee-Ann has the freedom to pursue her hobbies and get involved in the community. She has helped out with the Dargaville Boat Club at their regatta and volunteers at a hospice shop. She is also likes to go to dinner at the local RSA every Friday. Lee-Ann credits CCS Disability Action Employment, particularly Coordinator Angel Cartwright, for their support in helping her ﬁnd work, especially when prospective employers were unresponsive. The underlying message was always the same: “Try not to get discouraged and keep going forward,” Lee-Ann says.

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Deaf Aotearoa

eaf Aotearoa is the Disabled Persons’ Organisation representing the voice of Deaf people, and the national service provider for Deaf people in New Zealand. It is also the New Zealand-representative member organisation of the World Federation of the Deaf. Deaf Aotearoa recently celebrated its 40th birthday. The organisation was ﬁrst established as the New Zealand Association of the Deaf in 1977. Deaf Aotearoa’s services are available from 13 ofﬁces nationwide, including Northland. First Signs First Signs connects families who have a deaf or hard of hearing child aged 0-5, with New Zealand Sign Language, the Deaf community and Deaf culture. This is achieved with home visits, visits to the child’s Early Childhood Education provider, video chat, resources and social gatherings. Youth Service Deaf Aotearoa’s Youth Service engages with deaf youth, promoting positive Deaf identity and leadership in young deaf people. Deaf Aotearoa also has a Youth Intern Programme, with interns working and studying within the organisation for 12 months.

Hauora Hauora is a wide-ranging service focused on improving lives and supporting independence. This includes coordinating access to other services, providing information and advice, and assessing eligibility for funded equipment such as ﬂashing doorbells and visual smoke alarms. Employment Services Employment service is specialised for deaf and hard of hearing people to be successful in the workplace. NZSL Promotion This includes Adult Community Education delivered in NZSL for Deaf people, bespoke Deaf Awareness and NZSL courses for businesses and organisations, and New Zealand Sign Language Week, held annually in May.

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NZSL Week In its 12th year this year, NZSL Week celebrated the theme ‘New Zealand Sign Language is for Everyone’. A high-profile campaign featuring Deaf families demonstrated the value of NZSL across the generations. New Zealand singer-songwriter Tiki Taane also featured in a television commercial showing his song ‘No Place Like Home’ being performed by sign-singing flashmobs in three locations around New Zealand. Prime Minister Jacinda Ardern was also first to pick up an NZSL Leaders’ Challenge, filming a short video in NZSL to kick off the week. iSign iSign is a nationwide New Zealand Sign Language interpreter booking service. iSign receives job requests for NZSL interpreters and coordinates interpreting services provided by more than 80 qualified interpreters.

Deaf Aotearoa 1a Deveron Street, Whangarei Phone: 437 2022 | 021 641 178 Website: www.deaf.org.nz Email: national@deaf.org.nz Open: Monday-Thursday 9am-4pm and Friday by appt

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Tuhoi Henry My story

rom his home in Whangaruru to appearing on national television, Tuhoi Henry is fast becoming one of the Deaf community’s up and coming young leaders. The 21-year-old, of Maniapoto and Ngati Whatua (Te Uri o Hau) descent, has been busy since his days as a student at Kelston Deaf Education Centre’s Tu Kokiri. A talented performer, in 2018 Tuhoi responded to a call from Deaf Aotearoa for sign singers to perform the National Anthem. His impressive audition got him the job of recording the anthem in New Zealand Sign Language (NZSL) to be played at All Blacks games during last year’s British and Irish Lions tour. Tuhoi worked with Deaf Aotearoa again early this year, as one of two Deaf stars of the NZSL Week 2018 television commercial. This time Tuhoi’s sign-singing skills saw him co-lead a sign-singing ﬂash mob with the Deaf community, in three locations. The chosen song was ‘No Place Like Home’ by Tiki Taane, with whom Tuhoi shares Maniapoto roots. “It was a lot of fun making the NZSL Week TV commercial,’ says Tuhoi. ‘And it was really great meeting Tiki Taane!” Deaf Aotearoa General Manager – Strategy, Victoria Manning, says Deaf Aotearoa wanted the commercial to reﬂect the Deaf community’s wonderful

■ Tuhoi Henry sign-sings with Tiki Taane for an NZSL Week 2018 flash mob and diverse talent. “Tuhoi was an obvious choice. We were thrilled he agreed to be one of the co-leaders of the sign-singing flash mobs.’ She says having him on board has been hugely valuable. ‘The results speak for themselves!’ The final video, featuring Tuhoi and his co-stars Janet Martin and Tiki Taane, has amassed tens of thousands of views and attracted widespread positive feedback. Plus, Tuhoi is now embarking on a year-long

youth internship with Deaf Aotearoa. Tuhoi’s vision for the future includes more Maori NZSL tutors. He is helping to achieve this by being one of six people awarded a special Maori scholarship from the NZSL Fund to study the Certiﬁcate in Deaf Studies at Victoria University of Wellington. Tuhoi is a busy young man, with his study, work and performances, and Deaf Aotearoa looks forward to supporting his ongoing development and contribution to the Deaf community.

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The New Zealand Down Syndrome Association

■ The Lucky Few Tattoo - Symbol for Families with Down Syndrome

he New Zealand Down Syndrome Association (NZDSA) is a family/ whanau driven organisation to support people whose lives have been changed by Down Syndrome. What is Down Syndrome? Down Syndrome is a life-long condition that causes delays in learning and development. It cannot be cured but problems can be eased if people with Down Syndrome have the right help and if other people have a positive accepting attitude. People with Down Syndrome do have features in common, but they also closely resemble their parents and family. Each person is an individual, with a unique appearance, personality and set of abilities. The extent to which a child shows the physical characteristics of the Syndrome is no indication of his or her intellectual capacity. Northland Down Syndrome Support Group In Northland the Regional Coordinator for

Down Syndrome is Kathryn Sadgrove who covers from Wellsford to Kaitaia. Our aims are to promote and advocate for positive attitudes in the wider community, to promote the rights and inclusion of people with Down Syndrome and to raise public awareness and promote further the understanding of Down Syndrome. Angie Hawke is our representative on the NZDSA Committee and is able to take any issues affecting Northland families to the National Committee. Kathryn’s role as volunteer coordinator is to provide support and information to the families that have a new baby born with Down Syndrome. Kathryn or Angie will visit the family in the hospital or locally in their own home and provide resource material – parent information packs, educational DVD’s etc. With the family’s permission we can link them to another family in their own area to provide them with extra support. We also provide training for parents/ caregivers and connect with families through email and Facebook.

As parents we felt that our young people with Down Syndrome needed the opportunity to get-together with other youth who have a disability to socialise, form lasting friendships and relationships. In 2013 we formed a casual group in which the young people get together once a fortnight to participate in activities, art n craft, movies & pizza etc with the favourite being 10 Pin bowling. The young people just love to hang out together. Support group meetings are held in Whangarei. Please contact us for more information.

Address: Kara Road, RD9, Whangarei Telephone/Fax: 09 434 6723 Freephone: 0800 693 724 Email: ksadgrove@xtra.co.nz Facebook: Northland Down Syndrome Support Group Websites: www.nzdsa.org.nz www.NorthlandDSSG.org

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Daniel’s Story

aniel Tucker loves art, particularly drawing and he is a proliﬁc poet. He is 24 years old and recently had a health issue, which scared the life out of his immediate family: mother Karen and sisters …. This related to a heart condition, which Daniel has had ever since he was an infant, making him particularly susceptible to heart disease. Thankfully Daniel pulled through this latest hiccup of the heart. His family were so relieved and delighted that they celebrated in unusual style. Off they went and each got a family tattoo consisting of three arrows that symbolize the three 21st chromosomes particular to Downs Syndrome, while also symbolising how we rise up and move forward despite adversity. The tattoo is a statement about Down Syndrome, and family and friends of people with Down syndrome all over the world are

now getting this ink to which portrays their love and appreciation to have such a special person in their life. Daniel works in developing his art at the Papermill on 38 Kamo Road. This organisation started with the sole activity of making paper by recycling. These days it embraces a range of activities in the Arts including drawing and painting. Daniel interest in visual art reﬂects this. He has a special interest in the Classics, mainly Egyptian hieroglyphics and Egyptian history. Annelies Leeuwenburg is Daniel’s supervisor. She’s says that Daniel is a great socialiser and gets on with everyone around him and is a valued member of the Papermill team. Here is one of Daniel’s poems. Here is an excerpt from one of Daniel’s many poems..

■ Daniel Tucker (right) with his boss Annalies Leeuwenburg

“Look deep in yourself, close your eyes and keep your mind wide open and see you speaking our life”

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Epilepsy awareness – see the person, not the condition Kia titiro ki te tangata. Tena Koutou Katoa

f there’s one message Su Mei li Morgan ( Sam )of Epilepsy Northland would like us all to know Epilepsy is a condition people live with, and live life to the full. It’s essential that we focus on what people with epilepsy can do rather than what they can’t do. By gaining understanding and acceptance in the community, everyone with epilepsy can live fully. Sam’s role as Epilepsy Educator is to support both the person with epilepsy and their whanau, within the wider community. The aim to improve their management of this condition and quality of life. To meet face to face kanohi to kanohi is a strength in working with people and their whanau throughout Tai Tokerau, ensuring that everyone living with epilepsy has the opportunity to share and discuss any questions or concerns they may have. Sam acknowledges people with Epilepsy have the ability to be experts of their own change given the right supports. Meeting with them and listening to their fears and concerns can alleviate many anxieties held, allowing them to move forward by taking away feelings of “I can’t” and redirecting attention to all the things each person with epilepsy can do. By understanding their

condition giving them the tools to build on things they do well, results in focusing on looking at new opportunities. A diagnosis of epilepsy can be a huge shock not just to the person but to the whanau as well. Sam has an extensive background in working in the community in the areas of health, education and social services. She uses a collaborative approach in working with schools, whanau and wider community. She provides education and strategies to equip employers in their understanding of employing a person with epilepsy. Gaining understanding of what a seizure can look like for the individual and what to do when they experience one, empowers them with facts taking fear out of the equation, resulting in a culture of acceptance. Sam also runs public seminars on epilepsy for the wider community. By raising awareness of epilepsy in the community, we are able to see the person and not their condition. People have a better chance of managing their condition when they are well supported by their whanau and wider community. Don’t let epilepsy rule your life - It’s not who you are. Learn about your condition

and ﬁnd what works for you. Epilepsy NZ is there to support you in any way we can.

Sam Morgan, Epilepsy Educator Address: Suite 5, 71 Bank St, PO Box 712 Whangarei Ofﬁce hours: Monday-Thursday – 8am-5pm Phone: 09 438 5498

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Ashley’s Story now her oyster and she sure has been very proactive at grabbing life by the horns and making the most out of life. Ashley now has her driver’s licence (after eight months of intense training through Literacy Whangarei) and is making up for time that she missed out on, by furthering her education. She has completed Part 1 and Part 2 courses with Te Wananga Maori and currently studying the ﬁnal Part 3 of the course. In addition to this study, Ashley is attending Parenting Group classes run by Ngati Hine. She believes this will give her good grounding for when she commences her Early Childhood Care studies. Marion Kerepeti who works at Literacy Whangarei says Ashley is an excellent student who has a thirst for knowledge and enjoys learning. She willingly participates and contributes in class group discussions, often mentoring others as she progressed from Teina to Tuakana. We are extremely proud of Ashley and we are pleased to acknowledge that she is part of Literacy Whangarei. Previously Ashley did voluntary work at the SPCA and Quarry Orchard Farm. Ashley’s goal is to complete an Early Childhood Care course and work in the Early Childhood industry and we have no doubt with her drive she will get there.

EPILEPSY FIRST AID Collapsed & Shaking? Epilepsy Seizure? ■ Ashley Rogers and mentor Suzzette Monroe, group tutor at Literacy Whangarei

shley Rodgers had a history of frequent seizures since she was 6 months old, ranging from Focal partial to Tonic Clonic seizures. Ashley is now 31 years old and a full-time mum (with the help of her mother Marlene) has three children under 5 years the youngest being only 5 weeks old (at the time of interviewing her) and lives in Whangarei. Ashley was diagnosed with Lennox – Gastaut Syndome a form of severe Epilepsy which is characterised by multiple types of seizures and an intellectual disability. Ashley would encourage people with Epilepsy to contact Epilepsy Northland if they need any advice or help and has found them very supportive and easy to talk too. It has now been 15 years since Ashley last seizure. The world is

Keep calm Note the time Cushion the persons head Wait for the convulsions to stop Put the person into a stable side position Stay with them until their breathing turns natural again If the seizure continues after 5 minutes call an ambulance Stable side position

Don’t hold them down Don’t put anything in their mouth Don’t move them unless they are in direct danger If in doubt, call 111 for an ambulance

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Huntington’s Disease Association

he Huntington’s Disease Association (Auckland) Inc is currently working with 900+ people living with symptoms, at risk of developing symptoms, or at risk of developing symptoms of Huntington’s Disease in the Auckland and Northland regions. With the hard work and dedication of the Manager, Jo Dysart and Dipika MacKenziey (Support worker), they support the carers, family members, GPs, medical specialists and other agencies. Family Liaison Service Our professional staff are Huntington’s Disease (HD) specialists who help families and professionals respond to the unique challenges of HD. The clients of the Individual and Family Services programme are the person living with HD, their caregivers and family members including people at risk. Support Service This staff provides a service which includes assessing people’s needs through one to one consultations, educating clients about HD and giving information about community services, ﬁnding sources of support, facilitating appropriate referrals and then following up. The service can involve setting goals with the clients, strategising and solution focused problem solving, either working individually with clients or in groups. Education and Awareness For over 30 years we have been providing information about Huntington’s Disease to those living with HD, their carer’s as well as the support agencies and medical professionals. Information ranges from symptomology of HD to how to manage the symptoms. What is Huntington’s disease? Huntington’s disease is a hereditary neurodegenerative disorder caused by and expunction in the IT-15, or Huntington’s gene on chromosome 4. Each child of an affected parent has a 50% chance of developing

the disease, most people with HD develop symptoms in their forties and fifties although around 10% of patients have onset of symptoms before age 20 and 10% have onset after age 60. Who Gets It? Huntington’s is a genetic disorder. About one in every 10,000 people has HD and approximately five in every 10,000 are at risk of developing the disease. HD is not discriminative can affect both sexes and any race. Primarily, HD affects adults. Symptoms usually appear between the ages of 30 and 45 but there is Juvenile HD which appears in children and late onset HD in adults in their 60s. What are the Symptoms? There are three main types of symptoms in Huntington’s disease: physical symptoms including involuntary movements and diminished coordination; emotional symptoms including depression, irritability and obsessiveness; and cognitive symptoms, including loss of ability to recall information, loss of attention and difficulty with decision making. Liaison We are privileged to work alongside clinical experts and DHB’s offering a multi-disciplinary team approach to the individuals and family/whanau affected by HD. Along with this we have tight links with the Auckland University Centre for Brain Research and our Patron Sir Richard Faull. We therefore have ongoing updates on clinical research and research to help develop treatments and one day, a cure.

Address: PO Box 16181, Sandringham, Auckland 1351 Phone: (09) 815 9703 | 0800 432 825 Email: huntingtonsakld@ xtra.co.nz Web: www.hdauckland.org.nz

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■ Charles with his brother who is symptomatic of HD

Charles Sabine Emmy Award winning journalist and news producer Charles Sabine was one of our keynote speaker for the Huntington’s Disease Associations of New Zealand national conference held in May

r Sabine made a name for himself as a high proﬁle journalist and news producer on America’s NBC network before becoming an advocate for Huntington’s disease awareness. “Charles himself has the HD gene and has felt the impact of the disease across his family. Charles Sabine is an internationally acclaimed journalist and a spokesperson for patients and families with degenerative

brain illness. Educated at Brentwood School in England, Sabine went on to obtain ﬁrst-class honours degree in Media Studies from Westminster University, where he was tutored by BBC Radio Producer Charles Parker. Sabine joined NBC in 1982 in London and became a Producer on the “Today” show in New York in 1987. He has participated in many major international news stories over the last two decades including: Bosnia, Kosovo, Chechnya, Syria, Haiti, South Africa, Rwanda, Zaire, Iran, Poland, Romania, Hungary, Czechoslovakia, and Northern Ireland. Sabine, as Producer of the NBC Nightly News, and Tom Brokaw’s team coverage of the Romanian Revolution, received an Emmy Award for his program segments which aired in December 1989. Sabine became an advocate for freedom of scientiﬁc research, and the victims of degenerative brain illnesses, in particular Huntington’s Disease from which his family also suffers.

Sabine contributed to the drafting of the late Senator Edward Kennedy’s last act of legislation—the Genetic Information Non-discrimination Act, designed to protect the rights of individuals with genetic predispositions in the American workplace and in insurance. Sabine was an active lobbyist in the successful implementation of the UK’s Human Fertilisation and Embryology Act 2008. The 50th Anniversary of Canada Gairdner Foundation in 2009, attended by 22 Nobel Laureates, was marked by a debate between Sabine and Nobel Laureate Sydney Brenner about the future of personalised genomics. In 2009 he was the star guest at the Italian National Telethon, for which a ﬁlm about him was produced by RAI cinema. Sabine is a spokesperson for Huntington’s Disease lay associations around the world, Charles with his brother who is symptomatic of HD

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About MND New Zealand

otor neurone disease (MND) is a fatal neurological disease. It causes the muscles that enable you to move, speak and swallow to gradually stop working. Eventually, youâ&#x20AC;&#x2122;re locked in a body that can no longer move. MND can affect anyone. It often comes as a shocking diagnosis in otherwise healthy people, frequently in middle age. It is a rapidly progressing disease that requires frequent adaptation to increasing levels of disability, and requires increasing levels of support. Every week, another two people are diagnosed. In 2011, one in every 200 deaths in New Zealand was due to MND. There is no cure. MND New Zealand is a small organisation whose main purpose is to help people living with MND have the best quality of life

possible. We provide a crucial free service. Our Support Team helps people with MND access the medical expertise, services and equipment they need, and provides consistent, individualised support through all stages of the disease. We also educate and support whanau, carers and health professionals. The more informed the health professionals, the more co-ordinated the care. The more empowered the family, the better the outcome and quality of life for those involved. We work to increase awareness and understanding of MND in New Zealand, to be a reliable link to information related to MND, and to encourage research. We are the only national charity in New Zealand focused on MND care, research

and campaigning. We are a small, lean organisation, and only 8% of our funding comes from the Ministry of Health. We depend upon fundraising and donations to continue our service. We are a registered charity under the Charities Act 2005, registration number CC35320.

Motor Neurone Disease Association Address: Yarnton House, 14 Erson Avenue, Royal Oak, Auckland PO Box 24036, Auckland 1345 Phone: (09) 624 2148 Mobile: 021 230 3038 Email: teamldr@mnda.org.nz Website: www.mnd.org.nz www.facebook.com/mndanz

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■ Paul Beazley with David Seymour

David Seymour

fter eight years in real estate sales in Northland, David Seymour was at the height of his career. For the last few years, he had ranked in the top 20 salespeople in New Zealand for the LJ Hooker group. Then, in February 2018, he was diagnosed with motor neurone disease (MND), a terminal neurological condition that leads to rapidly increasing levels of disability. Not that David let that slow him down much at ﬁrst. “There were things that needed to be done,” he says, “and I wasn’t about to give up because I had MND.” He decided to put his diagnosis “in a box” and get back to work. He had three months after his diagnosis to achieve his career goal of the past three years: life membership of LJ Hooker’s Multimillion Dollar Captain’s Club. It’s an honour held by just 70 people out of 7000 LJ Hooker real estate agents internationally. “I had to rally,” says David. “I couldn’t let MND slow me down!” He achieved life membership by the end

of April, then set another goal: working part-time through to August and achieving another 10 sales. He achieved his goal in July and by September he’d sold 16 properties. With all his listings now sold, David reluctantly decided to stop working, as his energy levels and ability to drive and walk were deteriorating. His colleagues at LJ Hooker had been highly supportive. “They would carry things for me and help me – the whole team was there for me. Later in the year we had 25 people from the team turn up to do a working bee at my home to get the garden ready for Christmas,” says David. His clients – mostly repeat clients at that point in his career – were supportive too. “I was up front with people and explained why I had my walking stick. They knew it wasn’t going to stop me from negotiating a deal on their house.” He missed out on listings from just two clients who were concerned David’s illness would be a hindrance to his selling. “They were wrong,” he says, “but that’s their prerogative.”

Now David volunteers a few hours every week to coach and mentor young salespeople in his former ofﬁce. “I think it’s good for my mental state. I’m a very goal orientated person and my goal is now to get these people to the next step in their career. I think I’ve got a few things up my sleeve that work still. It’s satisfying that I can give back, and it’s working – these young guys are stepping up.” “It’s go hard or go home for me, and it always has been.” “David’s a very successful salesperson. David set himself a lofty target after he was diagnosed with MND and he achieved it. His determination was, and still is an inspiration to our team. “David kept working for as long as possible, and he’s now working voluntarily with some of our new salespeople, passing on his wisdom and helping them structure their business.” Paul Beazley, LJ Hooker Whangarei Ph 094381332

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Northland MS Society

orthland Multiple Sclerosis Society offers a wide variety of services to people with MS, family/whanau members and carers. The Northland area extends from Wellsford, coast to coast to Cape Reinga. The service provides information, education and support, encouraging a proactive approach to managing this disease. If you have MS the Society provides for you and your family and/or carers: • A MS Field Worker who is a NZ Registered Nurse. • Home visits. Support and information to you and your family about your condition or in your role as a caregiver. • Educates you, your family and other health professionals about MS and related disorders. • Advocates for you with other support agencies and health professionals and informs you of services available in the community. • Provides education material and books, both available from the MS ofﬁce. • Holds support groups for those with MS. • Offers a weekly MS Exercise class at Kensington Fitness Centre, Whangarei. The following free resources are available: • Comprehensive explanatory booklets and MS library books to take out on loan. • Bi-monthly newsletter which includes useful information on research and development of MS and advice on staying well.

• Field Worker outreach service from Wellsford to Cape Reinga, coast to coast. What is Multiple Sclerosis (MS)? Multiple Sclerosis is one of the most common diseases of the central nervous system. A fatty substance called the myelin sheath covers the fibres of the nervous system. The myelin protects the nerves and helps the messages move between the brain and the rest of the body. In MS, the myelin sheath covering the nerves in the brain and spinal cord become scarred in scattered patches. This is multiple scarring, or sclerosis. Essentially this distorts or prevents the flow of messages from the brain and the spinal cord to other parts of the body. The distortions to the messages travelling through the nervous system cause a range of problems for the people with MS. Although it is important to note that there is no typical set of MS symptoms, the following are common (in varying combinations or severity): • Loss of balance or coordination. • Tremor and weakness. • Blurred or double vision, eye pain (usually only affecting one). • Difficulty with legs, arms and hand movements. • Bladder and bowel problems. • Numbness and pain. • Problems with thinking and remembering. • Sexual problems. • Fatigue.

What Causes MS? At this time the cause of MS is still unknown. However, research suggests it is likely to be a combination of the following: a reaction to a virus, possibly years after infection; exposure to an unknown environmental agent before puberty; an auto-immune reaction in which the body attacks its own tissue for an unknown reason; or a genetic susceptibility to the above triggers. How is MS Treated? While MS still cannot be cured, much can be done to help manage the condition. There are MS-speciﬁc treatments available. These directly target the immune system. A Neurologist determines whether these are relevant for each person. Generally the person with MS works with their GP on the day to day management of the condition. As our Ofﬁce Administrator is only available 14 hours per week (Monday and Tuesday from 9am - 2.30pm / Wednesday 9am to 12pm), an answer phone is in place to take messages. Urgent contact can be made to the Field Workers mobile phone. Address: Suite 6, 71 Bank Street, Whangarei 0110 Phone/Fax: (09) 438 3945 Mobile: 027 539 9883 Email: nthldms@xtra.co.nz Web: www.msnz.org.nz Facebook: Northland Multiple Sclerosis Society

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■ Cathie Mussell - with her employer Lesley ArmstrongJennings

Cathie Mussell

i, my name is Cathie Mussell. I was born and raised in Los Angeles, U.S.A. I came to New Zealand on holiday in 2005 with my (then) husband. My life took a turn when I returned to the U.S., my only child was killed in a hiking accident, he was 19 years old. I needed somewhere that was peaceful and beautiful so my husband and I started the process of obtaining residency here in New Zealand. It was quick, it was meant to be. We arrived on the Tutukaka Coast in 2006. The jobs we needed to obtain for residency were at a grocery store. I found myself getting more and more tired. I was in my 40’s then, so I wasn’t really ‘old’ but I found that job exhausting. We purchased a five acre lifestyle property and I loved gardening, but again, I was finding everything very difficult. I found a local job at www. shopnz.com, an internet gift shop and the hours were perfect for me, just a few hours a few days a week. In early 2007 something felt ‘off’ and I began to get numbness in my hands and down one side of my body. My GP referred me to the Hospital where a CAT scan

revealed nothing, an MRI scan followed and I was diagnosed with Relapsing Remitting Multiple Sclerosis. I had only been working at my new job for a few months and now I had all this stupid stuff happening. My boss was very understanding as I had to miss quite a few days from work. I immersed myself in everything I could learn about MS. With Relapsing-Remitting MS, symptoms come and go, so my feet may feel ‘buzzy’ with pins and needles one day, and the next day my hands may feel numb. I am still walking, although in the beginning, my fear was that I would end up in a wheelchair. Eleven years on, I am not worried if I do or don’t. I use a walking stick sometimes and should perhaps use one more often as it does help with my balance. I still live in Tutukaka and am grateful to have my job at ShopNZ.com Kiwiana Gift Store. Her employer Lesley ArmstrongJennings states “Cathie is a hardworking, loyal, reliable staff member, and a great friend as well. It’s those qualities that matter, and we work around the illness if and when it ﬂares up.”

Being able to work gets me out of the house and keeps me moving, which is important. I get fatigued easily with MS and normally I don’t do much else after working. I am fortunate that I don’t have a commute, as my job is just down the road and even though my boss’ business continues to grow, I still only work a few days a week. My work mates are very understanding with my ‘lapses of memory’ and they are dear friends to me. Keep moving, at whatever pace you can manage. I have learned since my diagnosis, to go at MY pace, not someone else’s. I love Music, and one of my favourite things to do is attend concerts, and that is a priority for me now. There are things that I don’t do anymore, and that is o.k. too. I don’t agree with the saying that “I have MS, but MS doesn’t have me”. I do have MS, and sometimes it kicks my ass, as it has kicked many others throughout the world. However, we do what we can; we keep moving until we can’t, we keep working if we can. Until there is a cure, it is the new normal with Multiple Sclerosis.

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NorthAble Disability Services

orthAble is a Charitable Trust. The Government provides funding to our Organisation to enable us to provide you with advice, assistance and to support you in making informed decisions on accessing health and disability services. Our service is free, non-biased and available to anyone. We can link you to a range of information including support organisations and groups, education and training, recreation, equipment options, funding options and Firstport. We welcome the opportunity to visit your organisation or community group anywhere within Te Tai Tokerau Northland and present on disability information and the services provided by NorthAble.

Needs Assessment Service Coordination (Nasc) NASC is a free service for people living with a disability. If you meet the Ministry of Health’s (MoH) eligibility criteria, NASC will meet with you to explore your support options and goals. We can then discuss the information and support options available: These may include: • Manage household tasks • Self-care • Supported assistance in the community • Attendance at MOH and MSD funded activity programmes • Carer Support Subsidy providing time out

for unpaid full time carers • Rehabilitation support • Residential Support Services • Support to live in your own residence Talk to our NorthAble Needs Assessment Service Coordination Team (NASC) if you or someone you care for is 0 – 65 years old and needs long term support due to a physical, intellectual, neurological, sensory disability or autism. Mobile Van Service Our Mobile Van Service attends a number of local events and expos as well as provides a monthly van service to remote areas throughout Northland. We specialise in providing free and informative equipment presentations and training to community groups and organisations, health groups and professionals and the wider sector. These presentations provide you with important information and tips on using equipment correctly and keeping yourself safe in your home environment and the community. We are happy to provide In-home demonstrations with some of our products (T&C apply) Equipment Plus NorthAble EQ+ is Northland’s largest supplier of equipment and products to support people to remain active and

independent. You may have experienced an accident or injury, be waiting for, or recovering from surgery, or simply aging gracefully and ﬁnding some of those everyday tasks and activities more difﬁcult. Whatever your situation, we have a large range of equipment to assist you available for sale and hire. Our trained and experienced Equipment and Disability Information Consultants offer free advice on the wide range of equipment and supports for daily living that we have available for purchase and hire. LYNKS Programme LYNKZ and community participation programme for 16-64 year olds including: • Cooking classes - preparing & cooking nutritional every day meals, supermarket shopping & budgeting • Community - support participants to plan activities or attend events of their choice • Life skills - from budgeting to catching a bus, help with CV preparation, work experience and job searching.

To ﬁnd out more: Phone 0508 637 200 Email drc@northable.org.nz Web northable.org.nz Web equipmentplus.org.nz

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Breeana Towns Looking toward the future

eet Bree, a 26-year old woman engaging with the community, working, and pursuing her dreams. Bree works part-time at Parahaki Court Rest Home, attends NorthAble’s LYNKZ programme, and enjoys spending time with her friends. Bree has been working at Parahaki Court for ﬁve years, beginning with work experience whilst still at school. These days, she has a paid position as a cleaning assistant; her duties include heating up cups of tea and dinners, doing dishes and much more. However, at the beginning and end of her shift, Bree often uses her own time to socialize and spend time with the residents. When asked about her favourite aspect of the job, Bree replied thoughtfully, saying, “my favourite thing is talking to the residents... I love my job.” Her overseer, Maryanne describes Bree’s “rapport with the elderly” as something she really values in Bree as a worker. Maryanne also focused on Bree’s high work standards and her journey in becoming

more conﬁdent and successful at work. Maryanne also went on to highlight how this has made Bree a better person and brought out her caring side, adding, “we really value her as part of our team.” Bree’s caring nature is reﬂected in her interests outside of work, namely, working and playing with animals. This love for animals is also shown in her past voluntary work at the SPCA. Bree’s current job at Parahaki Court has helped her grow increasingly independent, build maturity and responsibility, and make friends. Bree’s love for animals is what characterises her long-term goals. Surrounded by grass, fresh air, and playful dogs, Bree’s dream is to be independent and own a doggy-day-care. Bree is a capable young woman working towards an independent lifestyle. She is a role model to her peers at LYNKZ and demonstrates that impairments are not a barrier to living a full and meaningful life. She truly epitomises “getting out there.”

■ Breeana (Bree) Towns with employer Maryanne at Parahaki Court rest home

■ LYNKZ youth in “Fashion Show” at EXPO

ENHANCING THE of New Zealanders with cerebral palsy.

Find out more at cpsociety.org.nz • 0800 503 603 • 8 Railway Street, Newmarket, Auckland

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Parent to Parent Northland

very year hundreds of Northland whanau face the unique challenges of caring for a baby/child/teen with disabilities and health impairments. Parent to Parent has been supporting these families for more than 35 years with its three core services: 1. Information and support on over 3600 different conditions 2. Workshops for parents and Support Parent training 3. Supporting the siblings of children with disabilities. No other organisation in New Zealand offers these services, and they are free , confidential, and the referral is simply an email to the regional coordinator. Northland regional coordinator Don Martin joined Parent to Parent in May 2017, and his first priority was to get out there and link up with people across the region”. “We have worked a lot in Whangarei in the past but in the last year I have focused on expanding this to ensure that the region knows that we exist and uses our services. Kaitaia, mid north and Dargaville have been my focus and this will continue. Don wants to ensure parents and whanau who can benefit from these services, know about them and feel welcome to make contact to find out more. Information Information on over 3600 common to very rare conditions; posted/emailed information

that is easy to understand, tailor-made for a child’s specific condition/s, and in most languages. Parent Support Connecting with another local parent who has ‘been there’ – a trained Support Parent who has a child with the same/similar condition or experienced similar issues. Support Parents are further enough along the track to feel confident to complete intensive training and ‘give back’ to new parents. SibSupport In Te Tai Tokerau sibling support provides fun day activities for siblings of children with disabilities. These occur every quarter. ” In the coming year I would like to develop Sibleaders so that we can have a Sibcamp in the region too.” All programme leaders have siblings with disabilities, and have been there too. SibSupport acknowledges the extra effort their ‘different’ home life demands, and gives them the chance to talk about issues such as feeling left out at home or bullying at school. Workshops: • Renew, Connect & Reflect – for parents new to the world of disability • Support Parents – intensive training (and refresher courses) for volunteer parents wanting to support others

• SibCamps/SibShops/SibDays – for brothers/sisters aged 8-18 of people with disabilities • Championing Your Needs – for families and professionals to learn how to be heard and advocate for a child’s educational and living needs • Second Generation – for adult siblings and parents/whanau for a ‘whole family’ approach to lifelong care for their family member with a disability. “We are able to mix and match these workshops so let me know your needs,” Don says. Other support services include: • Altogether Autism delivered in partnership with Life Unlimited. • Care Matters delivered in partnership with SAMS (Standards and Monitoring Service) and Carers NZ. • Prism is autism spectrum disorder (ASD) training for professionals, tailored to suit the organisation and presented by facilitators with signiﬁcant knowledge of ASD and associated issues

Don Martin - Regional Coordinator Mobile: 027 808 3942 Freephone: 0508 236 236 e: northland@parent2parent.org.nz w: www.parent2parent.org.nz f: www.facebook.com/ parenttoparentnorthland

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#1 Ag Specialists in the North • 24 Hour Farm and Fleet Service

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28 Matthews Avenue, Kaitaia • (09) 408-2915 Farmlands

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Derek Senior By Jonny Wilkinson erek Senior knew the importance of a good education from a young age. Growing up with a visual impairment he made good use of the itinerant teaching service run out of Homai School for the Blind. It provided him with visual aids like a mini-scope so he could read the blackboard, and remedial reading support including access to large print books. From age nine it arranged teacher aid time so t he could learn to touch-type. However, Derek also honed other skills such as the ability to absorb and retain information orally, a skill that has served him well throughout his education and career. Derek now holds an influential position in central Government, working as a principal policy advisor providing advice and expertise to ministers and senior Government officials. Initially, Derek started his tertiary education at Teachers’ Training College, with a view to becoming a teacher. After a couple of years he realised that the life of the teacher wasn’t for him. “I enjoyed the academic side of it, but realised the logistics of trying to control 25-35 children with a significant visual impairment would have been difficult, and while I might have become an ok teacher, I was never going to be a great teacher”. Derek has always pushed himself to achieve high standards, although he admits it hasn’t always been easy. “There have been some difficult

times in my life, usually when I would think about the things I couldn’t do, rather than recognising my strengths.” After this realisation Derek went on to study a Bachelor of Arts in the Social Sciences and then a Masters degree in Social Policy. “My experience at teachers’ college led me to realise that I needed to focus on work that would utilise my intelligence rather than physical skills. Once I had ﬁgured out that policy was what I wanted to do, I studied accordingly.” I quickly realised from talking to Derek that he came from a very supportive family. “My dad never let me use my disability as an excuse, but rather encouraged me to exce at what I was good at”. This encouragement contributed to Derek setting high goals, and gave him the conﬁdence and motivation to achieve them. His parents received support from Parent to Parent which included his siblings going on camps with other children that had brothers and sisters with disabilities. Parent to Parent also provided his father with advice and put him in contact with children with a similar disability. Derek has had a successful career in the Civil Service since he completed his training 11 years ago. I wondered what other things had made Derek successful in the competitive world of government employment. I asked “what advice would you give to young people with a similar disability?” Derek replied: “Make use of technology

Lifelong support for Kiwi families caring for kids with disabilities ! Chat with others who have ‘been there’ ! Information on 3600+ disabilities/conditions ! SibSupport for the brothers and sisters (aged 8-18) of .people with disabilities ! Workshops, family activity days, coffee groups, camps and more ! Unique and FREE services for family/whānau and professionals Connect with Parent to Parent Northland Mob. 027 808 3942 Toll free 0508 236 236 E. northland@parent2parent.org.nz W. www.parent2parent.org.nz

■ Derek Senior as much as you can to improve your opportunities. Education is also critical for realising opportunities, and it doesn’t just have to be academic study. Think about what you want to do so you can focus on what you need to achieve it education-wise, but also be prepared to realise that your ﬁrst career idea may not work out. A period of ‘milling and churning’ is natural when you are trying to ﬁgure out what you want to do. “I am also mindful of the fact that I’ve been very lucky, being gifted with a good brain, good support networks, and working environments that have been supportive. Getting the opportunities that you want in life will often be hard. Ultimately it comes down to what you think your potential is, and what you want from life.” Thanks Derek, that’s great advice for anyone.

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Parkinson’s Northland

arkinsons Disease derives its name from Dr James Parkinson, who discovered the condition in the late 18th century. Over 13,000 New Zealanders live with Parkinson’s. Parkinson’s is a progressive neurodegenerative condition. The most common physical symptoms are tremor, stiffness and slowness of movement. Other symptoms include depression, anxiety or apathy, disturbance of normal sleep, constipation, and trouble swallowing or speaking. The average age at diagnosis is 59. At present Northland has 287 members registered with Parkinson’s Northland and this number is continually rising yearly. Although it remains a disease with no cure, its management has been improved by modern technologies to enable Parkinsonians to lead useful and sustaining lives. One of the greatest aids is physical exercise and Parkinson’s Northland Division

provides a range of activities throughout the North. • Whangarei, weekly walking group, physical exercise, hydrotherapy, physiotherapy, voice exercises and Pilates. • Kerikeri, hydrotherapy and Tai Chi. At Coopers Beach, Tai Chi. Support Groups are held monthly in Whangarei, Waipu and Kerikeri. Bi-monthly meetings are held in Dargaville and Kaitaia. All of these meetings have a range of activities both educational and social in nature. The Northland Division’s area extends from Te Hana south across to Kaipara and up to North Cape. We have two qualiﬁed Community Educators who share visiting clients in their own homes to monitor their condition and advise on services through other support agencies. They collaborate with health

authorities and give-inservice lectures to rest homes. Vicki Sadgrove covers central Whangarei, Onerahi, Tutukaka Coast, and all points north. Barbara Leslie covers the southern areas which include Dargaville, Maunu and Whangarei south from junction SH14 and Maunu Road, Ruakaka, Waipu, Mangawhai and districts south to Te Hana. “The secret of being Happy is accepting where you are in life and making the most out of every day”

PO Box 641 Whangarei 0141 Phone/Fax: (09) 437 6878 Free phone: 0800 473 4636 Hours: Mon–Wed 8.30am – 4.30pm info@parkinsons.org.nz www.parkinsons.org.nz

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Mel Clements

Mel says Parkinsons Northland have helped with home visits, providing with information and referrals. Mel is starting to attend the Waipu Parkinson’s Support meetings, which brings together other locals in similar situations.

■ Mel Clements

here is no doubt that Mel Clements has had an interesting and varied life. He was born in Zambia the eldest of four children. His dad worked for a petrol company and his mum was a secretary. Soon after this the family moved to Rhodesia [now Zimbabwe] where they ran a family garage. When Mel completed his education at local schools he spent 4 years with the police before embarking on two years selling safety equipment. He then started his own company eventually employing 400 people manufacturing and distributing cordials and other products. In 2003 Mel and his family, by now this included three daughters moved to New Zealand. He already had a brother here. They thought that NZ would be a safer country and that the culture would be similar to what they were used to. They settled in Red Beach. Mel’s first job in NZ was familiar territory. He became a car salesman and became involved with electrical contracting. Being a keen golfer Mel became involved with a golfing organisation called Nomads and for 8 years voluntarily administered this charitable association which has 100 members and has donated $600,000 to good causes. Mel is justifiably proud of his contribution.

In 2012 Mel’s life took another direction and he along with a mate started up Gutterfoam in NZ. Gutterfoam is an American product and to date over 100,000 metres have been sold. Mel runs the administrative side from home and looks after the agents, while his business partner runs the warehouse. This works well for them both. Mel estimates he now spends about 20 hours a week working. Mel was in good health until about 3 years ago when at the age of 55 he began to notice a hand tremor. He then tells me he was misdiagnosed, but went to a Specialist following a referral from a physiotherapist. Around this same period of time Mel also began to struggle with orthopaedic problems which have led to various surgeries and mobility issues which have in his words complicated and exasperated the Parkinson’s Disease [PD] he was diagnosed with. It came as a shock to Mel to be given the PD news as he was unfamiliar with the Neurological condition, and as well was still in his 50’s. He’d only ever seen one other person with PD and this was an elderly man he knew slightly in his childhood. As soon as he got home from the Neurologist’s ofﬁce he googled PD, and made it his mission to ﬁnd out as much as

possible about the condition. He became aware that having PD with gait and balance problems were going to make life extra challenging when combined with his bone problems. Mel also told me that he now realises by the time of diagnosis he had almost every symptom’ but the hand tremor was the most obvious. He was started on PD medication straight away and this was helpful. Mel and his partner Maureen have recently moved to Mangawhai for a more relaxed lifestyle. Mel is very much aware exercise is very important so he goes to the gym twice a week and plays golf as much as he can. He tries to live as normal a life as possible, keeping as active as he can, running his business and enjoying NZ life. He tries to be positive and upbeat. Despite his health issues his sense of humour and friendly outgoing personality help him get through. He is proactive about getting help and support and is grateful for family, friends and others who contribute. He is hopeful of a cure and regularly scans the internet hoping to ﬁnd something positive. Mel is very happy with the support he gets for his PD in NZ which he believes he wouldn’t have had back in Zimbabwe.

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Supporting life after stroke in Northland

o matter what age you are, a stroke can be devastating and for many people and those around them, a stroke dramatically changes their life. The effect is certainly wider than just the person who had it. Supporting life after stroke is the role of the Stroke Foundation’s Community Stroke Advisor service. This service is available throughout Northland to work with stroke survivors and those around them, providing experience, support and hope that is designed to achieve the best possible outcome after stroke. The Stroke Foundation provides free information about stroke and managing life afterwards through Community Stroke Advisors and via the Stroke Foundation’s website. The book “Life After Stroke” provides good information and is readily available in hospitals and from Community Stroke Advisors. Community Stroke Advisors, Lynelle Ngakuru (Far and Mid North) and Rachael Snook (Whangarei and Kaipara areas), work closely with those who have been affected

by stroke, making hospital and home visits, supporting families/whanau and caregivers, advising on accessing care relief services and support. Lynelle and Rachael’s, general focus is on rehabilitating the stroke survivor back into the community and assisting family/whanau and caregivers to not only understand a stroke but to adjust to their changed circumstances. Community Stroke Advisors know about, and link clients to local support groups and recreational activities. These include exercise groups, sports clubs, accessible gyms, art and craft groups, therapies, caregiver, partner or family support groups and younger stroke survivor groups. The Word Masters Whangarei Aphasia Gavel Club which is designed to assist those people who have communication difﬁculty as a result of a stroke or traumatic brain injury was established in 2016. Another local support initiative is a stroke hydrotherapy group assisted by the Stroke Foundation and run weekly at the Whangarei Aquatic Centre by Physiotherapist Isobel Finlayson. Stroke support organisations in Northland

are located in Kerikeri, Whangarei and Dargaville and can be contacted through a Community Stroke Advisor. These groups provide support to people with stroke, and those around them. They enable people to share experiences, understand more about stroke, meet new people and participate in social activities and special events.

Community Stroke Advisors in Northland Lynelle Ngakuru – Far and Mid North (Cape Reinga to Kawakawa) Freephone: 0800 566 383 Email: far.north@stroke.org.nz Rachael Snook – Northland (Kawakawa to Wellsford) Freephone: 0800 459 954 Email: northland@stroke.org.nz Web:www.stroke.org.nz

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Reuben Williams Stroke Survivor

ife begins at 40, so the old saying goes. But for Reuben Williams, just getting to 40 was an achievement after being struck down by a devastating stroke. Three days before his big birthday, Reuben suddenly collapsed on the road. An undiagnosed medical condition had triggered what’s called a subarachnoid hemorrhagic stroke – an extremely serious event that occurs when a blood vessel just outside the brain ruptures. By an incredible piece of good luck, Reuben was found by a doctor walking his dog. Rushed to Wellington Hospital, he was placed on life support. But the prognosis was grim. “I wasn’t expected to survive the night,” Reuben says. Like many people affected by stroke, Reuben didn’t fit the stereotype of an elderly, frail person. He was well-travelled, had a bachelor’s degree in Communication Studies, and worked for the Department of Conservation communications team. Now he lay in an induced coma, which lasted for a month. “The nursing staff were absolutely amazing during this stage,” Reuben says. “Nurses went above and beyond!” On finally waking, Reuben had no real idea what had happened. “My first vision was of the buildings outside of Newtown

■ Reuben Williams

Hospital. I knew I was up somewhere high and that I was surrounded by immediate family, best friends, and work colleagues. I knew I was in a serious condition in hospital.” Reuben was unable to walk or look after himself. He was 100 percent dependent on staff and whanau. Transferred to nearby Kenepuru rehabilitation Hospital, Reuben began to learn how to communicate and walk all over again. He took part in daily quizzes, kitchen work and day trips outside the ward. But tests nine months after the stroke showed there was still a long way to go. “I struggled a lot with my memory. The psychologist identiﬁed I had signiﬁcant

challenges with my memory and cognitive responses.” Luckily friends and colleagues rallied to support him ﬁnancially. That support continued when he returned to work but despite his determination, Reuben made the difﬁcult decision to medically retire. “I faced too many challenges – fatigue, issues for short term memory, high pressure job,” Reuben says. Now back in Whangarei, Reuben is showing his NgaPuhi/Ngatiwai warrior spirit. “Life is not without its daily challenges,” he says. “[But] I will survive and overcome – I will be better than what I was before. I know that!”

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Citizen’s Advice Bureau Whangarei

■ Cabbie the Clown entertained children and their adults at the International Day of the Family event at Forum North this year.

Our advice is free. Not getting it could cost you though.

71 Bank Bank Street, Street, Whangarei 71 Whangarei Phone 438 8046 Phone 438 8046 Free: 0800 367 222

Te Pou Whakawhirinaki o Aotearoa

cab.whngr@xtra.co.nz whangarei@cab.org.nz www.cab.org.nz www.cab.org.nz

itizens Advice Bureau Whangarei has been serving the needs of the people of the district for 45 years now. The bureau is on the accessible ground floor of the Municipal Building at 71 Bank Street. It is staffed by trained, helpful and highly motivated volunteers, and is open from 9am to 4.30pm. The information provided is free and current, and the service independent and confidential. CAB works to ensure that people do not suffer from not knowing their rights or the services available to them, or because they cannot express their needs or viewpoint effectively. Last year the bureau fielded some 8,000 enquiries - on relationship issues, health and welfare, employment, consumer rights, human rights, insurance and banking problems, parenting orders, debt, government department disputes, housing, and contacts for clubs, social groups and leisure activities. A free legal advice clinic is run every second Tuesday evening, with the voluntary time of a roster of local lawyers. Bureau advocates can also help clients with more complex consumer, vehicle or beneficiary issues. New migrants are especially welcome with CAB offering assistance with immigration advice clinics, workshops on various topics, and one-to-one support for settling in to the area. If you feel frustrated by a situation, or think you may have been sold a dud and are not sure what to do next, ask CAB. Call on freephone 0800 367 222, or 438 8046, or come in to sort out face to face any issues you may be struggling with – there will always be a friendly person to talk to, with relevant options to consider. You can also ask questions by email at whangarei@cab.org.nz, or access real time online interviewers through the website itself, cab. org.nz. Whangarei co-ordinator Moea Armstrong says “people really appreciate the chance to talk to someone in person about their problems. Although there’s great information out there, a lot of people want help to work out how that information relates to them, and that’s where we can help. We provide a person to person advice service that is independent, confidential and free of charge”. “We have a great group of well trained volunteers who are here to help, and have access to huge information resources including a database with over 35,000 organisations listed. So if we don’t have the answer we will be able to point you to someone who does”. “There’s legal information on our website cab.org.nz, but sometimes it helps to talk about your issue with someone.”

Citizens Advice Bureau Whangarei Te Pou Whakawhirinaki o Whangarei Address: Municipal Building, 71 Bank Street Whangarei 0110 Free: 0800 367 222 T: 09 438 8046 E: whangarei@cab.org.nz W: www.cab.org.nz

ADVOCACY DISABILITY ROADSHOW FREE seminars about Self Advocacy, Future Planning Preparation and Transitions from school throughout Northland !

Work and Income will be providing information on Eligibility criteria and how to

escalate reviews or appeals. !

Guardian Trust will be providing information on Legal topics such as Planning for

adulthood, Longterm welfare of a young person , Decisions around personal care and welfare, and such things as Wills, Power of Attorneys, Trusts, Management of property, letters of wishes. !

Disability Connect will be providing information on Individualised Funding, Transitioning out of School and Living Options.

Other speakers such as Health and Disability Advocates .

Stall Holders from the Northland DIAS Collective below as well as Disability Service Providers such as Home Support North, TLC4u, Idea Services and other local providers will providing information on what supports are available for those with a disability and their whanau. Kerikeri – Monday 8th October 2018 at 10.00am – 2.30pm Ambulance Station, 367 Kerikeri Rd, Kerikeri. Dargaville – Tuesday 9th October 2018 at 10.00am – 2.30pm Northern Wairoa War Memorial, Hall, Dargaville. Kaitaia – Wednesday 10th October 2018 at 10.00am – 2.30pm Far North Reap Seminar Room, 33 Puckey Ave, Kaitaia Whangarei – Thursday 11th October 2018 at 10.00am - 2.30pm Forum North, Whangarei For more information, please contact Leah Petersen at Tiaho Trust on 0211211867 or Email:

The Northland DIAS Collec!ve

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School holiday respite now available in Whangarei!

pectrum Care offers a wide array of ﬂexible respite support options, which can be structured to suit each person’s unique needs.

We currently provide respite support across the Auckland, Waikato, Bay of Plenty and Wellington regions, and also now in Whangarei. Based at Blomﬁeld Special School (31 Maunu Rd, Whangarei), our programme offers a wide range of fun activities such as swimming, nature walks, picnics, ferry and museum trips, music, arts and crafts, and much more – all designed with the children attending in mind. All our school holiday programmes are staffed by highly trained Community Support Workers and Teacher Aides from the nationwide Special School network, and offer a safe, healthy and structured environment for people with disabilities to have a break from their normal routine, enjoy new experiences and develop their independence. These individualised support options can be fully funded through your child/loved one’s NASC assessment, partially funded through Carer Support payments, or privately funded on a ‘fee for service’ basis. Call us today on 09 634 3790 or email SchoolHolidayProgramme@spectrumcare.org.nz to ﬁnd out more about our suite of respite support options or to talk about respite support in your area!

How can we help you? We offer a wide array of flexible support option ns in the Auckland, Waikato, Bay of Plenty and Wellington regions, which can be structured to suit each fam mily’s unique needs. Our aim is to ensure people have choice, contrrol and flexibility in the supports they receive and have the opportunity y to co-create their own sup pport opttions. We also offer a navigator serrvice 0508 NAVIG8 aimed at he elping families new to o disability support. Contactt us today y to find out more! www.spectrumcare.org.nz info@spectrumcare.org.nz I 09 634 3790 I 0508 NAVIG8 (0508 628 448)

Valued, Included and Participating

Blomﬁeld School “

here did the weekend go ? !” – it’s a familiar cry from many of us workers, especially on a freezing Monday morning. Nevertheless most of us would be a bit lost without our work – a place where (hopefully) our unique set of skills, experience and personal characteristics are valued and nurtured. Work –or other activities such as volunteering or parenting give us that feeling that we have value to offer the world. At Blomﬁeld we understand that our students are no different. This is why we have a full- time Job Coach and a Transition Coordinator who are passionate about ﬁnding opportunities for our senior students to experience ‘work’. They have nurtured a range of smart, caring organisationsour Local Heroes - who welcome the opportunity to support our senior students in gaining job experience. Who are these awesome Local Heroes ? We are lucky to have North Haven Hospice, SPCA, United Video, All Marine,

■ Melakai

■ Hine

■ Haukura

the Quarry Gardens, and the Public Library on board currently. These placements have sometimes led to post school roles for some of our students who have gained enormously from knowing the routines, expectations and other people at these places. Our Job Coach accompanies all placements one on one, and works gradually with the student to ensure the tasks are understood and carried out to the employer’s requirements. What do these Local Heroes gain from this relationship? A lot, they tell us. They have regular free help in their business, shop etc. They have very

loyal and often very methodical workers who they can rely on. The employers become part of the Blomﬁeld whanau and are invited to events and our Celebration Assembly in December, and they too feel valued as a part of the wider community. It really is a win-win. Do you belong to a business or organisation who would like to add meaningful value to your community? It might be as simple as providing an hour a week of work . Give us a call, come visit, chat, and let’s see if together we can create another Local Hero.

BLOMFIELD SPECIAL SCHOOL SUPPORTED BY….

✓right advice ✓right service ✓right choice Putting Safety First, Your Local Tyre,

Megan Wills BA, LLB Bridget Westenra LLB Maria Davies BA, LLB (Hon) Joe Andersson B Ed, LLB Jackson Freeman BA, LLB

WHEELCHAIR ACCESS

Wheel Alignment & Rim Specialists

Wills Westenra Ltd provide legal services in the areas of Enduring Powers of Attorney, Wills, Family Trusts, Property matters and Family law.

Come down and see the Team @ 25 Commerce St, Whangarei

WILLS WESTENRA LTD LAWYERS

Phone 09 438 9809

www.rdtyres.co.nz

Level 3, 5 Hunt Street, P O Box 127, Whangarei 0140

Telephone: 09 4597000

www.willswestenra.co.nz

IDEA SERVICES

IS AN IHC SERVICE IN YOUR COMMUNITY

TE TAI TOKERAU

EMPOWERING PEOPLE WITH INTELLECTUAL DISABILITY TO LIVE, LEARN, WORK AND ENJOY LIFE, IN OUR COMMUNITY OF TE TAI TOKERAU.

Supported Living: We support people in their daily living, to participate in their community and take control of their own life and make their own decision. Stuart Jenkins states “

“I live in supported living, which I love. Support is there for me when I need it, both during the week and in the weekends.

‘‘

Vocational and Day opportunities: We support people with intellectual disabilities to get jobs, paid and voluntary and be active members of our community. IDEA Services supports people with intellectual disabilities to participate in activities in our community. Activities are based on the interests of the people that use the Service. We also offer a range of special interest programmes that focus on developing people’s skills such as arts, crafts and gardening.

Accommodation Services: In residential services small groups of people live in a home in our community. In Te Tai Tokerau we have 31 residential homes throughout our beautiful region. At IDEA Services we are all about People. Throughout Te Tai Tokerau we employ more than 250 people to work alongside families and the people that need our support. If you love people and supporting people to reach their potential, then you should consider working with IDEA Services. Our Support workers are well supported with training and development opportunities that lead to a formal qualiﬁcation. In talking to our people that work for IDEA Services in Te Tai Tokerau there is the common theme of making a difference in people’s lives. Lexine has worked for IDEA Services for 10 years seven as a Support Worker and three as a Service Manager.

‘‘

My inspiration and passion for my work is driven by the reward of trust and happiness we see in the people we support when there is improvement in the quality of their lives. When things improve in such positive ways it is very humbling and brings a greater appreciation of the things in life that can so easily be taken for granted.

‘‘

Our aim is to provide an environment where we are responsive, that people feel included, and supportive of people with intellectual disabilities to feel empowered with the choices they make in their lives. Our Services are centered on the person and their whānau and families. These include:

Want to know more about us go to www.idea.org.nz or www.ihc.org.nz

or come in to our Whangarei Ofﬁce 151 Bank Street, Whangarei (next to McDonalds) phone Sally Hume, Area Manager on 09 470-2008 or the main ofﬁce 09 470 2000.

If you are interested in a fantastic career with us phone Anne Dix 0800 WORK 4 IHC (0800 9675 4442) or apply online at careers.ihc.org.nz

Valued, Included and Participating

TLC4U- Small enough to care big enough to provide

ne of the areas tlc4u2 specialises in is providing live in care for elderly people who need assistance with the activities of daily living and/or maintaining their safety in the home. Offering realistic choices, identifying the appropriate level of care, maintaining or enhancing lifestyles, and promoting independence are prime objectives. You can maintain your lifestyle at home with or without support. Suzanne Brocx of Whangarei comments, “It is hard to put in words what it meant to my uncle to be able to stay at home. If not for the carers of TLC4U2 I would not have been able to fulﬁl my uncle’s wish to remain in his own home. I am eternally grateful of the care he received and the service TLC4U2 provides.” We offer post-operative, rehabilitative, respite, palliative and convalescence care. Our team of carers have a variety of skills

4u2

and knowledge to assist you with your requirements. Respite care is organised promptly with well skilled carers attending to the needs of the person, giving you peace of mind. We have assisted with numerous clients in regaining their independence and some no longer require full time assistance. For example, after being informed during a lengthy stay in hospital that independent living was no longer possible for their mother, TLC4U2 were approached to provide live-in care. During the assessment, the family agreed to a rehabilitative approach to care. Four months later her granddaughter stated, “I never thought Nana would be able to live on her own again after her long stay in hospital. She would never have survived moving to a rest home. We are amazed every day by her return to independence.” We work alongside families to

4u2 T ender L oving C are In your own home individualise care needs and incorporate an holistic approach. TLC4U2 aims to provide a high quality service that is second to none. We have forged close relationships with allied health services(hospice, district nursing, social workers, other home based support service and GPs). TLC4U2 has access to the best health care resources for their clients. Should you require some tender loving care for yourself or a family member whether it is respite, live-in, or ACC we are small enough to care but big enough to provide.

tlc4u2 specialises in providing live-in care in your own home, enhancing your life style and independence.

T ender L oving C are In your own home

- Respite Care (short term care) - Long Term Care - Recuperative/Rehabilitation - Palliative care (end of life care) - ACC referrals accepted

For further information contact P 0800852482 W www.tlc4u2.co.nz

disability – a matter of perception

For more information: Phone: 0800 430 3406

FREE seminars Self Advocacy, Future Planning and Transitions from school • •

• •

Work and Income will be providing information on Eligibility criteria and how to escalate reviews or appeals. Guardian Trust will be providing information on Legal topics such as Planning for adulthood, Longterm welfare of a young person, Decisions around personal care and welfare, and such things as Wills, Power of Attorneys, Trusts, Management of property, letters of wishes. Disability Connect will be providing information on Individualised Funding, Transitioning out of School and Living Options. Other speakers such as Health and Disability Advocates.

Kerikeri – Monday 8th October 2018 at 10.00am – 2.30pm

Ambulance Station, 367 Kerikeri Rd, Kerikeri.

Dargaville – Tuesday 9th October 2018 at 10.00am – 2.30pm

Northern Wairoa War Memorial, Hall, Dargaville.

Kaitaia – Wednesday 10th October 2018 at 10.00am – 2.30pm

Far North Reap Seminar Room, 33 Puckey Ave, Kaitaia

Whangarei – Thursday 11th October 2018 at 10.00am - 2.30pm

Forum North, Whangarei

For more information, please contact Leah Petersen at Tiaho Trust on 021 121 1867 or Email: leah@tiaho.org.nz

The Northland DIAS Collective

Northland Down Syndrome Support Group

Valued, Included and Participating

2018-2019

CALENDAR OF EVENTS AUGUST 2018 1st – 31st

Heart Kids Month www.heartkids.org.nz

28th – 3rd September

MS Annual Street appeal www.msnz.org.nz

SEPTEMBER 2018 1st – 30th

Remember September – Students Against Drunk Driving www.sadd.org.nz September Month - Cerebral Palsy www.cerebralpalsy.org.nz/

3rd-9th

Multiple Sclerosis Awareness week www.msnz.org.nz

22nd or 23rd

Alzheimer’s Memory Walk – Dargaville, Kerikeri and Whangarei -Round the loop www.alzheimers.org.nz

21st

World Alzheimer’s Day www.alzheimers.org.nz

21st - 28th

Arthritis Awareness Week www.arthritis.org.nz

22nd

Walk 2 D’Feet MND www.alzheimers.org.nz

30th

World Deaf Day www.nfd.org.nz

OCTOBER 2018 1st

International Day of Older Person www.ageconcern.org.nz

2nd to 8th

Stroke Awareness Week www.stroke.org.nz

10th Annually

World Mental Health Day www.mentalhealth.org.nz

25th

Brain Injury Northland Gibbs Farm Fundraiser

25th

World Sight Day

27th

Brain Injury Northland Black and White Fundraiser Dinner

25th-27th

Alzheimer’s Conference, Auckland www.alzheimers.org.nz

NOVEMBER 2018 2nd-8th

Parkinson’s Society Awareness and Appeal Week www.parkinsons.org.nz

DECEMBER 2018 7th

Tiaho Trust celebration of IDPD, Canopy Bridge, Whangarei 10am until 2pm - More info coming www.tiaho.org.nz

3rd Annually

International Day of People with Disabilities (IDPD)

10th Annually

World Human Rights Day www.amnesty.org.nz

JANUARY 2018 4th

World Braille Day

FEBRUARY 2019 4th

Annual International Epilepsy Day www.epilepsy.org

MARCH 2019 1st – 31st

Neurological Awareness Month

21st Annually

Down Syndrome Awareness Day www.nzdsa.org.nz

24th-25th

Blind Foundation Guide Dog Red Puppy Appeal

26th

Epilepsy Awareness “Purple Day” www.purpleday.org

APRIL 2019 2nd Annually

World Autism Awareness Day www.autismnz.org.nz

13th – 18th

Brain Awareness Week

Valued, Included and Participating

2018-2019

CALENDAR OF EVENTS 11th Annually

World Parkinson’s Day www.parkinsons.org.nz

MAY 2019 1st – 31st

Multiple Sclerosis Awareness Month

8th – 14th

NZ Sign Language Week www.deaf.org.nz

30th

World Multiple Sclerosis Awareness Day www.worldmsday.org

JUNE 2019 21st

MND Awareness day www.mnda.org.nz

JULY 2019 1st – 7th

Neurological Foundation Appeal Week

Parkinson’s Northland SUPPORT GROUPS

Brain Injury Association Northland SUPPORT GROUPS

Kerikeri- 3rd Thursday monthly

Kerikeri – 1st Thursday monthly

Kaitaia – 3rd Tuesday every 2nd month

Dargaville – 2nd Thursday monthly

Whangarei – 1st Friday monthly

Kaitaia – 3rd Thursday monthly

Dargaville – 1st Thursday every 2nd month

Whangarei – The last Thursday monthly

Waipu – 3rd Friday monthly

Alzheimer’s Northland Support Groups

Stroke Foundation Northland Support Groups

Whangarei – 1st Wednesday of the month

Whangarei – Every Tuesday Hydrotherapy Classes

And 2nd Thursday of the month

Every 3rd Wednesday Stroke Club

Ngunguru – 1st Wednesday of the month

Every Friday Toastmaster Gavel Club Group

Onerahi – 1st Tuesday of the month

Young Stroke Survivors Group

Kerikeri – 1st Wednesday of the month

Dargaville – 1st Monday of the month Stroke Survivors

Kaitaia – 2nd Wednesday of the month

Last Monday of the month CHAT Group

Mangawhai 2nd Wednesday of the month

Kaikohe – 1st Monday of the month Stroke Survivors

Dargaville – 3rd Wednesday of the month

Kerikeri - 1st Friday of the month CHAT Group

Arthritis 20+ Northland Support Groups

Multiple Sclerosis Northland Support Group

Whangarei - 1st Saturday of the month

Whangarei – Last Thursday of the month

Every Thursday exercise class

Every Wednesday Hydrotherapy

“GETTING OUT THERE”

EXPO

23rd & 24th August 2019 – Forum North

EQ+ EQUIP · ENABLE · EMPOWER

The EQ+ brand is so much more than equipment and disability information services. "*, /-1)* 5!,*&2!2% *1 1). (),*13&.,0 42'!2% ,15)*!12, /2' %1!2% *#/* &$*./ 3!5&+ Mobility & Daily Living Equipment for Sale & Hire • • • • • • •

Scooters / Power Chairs / Ramps E-Bikes Walkers / Wheelchairs Crutches / Walking Sticks Kitchen / Daily living Equipment Adjustable Beds / Lift Chairs Bathroom / Toilet Equipment / Safety Rails • And so much more.

Mobile Van Services Our mobile van service travels throughout Northland on a monthly basis. We are also happy to provide in-home demonstrations with some of our equipment (fees & conditions may apply).

Community Group Equipment Presentations We provide free and informative equipment presentations and training to community groups and organisations, health groups and professionals.

0508 637 200 09 430 3469 73 John Street, Whangarei equipment@northable.org.nz

equipmentplus.org.nz Equipment Agency at Far North Pharmacy

53 Commerce Street, Kaitaia • 09 408 0851