Peer Supporters -

Spinal Support NZ, previously known as TASC, is a charity-based organisation based at Auckland Spinal Unit.

We provide valuable services to patients who have had a traumatic spinal injury/impairment as they adjust to their new life. This covers Peer Support in the unit and once in the community.

KRAMER HOEFLICK

SOUTH AUCKLAND PEER SUPPORTER (MOH REPRESENTATIVE)

Kia Orana, Ko toku ingoa Kramer Hoeflich.

I was born and raised in the beautiful Cook Islands on the island of Rarotonga till I was 15, and a spinal cord injury changed my life and brought me to New Zealand. During this time, I was faced with many challenges and had to overcome many barriers to become the person I am today. This is where I found my passion for working with young people of all abilities, cultures and backgrounds, alongside them, making a difference within the community. This is the reason I wanted to be a Community Peer Support, not because Lee knows where to find a mean feed.

I am a strong believer in the unique ingenuity that young people possess and the unlimited potential that is tapped when we work together as a community.

I am passionate about working to change perceptions of what young people of all abilities can achieve and contribute. One of the ways I plan on doing this is by building awareness and acceptance around mental illness and breaking the taboo that surrounds Disability. I am a strong voice for both the Pasifika and disability sector. I aim to bridge the gap between Disability, youth, community & government. Edit biography

LEE WARN

CENTRAL/WEST AUCKLAND COMMUNITY PEER SUPPORT

I had my injury in 1989 from falling off a little 50cc scooter. I managed to fall on my ribs and break T12 at the same time. After 32 years I've learnt a few things about living life in a seated position. I've always had an interest in motor vehicles, and I've owned over 100 cars, currently, I'm restoring a 1965 Austin Mini Van. Making it even better by using an original 1275 4speed automatic so I can drive it.

I wanted to be a Peer Supporter so I can give back and support others with some of the things I've learned over the years. Perhaps even they can help teach me new aspects or ideas for moving forwards.

Since my injury, I've put my hand up to become part of so much more than myself. I've competed in multiple racing events (half marathons/full marathons) in costume (gorilla suit,

squirrel suit, etc)), indoor target shooting, axe throwing, climbed the sky tower several times, completed a triathlon, skydived, black & white water rafting, involved in Paralympics team training for 100-200m sprinting, and demolition derbies. Pretty much anytime someone came to me with an idea, I put my hand up to be involved. I was in the Otara Spinal Unit 1990/91, I did not have a peer support person (at the time "buddy")

ADAM WAKEFORD

AUCKLAND COMMUNITY PEER SUPPORT

About 20 years ago I was on a surf trip in Bali when I decided to dive into the pool after a hot stinky day. Unfortunately, the area of the pool was a lot shallower than I expected and this resulted in a complete fractured neck at the C5/6 level. To this date, the worst thing about this...it was the first day of my month-long holiday.

Since this unplanned change in my lifestyle, I have switched from a carpentry carer to an Accessibility Consultant, helping improve new housing to be suitable for everyone, no matter what level of function they may have.

After leaving the Spinal Unit I hit a low point in my life and wasn't sure if I'd ever fit into society again. None of my mates truly understood what I was going through and I had so many doubts about my life's prospects... A few months later, my family dragged me out to a

Wheelchair Rugby training session and I instantly fell in love with the sport and the comradery of my teammates. From these people, I learned so much. They all had tricks and tips for pretty much anything, from opening a beer, transferring into a car to meeting girls. These are things I feel can only be learnt or shared by people living in similar situations, so if I can offer some tips and suggestions to anyone going through a life-changing situation, I'm more than happy to try and help. The last 20 years have been a pretty full-on journey, over this time I've achieved a diploma to start a new career which I'm passionate about. Played wheelchair rugby for 16 years, managed to make the Wheel Black squad and represented Aotearoa in over 12 countries including the 2008 Beijing Paralympics. Dabbled in Sailing, Shooting, Surfing, Kayaking, Abseiling, flying, and Cycling. Bought a house and have a family with my partner, all while improving my independence from 24 hours a day to almost 3 hours a day.

CASEY BRADY

TAURANGA PEER COMMUNITY PEER SUPPORT

Five years ago I was a teacher ready to get married and have a family. I was racing motor cross competitively with my husband and my sisters when I crashed and broke my back. Since this day my journey has been a crazy roller coaster with lots of highs and lows. The doctors told me that I have a complete spinal cord injury with little hope of gaining any recovery. With these words, I decided to do everything in my willpower to prove them wrong. I started my rehab journey the moment I left the Spinal Unit and created my own path for my recovery by doing my own research. I also started an amazing challenging job of getting myself back up and walking. During this time I found a massive passion for health and fitness and the rehabilitation industry. I used this passion to my advantage and now I have a business called NextstepNZ that my trainer and I have built up. We have created a world class rehabilitation centre that

specialises in helping people with disabilities. I still continue to do rehab every day but I have found my purpose to help and inspire others along the way. I keep busy by not letting my injury limit me and carry on with life activities and adventures. My purpose is my why! For myself and the gym my why is. “To create a sense of hope to inspire others to achieve more”.

MICHAEL THORPE

GISBORNE COMMUNITY PEER SUPPORT

Hi, my name is Michael Thorpe, and I am from Gisborne. I am a C6/C7 ASIA B and I have been in my chair since January 2020, when I had a mountain biking accident. I live with my partner and two teenage kids in Gisborne.

My dream is to walk again. Since my injury, I have had Stem Cell Therapy in Gisborne and seen a Nuerophysiotherapist in Tauranga and continue to rehab for up to 4 hours each day. Currently when working in the parallel bars; I can stand independently, and move my feet backwards and sideways, but not yet forwards.

I became a Community Support Worker to inspire others on their journey. I know it is not easy and the best way I have found to manage this is to find something, (anything such as hand function, sitting balance, transfers, the list is endless) that was better today than yesterday and really celebrate and enjoy those small wins as they all add up in the end.

JANINE MAKATA

SOUTH AUCKLAND COMMUNITY PEER SUPPORT

Kia Ora, I was born with a medical condition. I didn't know it at the time.

As a young adult, I slipped into a cow patty while walking down a mountain. I landed on my backside and had a swollen ankle. I was on a school break from the Manukau Institute of Technology. I self-healed at home. I started walking with a limp. I was clumsy in my walk. I tripped up a lot. A family member thought I was putting on a front. I went to see the doctor, who referred me to physiotherapy.

For 6 weeks, I attended physiotherapy. There was no change in my walking. I was still limping. The doctor referred me to get an M.R.I. scan. In 2007 I was diagnosed with Syringomyelia. A syrinx in the spinal cord was found. The neurosurgeon referred me to Auckland Hospital for surgery.

In 2008, a shunt was inserted into the spine to drain the fluid.

Unfortunately, the shunt didn't function. The neurosurgeon informed me to have another surgery. The following year I had another surgery and the same results. I was informed to have another surgery I declined. I was referred to the Auckland Spinal Unit for physiotherapy and rehabilitation. I was mobilising on crutches, and eventually, my health declined. In 2013, I couldn't stand up, and I couldn't urinate. I had another surgery; the shunt is stable, so I became wheelchair-bound. No, my case is not a medical misadventure. I had a pre-existing condition before surgery. And or a bit about your impairment? I researched on the internet Syringomyelia. It lies dormant at birth. It may be caused by trauma. Syringomyelia (shi-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst (syrinx) within the spinal cord. Over time the cyst can enlarge, damaging the spinal cord and causing pain, weakness and stiffness, among other symptoms. Why did you want to become a Community Peer Supporter? In the early days of my spinal cord injury, I wasn't in a good head space. During the first two surgeries I had, I was discharged home. I didn't know the ASRU existed until the Neurosurgeon referred me. I had a lot of peer support from other spinal cord-injured like-minded people. The physiotherapist(s), Parafed. The ex-coordinator Anita O'Connor took me to all the outings all over Auckland. I'll always be thankful and grateful for their time and support. I'll always remember those who have passed on.

ANDREW WOO

CENTRAL AUCKLAND COMMUNITY PEER SUPPORT

My injury was from what is commonly known as the bends, also known as decompression sickness, in scuba diving. Scuba divers or high altitude or aerospace events cause dissolved gases to come out of solution in bubbles. It can affect any part of the body including joints (thus the name bends), lungs, heart, skin and particularly in the most porous tissue the fat, which includes nervous tissue such as the brain and spinal cord. The bubbles formed all around my spinal cord and damaged multiple areas. The specialist classified it as an incomplete SCI at the T10 level based on the main medical issues but there are a number of issues. My initial prognosis was that I wouldn’t make it and the best care possible was a life in a wheelchair. I worked extremely hard to get back to normal and I maintained this goal for at least 3 years post-injury. I had a sound Sports Science and medical background therefore I pretty much

rehabilitation. I heard my physios commenting on the ’boom & bust’ model I was following. In reflection, I was far too independent and I did not seek help as I should have, such as the psychology input. The psychology input had tremendous improvement as later, like 8 years later, I was diagnosed with post-traumatic stress disorder (PTSD) and major depressive disorder. I was once told it was unsurprising as I was a proud Asian male. 10 years on, I am able to walk reasonable distances and I am involved with disability golf as a player and also as the President of Disability Golf NZ. The day-to-day variabilities of my health are a continual battle. The main reason I have become a Community Peer Supporter is that the best information I have received was from others who really understood my issues, that is, my fellow SCI comrades. I have found that although the medical staff are there to treat us, they will never understand the wide number of issues and therefore a little limited to truly help. This is where we can comfortably discuss all matters of SCI and solutions will be closer at hand. Main health barriers: Neuropathic pain in legs and especially feet, chronic fatigue, and bowel and bladder management. Future aspirations: Continue to achieve and help others to achieve in the sport of golf. Post-injury achievements: Let's have a chat and I’ll brief you on the main ones.

ROB BECKETT

ROTORUA COMMUNITY PEER SUPPORT

I had a car accident near Taihape in April 1980 that resulted in paraplegia at T7/T8 level and dependent permanently on a wheelchair for mobility. Following my trauma, I was flown to Burwood spinal unit, Christchurch where I remained for eight or so weeks and then transferred to RNZAF Base Wigram for a short spell before moving to Auckland where I resided until 1995 moving back to my home town Ngongotaha where my wife and I purchased our home fully accessible for my needs.

I am aged 69 years, had my accident aged 27 years and have relied on a wheelchair and the life I endured for 42 years. I emphasise ‘endured’ because I’d be lying if I said I had coped with everything life has thrown at me. I’ve had my ‘ups and downs’ – still do and struggled on occasions believing that I have been hard done by BUT! At the end of the day what we do for

ourselves with support (if needed) can get us over a particular hurdle to enjoy a fulfilling and rewarding life. I led an active life prior to my paraplegia serving in the RNZAF as a physical fitness instructor for ten years. I classify myself as an ‘above average’ sportsperson performing well in sports I competed in but also teaching sports skills and coaching various sports codes. I continued in the same vein following my paraplegia being actively involved in the disability sector and able-bodied community. I returned to full-time employment two years after my injury and continued so up until my mid fifties. My endeavours saw me graduate as an Occupational Therapist being employed in various service sectors such as ACC, Needs Assessment, Service Coordination, self employment, mental health, drug and alcohol, work rehabilitation and Maori Hauora, serving on many committees and recently employed in Community Peer Support for Spinal Support NZ. What I find rewarding and enjoyable about this current role is Spinal Support NZ’s vision and values fit well with my personal values and philosophy. That is, ‘empower and support people with spinal cord injuries or impairment to optimise their health and well-being’. AND ‘we endeavour to understand, anticipate and respond to the needs and expectations of spinal cord injuries. My personal and work life has always been about serving people. How many of us get to experience the nuances of utopia? No one’s perfect but we must ‘keep on keeping on’.

PHIL BOOTH

WAIKATO COMMUNITY PEER SUPPORT

Inventor | Husband | Father | Avid hand-cycler

Phil had just been on his big OE, playing rugby in England and Scotland. It was the time of his life. Twenty-two years old and back in Hamilton, he geared up for his first game back with his home club. It was 1996. In the first scrum of the game, his head crashed into the opposition's shoulder, snapping his neck. His brain told him his legs were to the left, but as he looked down, his eyes told him they were to the right.

Adjusting to life in a wheelchair, the next chapter in Phil’s life became dedicated to rehabilitation. Multiple surgeries won him more movement in his arms and hands. Practical innovations won him some independence.

Phil’s inventive spirit eventually paved the way for the development of quad-friendly creations from practical daily use things to

more seemingly unattainable projects like beach access. His inventions have seen him connect and reconnect with other quadriplegics around Aotearoa, supporting meaningful independence through innovation. Phil lives in Hamilton with his wife and 3 beautiful daughters

STEVE WEST

WAIHI/WAIKATO PEER SUPPORT

Hi everyone. My name is Steve West. I am 62, previously a builder/ truck driver. I live in Waihi with my wife of 35 years. We have 2 grown sons and 4 beautiful grandchildren, all living nearby. One of the silver linings of my injury is that I get to spend a lot of quality time with my grandchildren.

In 2017 I fell 3.5m onto concrete and smashed L3-4 and T10-11, along with a fractured scapula, 7 broken ribs and a head injury. I awoke the next morning to my wife looking at me with tears in her eyes, wondering what the hell I had done.

I had surgery fixing my spine with 28cm rods and 14 screws holding my spine together.

I was paralysed from the waist down, and in a family meeting, we were told that I would be lucky to stand, let alone walk.

I spent 3 weeks in Waikato hospital and was then transferred to ASRU. By this time, I had wiggled one of my toes, which gave me hope that not all was lost. I was determined that I was going to walk again. I had too much to look forward to. At that stage, we had our first grandchild, and I wanted to be able to run around with him.

I am so grateful to all the staff & Physios at ASRU. After 9 weeks, I had taken some very emotional first steps on my road to recovery. The physios were amazing. After nearly 5 years, I am able to walk short distances, usually with walking poles, and I still use my chair for longer adventures. I still suffer from a lot of nerve pain and get fatigued easily, and have to have frequent rests. I often have to force myself through the pain to get out and about. I enjoy riding my bike as I find this much easier than walking. I have put my name forward as a peer supporter to be able to help and inspire others to believe that life does go on after an SCI and we are able to adapt and live a full and enjoyable life, and with the support of family, we can go on to do great things. On this journey, I have learnt to remain positive and that the mind is the most powerful muscle we possess and can be used to achieve so much.

PERRY TE WINI

SPINAL UNIT IN-HOUSE PEER SUPPORT

Kia Ora

My name is Perry Te Wini. I’m an incomplete T1/2. I’m very new to this journey as of last year.
My role in life has always been to find enjoyment in whatever I do. Whether working for $10hr or $100hr or even volunteering, I believe there shouldn’t be any difference in your ethic. Jumping on board as a peer supporter is another way I can help someone with an SCI or even if they need to vent. Who doesn’t like a good blowout?

My SCI came about by having the disease around my spinal cord and paralysed me from the armpits down. Over the last 12 months, I’ve gained a lot of movement in my lower limbs, and I am currently working on walking with a zimmer frame. Whether I get full use, only time will tell.

I have done many jobs over the years, from plastering to scaffolding to support workers and even driving Uber for six years before my illness.

I have made many friends on this journey and am only too happy to lend a listening ear or whatever you may need; we will try our best to get you through this tough road.

Ka Kite

GARRY BELL

WAIKATO PEER SUPPORT

Hi there, 2019 saw sudden changes to my life that I never expected would happen to me. I was extremely fit and healthy and enjoying my retirement in the beautiful Mercury Bay, Coromandel.

I am part of the 30% of New Zealanders who suffer an SCI without it being an accident. An unexplained event, struck me, being a spontaneous spinal epidural haematoma, centred around C4-5. This resulted initially in complete right-side paralysis. The Auckland Spinal unit in Otara was a crucial part of my initial rehab which put me in good stead to continue at home. Self-drive and motivation were needed if I wanted to reach for the stars. Thankfully, for me having a background in sport from national to elite level involvement, and understanding what determination, strength and resilience meant, at 3 years on, apart from an immobilised right leg I am able to walk small distances supported by a crutch. I do however ride a bike a whole lot better than I can walk!

My journey, from the competitive athlete to involvement in the administration of my sport, to husband, father and grandfather has provided life experiences that have been abundant and well treasured. I can assure you that life’s experiences just keep on keeping on!

Understanding what being a volunteer constituted, from having worked the past 40 years as one, the concept of giving back to an area, with personal gratitude, for me was a perfect fit. My journey from the onset of my incident has like all, been filled with all aspects of huge ups and downs. Being able to recognise and accept the altered pathway that life has thrown you in an instant, is a fluctuating journey, and being able to accept the varying challenges, with support, can make the journey seem less daunting. I look forward to a new chapter of further giving, with respect to individualities and varying journeys.