Justin Chipchase was just 36 when he went to bed one night and had a stroke while sleeping.
He was on the floor for two days before he was found.
Stroke is one of the biggest killers in New Zealand, about 2500 people die from it every year. At a time when stroke numbers are up in Tauranga and Bay of Plenty, and with the increase likely to continue, Scott Yeoman meets two young survivors and the professionals working on the frontline of this devastating medical condition.
Justin Chipchase was just 36 when he went to bed one night and had a stroke while sleeping.
He was on the floor for two days before he was found.
"The first thing I remember was being picked up and put in the ambulance. I couldn't work out why I couldn't get back into my bed; it was because half my body wasn't working."
Life would completely change for Justin, who was working three jobs and looking after his mum and dad's lifestyle block in Paengaroa at the time.
He can't work or drive now, his mobility is an issue and he has left-side hemiplegia, "which basically means my left side's paralysed".
He also has a lot of cognitive and memory problems and can't cope with numbers or dates. He's mostly wheel-chair bound.
"One of the invisible effects of a stroke is fatigue. It goes with all traumatic brain injuries. For me, it's tiring just being awake and I need daily naps to keep functioning."
Justin, like many people, didn't think a stroke was possible at his age.
But in 2016 and 2017, one-eighth of all stroke patients at Tauranga Hospital were under 65, showing that younger people having strokes is not that uncommon.
Stroke is one of the biggest killers in New Zealand (about 2500 people every year) and around 10 per cent of those stroke deaths occur in people under 65.
Justin had not been to see a doctor in about 12 years when he had his.
"I figured, well why go if I'm not sick, or if there's nothing wrong with me? Save $40 and not go. That back-fired on me a little bit. I ended up having high blood pressure and sleep apnoea and I think probably stress helped contribute to my stroke."
His mum and dad, who were away in Australia at the time, had friends break into the house to look for him when no one could make contact.
Justin didn't turn up to a market he was meant to be working at.
He says he can't recall anything from those two days and was likely semi-conscious or completely unconscious.
"All I know is they only really found me in the room because my dog was running in and out sort of alerting them to where I was.
"We think she must have been sitting right beside me the whole time because when I had my surgery I was like patting fresh air and the surgeon couldn't figure out what I was doing."
He was rushed to Tauranga Hospital by ambulance before being transferred to Waikato Hospital for a craniotomy – a surgical operation in which part of the skull is removed to access the brain.
In Justin's case, it was to give his brain room to swell.
Justin Chipchase's life now revolves around doctors and rehabilitation appointments. Photo / Andrew Warner
He's recounting these details a little over two years later at Mt Drury Reserve in Mount Maunganui, the meeting place for a young stroke survivors group he is a part of.
It's a particularly windy afternoon yet Justin's voice is clear and confident over the gusts and nearby music.
Remarkably, he is upbeat, frank, friendly and open about the ongoing struggle to get to this point and his hopes for the future.
When he was transferred back to Tauranga Hospital after the craniotomy, he spent six months in the Health in Aging Ward recovering and doing his first lot of rehabilitation.
"So basically I was 36 hanging out with all the 65-year-olds and older. So that wasn't too much fun."
He says they provide support for him and it's nice being able to talk to people who have been through similar challenges.
"Especially being young in that situation because you end up grieving for your old life that you've just lost. Because it has gone. You have got to try to create a new one."
Reducing the risk
Dr Mohana Maddula. Photo / John Borren
Dr Mohana Maddula is a stroke consultant at Tauranga Hospital.
He says young people who suffer strokes often have "modifiable risk factors" – health risks that can be addressed and reduced.
"We can't modify age. Age is a very important risk factor and that's why strokes are more common in older people. But in younger people you have some modifiable risk factors – smoking, high blood pressure, high cholesterol, diabetes, excessive alcohol consumption."
These, Dr Maddula says, are all potentially treatable - and eating healthy, exercising and not smoking or drinking too much are just some of the ways to reduce the risk.
He says some rarer causes of strokes in younger people, which he is seeing more and more now, also stem from the use of recreational drugs like cocaine and methamphetamine.
"I've managed a patient recently – just a few months ago – who had taken methamphetamine and has had a stroke as a result."
Taking recreational drugs increases the risk of heart problems and strokes, he says.
Strokes of unknown cause are the most common in younger people but the second most common cause is something called dissection – "where the inner layer of a blood vessel in your neck can just come off".
"Sometimes dissections can come about if you turn your head awkwardly or if you injure your neck – sometimes with massage or neck manipulation, or even sports injuries can lead to that," Dr Maddula says.
He says it's also important to note that in Maori and Pacific Islanders, strokes can occur at a younger age compared with Europeans.
"If you've developed stroke-like symptoms, get to the hospital early on because you may benefit from treatment like a clot-busting medication that might reduce the disability you might be left with."
That medication is called thrombolysis and it can only be given up to four and a half hours after the onset of stroke. The earlier you treat a stroke with it, the more effective it can be.
Dr Maddula says in Bay of Plenty, thrombolysis treatment rates are low.
"One of the main reasons for this is because patients do not come to hospital or call for help immediately after the start of stroke symptoms, and as a result miss out on this treatment."
This comes at a time when the number of strokes in Tauranga has grown by 24 per cent from 2016 to 2017.
The number of strokes in the wider Bay of Plenty region has increased by 20 per cent during the same period.
It all started with a regular fortnightly neck and shoulder massage.
"It is one of the perks in our job," her friend and colleague had told her, but the massage that day left her with a feeling of discomfort.
Four days later, after experiencing dizziness and nausea, she lost her balance and vomited.
"My flatmate and I decided to go to the doctor's in the morning. During the night I became completely paralysed and suffered a serious stroke," Asha says.
"Legs, arms, head, everything. I couldn't move. I couldn't talk, walk, and lost control of my bladder."
She says the only movement she had was blinking her eyes and she was fully aware of her surroundings and was still cognitively functioning.
Asha's flatmate found her in the morning and called the ambulance.
"Doctors believe the massage caused my paralysing stroke. They only gave me a week to survive and told my parents to prepare for a funeral and if I did make it 'what you see today is what you will see in 30 years'."
Her stroke left her in a condition called locked-in syndrome, a very severe stroke with a high death rate.
"I was surrounded by an army of friends and family, even strangers. Prayers, blessings and thoughts flooded in from every direction. The support was amazing," she says.
"Ten years on I have defied odds and am a medical miracle."
Asha can now move all of her limbs thanks to extensive rehabilitation.
She can eat, has slurred speech, but still can't walk. She is re-learning to.
"I brush my own teeth, do my makeup, paint and feed myself but I'm still reliant on caregivers 24/7."
Asha says she has always had "overwhelming" support.
"My hometown of Otorohanga put a fashion fundraiser on for me in 2016 to do rehabilitation in Sydney. We raised nearly $10,000. I feel so blessed having all this support."
She moved to Tauranga in March last year and is loving it here.
"The weather, beaches and the friendliness I have received from the people of Tauranga has been awesome. I try to stay positive and live my life as best as I can."
Some days are better than others, she says.
"Some days are so frustratingly slow in progress but aside from this my life is more enriched by the people I have met and the experiences I have made. Life has just begun and I'm looking forward to my future."
Journey to recovery
Tauranga's Olivia Greenwood from the Stroke Foundation of New Zealand runs a young stroke survivor group, of which Justin Chipchase is a member. Photo / Stroke Foundation of New Zealand
A big part of Olivia Greenwood's job is to listen – to hear the frustrations, concerns or fears, not only from the young stroke survivors but also from the people caring for them.
"I get such a thrill when the young gentleman who lives not far from our office comes in on his power wheel to show me how he can now wiggle his little finger, now take a step, now walk without his stick," the 30-year-old community stroke adviser says.
"He is someone who through his stroke has become quite socially isolated, as his communication was badly affected. This gentleman has come so far over the year-and-a-half that I have known him; I've watched his confidence grow in the young stroke group as he communicates and interacts with other survivors and I've seen the determination in him to keep going."
Olivia is based at the Stroke Foundation of New Zealand office in Greerton, Tauranga and runs the young stroke survivor group for under 65s.
"It's just a chance for them to see that they're not alone, that there are other people to help them on their journey," she says.
The group and the events they have are all about support, about doing something fun and different, and about motivation.
"I go and assist them but I don't always fully understand everything they're going through so it's nice for them to come together and share their highs and lows."
Olivia says young stroke survivors want to do new things and meet new people. This group meets once or twice a month.
"We don't have to talk about stroke because sometimes you don't want to. You have a disability but you can still do stuff like the beach mat over there, hopefully some people will go down and use the beach mat later today and get down on the sand."
The group – which has people in their mid-30s right up to "young at heart" 65-year-olds – goes out for coffee, meets for shared lunches and at Christmas time, played bowls together.
Olivia says the journey to recovery often comes with a lot of grief and distress.
"There are always new challenges, obstacles and barriers to overcome. There's the loss of independence, loss of relationships, financial and income loss and sometimes even loss of identity."
She says having an online presence on Facebook has also allowed the young stroke survivors to connect with peers around the country and region.
"Even if people can't get out of their houses, they can get support through the Facebook group."
She says the group is growing and is a welcoming and supportive bunch.
Justin Chipchase has taken up new challenges and dreams of one day getting back to work and having his arm and leg working properly again. Photo / Andrew Warner
Justin is back living at the same Paengaroa house, sleeping in the same room.
He says there was anxiety when he first came back from hospital, "going back into that same room and just trying to figure out what was going to happen".
Justin's life now revolves around doctors and rehabilitation appointments.
"Having a stroke can change lives in so many different ways. One thing I found really hard was going to bed a very private independent person and, after something I didn't know had happened, all of a sudden becoming dependant on others and having someone with me 24/7."
Justin used to do a lot of cake decorating and was arty and creative. Those hobbies and passions are now a struggle for him.
But he has taken up new challenges and dreams of one day getting back to work and having his arm and leg working properly again.
"I think it's just my nature anyway. There's no point getting all upset and negative about this. It's happened and I can't change it, so might as well be positive and use it for some good if I can."
Justin Chipchase had a stroke at the age of 36 and now is mostly wheel-chair bound with mobility, cognitive and memory problems. Photo / Andrew Warner
Justin gives talks at Tauranga Hospital to people who have recently had a stroke and also helps the Stroke Foundation with its funding campaigns.
He says having a strong support network is important and so is finding out what you are entitled to through the district health boards and the Ministry of Health.
Justin's mum and dad have been there for him throughout his recovery.
"My mum's pretty much become my personal assistant. She does all my paperwork for me because there's so much paperwork involved."
A stroke is a brain attack – a sudden interruption of blood flow to part of the brain causing it to stop working and eventually damaging brain cells. The effects can be devastating and may last a lifetime. It can be fatal.
Source: Stroke Foundation of New Zealand
Facts about stroke in New Zealand
• Stroke is one of the biggest killers in New Zealand (about 2500 people every year). • Around 10 per cent of stroke deaths occur in people under 65. • Every day about 24 New Zealanders have a stroke. About a quarter occur in people under 65. • Stroke is the major cause of serious adult disability in New Zealand. • Stroke is largely preventable, yet about 9000 New Zealanders every year have a stroke. • There are an estimated 60,000 stroke survivors in New Zealand. • Many stroke survivors are disabled and need significant daily support but recovery can continue throughout life.
