'We want other young stroke survivors and their families to have someone to turn to.'

There are many words to describe Tim Glendinning - passionate, popular, intelligent, courageous and loyal. He is best remembered by those closest to him as a beautiful soul with a big heart. Someone who spent his life interested in the world around him.

Tim was a gentleman from top to toe who dressed immaculately and was fond of a chat (which sometimes turned into friendly debate). He was bold, kind and fun. He adored his close-knit family and loved his adopted city of Sydney.

But behind this engaging, articulate young man was a life turned upside down by stroke. Stroke taunted Tim Glendinning for 17 years. It crept back time and time again when it was least expected. Each time Tim’s life seemed back on track, stroke cruelly knocked him down again. He suffered at least seven strokes and multiple TIAs (Trans Ischaemic Attacks) between the ages of 19 and 36, an extraordinary battering for a brain.

The majority of people in Tim’s life had no idea about the war raging in his brain. They were unaware of his ongoing physical and mental battle because he chose not to talk about it. Tim didn’t have the answers to their likely questions. He didn’t know what was causing his strokes and why they kept happening. Most of all, Tim Glendinning did not want to be defined by stroke. He didn’t want people to worry about him, pity him or think anything less of him. He tried his best to live life well.

After the years of silence - now is the time for Tim’s story to be told.

Tim Glendinning was born in Sydney on April 4, 1981 to proud first time parents Bruce and Lynette. He was the first grandson in both families - a happy child, whose family moved to Canberra when he was three.

Tim was fun-loving, intelligent, courageous, caring and easy going. He was surrounded by friends and had a wide range of interests, including music, theatre, books, cub scouts and playing tennis, hockey and golf. In high school he made films with his friends, including ‘For the Fallen’ in which Tim played a tragic hero.

Tim’s oldest friend Richard (who directed the films) fondly remembers the days they would hang out together as boys, flicking through car magazines, playing Xbox and having sleep-overs. Tim was always confident, with a wonderful optimistic spirit. Richard says Tim taught him to shuttle down the side of his parents’ steep driveway on a skateboard at terrifying speed. They would scream and hang on for dear life, but loved the adrenalin rush.

Then there was Tim’s younger brother Matt, who was never far behind him. They were 21 months apart and a wide-eyed Matt looked up to Tim. The cheeky boys would muck around in the yard together, play cricket, hockey and tennis, go sailing and play with Max, the family labrador.

As a part of two loving extended families, Tim and Matt enjoyed family get togethers, camping trips with their cousins and all things outdoors. As teenagers, their adventures even sparked a police search one day on a kayaking trip. When they reached the river it had run dry so they had to trek seven kilometres back to the campsite with the kayak. They failed to show up for hours, panicking Mum and Dad. (This was in the days well before mobile phones!)

Both boys would excel in sport. Tim played cricket, soccer and hockey while Matt competed in representative hockey. They both loved ancient history and took a keen interest in world affairs as well as good food and good company. Later in life Tim would become the “go to” guy for restaurant and bar recommendations.

At school Tim did well academically. He was intellectually curious and loved literature and languages. He had an extensive understanding of World War 2, American history and contemporary Australian politics. He acted in a number of school plays, was a prefect and won an outstanding leadership award.

He was part of a strong friendship group at Canberra Grammar School. Many of Tim’s mates, describe him as a true friend - loyal, kind and generous. As they grew older, life took them on different paths, but the close bond remained. When they got together, they could pick up where they left off, like no time had passed.

Like many school leavers, Tim set off on an adventure and had a gap year as a tutor at a boarding School in the UK. He took a bus trip around Europe with a big circle of friends, testing out his new found freedom. Tim had a blast and fell in love with Spain and its tapas bars. He was also determined to go back to explore ancient Greece.

Tim returned home and in 2000 was ready to study Economics, Commerce and Spanish at the Australian National University. Life was good. He was 18 years old, studying, working in a bottle shop and enjoying a busy social life.

In September, the active young man went for a surf at Bateman’s Bay with his close school mates. It was the day before the Sydney 2000 Olympics. This is when Tim’s life took an unexpected turn.

Tim emerged from the water and collapsed on the beach. His face and whole left side of his body had drooped (hemiplegia). His friends rushed him straight to the local doctor who recognised stroke. The town’s hospital didn’t have the facilities to treat him, so he needed to get to Canberra, almost three hours away. They were frightened, but didn’t truly understand the magnitude of what had happened.

The boys drove him back home to an anxious family in Canberra who raced him to hospital. It was over four hours from the time he collapsed to the time he reached hospital, where he would spend the next week undergoing tests and recovering. A large part of his brain had been affected, but no cause was found. This led to unimaginable frustration for Tim and those who loved him the most. How could this have happened to a fit and active 19-year old man? How could they move forward without answers? The unknown future was as frightening as the stroke itself.

Tim went from having his whole life in front of him into uncertain territory. His world stopped.

After a week in hospital, a weary Tim was discharged. While he was recovering most of his physical functioning, he struggled to deal with what had happened. There was still no tangible reason for the stroke and no support offered to Tim and his family.

Tim’s hemiplegia (the paralysis he experienced down the left-hand side of his body) virtually disappeared, although his left arm and hand tended to droop when he was tired. Other than that, Tim did not display any overt physical signs of stroke.

Tim was advised to drop Economics at university because of his brain damage. He was also told he could not swim on his own or play sport and to avoid alcohol. He found driving difficult. His parents bought Tim a manual car so he would have to use his left hand to change gears. It helped. The strength in his hand improved.

Still, it was an enormous amount of change for a young man to deal with. Fatigue was a huge issue for someone who was used to having a lot of energy. This was accompanied by a crippling sense of lost potential.

Just over three months later, right before Christmas, Tim suffered a second stroke. He was in denial at first. He did not want to believe it was happening to him again. However, Tim’s uncle, who was a doctor, was visiting the family at the time. He immediately recognised the signs of a stroke as Tim’s face was drooping and he had weakness in his arms. There was no denying that Tim had suffered another stroke.

At a time when most families are happily making plans for festive feasts, gatherings and holidays, the Glendinnings were back at the hospital and Tim was put on blood thinning treatment with constant testing for the next month.

Following the strokes, Tim’s friends rallied around him, but he could no longer fully take part in the things young men do, like go to the pub or play team sports. He felt lonely, frustrated and sad at the loss of being a central part of his ‘band of brothers and sisters’ and his wide circle of cousins.

Tim entered a dark place. Depression would plague him in various forms for the next decade. It would come and go, but Tim would put on a brave face to the outside world. You could no longer tell he had suffered a stroke.

Since he had been advised to drink only sparingly, Tim decided to make each drink a good one. He developed a great interest in wine, working in Canberra’s first wine bar. He cultivated a connoisseur’s palate and knowledge of wines from all over the world.

Despite Tim’s health challenges, he completed his degree and moved from Canberra to Sydney in 2004, determined to make his own way. He felt well and believed his stroke nightmare was over.

Given Tim had received so little by way of support and there was no medical diagnosis, he did not see much point in connecting with the clinical world. However he lived at Coogee Beach, very close to the Stroke Research Centre at Prince of Wales Hospital in Sydney and was referred there on numerous occasions. The doctors still didn’t have the answers he so desperately wanted. It wasn’t clear why he had suffered the strokes or whether he was at risk of having another one further down the track.

In Coogee and Clovelly, Matt and Tim shared an apartment together - as they would a number of times in their adult life. There were lots of happy memories and good meals. They had similar personalities, shared interests and enjoyed good, long chats. Tim was cultivated and witty and the conversation never ran dry.

But it wasn’t all rosy. Tim was also prone to mood swings, frustration, depression and anger. While Tim would appear fine outside those apartment walls, Matt admits he was tough to live with at times. But brotherly love has a way of overcoming that.

Tim’s love of a fine drop opened the door for new connections with people. His love for life and capacity to talk to anyone about anything served him well. It was a gift. He lit up many a room and was able to cross age, race and social boundaries to find common ground with almost anyone. Tim was well read, had a great sense of humour and enjoyed talking with others about politics, food, aboriginal art, architecture, current affairs, sport - and of course, wine.

Tim was a regular at his local café and people would stop by to chat with him. He sat at the same table each day, enjoying a coffee and devouring three newspapers. Tim never saw himself as an intellectual or an expert, just someone who was interested in what made the world tick. He completed a post graduate qualification in Change Management through UNSW, determined to make a career in organisational change.

In Tim, people saw a young man full of fun and totally engaged in his community, but beneath it all, his parents and brother saw something very different. They knew Tim was in pain at the losses he faced and hopes for a life he could never live. They knew he was struggling because there was still no explanation for his strokes.

The one topic Tim, the conversationalist, didn’t want to talk about was stroke. It was not in his vocabulary. He wanted nothing to do with it after being burnt too many times. Over the years, doors would close in both his working life and romantic life once people learnt about his history with the disease.

Tim found stroke hospital wards to be grey, depressing and full of old people with whom he had nothing in common. He was young and active. He didn’t fit in there. He didn’t want family or friends to see him in a stroke ward and view him differently. He felt the stigma of having a brain condition primarily associated with older people.

As Tim continued to have more strokes about every two years, each one left him more damaged and depleted. His intense hatred of stroke wards came to a head at one point, when he had simply had enough, discharged himself and walked four kilometres home.

The impact of stroke on Tim’s close-knit family was enormous. His parents Bruce and Lynette and younger brother Matt were there to offer love and support, but rode an emotional journey of their own, watching helplessly as Tim kept saying, “there is nothing anyone can do”. His family lived on constant alert. Given there was no known cause for his strokes, there was no indication of if, or when, it would happen again. There were theories a blood clotting disorder may be connected, but it wasn’t possible for the medical teams to confirm.

In the last five years of Tim’s life, he began to suffer epileptic seizures, as a result of the scarring of brain tissue due to his strokes. Bruce and Lynette would worry when the phone rang that it could be bad news, but they would also worry if it didn’t ring. The silence was unsettling. They would wonder if Tim was okay.

Bruce and Lynette felt isolated. At the time, there was no support for families of young adult stroke survivors. There was no network of people who had walked in their shoes and it was hard to explain to people the pain of seeing their beloved son suffer.

Then there was the guilt and feelings of helplessness. It was hard for people to believe there was not much known about young adult stroke. Any implication that Bruce and Lynette should be doing more as parents to knock down doors and demand answers, was hard to bear.

But they coped as best they could and Tim lived his life as best he could, despite his internal mental battles and the challenges his health threw at him time and time again. Tim managed to get himself to hospital on a number of occasions following a seizure, a stroke or a TIA. Most of the time he’d keep his parents in the loop, but once they turned up at hospital he’d question why they were there because there was little they could do to help. He’d tell them “I’ve got to get on with my life, please get on with yours.”

However, he did fail to mention that in 2016, he almost lost his life during a trip to the Gold Coast. The family only found out when his girlfriend, who watched him nearly die in the ambulance, opened up about it. At the time, Tim simply picked himself up again without fuss as he had done many time before. He told the doctors “I’ll be fine, I’m going home tonight”.

Bruce and Lynette believe Tim’s doctors understood that he was a ticking time bomb – and so did Tim. But no one else really appreciated how much he lived on a knife’s edge, because he seemed so normal. It was like he knew he wasn’t going to get better. As a result, something just clicked as he reached his late 20s. He threw himself into life and focused on living as well as he could.

Tim began working with a large insurance company in strategy and came to the attention of the CEO. From there he worked with his family’s consulting practice for four years, consulting to organisations and leaders including Vice Chancellors, CEOs and senior public servants in managing organisational change.

Tim then moved up the corporate ladder, working for a major bank in implementing enterprise systems change. At one point he had over 50 staff reporting to him. It wasn’t always easy and he struggled to meet the demands of particular roles at times. But he was bright and warm and had a strong work ethic, a trait passed down by his parents.

Tim really started to kick goals. He re-emerged out of a dark hole, started yoga, completed a couple of gruelling fun runs and fell in love.

Tim shone in his last role. Through sheer skill and determination, he worked in a high pressure job as a change agent for a large corporation. He was highly regarded as leading a team that interacted with many other teams to implement major changes in financial management, Tim was sharp, strategic and grasped the big picture. He had excellent people skills. A leader by nature, he created an amazing team with a true sense of community. Tim was smart, fair, respected and had a good sense of humour, all of the attributes of a good manager.

But, once again, he hid his on-going health struggles from almost everyone.

Tim was hitting his stride, he was satisfied and he was the happiest he had been in years. He had fallen in love and was planning a shared future. His last message was one of love and encouragement – he told his girlfriend, “you are stronger than you think and braver than you think’.

Tim sadly passed away on April 27, 2017. This time his body could no longer fight the impact of stroke. His loved ones believe ‘he stayed with us as long as humanly possible”.

Tim brought joy to people’s lives. He was brave, gregarious, strong willed and extraordinarily high functioning considering what he had been through. He had an enviable sense of style and carried himself with grace and dignity.

When he died his family, colleagues and friends were left in shock and devastated.

With heavy hearts, Tim’s family now wants to celebrate their beloved son and brother by setting up a memorial fund in his name. Their mission is to improve understanding of young adult stroke and to end the stigma surrounding the disease amongst young people so they can feel more confident to talk about their experience and to reach out for help when it is needed.

The Glendinnings want to help other young adult stroke survivors and their families deal with the devastation stroke can bring by making relevant information and resources available to them. They want to improve the environments in which young adult stroke survivors are provided care so they don’t feel out of place or isolated.

And finally, the Glendinnings want to support research that may help young stroke survivors and their families get a clear diagnosis. Currently 25 percent of young people who have a stroke, like Tim, do not know its cause. The uncertainly of Tim’s journey was one of the most difficult aspects for him and the family.

Matt Glendinning knows life must have been terribly painful for his brother at times, but he admires the way Tim was able to re-invent himself and carry on in the face of an uncertain future. He demonstrated a strength of will and a strength of heart.

The Glendinning family would like young people to know stroke is not always the end of someone’s life. There will be battles and setbacks along the way, but there will also be triumphs and achievements too.