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‘Why I’m a Patient Partner’: A brain injury survivor’s story

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​​​​​​Image of Peter Kyriakides
Peter Kyriakides suffered a brain injury at the age of 24. Today, at 37, he volunteers on the Acquired Brain Injury Unit at Toronto Rehab and recently joined UHN’s Patient Partners Program. (Photo: Partners in Care)​

A  car accident in 2003 was the beginning of a devastating series of events that would change the course of Peter Kyriakides' life.

A brain injury left him in a catatonic state at the age of 24. He spent the subsequent years regaining his speech, mobility and independence, and, most surprisingly, experiencing unexpected and transformative moments that would give his life new meaning and purpose – including volunteering and becoming a patient partner at Toronto Rehab.

But let's start at the beginning.

This is Peter's story.

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Rewind: 2003

After the car accident, 24-year-old Peter was sent to the hospital with a few scrapes and bruises and left with a minor concussion thinking he would recover in a few weeks.

But weird things started happening.

He would walk to his car in the driveway and the pavement would spin. He'd trip over his feet at work trying to keep up with the restaurant rush. He would eat heavy meals and vomit shortly after.

Five months after the accident, a slip and fall incident in the shower sent Peter to the hospital where brain inflammation was detected and a spinal tap was required.

Ten days later, Peter remembers waking up in a catatonic state – unable to stand, talk or move.

His diagnosis: Leukoencephalopathy, a disease that damages the material that covers and protects nerves in the white matter of the brain. He was told his best option would be to transfer to Toronto Rehab's Bickle Centre for Complex Continuing Care.

'I felt like my life was over'

The gravity of Peter's new reality started to take a toll.

"I fell into a depression – I felt like my life was over," says Peter.

"I remember feeling less than I was – like a second-class citizen. Most people don't see that there is a capable, living human being inside that muted body." 

It took more than  a year until he could start participating in his own therapy.

Image of Peter and Greg Noack
Greg Noack, Rehabilitation Therapist (right), worked closely with Peter to help him regain his strength, mobility, confidence and independence. (Photo: Peter Kyriakides)​

"When I met Peter, it was about one year after his injury and he was still very reliant on other people for his basic needs – so breaking that dependence was our first big challenge," says Greg Noack, Rehabilitation Therapist on the Acquired Brain Injury Unit (ABI) at Toronto Rehab and a brain injury survivor for 19 years. 

"Inter-dependence leads to independence so Peter and I worked together to build his confidence and capacity. I've watched Peter evolve as a patient, and now as a friend, and what inspires me most is that he does not let his physical disability define him – he's a person first."

Gradually, Peter was empowered to do things on his own including getting dressed, feeding himself, and eventually, learning to speak again.

Finding new purpose: Joining the Patient Partners Program

Thirteen years later, 37-year-old Peter lives in Toronto independently in his wheelchair, and is able to walk with assistance.

Three years ago, he began volunteering on the ABI unit at Toronto Rehab and takes pride in being able to share his experience with other patients, helping them navigate the challenges of living with a brain injury.

But he wanted to contribute more.

Image of Peter with Patient Partners
UHN's Patient Partners attended a Skill Building and Orientation Day in July 2015. There are currently 38 active Patient Partners across UHN. (Photo: Partners in Care)

He applied for the Patient Partners Program, which recruits, selects, orients, and provides skill-building for patients and caregivers who are matched with UHN committees and groups to contribute to important hospital planning and decision-making activities.

"Partnering with patients to help shape care is extremely important to the safety, quality and experiences of patients and caregivers at UHN," says Kerseri Scane, Partners in Care Leader.

"Patients have much knowledge and wisdom to contribute about their experiences – by working together and sharing our knowledge and experience, we can make patient care better."

Engaging patients at the bedside

Peter was matched with Toronto Rehab's Nursing Shift Report at the Bedside (NSRB) Committee in July 2015.

Traditionally, shift changes would occur at the nursing station – however new research shows when patients are engaged in their health care, it can lead to improved safety and quality.

The goal of shift reporting is to support patient safety through enhanced communication at the bedside, enabling patients and families to join the conversation during the handover. By March 2016, all Toronto Rehab sites will be engaged in this practice.

"This offers patients a safer transition between shifts and improves communication – it gives both nurses an opportunity to clarify patient information and also for patients to put a face to who will be taking over," says Carol Skanes, Clinical Nurse Specialist, Geriatric Rehab and Patient Partners Liaison on the NSRB Committee at Toronto Rehab. 

"Having the Patient Partners has added a whole new level to this committee – their insights are so valuable because they raise questions that we may not have initially considered."

Peter, one of three patient partners on the Committee, feels like he's part of the team and has an important voice at the table.

"This work is extremely important to me – and is also an aspect of my recovery. I don't feel like an outsider, I feel like I'm part of the group and that my input matters," says Peter.

"There was a time in my life where I had to blink my eyes to communicate so I understand what it feels like not to have a voice. Now, I feel it's a duty to share my knowledge so I can help future patients."

Peter participated in his first large-scale speaking engagement in 2014 at the March of Dimes Acquired Brain Injury Conference in Barrie, where he talked about his experience and life after brain injury. He and Greg also do monthly talks called "Brothers of brain injury" for new patients and families on the ABI unit.

The Patient Partners Program and Shift Report at the Bedside are initiatives within UHN's Partners in Care Roadmap. To learn more about Partners in Care, click here.

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