From care journey to Care Partner
Trekking through the jungles of South America was a dream come true for Jessica Kocur. She was in her late 20’s when she decided to take the trip of a lifetime with now husband Chris. They hiked up and down mountains, climbed up to 4900 metre above sea level in the Andes and then down into the Amazon basin, navigating through dense brush and streams along the way. Two weeks after one of their adventures, Jessica began to feel sick. She had a constant headache and was lethargic. She sought medical care at a clinic in Peru that conducted various diagnostic tests including multiple lumbar punctures to identify the cause of her symptoms. This was just the beginning of Jessica’s road to recovery. After the initial onset of her illness in South America, Jessica was flown back to London, Ontario for care.
During her care journey she suffered multiple mini-strokes, was in a coma for more than three weeks and was on life support in intensive care. She was eventually diagnosed with a rare condition called Acute disseminated encephalomyelitis (ADEM). ADEM causes inflammation in the brain and spinal cord that damages the insulating material (myelin) covering the nerves in the brain and along the spine. Without this protective coating, signals from the brain to the spine and back cannot occur.
Jessica continued her recovery in the Stroke/Neurological Rehabilitation Program and Comprehensive Outpatient Rehabilitation Program at St. Joseph’s Parkwood Institute where she received daily support from the stroke team to gain back as much function as she could. While she is grateful for the expertise the care team provided, she found rehabilitation a difficult time period in her life. “It was tough…it was a continued roller coaster… I worked hard, and slowly began to get better, but not as quickly as I wanted to,” Jessica remembers. “Then one day, it dawned on me, that I would be dealing with parts of my condition for the rest of my life.”
To get through this challenging time, Jessica began writing about her experience. “I loved to write stories growing up and I started writing my own story as therapy, to get it off my chest, but also to share with others.” Her writings were turned into a book entitled, ‘Reset.’ with the tagline, ‘Meeting the new Me on the other side of a coma. An inadvisable way to reset your life.’
“I’ve always tried to see the positive side of my journey, to uncover the lessons within what has happened to me. I hope sharing how I felt, especially after my active recovery and discharge from hospital, will help others see they are not alone.”
Jessica has volunteered her time to give back to St. Joseph’s as a Care Partner on Parkwood Institute’s Patient and Family Caregiver Advisory Council. The council is made up of patients, caregivers and staff from all care areas at Parkwood Institute Main Building. Members are provided opportunities to co-design care delivery from participating in creating and reviewing patient information and education materials to sharing ideas on the construction of new spaces, like the revamped cafeteria.
Learn more about becoming a Care Partner at St. Joseph’s.