05 Oct Cerebral Palsy hasn’t deterred John Longmore from living a full life
John credits the support from Timboon and District Healthcare Service (TDHS) as one of the reasons he is still able to live independently in his hometown of Cobden. John’s story is one of determination and strength through the many challenges he has faced.
We caught up with John to discuss cerebral palsy. Cerebral palsy (CP) is a physical disability that affects movement and posture. People who have CP may also have visual, learning, hearing, speech, epilepsy and intellectual impairments. There are around 34,000 people living with CP in Australia.
John’s medical journey has included a diagnosis of CP when he was aged 2, cornea transplants, bronchitis, oesophageal cancer and melanoma, and lengthy hospital admissions. While Cobden is his hometown, John also lived and worked in Melbourne as a clerk for the State Electricity Commission for 28 years before returning to Cobden in 1988.
John credits the ongoing support of his parents for ensuring he had the resources he needed for a full life. “My parents constantly pushed for better outcomes for me,” John said. This led to John’s parents seeking answers when their two-year-old wasn’t as active as they expected – just lying in place and not moving around much.
John’s CP diagnosis was made back in 1937 by Dr Douglas Stephens, the head doctor at the Children’s Hospital. CP is caused by abnormal brain development. In John’s case this was attributed to a difficult birth where the umbilical cord was wrapped around his neck.
Dr Stephens advised John’s parents “don’t hide him.” At a time when people living with CP were often institutionalised, John’s parents took this advice.
From the age of two, John wore leg splints. “I wore splints on my legs from age 2 to 11, day and night,” John said. When he was 11, he learned to ride a bike. “When I fell off my bike, my parents made me get right back on.” John added.
John attended local schools including Cobden Primary and Camperdown High School. After completing school, he worked locally for a Cobden builder until moving to Melbourne in 1960.
John has never let his CP get in the way of living life to the full. He had a lengthy career umpiring for regional and metro cricket associations. John has also travelled extensively with trips to Japan, Hong Kong, USA, and Europe including the UK, Greece, Austria and Norway.
On 13 December 2013 John had a fall in his Cobden home. He praises TDHS Regional Assessment Officer Fiona Hanel with saving him. “Fiona rescued me, she rescued the old codger,” he said. Between December 2013 and January 2016, John spent 758 nights in hospital fighting for his health, vision, and independence. Throughout this time, he had suffered a couple of falls resulting in hospitalisation and was diagnosed with keratitis herpes simplex which resulted in a deterioration of his eyesight.
It was during this time that his brother Hugh also passed away. Hugh had lived a couple of houses away and the two men were charged with the responsibility of looking out for each other. Prior to Hugh’s death, the brothers had spent five weeks across the hallway from each other in TDHS. John says the days during that period were the darkest days of his life. His eyesight was failing, and Hugh was succumbing to prostate cancer.
“That was the hardest time for me. If it wasn’t for the doctors and nurses, I couldn’t have got through it – it’s not just them though, it’s the kitchen staff, the community drivers, the administrators – I love them all.”
During his hospital stay at TDHS John attended physiotherapy and group activities. Once John was discharged, he received daily visits from staff including the District Nurses and Community Care workers as well as being a recipient of meals on wheels from Cobdenhealth.
“Without the care from TDHS, I would not be here today, they are my lifesavers, the atmosphere is like my home away from home.”
Currently aged 86, John is still a regular participant of exercise classes at TDHS. John looks forward to his weekday visits from Timboon’s home and community care workers who monitor his health, complete domestic chores, have a chat and take him to social events.
Recently he went to see the movie Elvis with community care worker Andrea Stewart. At the time of interview, they were also planning their next outing to see comedian Kitty Flanagan perform in Warrnambool.
“The community care workers are fabulous, and I can’t believe how lucky I am,” John said.
“I’ve been told I’m a born survivor but community care is one of the main reasons that I’m still on my own.”
John’s advice to young people diagnosed with cerebral palsy or other challenges is to appreciate life and don’t let it stop you. “You will get knockbacks but refuse to let it deter you. Have a plan, and work towards your goals.”
World Cerebral Palsy Day is happening on 6th October asking people around the world to come together to celebrate and support those living with cerebral palsy, to embrace diversity and to help create a more accessible future for everyone.