16 Feb John uses positive attitude to navigate his MS journey
A positive attitude and a strong will for independence has helped John face many challenges throughout his journey with Multiple Sclerosis (MS).
Timboon’s John Wilson was diagnosed with MS in 1983. The first symptoms for John included a loss of sensation. “I was drying myself after showering and couldn’t feel the towel on my back,” John said.
John worked for almost 40 years as a stock agent. As his MS very slowly progressed he started experiencing other symptoms. “I was dropping my notebook whilst pencilling records at the saleyards.“ After some time, John’s walking gait also changed, and he started to experience some tumbles and falls when walking.
John has Primary Progressive MS (PPMS), which means that there is a gradual progression of the disease over time. This is a less common form of the disease; only 10-15% of Australians with MS live with PPMS.
Over time John adapted to using a walking stick, then two walking sticks and eventually started using a wheelchair. Maintaining independence continued to be John’s main focus and was something he never wanted to lose. He was able to manage by himself and with the help of family for a long time, but at some stage John had to accept that he required some help in certain areas.
Timboon and District Healthcare Service (TDHS) District Nurse services were organised and they visited John every day (except Sundays) to provide minimal assistance for his personal care over a period of 18 years. With John’s chatty, infectious nature, it was inevitable that a close professional bond was established.
Jo Delaney was one of the visiting District Nurses caring for John. “He never complained,” she said, “and never wanted us to feel sorry for him as he felt that there were people out there worse off.”
Even when he was unwell and his disease was progressing he still remained as independent and as positive as he could be. “John has an extremely caring attitude,” Jo said. “He always asked how our families were and took a lot of interest in our lives.” Lots of conversations were had together with lots of laughs and the deal was “What’s said in the bathroom, stays in the bathroom.”
John’s caring attitude shows in his volunteering over time. His volunteering for the Lions Club and TDHS over decades has helped out a lot of community members.
“We live in the most magnificent community. Having the benefit of being a member of the Lions Club for some time, they’ve been very good to me too,” John said. John and wife Sue joined the Timboon Lions Club when they were in their 30s.
John’s community involvement has also included delivering Meals on Wheels for TDHS with his wife Sue and being the inaugural chairman of the TDHS Consumer Advisory Committee.
“I always thought I would be the one to continue to help people out, but over the years have had to concede that I have to accept help from others,” John said.
Community Care services have also been crucial in maintaining John’s independence living at home and supporting his wife, Sue, as his primary carer. As part of an integrated and holistic approach to John’s management of his disease, he also uses the physio gym at TDHS, Osteopathy at the Timboon Clinic, remedial massage and hydrotherapy in Warrnambool, firstly at the Archie Graham Centre and later at the facilities at St John of God.
John credits the access to services via TDHS as the main reason he was able to stay living at home with wife Sue for as long as he did.
With further progression of John’s MS in the last 12 months, acute medical events have challenged his ability to be at home and have slowly taken away some of his independence.
This meant that John recently had to move into TDHS residential care.
John is pleased to be able to remain in his own community while receiving a higher level of care. “I never thought this day would come,” John said, “but if I have to be in care, how lucky and fortunate am I, to have a bed here at TDHS, or as Pat Couch (a former permanent residential care resident) called it “a home away from home”.
Even though TDHS has made the transition process for John as easy and comfortable as possible, moving into permanent residential care can not only cause physical, but also mental health challenges. “Feelings of anxiety, fear, guilt and loss are normal during this transition process,” Fiona Hanel, Regional Assessment Officer, said, “and everyone deals with this differently.
John’s positivity and gradual acceptance of the situation is a credit to his resilience. The staff at TDHS express that it is a pleasure to have him on the ward. “He engages with the other consumers with a friendly chat and spreading kindness in the same way he did when he volunteered,” Michelle Selten, Nurse Unit Manager said.
John feels he’s settled in well. “I keep entertained with reading the paper, listening to audiobooks and watching iView on my iPad. I visit the physio gym for my regular classes and have also been given an individualised exercise program, which includes some gentler exercises with weights that I can do in my own private time,” John said. He also partakes in any ward activities, provided by TDHS Activities Officer, Kerrie Parker. John particularly enjoys speaking with students on placement at TDHS.
John rates the staff at TDHS as “second to none” and being a valued community member and still remaining in his community means that no day goes by without a visit from family and/or friends. It surely is a “home away from home”.
My Aged Care can assist consumers to access Australian Government-funded aged care services. You can call the My Aged Care team on 1800 200 422 or visit their website at www.myagedcare.gov.au. Alternatively, you can contact our Regional Assessment Officer, Fiona Hanel, on 5558 6000 to make an appointment for a face to face chat.