In 2019, Phil and Sarah were living what Sarah describes as an “active social retirement”. Phil had retired from his role within the Australian Customs Service, and Sarah was working part time as an ecological consultant. By this stage they had a modest but comfortable income. They had bought a four-wheel drive and a caravan a few years earlier, and begun to explore Australia. They went on a few overseas trips as well. Still relatively young and fit —Phil was 72, Sarah was 65—they were looking forward to many more years of adventures.
Then, in December 2019, Phil was diagnosed with MND.
The signs had been there for a while—from about 2014 it had gotten harder to wake up in the morning, and Phil noticed he was shuffling his feet, sometimes stumbling. He put it down to “the ageing process”. By 2015, he knew there was a problem. It took another four years of seeing doctors and physiotherapists before getting the formal diagnosis. By that stage he was struggling to walk without assistance.
Thinking Phil may only have two years to live, they went from making travel plans to working out how to get through each day. “The diagnosis turned our lives upside down,” says Phil. “I was no longer able to contribute to any household chores. We sold our van and car and bought a more suitable vehicle. I couldn’t drive any more, so Sarah had to drive me everywhere.”
Sarah gave up her job. “I had to take over his care, all household responsibilities, and at that stage, nearly all decisions. I lived the first two years in a high state of stress, concerned whether I could look after him.” Phil and Sarah grieved the future loss of their lives together, not knowing what will be next.
There have been silver linings, one in the form of physiotherapy.
“In 2022 things began to change,” says Phil. “We organised to get two sessions of physiotherapy a week at home. At the same time my neurologist identified that I also had Parkinson’s symptoms, and I was given medication for that. As a result, my condition appears to have stabilised. I am fortunate because I only have issues with mobility. I can still talk, eat and breathe. My neurologist has revised my life expectancy from the average of two years to possibly as much as 10 years.”
“My expectations of how to live my life have changed considerably. We have recently purchased a second-hand vehicle modified to fit my motorised wheelchair, and we are able to get out together more and see more people. We are even hoping to drive Adelaide to visit family before the year is out.”
For Sarah, Phil’s longer prognosis has changed her outlook. Rather than living around the disease, they are living despite the disease. “We look forward to being able to do more,” she says.
However, like all people living with MND, Phil’s condition will get worse over time. At some stage he will need full time care. “I may need to be fed intravenously,” says Phil. “I will need breathing apparatus and will be unable to talk, although my brain will be fully functional.”
“Economically we are facing real financial challenges,” says Sarah, something she describes as “frightening”. Because Phil was over 65 when he was diagnosed, he isn’t eligible for NDIS funding.
As Sarah says, “Although on the highest level of My Aged Care funding, after provider fees are taken out, we have $40,000 of funds a year to cover all expenses.” This covers around six hours of domestic and personal care and two hours of physiotherapy a week. “We have paid substantial amounts of money for the modified car and other incidentals ourselves.”
“The inequality in the aged care system for people with MND is huge,” says Sarah. “The difference between the highest aged care package and the average NDIS package is about $180,000.”
Sarah and Phil both feel fortunate in many ways. “I have been able to retain my interests through volunteer work,” says Sarah, “which has been a lifeline for me.”
Phil has remained the steady one, according to Sarah. “He has accepted his situation much better than me and calms me down when everything seems complicated and awful.” Decisions are still difficult, she says. “Any new requirements remain very convoluted to organise and implement.”
“Our GP, neurologists, and physiotherapists have provided physical and emotional support. The staff from Canberra’s MND Clinic and Palliative Care, the MND Association and fellow MND sufferers in ACT, have all given support.”
“Through all our journey we have received a great deal of help, and we are enormously grateful. Still, it is very difficult to live with the unknown.”
This story has been adapted from a speech that Phil and Sarah gave at the MND Australia 30th Anniversary event at Parliament House, Canberra, in June 2024.
