For Jean and David Ward, a motor neurone disease (MND) diagnosis came completely out of the blue.
After dealing with other health issues, unbeknownst to them, David experienced problems with some of his medication, affecting the nerves in his legs. His niggling joint pain was also put down to osteoarthritis.
“He had pains just above his knees, but he was told ‘it’s only your arthritis’. His first symptom was he couldn’t keep his thongs on and walked ‘like a drunken man’ and it just progressed from there since 2016,” Jean said.
Initially in 2018 David was diagnosed with peripheral neuropathy in his legs, however this condition masked the MND diagnosis in 2021.
Before David’s MND diagnosis, the Northern Rivers couple were active and community-minded. Now MND has taken his mobility, ability to independently care for himself, and is affecting his voice.
“I don’t think a lot of people really understand what you have to do when you suddenly go from walking to needing to be in a wheelchair,” Jean said.
“It’s lots of effort for him to shower, get dressed or shave, but that’s what I’m here for,” she said.
The MND diagnosis explained what was happening to David’s body, but it had irreversibly changed their lives - they were suddenly faced with considering how his symptoms impacted their daily living and options for assistive devices.
“David does cough when eating, but he doesn’t want a PEG down the track,” Jean said, “We had not long got his diagnosis when the speech pathologist asked how things were going – when she put the pamphlet about PEG in front of us, within 30 minutes, David just said no. Having been down the road of medication that went wrong he’s very wary about it,” Jean said.
“MND NSW and FlexEquip have just been amazing. We have been very lucky, they are so understanding – David was walking around with a walker and then the next minute he’s in a wheelchair, it’s all been a very steep learning curve for us,” she said.
“Rebekah and Savannah have been excellent support people – I joined the online Carers Kitchen Table Conversations with Savannah that has carers from all around the state, and the North West support group that Rebekah runs every couple of months.”
“When David was in hospital, I’d ring Rebekah about what equipment I might need. Our OT has helped David get the equipment he needs.”
After dealing with other health issues, unbeknownst to them, David experienced problems with some of his medication, affecting the nerves in his legs. His niggling joint pain was also put down to osteoarthritis.
“He had pains just above his knees, but he was told ‘it’s only your arthritis’. His first symptom was he couldn’t keep his thongs on and walked ‘like a drunken man’ and it just progressed from there since 2016,” Jean said.
Initially in 2018 David was diagnosed with peripheral neuropathy in his legs, however this condition masked the MND diagnosis in 2021.
Before David’s MND diagnosis, the Northern Rivers couple were active and community-minded. Now MND has taken his mobility, ability to independently care for himself, and is affecting his voice.
“I don’t think a lot of people really understand what you have to do when you suddenly go from walking to needing to be in a wheelchair,” Jean said.
“It’s lots of effort for him to shower, get dressed or shave, but that’s what I’m here for,” she said.
The MND diagnosis explained what was happening to David’s body, but it had irreversibly changed their lives - they were suddenly faced with considering how his symptoms impacted their daily living and options for assistive devices.
“David does cough when eating, but he doesn’t want a PEG down the track,” Jean said, “We had not long got his diagnosis when the speech pathologist asked how things were going – when she put the pamphlet about PEG in front of us, within 30 minutes, David just said no. Having been down the road of medication that went wrong he’s very wary about it,” Jean said.
“MND NSW and FlexEquip have just been amazing. We have been very lucky, they are so understanding – David was walking around with a walker and then the next minute he’s in a wheelchair, it’s all been a very steep learning curve for us,” she said.
“Rebekah and Savannah have been excellent support people – I joined the online Carers Kitchen Table Conversations with Savannah that has carers from all around the state, and the North West support group that Rebekah runs every couple of months.”
“When David was in hospital, I’d ring Rebekah about what equipment I might need. Our OT has helped David get the equipment he needs.”
"MND NSW and FlexEquip have just been amazing. We have been very lucky, they are so understanding – David was walking around with a walker and then the next minute he’s in a wheelchair, it’s all been a very steep learning curve for us."
When MND Upskill came to nearby Lismore, Jean was glad to have a face-to-face option available to meet other carers and learn more about MND and how to help her husband manage his symptoms.
“It was wonderful to have it here in Lismore, there are often seminars and things happening in the city or other regional centres but David just wouldn’t be able to travel that far,” Jean said.
“It was good to see some of the carers face to face rather than over Zoom. A carer at Yamba had just joined the MND NSW Zoom meetings, but with the workshop held here they travelled from Yamba to Lismore to find out more about MND,” she said.
“For one of the carers, in the previous 12 months, they had been to 165 appointments for MND care and treatment. There is that extra stress on carers to organise and get their person living with MND in the car to go to appointments.”
Jean felt she and the other attendees got a lot from the MND Upskill educational workshop offered by MND NSW.
“I couldn’t believe that it was here, it was well worth doing,” Jean said.
“I enjoyed going to the carers day very much – we got to network, and it was good to get to understand the science behind MND and its progression. The hardest part is that everyone experiences MND differently – some things I could relate to David, but it was good to know all the different types of MND,” she said.
“The information presented was clear and precise, and it was good to try out FlexEquip equipment. If MND NSW can do these sessions in more regional areas it would be very helpful, it’s so important.”
And not only did Jean and her fellow carers learn more from their MND Upskill session, local health professionals got the opportunity to increase their knowledge and ensure specialized care for their MND patients by attending the MND Upskill Health Professionals session also offered.
“When I found out the sessions were happening here in Lismore, we were in St Vincents Hospital at the time, so I told a few nurses about the MND Upskill sessions and they registered straight away as well – not only could they learn more to help their patients, but they could also get CPD points,” Jean said.
To help MND NSW continue to provide the kinds of support people living with MND in rural and regional areas need, Jean has also joined the National MND Lived Experience Network (LEN) to provide lived experiences and suggest ideas and tips for living and caring for people with MND.
