‘Best interview ever’ gets ball rolling for Bronwyn

One morning 10 years ago, Bronwyn woke up and discovered she couldn’t get out of bed. Since then life has turned upside down for the Dubbo resident and her husband Stewart.

“We got married in 1975 and worked together in the hospitality trade from that point on, me as a chef and Bronwyn as a waitress – both very active professions,” says Stewart. “So it was quite a shock when it happened.”

“The only thing we’d noticed leading up to the crisis was that she was losing her balance, but that was it really.”

Bronwyn’s mother contracted scarlet fever while carrying Bronwyn and this caused damage to Bronwyn’s pancreas, which led to the onset of diabetes when she was 20. But there was no way of knowing that her mother’s illness would come back to haunt her 36 years later.

“We battled on for a few years – Bronny could only walk with me leading her from the front. Finally a few years ago a new neurologist was appointed at Dubbo Hospital and after a few tests, it turned out that Bronny’s condition wasn’t diabetes but something very unusual.”

The diagnosis was spinocerebellar ataxia, which affects the nervous system. In Bronwyn’s case it has left her with no balance, no feeling in her left side and no sensory perception in her feet and legs, as well as affecting her speech. She now relies on a wheelchair to get around.

“It might sound strange but once I found out what Bronny’s condition was, I was relieved. Not knowing was terrible,” says Stewart.

With neither Bronwyn nor Stewart having any family close by, Stewart had to carry the load of working and caring for Bronwyn until a couple of years ago, when an assessment by an occupational therapist led to some support from the NSW Government including respite care.

In the meantime Stewart paid for modifications to the couple’s bathroom, kitchen and bedroom out of his own pocket.

Just over a year ago the couple received a letter from the NDIS, which led to a pre-planning interview with Social Futures Local Area Coordinator (LAC) Jessie.

“It was literally the best interview I’ve ever had, because she gave us every little detail about what the NDIS could do for us to support Bronny’s needs,” says Stewart.

Bronwyn’s plan came through a few weeks later. Following recommendations from an OT report, Stewart was able to purchase a mobile hoist for use in the bedroom and bathroom, purchase a hi-lo bed, redo the decking outside the back door, and get in-home support every day and respite care every night – all with National Disability Insurance Scheme (NDIS) funding.

“I do split shifts at work so to have someone come in and prepare Bronny’s lunch every day has been fantastic. They also take her for excursions and read her books – reading has always been one of her passions.”

Five months ago Stewart wrecked his shoulder and had to have an operation.

“I couldn’t seem to organise any extra help with my existing support provider so I rang Jess and explained the situation to her. Within days Jess had managed to find a support service who were able to provide extra support for 8 weeks while I was in recovery.”

“Now I’m back at work and our lives are back on track but we wouldn’t have been able to make it without Jessie’s help. She has gone out of her way for us.”

“We got married in 1975 and worked together in the hospitality trade from that point on, me as a chef and Bronwyn as a waitress – both very active professions,” says Stewart. “So it was quite a shock when it happened.”

“The only thing we’d noticed leading up to the crisis was that she was losing her balance, but that was it really.”

Bronwyn’s mother contracted scarlet fever while carrying Bronwyn and this caused damage to Bronwyn’s pancreas, which led to the onset of diabetes when she was 20. But there was no way of knowing that her mother’s illness would come back to haunt her 36 years later.

“We battled on for a few years – Bronny could only walk with me leading her from the front. Finally a few years ago a new neurologist was appointed at Dubbo Hospital and after a few tests, it turned out that Bronny’s condition wasn’t diabetes but something very unusual.”

The diagnosis was spinocerebellar ataxia, which affects the nervous system. In Bronwyn’s case it has left her with no balance, no feeling in her left side and no sensory perception in her feet and legs, as well as affecting her speech. She now relies on a wheelchair to get around.

“It might sound strange but once I found out what Bronny’s condition was, I was relieved. Not knowing was terrible,” says Stewart.

With neither Bronwyn nor Stewart having any family close by, Stewart had to carry the load of working and caring for Bronwyn until a couple of years ago, when an assessment by an occupational therapist led to some support from the NSW Government including respite care.

In the meantime Stewart paid for modifications to the couple’s bathroom, kitchen and bedroom out of his own pocket.

Just over a year ago the couple received a letter from the NDIS, which led to a pre-planning interview with Social Futures Local Area Coordinator (LAC) Jessie.

“It was literally the best interview I’ve ever had, because she gave us every little detail about what the NDIS could do for us to support Bronny’s needs,” says Stewart.

Bronwyn’s plan came through a few weeks later. Following recommendations from an OT report, Stewart was able to purchase a mobile hoist for use in the bedroom and bathroom, purchase a hi-lo bed, redo the decking outside the back door, and get in-home support every day and respite care every night – all with National Disability Insurance Scheme (NDIS) funding.

“I do split shifts at work so to have someone come in and prepare Bronny’s lunch every day has been fantastic. They also take her for excursions and read her books – reading has always been one of her passions.”

Five months ago Stewart wrecked his shoulder and had to have an operation.

“I couldn’t seem to organise any extra help with my existing support provider so I rang Jess and explained the situation to her. Within days Jess had managed to find a support service who were able to provide extra support for 8 weeks while I was in recovery.”

“Now I’m back at work and our lives are back on track but we wouldn’t have been able to make it without Jessie’s help. She has gone out of her way for us.”

“Now I’m back at work and our lives are back on track but we wouldn’t have been able to make it without Jessie’s [our LAC’s] help. She has gone out of her way for us.”

Stewart

Husband of NDIS Participant Bronwyn

Bronwyn’s NDIS supports have helped her:

  • Maintain her love of reading
  • Go on excursions
  • Reduce her husband Stewart’s burden of care

Social Futures is a National Disability Insurance Scheme Partner in the Community.
Our Local Area Coordination services connect participants to the NDIS in regional New South Wales.

To contact your nearest LAC call 1800 522 679

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