Rebuilding Lives, Empowering People and Preventing Spinal Cord Injuries

As you might know, our SEAT program is turning 25! Please share your memories of SEAT! Whether it’s a few words or a photo, we’d love to hear from you!

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Spinal Injuries Association member Bernadette Nolan, her partner Craig and their gorgeous baby boy Jasper will feature in a Power of Good story on Channel 10 show The Project this Friday, 23 December.

Bernie, who has paraplegia, will share how much joy Jasper has bought to the couple’s life and what their plans are for the seven-month-old’s first festive season. Read more about the lovely Townsville family.

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The Parliamentary Secretary for Disabilities and Carers, Senator Jan McLucas today (6 December) met with representatives from the disability sector at the National Disability Services CEO meeting in Canberra to discuss progress on the Government’s national disability reform agenda.

“This year in particular has been a watershed year for disability policy reform,” Senator McLucas said.

“It was in August this year that our government received and released the Productivity Commission’s much anticipated report into disability care and support.

“We know that the current system of disability services in Australia is not delivering the kind of support Australians with a disability and their carers need, which is why we have acted as quickly as possible.”

Read the full media release.

Issued 6 December 2011.

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The Christmas tree and decorations are up, the plans for the big day have been made, and for Townsville’s Bernadette Nolan and Craig Phillipson, they’re just like any first-time parents excited about their baby’s first festive season.

With just one small difference.

The pair had thought they would quite possibly never have children as Bernadette – Bernie – has paraplegia and uses a wheelchair.

Now 36, Bernie was just 18 when she had a cancerous tumor growing on her spinal cord that had to be removed to save her life. However, the operation meant she would be paralysed from the point where the tumor was removed.

“For years I had resigned myself to believing that my body may not be up to conceiving after all the cancer treatment I had, as well as the fact that I was 35-years-old,” Bernie said.

“Our mindset was ‘if it happens, it happens’ but if it doesn’t, we were more than happy with our lives as they were.”

Bernie conceived naturally within a couple of months of trying. She and Craig were thrilled but also cautious about how Bernie would cope with the pregnancy.

“I was nervous about how I was going to cope with being pregnant,” Bernie said.

“I didn’t know how I would manage with the extra weight. I had no idea how long I could maintain my independence before the weight gain became too restrictive.”

The pregnancy was uncomfortable, with the combination of morning sickness, weight gain and other side effects from her spinal cord injury intensifying, leaving her less mobile.

“I just had to keep reminding myself that it wasn’t going to last forever,” she said.

While Bernie had been advised by her obstetrician that she ‘would not miss going into labour’, she did, going into hospital for a check-up and discovering she was in labour.

She had aimed for a natural birth but complications meant Bernie’s baby was delivered via Caesarean section, with Bernie having to be put under a general anaesthetic as her previous spinal surgery ruled out an epidural.

 Bernie and Jasper in front of Jasper’s first Christmas tree.

Baby Jasper, born in May, is ‘a treasure’ said his mum and she is delighting in motherhood.

“We have enjoyed every minute with him. I love the simple things like teaching him how to hold his little bear and seeing his face light up when I read him his favourite book.

“His smile melts my heart!”

Bernie said having paraplegia actually prepared her well for adapting to parenthood.

“I think being in a wheelchair has been an advantage in adapting to parenthood, as I’m used to adjusting to difficult situations on a daily basis and so having a baby is just the same,” she said.

Bernie soothed some of her pre-baby nerves by practising carrying and lifting a doll (‘Lucy’) before Jasper arrived and has now set up what she describes as a ‘simple’ nursery which makes caring for her son easier.

She also sourced an innovative new cot and baby car seat that were accessible to her and when she’s out and about she carries Jasper in a regular baby pouch on her lap, where he happily falls asleep.

With Jasper now almost seven-months-old and increasingly inquisitive, Bernie and Craig said they were looking forward to a special first Christmas with their little boy.

“We are very excited about it and can’t wait to give him his presents under the tree, although at this stage he’ll probably be more interested in the wrapping paper,” Bernie said.

Jasper has just experienced his first meeting with Santa and surprisingly, was cheerful about it!

“He was one of a few kids who didn’t cry; he grabbed his present quite happily,” Bernie said.

Spinal Injuries Association Peer Mentor Maria Hutton, who also has paraplegia, was a great source of information to Bernie, as she had three daughters following her spinal cord injury. The three are now aged in their 20s.

“Having someone to talk to who has been there before was invaluable. What works for one person may not work for others but it was great to get ideas,” Bernie said.

“I was inspired by Maria and another local woman who has quadriplegia, Richelle Carta, and able to adopt some of their parental techniques to tend to my own baby.”

Maria said, as a Peer Mentor, her role was to show people who have a spinal cord injury that life goes on and could still be enjoyed with a permanent injury.

“Being a parent is an option that all people should be able to have,” she said.

“Certainly using a wheelchair has its ongoing challenges, but it also doesn’t define you as a person.

“There’s a whole world out there waiting to be embraced – you just need to be a little more creative to overcome some of those obstacles in your way.”

Bernie demonstrates her lateral thinking when it comes to parenting in a series of short YouTube videos where she demonstrates, among other things, how she picks Jasper up off the floor and how she gets him in and out of her car, and his cot.

The following videos can be viewed:

Jasper’s first bath at home

Bernie puts Jasper in the car

Jasper’s Power Cot

Picking Jasper up from the floor 

Reading to Jasper 

Settling Jasper

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Queensland University of Technology (QUT) researchers have developed a promising new treatment for spinal cord injury in animals, which could eventually prevent paralysis in thousands of people worldwide every year. Read more about the research.

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A life-changing horse riding accident three years ago that led to Kathy Gurney sustaining quadriplegia hasn’t diminished her love of horses.

In fact, ahead of Spinal Injuries Awareness Week (6-12 November), the Banana resident said she loves the animals even more and still feeds her horses every day on the property she shares with her husband Len, despite facing the ongoing challenges of the permanent injury and trying to find long-term personal care support.

Describing the split second that changed her entire life demonstrates that a simple action can have irreversible consequences.

“Len and I were over in Broome and helping out on a cattle station that we were visiting for a day,” Kathy said.

“I was on a horse that was walking slowly behind the cattle when suddenly it shied away violently.

“I lost my balance and was half hanging off the horse, trying to get back up. The horse’s natural reaction of course was to get this thing off that was hanging off it and I fell.”

While Kathy had a helmet on, the force of her head hitting the ground led to her spinal cord being damaged at the C5/C6 level (there are seven vertebrae in the neck – C1 to C7).

“I tried to reach for my two-way radio and couldn’t – I knew straight away that I was paralysed,” she said.

It would be another 16 hours by the time Kathy arrived in Perth after being transported by ambulance and then by the Royal Flying Doctor Service. She was conscious the entire time.

After seven weeks, Kathy was flown to Brisbane’s Princess Alexandra Hospital’s Spinal Injuries Unit – the only Spinal Injuries Unit in Queensland – where she spent the next seven months rehabilitating.

“It was the best feeling in the world to come home to Banana again,” Kathy said.

Her affinity with the bush is obvious when she speaks about her love of the land and her animals.

It is this love that keeps her and Len living on their property, but which is becoming increasingly difficult as Kathy requires Personal Support Workers (PSWs) to assist her each day. Finding ongoing support staff is an enormous challenge.

“Given the physical challenges of having quadriplegia and using a wheelchair, I require support workers from 7am-11am each morning and 6pm-8.30pm each evening, as well as several ad hoc hours during the week for doctors’ appointments,” Kathy said.

“Ideally I require three support workers, as well as several standby PSWs, because without them I’m unable to live as independently as I would like.”

With her husband working full-time, Kathy said it was important for her to be able to get out and about in the community, with the assistance of her support workers and not have to stay at home.

“Having quadriplegia hasn’t stopped me from accessing my property – I get out in my all-terrain power wheelchair and feed the animals each day – I love it,” she said.

Spinal Injuries Association Chief Executive Officer Bruce Milligan said the organisation had 500 PSWs throughout Queensland, but it was often difficult to fill roles in regional areas.

“Particularly in Kathy’s case, she lives close to the Central Queensland mining sector, where people tend to be attracted more to larger salaries.

“Being a Personal Support Worker is an immensely rewarding job – some clients describe their support workers as being as integral to their lifestyle as their wheelchair.

“We always have plenty of opportunities available to join our Association as a PSW, and best of all, prior experience is not essential as fully paid training is provided.

“Reliability, good communication skills and your own phone and transport are essential to this position.

“Duties include personal support, meal preparation, domestic and medication assistance, passive exercise and community access.”

With her friendly, easygoing nature, Kathy said her PSWs allowed her to be at home with her husband and have her children and grandchildren close by.

“For the right person, the role of a Personal Support Worker is incredibly satisfying and allows people to work in the mornings or early evenings – it’s a great job that offers fantastic flexibility to fit in with your lifestyle,” she said.

“I’m very grateful to my support workers and make sure we have a good working relationship.”

Visit this page for more information about becoming a Personal Support Worker for Kathy or other PSW opportunities available at the Association, please phone the Association’s Recruitment team on 07 3391 2044 or email psprecruit@spinal.com.au.

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The 2012 Polio Health and Wellness Retreat will be held at Marcoola on the Sunshine Coast from 26-29 April. The expression of interest form can be downloaded here.

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The countdown is on…there are just over seven weeks until our fourth annual Gala Fundraising Dinner! This year’s Gala is on Saturday, 5 November at the Brisbane Convention & Exhibition Centre.

Tickets go on sale in mid-September.

If you would like to be notified via email when tickets go on sale, please contact us on galadinner@spinal.com.au or 07 3391 2044 – we’d love to see you there!

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