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“Life-changing” support: How Feros helps Jacob balance work and parenting

Jacob Shaw doesn’t let his health challenges stand in the way of his go-getter approach to life and his natural ability to care for others.

A single full-time father raising his seven-year-old daughter Thea, Jacob is open and honest about the health battles he faces each day.

Jacob lives with Charcot-Marie-Tooth Disease (CMT) & Psoriatic Arthritis – however, it hasn’t stopped him reaching his goals both in and out of the workplace.

Recently, Jacob accepted a full-time position as a theatre Wardsperson at the Canberra Hospital (TCH), providing administrative, clerical and support services.

A challenging diagnosis

Jacob is a former motorbike mechanic from Cheltenham, Gloucestershire in the United Kingdom. However, he couldn’t continue working as a mechanic due to the symptoms of Charcot-Marie-Tooth disease.

The disease causes damage to peripheral nerves – the nerves that transmit information from the brain and spinal cord to and from the rest of the body.

While there’s no treatments available, Jacob takes nerve blockers daily to help manage the pain he experiences.

Health conditions and chronic pain, Jacob says, are hard when other people don’t understand what you’re going through.

“Things take longer and things are harder – even getting out of bed is harder. And mental health can be a struggle because of the chronic pain.”

“I don’t know how it feels to be normal – I wish I could feel normal and have no pain.”

Jacob’s roles and responsibilities

Jacob’s caring nature has been a motivator in guiding him to work in a hospital – despite mentioning that, at times, he’s “not as strong as I want to be”.

“My chest hurts constantly because of the arthritis and my left ankle is collapsed so it aches and hurts all the time. The pain is a 10-out-of-10 kind of pain.

“If I am on my feet too much – and I am – the pain aggravates my body and causes me to feel depressed and I am fatigued daily.”

However, he stays motivated through his role, which involves helping surgeons and nursing staff in patient care. This may involve applying CPR, moving and repositioning patients, and working to set up equipment and preparing rooms for the theatre cases.

During the course of his work, he says, he loves meeting people and hearing their stories.

Jacob remembers working with one patient who loved motorbikes. The patient was feeling anxious before he was to have a procedure involving needles.

“I was chatting to this one gentleman and he normally passes out with needles. But I was talking to him about motorbikes the whole time while holding his shoulder to support him and he totally forgot about what was happening – he thanked me after for distracting him.”

He is often told by patients, “Thank you for just listening to me.”

Key supports for Jacob

It’s not easy being a full-time single parent and working full-time – especially when living with disability. And Jacob knows this better than anyone.

“I push on each day. Sometimes I want to curl up, but I have to keep going for my daughter and for myself,” he says.

“I’m trying to give my daughter the best life she can have. She goes to swimming lessons, girl guides, does scouts and skiing.”

Jacob credits his NDIS plan for the support he needs to help him through life – including support workers who help with cleaning around the house, along with necessary items, such as insoles for his shoes which help alleviate some of the pain from his collapsed ankles.

Jacob’s plan also allows him to go to the gym with his physiologist trainer three times a week to promote strength in his legs.

“At the moment the supports I’m receiving are great, and going to the gym with the exercise physiologists is the best, it’s life changing. They track my progress and to help my mobility get strong.”

Jacob talks to a counsellor once a week, which he says is especially helpful as he doesn’t have family in Australia.

“It’s nice to chat to someone every now and then. They make you realise what’s going on for yourself. It’s good to chat to get some release, as I just want to try and better my life.”

In the future, he hopes to help others living with disability, just as his Feros Care Local Area Coordinators have helped him.

“I’d love to be a Local Area Coordinator too,” Jacob tells us. “I would want to help people find jobs, jobs that they want to do and can do. And then find the support to help them.”

At Feros Care, we’re proud to help people with disability live healthy, fulfilled and connected lives. Click here to find out more about how we support people throughout our LAC office locations.

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