It all began with a slight stutter

Bike and KidsBob Rushton is an accomplished man. Throughout a career in military intelligence and later in medical and security services, he was exceptionally well-regarded. Renowned as one who handled intense stress with ease and set impossibly high standards, he chose his words carefully and meant what he said. Never the life of the party, but always the first to buy the drinks. Never the centre of attention, but always the one to be counted on.

The man who boldly re-connected with Lisa outside a Canberra restaurant late one evening, however, was more than he seemed.

‘I watched him tenderly stroking his daughter Stephanie’s hair whilst she lay across him. I said to myself, “That’s the father I want for my children”.’

During a peace keeping mission, Bob wrote beautifully crafted letters to Lisa, revealing a philosophical side seen only by those in his close inner circle. Three years later, Amy came along followed by Poppy in 2007.

I always came third for Bob. It was his children first, then his motorbikes and then me,’  Lisa jokes.

Perhaps both Bob and I were in denial.

Even though Lisa and Bob had noticed changes in the way he spoke, it was the elephant in the room.  Bob seemed to be struggling at work, but being an intensely private person, he did not speak to anybody about it.

‘We put it down to stress. Bob had other employers knocking, so we decided he’d take five months off to care for Poppy and then review his employment.’

Rushton-Webb FamilySadly, aged just 47, Bob had worked his last day.

Although his language didn’t improve, Bob was a wonderful family man. He continued to enjoy off-road motorbike riding, support the Wallabies and dote on his daughters.

A fall off his bike during a weekend away with friends gave him a slight headache.  A GP appointment was made, and it was agreed that he would also mention the stutter.

A neurologist soon revealed the heartbreaking diagnosis. Mid-career, with three children (two of whom were under eight) and living overseas, Bob was diagnosed with Primary Progressive Aphasia (PPA) – a form of dementia.

A diagnosis of PPA for a man aged in his 40s was rare.

PPA causes gradual, but relentless loss of the ability to communicate. In contrast to other dementias, capacities such as memory, planning or making decisions are initially spared. However, in time, these abilities also decline and in cases like Bob’s, patients can also show problems similar to Parkinson’s disease.

Like most dementias, PPA gradually takes away everything.

Lisa remembers, ‘At the time I didn’t really connect it with dementia. We knew he could become mute, but felt we could cope with that. After all, I always talked enough for the both of us!’

Some people refer to dementia as ‘the living death’ and today, aged just 53, Bob no longer communicates. He is spoon fed pureed foods, cannot walk, help himself out of a chair, and has little capability to show emotions or connect with his family.

Can you imagine how cruel this illness is?

Poppy's pictureImagine what it is like for Stephanie in her late 20s? She’s losing her dad, and her children won’t know their granddad.

Or Amy, now 14, who says she ‘can’t remember what Daddy was like previously?’

And then there’s Poppy, aged 8? Little girls always need their dad, but for Poppy, she’ll never truly know hers.

When asked if she felt Bob still had the capacity to love his family, Lisa’s response was powerful:

‘I don’t know. I don’t know. Other people say when I’m in the room his eyes follow me.’

Neuroscience Research Australia (NeuRA).

NeuRA’s dementia research, led by Professors Hodges and Olivier Piguet, has three main goals:

  1. A better understanding of the specific clinical features of the different types of dementia
  2. An improved understanding of the progression of each type
  3. More accurate future health predictions.

City 2 Surf - croppedAchieving these will lead to better health outcomes, through earlier interventions and targeted treatment plans.

NeuRA’s vision is to Discover more about diseases of the brain and nervous system, to Conquer them through new and innovative therapies and ultimately find Cures.

If you would like to read more of Bob’s story, or to donate to NeuRA’s dementia research program, please click here.

Fittingly, the final word should belong to Lisa.

‘NeuRA’s research is not going to help us. It’s not about us. It’s about ensuring we know enough about the amazing tool we have, our brain, so that we can help ensure people in the future don’t suffer in the same way’.