New move to fast track treatment for Parkinson’s and dementia with Lewy bodies

A new initiative is set to fast track treatment for two incurable conditions as one patient shares the inspiring message that “life doesn’t end” with diagnosis.

A group of non-profit organisations have banded together in a global approach to fast track Parkinson’s and dementia treatment.

Parkinson’s, a degenerative neurological condition that impacts memory, thinking and movement, is one of the fastest growing neurological conditions in the world.

People with Parkinson’s are likely to also develop dementia, a brain condition that impacts memory, speech, thinking and behaviour.

Dementia is the second leading cause of death in Australia.

Will Boag, 77, from Sydney, was diagnosed with Parkinson’s 14 years ago.

Despite the diagnosis usually resulting in a lack of mobility, Mr Boag has dedicated his time to walking. He and his wife Corrie have embarked on several 800km walks across the globe since his diagnosis, with the couple still walking an average of 22km per day on big walking trips,

He has also raised more than $35,000 for not-for-profit organisation Shake It Up Australia Foundation, which funds Parkinson’s research in partnership with The Michael J. Fox Foundation.

“It’s been a mixed journey – there’s been pain, there’s been things that limit my speed,” Mr Boag said.

“I get dressed very slowly, things take up a bit of time, but that’s OK – I got used to that, and it’s not really a hold up but something to deal with.

“I’ve learned that I can deal with things I never thought I could deal with.”

Will Boag (right) was diagnosed with Parkinson’s 14 years ago. Picture: Supplied.

Mr Boag and his wife Corrie have walked the Camino trail in five different countries since his diagnosis.

Mr Boag hopes to inspire people to realise that “life doesn’t end with a Parkinson’s diagnosis”.

“Life can be quite fruitful,” he said.

There is no cure for Parkinson’s or dementia; however, a group of non-profit organisations have come together to form a global coalition dedicated to fast tracking the development of new treatments to hopefully stop, slow or prevent Parkinson’s and dementia with Lewy bodies, a type of progressive dementia that leads to a decline in thinking, reasoning and independent function.

The coalition, announced in a paper published in the Journal of Parkinson’s disease on Thursday, is set to prioritise patients’ voices and bring together leading experts from around the world to tackle the conditions.

Mr Boag has raised more than $35,000 for Shake It Up Australia and emphasised that ‘life doesn’t end with a Parkinson’s diagnosis’.

Shake It Up founder Clyde Campbell said the coalition would be “groundbreaking” in assessing the progression of Parkinson’s.

“Dementia is found in a percentage of Parkinson’s patients, so how we’re able to look at it as a combined disease (is important),” he said.

“The key part is ‘How do we learn as an international conglomerate of organisations? How do we work together and develop a way to monitor the diseases?’”

The coalition aims to address challenges in developing new treatments, including the need for more efficient clinical trial processes.

It will also aim to establish a standardised biological staging system to monitor how the disease progresses and potentially allow for early intervention of Parkinson’s.

“At the moment we can do it quite well with spinal tap CSF fluid, but what we want to get back to is being able to use a blood test to diagnose and monitor the diseases,” Mr Campbell said.

Shake It Up founder Clyde Campbell said the coalition would be ‘groundbreaking’ in assessing the progression of Parkinson’s. Picture: Supplied

Mr Campbell said it was important to look at Parkinson’s and dementia as a combined disease. Picture: Supplied.

A proposed biological staging system for neuronal alpha-synuclein disease has already been brought forward by the coalition, which is set to bring about more accurate comparisons of research findings as well as fast track the development of drugs to treat the two conditions.

Shake It Up chief executive officer Vicki Miller said this new step towards collaboration could “accelerate the path to better treatments”.

“No single individual, entity or organisation can solve the challenges of getting improved treatments to patients,” she said.

“By collaborating with fellow global leaders, we are able to bring Australia’s voice to this critical work and accelerate the path to better treatments for people living with Parkinson’s disease and dementia with Lewy bodies.”

Mr Boag said the coalition was a good idea – “if you want to change or invest in something”, the more organisations working together the better, as long as “everyone pulls their weight” and “they all work together”.

The Alzheimer’s Association, American Parkinson Disease Association, Cure Parkinson’s New Zealand, CurePSP, Mission MSA, Parkinson’s Europe and the Parkinson’s Foundation have all joined the coalition.

Individuals with Parkinson’s suffered some of the highest out-of-pocket costs, with patients tipped to spend more than $190,000, The Australian reported.

Dementia patients also reported high costs of $54,745 following the first year of diagnosis, with a further $16,990 each year after.

Originally published as New move to fast track treatment for Parkinson’s and dementia with Lewy bodies