'I have more confidence in myself': Funding of Parkinson's therapy 'game-changer' urged

22 August 2020

Advocates of a new intensive speech therapy program say it could be a game-changer for Parkinson’s patients in regional Australia, but that more public funding is needed.

More than 100,000 people are living with Parkinson’s disease in Australia, and the majority are likely to experience speech and swallowing difficulties.

Joan Norrie has been battling Parkinson’s disease for more than 20 years. The symptoms first presented when she was 42 and a busy mum juggling family and work.

She is now 65, has a complex medication regime, and says saving her voice has been critical.

She opted for deep brain stimulation surgery six years ago, and said the difference in her mobility at least was immediate.

However, she said, she would often back out of conversations because she felt she could not be heard without yelling.

“People would ask me to repeat myself, and you get sick of that after a while,” Ms Norrie said

Joan and her husband Garry stand together and support worker Karren beside him in her home front garden Joan and her husband Garry stand together and support worker Karren beside him in her home front garden
In late January 2020 Karen accompanied Joan and her husband Garry to hear more about an innovative new therapy for preserving voice in Parkinson’s Disease(ABC Port Macquarie: Wiriya Sati)

Group therapy ‘a game-changer’

Surgery, while useful in improving motor function, providing extra mobility and independence, can also often leave the patient with speech and swallowing issues, according to speech therapist Colleen Kerr.

That’s where ongoing speech therapy helped, she said, adding however that finding funding for such therapy — particularly in regional Australia — had been difficult.

The National Disability Insurance Scheme (NDIS) had made funding available for many of the early onset patients to receive speech therapy, Ms Kerr said, but she added more could be done.

“Medicare’s Chronic Care schemes for people with chronic needs does a little but not a lot in this space, and I think it is time for an overhaul of that funding,” she said.

Ms Kerr said a group therapy program from the United States, the Parkinson’s Voice Project, had already success in metropolitan areas and she was now rolling it out into regional areas using telehealth.

She said while some treatments had been around for 20 years, the group format, providing ongoing vocal practice, accountability, support, and encouragement was a “game-changer”.

The program takes people through some intensive choir-like warm-ups, cognitive exercises, encouraging patients to use their facial expression and speak with intent.

“It’s really important to have therapy approaches that address moving those muscles in an intensive way,” she added.

Spoeech an ‘active cognitive event’

Dr Lindsey Collins-Praino, Associate Professor of Medical Science at Adelaide University, said different speech therapy programs focused on different things.

She said the Lee Silverman Voice Treatment, for instance, was based more around sensory and perceptual approach, raising the intensity of voice, while the Parkinson’s Voice Project had a cognitive focus.

“It’s all about intention of speech, helping people to not see speech as automatic but an active cognitive event,” Dr Collins-Praino said.

She said it could be beneficial to take a multifold approach because about 80 per cent of people with Parkinson’s experienced cognitive impairments.

Professional portrait of a woman standing in the street in suit jacket and tie-dyed green silk scarf Professional portrait of a woman standing in the street in suit jacket and tie-dyed green silk scarf
Speech Pathologist Colleen Kerr would like to see Australia follow the USA with funding the speech therapy program with philanthropy(Supplied: Jason McCormack, Law Society NSW)

Estimates are 80 to 90 per cent of people with Parkinson’s experience speech impairments but only between 3 and 4 per cent of patients sought treatment to address the issue, Dr Lindsey Collins-Praino said.

“Your voice is a muscle just like the muscles of your body and you need to also work that as well,” Dr Collins-Praino said.

“To just participate in the program and expect it to be a one-stop fix is probably not realistic — it will certainly have benefits in the short term but… it will likely involve a lasting commitment to ongoing exercises.”

She said there were preliminary studies suggesting that as the disease got worse it became more difficult for speech therapy to have benefits.

Woman faces computer screen where there are participants in a group chat.Woman faces computer screen where there are participants in a group chat.
Tele-health has proved to be a viable way to bring the group speech program to regional areas.(Supplied: Colleen Kerr)

“The more support you can put in place early to help fund programs that can lead to delay or prevent the onset of decline, the less money has to be spent later in addressing all the negative consequences that come once that decline has happened,” she added.

The Medicare Benefits Schedule for chronic disease management supports access to up to five subsidised allied health services per year.

This includes services provided by speech pathologists for people with chronic or terminal medical conditions such as Parkinson’s Disease, according to the Department of Health.

Ms Kerr said it wasn’t enough, as people needed eight to 12 individual sessions, and ongoing group therapy, to make a real difference.

Two women in their 60s looking up at a tree in the garden smiling Two women in their 60s looking up at a tree in the garden smiling
Joan and her support worker Karren will not stop at fires, floods or a global pandemic in their battle against Parkinson’s disease.(ABC Port Macquarie: Wiriya Sati)

Joan says her family and friends hear and see the difference in her voice after therapy.

“I have more confidence in myself, I’m not as shy, I have jokes with people which I never did before,” said Ms Norrie.

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