The ‘first step’ after diagnosis

Education and support is now available to newly diagnosed Parkinson’s Disease patients, their families, carers and aged care staff.

By Yasmin Noone

New and recently diagnosed Parkinson’s Disease (PD) patients, their families, carers and even aged care staff who look after them, will now be able to access a free information seminar and have the degenerative illness explained.

The recently launched First Steps program, run by Parkinson’s NSW and the Brain and Mind Research Institute (BMRI), will help PD patients understand what has, what is and what will happen to their body.

Neurologist at the University of Sydney’s BMRI and Mind Research Institute, Dr Simon Lewis, said that the program- a state first- will also enable PD patients to deal with the shock of diagnosis and learn how to cope with the disease.

“It’s about getting those people who are just shell shocked with the diagnosis,” Dr Lewis said. 

“They’ve just had life changing news, they have 101 questions and they don’t realise what they have. Two weeks later, it hits them.”

The seminar will also explain some of the early warning signs of PD, such as mood change, loss of smell, constipation and sleep disorders.

“The most dramatic of its symptoms, however is known as Rapid Eye Movement Sleep Behaviour Disorder (RBD). Parkinson patients have been known to start acting out in their dreams, often punching or kicking the person sharing their bed…during one of the phases of sleep – Rapid Eye Movement (REM).

“The way the brain is wired you are not allowed to move during REM. There’s a dead man’s break between the connection of dreaming and moving your arms and legs.

“[If you are at risk of developing PD], that dead man’s break breaks down.

“For some Parkinson patients it comes as a revelation and relief, not to mention  their spouses, that the condition may be responsible for things that go ‘bump’ ‘kick’ in the night.

“…What you see [in the seminar] is this look of realisation on the people’s faces- maybe because the husband has punched [his wife] in the middle of the night. Of course the husband may not know as [she finds it] too embarrassing to tell him.

“And now here they are five years down the line. It’s an amazing thing as they may have been hiding this fact and have been feeling guilty about it.

“Through the seminar, we can say, ‘Hey this is part of your disease and understanding the symptoms is part of getting your head around your own condition’.”

Dr Lewis explained that PD patients, families and aged care staff who attend the seminars will also receive information about treatment (including medication which could switch off violent night-time behaviours) and support.

The next seminar will be held in Sydney on Monday June 20th at 1.30pm at the BMRI and will feature talks from local Parkinson’s experts. However, Dr Lewis said that his team aim to run the First Steps program in rural settings throughout NSW, and hopes that it gets picked up and offered throughout the whole country.

Dr Lewis said that BMRI also aims to conduct specific research into predicting the development of PD in people with RBD.

“We believe the disease spreads slowly through the brain and non-physical symptoms can often predate the disease by many years, potentially offering an early way of recognising the condition.”

Problems with thinking and memory are also common in Parkinson’s diseases with patients being six times more likely to be diagnosed with dementia.

BMRI researchers are therefore also investigating the causes of PD and are trialling memory training.

For more information on upcoming First Steps seminars, call Parkinson’s NSW InfoLine on 1800 644 189. 

Tags: bmri, dementia-aged-care, dr-simon-lewis, first-steps, parkinsons-disease, parkinsons-nsw,

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