Understanding Parkinson’s Disease

April is Parkinson’s Awareness Month, with 11 April officially recognised as World Parkinson’s Day. It’s a time of international reflection and recognition for people living with Parkinson’s.

This year, Fight Parkinson’s wants to lift the lid to improve understanding of Parkinson’s disease with a new campaign to be officially launched on World Parkinson’s Day, Tuesday 11 April.

This campaign aims to increase awareness and understanding for the more than 219,000 Australians (57,000 Victorians) living with Parkinson’s, the world’s fastest growing neurological disease.

“We know that when the Parkinson’s communiy is united, they empower each other to make a difference,” said Fight Parkinson’s CEO Emma Collin.

“We want to ensure greater understanding of the deep impact of Parkinson’s that goes beyond shaking so that the disease is taken seriously by decision makers, and to help reduce the stigma associated with some of the symptoms.”

Fight Parkinson’s provides specialist advice and support for people living with Parkinson’s, their families, carers and healthcare professionals through tailored health education programs and seminars and a free and confidential health information service.

“We know from speaking to many people in our community that frustration often comes from lack of understanding about the condition,” Ms Collin said.

“Motor – or movement – symptoms are the better known but as those living with Parkinson’s know all too well, non-motor symptoms can be just as concerning.They can include a range of issues affecting mental health, cognitive and bodily function, as well as pain and anxiety.”

The following statements were provided to Fight Parkinson’s by people living with Parkinson’s.

Parkinson’s:

• is not just an older person’s disease, but can also affect younger people  
• is not always a person who has the shakes
• drains my energy and affects everything I do
• symptoms are not always visible
• is not always easy to explain
• can affect the whole family
• is not a death sentence, but can make life more difficult
• limited my career opportunities and reduced my workload
• has reduced my EQ (emotional intelligence) and confidence
• has made mixing in crowded rooms stressful.

Parkinson’s also: 

• benefits from exercise and a positive attitude
• has strengthened my resilience
• has allowed me to see the best in people around me, including strangers
• challenges me every day to be a kinder and more accepting person than I was yesterday
• does not make you a sufferer unless you choose to let it make you a victim
• doesn’t stop you from doing what you have always done, you just have to do things differently.
• does not define you! It affects everyone differently and is life changing but the Parkinson’s community is full of loving caring people.

Ms Collin said one of the difficulties of Parkinson’s was that symptoms varied between individuals and there was no set pathway for when and how fast they will progress.

“A Parkinson’s diagnosis is life changing, but being resilient, adapting and arming yourself with knowledge is key to living life to the fullest. As is not facing the journey alone,” she said.

Parkinson’s Awareness Month Events

A highlight of World Parkinson’s Month is a special presentation by neurologist Dr Richard Blazé who will help prepare you to get the most out of your neurologist appointments. This online presentation will be held from 5.30pm – 6.30pm on Wednesday 26 April. Click to learn more 

For those living with Young Onset Parkinson’s, a Positive Life conversation from 5.30pm – 6.30pm on Wednesday 12 April will cover all things NDIS, from how the NDIS can support people living with Parkinson’s and Atypical Parkinson’s, through to how to apply and how to appeal decisions. Click to learn more.

Young Onset Parkinson’s will also be the focus of the April Recently Diagnosed Seminar. Click to learn more.

April’s Community Seminar will be held in Castlemaine, Victoria on Wednesday 19 April from 11.30am. This is a great opportunity for people living in Victoria’s Goldfield’s region to join Fight Parkinson’s health team members and guest speakers Prof. David Finkelstein and Drew James, who will talk about his lived experience of Parkinson’s. Click to learn more.

This article was originally published by Fight Parkinson’s.