More than one in two people living with Parkinson’s feel socially isolated

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Victoria Awareness and Attitudes Report – Embargoed to Tuesday 11 April 2017

200th Anniversary of World Parkinson’s Day – Tuesday 11 April, 2017

 In conjunction with the 200th anniversary of Parkinson’s being recognised as a condition this World Parkinson’s Day, Parkinson’s Victoria has released their recently commissioned Awareness and Attitudes report and it sheds new light on the issues of Victorians living with Parkinson’s.

The main objectives of the research were to illustrate any gaps that exist in regards to the knowledge of Parkinson’s and to measure the extent of social isolation felt by those living with Parkinson’s.

The research found that the majority of those with Parkinson’s claim to feel socially isolated and alone:

  • 1 in 2 (55%) of people living with Parkinson’s say they often feel socially isolated as a result of having Parkinson’s
  • 8 in 10 people who have Parkinson’s say they have lost confidence as a result of having Parkinson’s
  • Among those who had a job before being diagnosed with Parkinson’s, the vast majority (84%) claim that since being diagnosed they have had to either to reduce their work hours to manage their symptoms or give up their work entirely
  • Most notably, six in ten (58%) had to give up their work

It is not uncommon for those with Parkinson’s to see their friends less than in the past, spend less time on their hobbies, adjust their diet, and choose to do things like travel more in the short term, however only around 1 in 10 Victorians from the general population indicate with a high degree of confidence that they are aware of these life impacts.

Ester Gardner lives with Parkinson’s.  She was diagnosed with Parkinson’s in 2014, aged 47.  In 2016 Ester had Deep Brain Stimulation (DBS) surgery to treat the symptoms of Parkinson’s and improve her quality of life.

Ester is one of the people living with Parkinson’s who feels socially isolated as a result of her diagnosis.

Ester suffers from anxiety finding that having Parkinson’s means she the words she wants to say are hard to find and don’t come out as she imagines they should.

Going out with friends and talking in a group is difficult and as a result she avoids group social activities as much as she can because what should be a pleasurable experience leads to anxiety and a fear that she will not be understood.

Ester stopped working because she believed she couldn’t talk professionally and it became too difficult to keep going.

Sometimes, she even finds it hard to talk to her husband.

Ester is married with three daughters aged 11, 21 and 23 and is happy to speak about living with Parkinson’s.

The research also found that whilst almost everyone in the community (95%) has heard of Parkinson’s, and one in four people (25%) claim to know someone with Parkinson’s, the depth of that knowledge and understanding is somewhat questionable:

  • 54% of the general population think Parkinson’s is a terminal condition
  • 72% of general population didn’t know that 1 in 5 people are diagnosed in their working age

And knowledge of the symptoms of Parkinson’s is much lower with 1 in every 2 Victorians believing all people living with Parkinson’s experience body tremors/shaking, when in fact this is not the case.

Fatigue is the main symptom of Parkinson’s, however only 4 in 10 Victorians know this (when prompted), and when asked spontaneously what the symptoms of Parkinson’s are only 1% cite fatigue.

With one in 350 Australian’s living with Parkinson’s (more than 27,000 Victorians and over 80,000 Australia wide) and a further 30 people being diagnosed each day, there is an overwhelmingly call to better understand Parkinson’s and those who live with it.

On World Parkinson’s Day, Tuesday 11th April 2017, calls on people to  hashtag their support and #UniteForParkinsons to raise unprecedented awareness of the condition and further the search for a cure.

All funds raised will help to continue ground breaking research into diagnosis, improved treatment and a cure for Parkinson’s.

This year Parkinson’s Victoria has committed to raising $250,000 with community support to donate to research into Parkinson’s.  This amount will be matched by research organisations so that a total of $500,000 can be invested in the search for a cure.

The report is available on request.

More information – www.uniteforparkinsons.org.au and www.parkinsonsvic.org.au

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