Support Group Leaders Testimonials

Robyn & Sandra, Parkinson's NSW Support Group leaders share their experiences from past World Parkinson's Congress.

Robyn Lindsay – Manly-Mosman Support Group

“Japan was our third congress and the most recent we attended. The first was in Montreal and the second was in Portland.

“Attending the lectures is such a huge learning initiative. There are so many to choose from. Meeting people connected in many ways with Parkinson’s was wonderful as they were from all over the world. You never know who you are going to be sitting with at lunchtime for a chat!

“We also loved the travel and joining some of the day tours that were organised. The volunteers from all countries were always there for help.

“Having the companionship of people from Parkinson’s NSW was great as well and we had a lot of fun. World Parkinson’s Congress is a fun-filled learning experience.”

Sandra Elms – Deputy Leader, Newcastle Support Group

“The World Parkinson’s Congress – usually held every three years – involves specialist clinicians, nurses, therapists, those providing support and activities for Parkinson’s people but most important people who are actually living with Parkinson’s.

“Everything is totally inclusive; you can attend any lecture, discussion, or activity that you wish. You will be able to discuss with renowned professors what you have always wanted to discuss. You have the disease and can openly discuss it and give your thoughts and feelings.

“This Congress offers you a schedule which is diverse, interesting, comprehensive and which can at times be fun and adventurous. There is simply no other forum quite like it.

“As well as all the medical knowledge you can  hear about you have the opportunity to meet people living with Parkinson’s from all over the world. What are the latest developments in the UK? How do they cope with freezing of gait in Norway? What foods are they promoting in Japan? How do they dance in Spain? The opportunities to learn so much and forge friendships with people living with Parkinson’s in other countries are there for you to share.

“You can also enter the competition for posters after you send an abstract of what you might be doing for people with Parkinson’s or a research program. if your abstract is chosen you make a poster outlining your work which is displayed in the Poster Room. There is also the possibility of obtaining a small travel grant if your work is displayed.

“I have attended two Congresses: Portland, USA and Kyoto, Japan. At both I had my abstract Living with PD chosen and posters displayed. I am hoping to be able to go to Barcelona.

“I believe these Congresses are extremely worthwhile – despite the cost – as they provide a truly unique experience and give one hope and encouragement to face this disease.