What to do with € 10,000.00

I raised 10.000.00 Euros, so twenty more people with Young Onset Parkinson’s could attend the congress. Why, asked Eli Pollard in a Zoom meeting, was I doing this?

I thought long of plausible answers. Not so much for listening to presentations of scientists, not much either to collect all the information which was on oﬀer from a global knowledge bank of neurological diseases. If I were a doctor, this would be the place to go, but I was just one of ten Million people with the disease.

So why was I joining the crowd, let alone helping twenty of them getting there? YOPD hit me in 2006 at the age of 48 and I was well aware of the WPC right from its beginning and its history of being held in Scotland and Canada, but it was not until Portland, (2016) that I actually boarded a plane with the help of a travel grant. I had promised Judi Spencer that I would join her choir at the opening ceremony, but the plane landed with substantial delay in Oregon. I just made it to the conference center when the choir left the stage.

I had been living in Australia for twenty-five years and received the diagnosis there. I went to a couple of support group meetings, started my own group in Ultimo, downtown Sydney, with the support of Parkinson’s NSW, where I became a life-long member. But nothing had topped the experience of attending the 4th World Parkinson Congress, to mingle and meet the most inspiring people with Parkinson’s, like the late Tom Isaacs (1968–2017). I recorded his performance of an adopted “Sound of Music” with nasty Parkinson lyrics and produced a full album with duets.

Kyoto was the next chapter, where I presented the Parkinson Duets album with the claim that we could be Rockstars, and we could help to find a cure. I arrived in Japan with a suitcase filled with CDs, but unfortunately the launch of the CD wasn’t announced by the WPC and overlooked by Japanese media, so accidental audience was small so I had to carry most of the CDs back home again. But I never give up. A year later I covered the Parkinson Blues by Stefan Weber (1947–2018), frontman of Viennese punk band “Drahdiwaberl”, which I intended to launch 2022 in Barcelona.

The pandemic changed everything. So far I had raised 10,000.00 for Parkinson research in 2019 and 5,000.00 for the WPC in 2022 and doubled that figure during lockdown to 10,000.00 in 2023. I wanted to bring people like myself together. PwP who had not received funds to travel anywhere previously. I wanted to give something back, I wanted them to be “high” from hope for a cure as I was. Alone in the world carrying the heavy burden is hard, sharing an emotion deep inside of “togetherness” helps coping with the invisible pain.

Not only to raise funds, but to have something meaningful to do that I really enjoyed, like I read from my books at the highly respected Literaturhaus Graz, curated a Jazz Festival in my home village, produced a live album, traveled to Salzburg for a live streamed talk on WPD and added income from the sale of my books and magazines. I have a small disability support pension, which provides enough for a living. That’s the story behind the 10,000.00 Euros gift to our global get-together in Barcelona in a nutcase.

Gerald Ganglbauer is an Austrian–Australian writer and publisher diagnosed with Parkinson's disease at the age of 48 years. Since then he has been an ambassador for Parkinson's support groups. He participated in past WPC Congresses.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®