Gerald Ganglbauer reveals challenges of early-onset Parkinson’s and calls for Parkinsong support

Australian-Austrian writer and president of the Parkinsonline (PON), Gerald Ganglbauer talks to the EPDA about early-onset Parkinson’s, the importance of honesty, and the Parkinsong Duets project.“

Society has not accepted Parkinson’s as a condition for people under 65. Most people might think people are drunk, or on drugs, or otherwise mentally challenged.“

When were you diagnosed with Parkinson’s, and how did your diagnosis come about? 

“I was diagnosed in 2006, aged 48 – I thought I was just getting old when my friends noticed first symptoms. However, I made a list and told my doctor (GP) about it. As with most people with early-onset Parkinson’s, I denied my diagnosis for a year.“

What challenges do you feel that younger people with Parkinson’s in particular face, compared with people who are diagnosed at an older age? 

 “Most younger people with Parkinson’s (PwPs) are still in a situation where they need income to make a living. However, they lose motivation when they are self-employed, or sometimes lose their job. They also have a more active social and sex life with one or changing partners.

“But society has not accepted Parkinson’s as a condition for people under 65.  Most people might think people are drunk, or on drugs, or otherwise mentally challenged. Lately many support groups for younger people with Parkinson’s have been founded, but younger PwPs won’t join them as they do not want to disclose their condition for as long as they possibly can hide it.”

In 2016, you set up Parkinsong Duets, a non-profit organisation uniting people with Parkinson’s with artists and producers, with the aim of recording a CD to raise awareness of the condition – please tell us more?

“I had the idea of artists doing something together with PwPs, to show their fans that we’re just as human as they are. I thought that by building a cool website outlining the project it would grow quickly, and that thousands of people around the world would join in a big way like when Bob Geldof called for help for Band Aid. Disappointingly, it has not yet received the level support I hoped for.

I thought that by building a cool website outlining the project it would grow quickly, and that thousands of people around the world would join in a big way.“

“So far, three songs are studio-ready and another three have been promised, but Parkinsong Duets should have 10-15 tracks like any other music CD. The idea is great but the project cannot be done by one man alone. The only way forward would be with support from the Parkinson’s community and the music industry.”

You have had a very successful career in print and magazine publishing. How did Parkinson’s affect your career, and how did you adapt? 

“My career as a publisher was cut short when I received my diagnosis. I have since become a writer myself, having published four books so far. I have always worked in creative industries, but since my diagnosis I receive a pension. This took care of my existential fears and I have found the time to channel my talents as a Parkinson’s ambassador and advocate. So, some good has come of having this shitty disease.

“I run Gangway, a cultural magazine on books, literature and music, which I also converted into a blog. I also edit Gangan Literary Magazine, and we are currently publishing the 50th issue. None of them are specifically Parkinson-related but a recent issue of Gangan Literary Magazine deals with chronic diseases and Parkinson’s.

“I have also a Parkinson’s blog, PARKINSONLESEN, which is embedded into our association’s website. In addition, I believe writing a beautiful biography about your life is the best way not to forget (dementia is part of the Parkinson’s package). So I published Korrespondenzen Auf Papier earlier this year.”

What advice would you offer to anyone with Parkinson’s who is thinking about becoming more creative? 

“Go for it. Now is the time. There is always the garbage bin if you think it is crap [not very good].”

You submitted a video about your experience of Parkinson’s for the World Parkinson’s Day #UniteForParkinsons campaign. How did you hear about the campaign and why did you decide to make a video? 

“As president of the PON, I was involved from the campaign’s launch year in 2017.

“People only face the outside world when they’re ‘on’. I wanted to record my face in this video when I’m ‘off’, limp like a lettuce, with hardly any expression in my face or power and volume in my voice. After doing three takes with freezing in the middle of sentences, I decided that this would be a perfect way to show another less well-known, but very annoying symptom, and so I put the clips together. In a way, the video demonstrates what Parkinson’s does to an eloquently spoken, wordy public speaker.”

In your video, you describe Parkinson’s as a “shitty disease”. As a person with Parkinson’s, how important do you feel it is to express negative thoughts and feelings? 

 “The best way of handling any situation is to be honest about it. There are visible symptoms like a tremor which not everyone has, but there are far more annoying symptoms that people don’t see when you’re ‘off’.

“Even if the shit has hit the fan, you learn to cope with it. Use any swear words you like to describe to your friends what goes on. When you let go, you feel a little better about it. It’s not brave to hide it. It’s stupid. You may have a lot less time left than other people your age, so enjoy every day as if it were your last.”

You also mention the friends you have made through support groups – how important are support groups for people with Parkinson’s? 

“They made all the difference. Had I been the only sick person in the entire world, suicide would have been a possibility. But sharing the burden, exchanging information, hanging out as a group – this has been a tremendous help.”

Are there any other ways you plan to be involved in World Parkinson’s Day?

“On the day itself, PON will be having our annual general meeting, with the bi-annual board election as well as public talks and an action day. No one has put their hands up to do my job so I expect I will be re-elected as president for another term.”

Are you sharing your story as part of the #uniteforparkinsons campaign? What are your plans for World Parkinson’s Day? Email info@epda.eu.com and tell us your stories.

The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.