For more information on early onset and young onset Parkinson’s please visit the EPDA website.
“The beginning of a wonderful collaboration between countries, organisations and people”
Author: Joe McAweaneyPublished: 18 October 2018
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Young onset Parkinson’s campaigners and politicians and policymakers from across Europe came together last week for ‘This is Parkinson’s: a focus on young onset’ – a series of events held over two days by the European Parkinson’s Disease Association at the European Parliament
The roundtable discussion – ‘This is Parkinson’s: a focus on young onset’ – held in Brussels, Belgium, invited policymakers to hear about the particular challenges faced by younger people who are diagnosed with the condition .
The former Slovenian Prime Minister, MEP Alojz Peterle, Irish MEP Marian Harkin, UK MEP Rory Palmer and Spanish MEP Veronica Lope Fóntagné were among those at the events, which also featured a photography exhibition by Norwegian video journalist Anders M. Leines. British MEP Rory Palmer, who hosted the European Parliament events with the EPDA, said he was pleased they had helped to “increase understanding and awareness” of young onset Parkinson’s.
We caught up with some of the 32 campaigners who lent their voices to the event for their views on the most pressing challenges facing younger people with the condition – and what action they hope their discussion will prompt.
What different challenges do people with young onset Parkinson’s face, compared with those who are diagnosed later in life?
Anders M. Leines, video journalist and Parkinson’s campaigner: “There are huge differences. Younger people tend to have more pressures – such as raising children and the need to work for many more years. What people don’t perhaps realise is that with adaptations to the work place environment – such as time to exercise and free access to a psychiatrist – people can have a good quality of life for many years.”
Mariette Robijn, Parkinson’s blogger: “When you are diagnosed at a younger age, you have to generate income for now as well as the future, as in the future we will have little or no income potential. What’s worse is that due to the impact of the condition, each hour I work today costs me double the energy it used to before Parkinson’s.”
Debbie Shapiro, Parkinson’s blogger: “Balancing family, work, financial obligations – these are often much more common among people with young onset. That’s because they are still building their lives, whereas people who get Parkinson’s at age 70 or 80 are often already settled and have less responsibility.”
Robin Buttery, Parkinson’s campaigner: “Many will be faced with real concerns, as a reduced working life is not only likely but inevitable. Who will look after me at later stages of the disease?”
Ben Stecher, Parkinson’s blogger: “I’d rather focus on the advantages of getting it young. We generally have more energy and more ability to do something about it. As much as Parkinson’s sucks, I’m grateful that it gives me enough time to learn about it and make an impact on our collective journey towards improved therapies and eventually a cure.”
What misconceptions do you think the general public and parliamentary decision makers have about young onset Parkinson’s?
Elisabeth Ildal, Parkinson’s campaigner: “I think that both the public and the parliamentary decision makers have a completely wrong picture of Parkinson’s. I think they believe that Parkinson’s is an old man’s disease where you shake. We need to educate people – a lot of them don’t realise the effect the disease has and that it cannot be cured.”
Ben: “I don’t think the problem is misconceptions as much as no conception. The vast majority have no concept of what Parkinson’s is other than tremor and maybe rigidity.”
Robin: “Parkinson’s is often regarded as a disease that affects the older generation, indeed many are staggered when told people under 60 can have it. Better education is the only way forward if we want to increase awareness of the disease and who it affects.”
Gaynor Edwards, co-founder of Spotlight YOPD: “Unless ‘Joe Public’ has someone close diagnosed with Parkinson’s there is very little understanding generally of the condition – let alone awareness of those diagnosed under 50. It’s often mentioned by the media in the same breath as Alzheimer’s.”
What is the significance of events such as the one held by the EPDA last week?
Anders: “I think it is very significant. We need more finances, and often that will come from governmental or EU support. I know resources are scarce, but everyone deserves access to a strong Parkinson’s society.”
Gary Boyle, Parkinson’s campaigner: “The EPDA’s event in Brussels is the beginning of a wonderful collaboration between countries, organisations and people. It is clear from the discussions we’ve had over the two days together that there are amazing things going on in lots of different places across the region. Pretty much everyone sitting around the table demonstrated their passion, their energy and their frustration in a manner that gives me tremendous hope for our future.”
Debbie: “I saw this as an amazing opportunity for collaboration between Parkinson activists in different countries. We have so much to learn from each other. With a united front, and discussions among great minds, we can create a strategy that will hopefully influence government policies.”
Mariette: “I hope the significance will be that we have shown just how urgent, desperate even, our situation is. I also hope the MEPs pick up on my idea of a ‘PD Diagnosis Leave’ – time off work to allow you time to get back on your feet, at the same time increasing the chance you will be able to return to work and stay productive.”
Ben: “The political meetings reaffirmed my personal belief that lobbying and trying to influence policy is not the most effective use of one’s time. Politics moves too slowly, there are many more direct and immediate ways to have an impact.”
How can the Parkinson’s community work together to bring about meaningful policy change in relation to young onset Parkinson’s?
Gary: “For me, it’s all about the message: we need to be clear about what young onset Parkinson’s actually is, what we believe are the most urgent issues to address and then be relentless in our promotion of this message and reality.”
Elisabeth: “We need all national associations, researchers, neurologists, doctors, nurses and anyone affected to work together through the EPDA. The more of us there are, the stronger we are.”
Mirjam Holzel, Parkinson’s campaigner: “I think we need harmonisation between countries. We all need to work together, for the benefit of research.
Alexander Reed, founder of the European Parkinson Therapy Centre: “It’s all about the money! If we can prove to governments that early intervention and multidisciplinary support to help ease people into their new Parkinson reality will result in major savings – as people work longer, take less pills and use health facilities less – they will listen.”
What kind of support do you look for in your national Parkinson’s organisation?
Alex: “Advice, support and guidance. Living in Italy this is a little difficult, as we have no national association capable of providing this. A recent trip by some leading Italian neurologists, including Dr Nicola Modugno, to visit Parkinson’s UK gives hope that a new association may be born based on a concept not yet considered by any association in Italy.”
Mirjam: “Fundraising for research is key. We need to keep research and a cure for Parkinson’s disease on the radar. We could also benefit from multidisciplinary centres offering Parkinson’s-specialised support. This could include physiotherapy, speech therapy and information about employee rights.”
Gary: “To be kept informed and remain connected to what is going on in the Parkinson’s world; to understand what’s really happening in our ongoing quest to make a breakthrough; and to stay focused on the very thing that has brought us together: our obsession to end Parkinson’s reign.”
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