a wake up call!
Parkinson’s disease is the fastest growing neurological disease in the world. Over the past 25 years the number of people with Parkinson’s disease has doubled worldwide. We asked Karl Wouters, Vice-President of the Flemish Parkinson’s organisation to set the scene and explain what a patient organisation can do to improve the quality of life of patients and their caregivers.
The fastest growing neurological disease worldwide
“Parkinson’s disease (PD) is a neurodegenerative disorder that affects predominately dopamine-producing (dopaminergic) neurons in a specific area of the brain called the substantia nigra. The disease causes motor symptoms (slowing of movements, tremor, limb rigidity, and gait and balance problems) but also non-motor symptoms (dementia, depression, and sleep disturbances) Currently there is no cure. Treatment options vary and include medications and surgery. While Parkinson’s itself is not fatal, disease complications can be serious. Being confronted with this complex disease, investments in new therapies are unfortunately lagging behind other disease areas, causing many people to remain undiagnosed and untreated. As the Gold Standard treatment Levodopa – a chemical building block – was developed 50 years ago, there is a strong call to action!”
World Parkinson’s Day to raise awareness
“April is Parkinson’s Awareness Month, with World Parkinson’s Day recognised on 11 April each year. On that day, the Parkinson’s community comes together to learn about the latest developments in research, to find out how people are getting the best care from their health service and to discover inspiring stories from people with Parkinson’s supporting each other.”
At the Flemish Parkinson’s organisation, we take action to raise awareness about this devastating disease.” We really want to make a difference for patients and the people who care for them. For that reason we work closely together with the European Parkinson’s Disease Association (EPDA) on a supra-national level to maximize impact on policy makers.
Focus on patient support, information and empowerment
“Our Parkinson’s patient organisation recognizes the need for development of new clinical research and investments in new therapies. Our first priority is patient support. Fuelled by previous professional experiences with disease management programs in Africa and Asia, and working with patient organisations in the context of the European Innovative Medicines Initiative (IMI), I strongly believe in the importance of patient information and education to empower patients. When people diagnosed with PD discover different ways to connect with medical specialists and other patients, they are able to learn more about the positive impact that measures such as diet, nutrition and sports can have on their physical and psychological health.”
“World Parkinson’s Day is the most important occasion to raise awareness of Parkinson’s. In these difficult times where in-person events are sadly not possible, the EPDA is by the side of each of our Member Organisations, who, such as Flemish Parkinson’s organisation, are organising wonderful virtual initiatives to make sure the voice of the European Parkinson’s community is heard, and attention on the challenges facing people living with the condition is high. We are proud to work together with our Member Organisations and the medical community to provide information and support to people with Parkinson’s, their families and carers.“
Russell Patten, EPDA Director General
On World Parkinson’s Day, our patient organisation is setting up a livestream with healthcare professionals addressing patient questions about optimizing the quality of care.
Launch of a First Aid Kit for newly diagnosed patients
“Focusing on patient support, the Flemish Parkinson’s organisation decided to start developing a First Aid Kit for newly diagnosed patients, consisting of different tools to help patients with PD and their partners/ caregivers in managing the disease and finding ways to enhance the quality of life with PD. Combining checklists, tips and tricks, templates, testimonials and inspiring patient stories, we need to make sure every newly diagnosed patient will have access to the First Aid Kit. The leading Belgian healthcare professionals of our advisory board are not only helping to develop the kit, but will also aid with the promotion and distribution of the kit among their peers.”
Providing specialised care
“We recently expanded our team with a nurse, specialized in the care of patients with Parkinson’s and their caregivers. Caring for a person with a complex disease such as Parkinson’s requires a specific individualized approach.”
“Building on her wealth of experience, she will be able to assist patients, families, and caregivers with these specific needs of care. And in this way, she is helping to ensure that people with Parkinson’s are still able to maximize quality of life for themselves and their relatives.”
Medinet.tv: delivering inspiring and reliable patient information
“In 2018 my colleague Farid Khetouta and I founded medinet.tv, a free of charge online video platform for chronic patients and their caregivers. Our aim is to contribute to improving quality of life, as well as treatment outcomes of patients, by providing relevant and reliable information.”
“We are very pleased that the Flemish Alzheimer Patient organisation will also be joining the platform. Currently, the platform is only available in Dutch. Translation into English is foreseen for the future to reach a wider patient audience.”
Parkinson’s disease treatment landscape overview
- Current treatment regimens of PD mainly involve administration of dopamine agonists
- Levodopa was first developed for the treatment of PD in the 1960s and remains the most-effective therapy for the condition
- There is a broad and encouraging pipeline of agents currently being tested in clinical trials for PD. In 2020, there were 110 ongoing Phase 1 to 3 trials worldwide
- An increased understanding of underlying pathogenic mechanisms is leading to the emergence of novel therapeutic targets and raises the possibility that the management of PD will evolve substantially over the coming years
- There is hope that in future, treatments will be able to control the PD-related symptoms with fewer side effects than observed with current treatment options, decrease neuronal loss and, ultimately, slow progression of the disease
(Sources: GlobalData (accessed April 2021); Axelsen TM, Woldbey DPD. J Parkinsons Dis. 2018;8:195–215; Stoker TB, Barker RA. 2020;9:F1000 Faculty Rev-862; McFarthing K, et al. J Parkinsons Dis. 2020;10:757–774)
Bio Karl Wouters
Karl Wouters joined the Janssen Pharmaceutical Companies of Johnson & Johnson in Belgium in 1988 as head of Corporate Communications. In 2000 Karl moved on to the NGO sector, setting up exchange programs between corporations’ CSR objectives and NGO activities. As from 2003, he focused on developing and implementing communication strategies for Disease Management Programs in Africa/ Asia and for IMI projects in Europe for Johnson & Johnson Global Public Health.
In 2018 Karl and Farid Khetouta founded the online video platform medinet.tv. In 2021 Karl became Vice-President of the Flemish Parkinson’s organisation (Vlaamse Parkinson Liga).
Inspiring websites
- Vlaamse Parkinson Liga: www.parkinsonliga.be
- Parkinson’s UK: www.parkinsons.org.uk
- European Parkinson’s Disease Association: www.epda.eu.com
- The Michael J. Fox Foundation for Parkinson’s Research:
www.michaeljfox.org