Parkinson's disease is a progressive neurodegenerative
disorder, which affects people from all cultures and races around the
world.
It affects every aspect of daily living - getting dressed, walking, all forms of
communication, making love, family life, working life, leisure
activities (i.e. going to the theatre or restaurants and playing
sport), using public transport, standing up, crossing the road,
shopping, moving, speaking, smiling and much more.
It has been described as being 'trapped' within your own body.
This campaign will help to raise awareness about the impact that Parkinson's disease has on daily life and improve the understanding and knowledge relevant for all stages of the disease.
It hopes to:
- highlight the challenges experienced by people with Parkinson’s
- raise awareness, especially its consequences
- influence decision makers
- raise funds for resources, management and research projects
European decision makers need to address the
(in alphabetical order)
- burden of central nervous system (CNS) disorders
- cost distribution of Parkinson’s
- cost of care
- inflexible pricing and reimbursement schemes
- lack of specialised healthcare professionals
- limitation of doctors’ appointment time
- medication availability and access
- post-code lottery
- prevention of appropriate access to CNS treatments
- restriction of expensive treatments
Scientists need funding for research into
(in alphabetical order)
- cause of the disease
- cell replacement
- disease mechanisms
- gene therapy
- hereditary aspects
- major Parkinson’s challenges that need new and effective treatments
- neuroprotection
- restorative therapies
- therapeutic strategies
Health care professionals need to
(in alphabetical order)
- ask the patients different questions at the various disease stages
- encourage a partnership with the person with Parkinson's
- ask the right questions to gain the right answers - concordance
- recognise that people with Parkinson’s may over medicate so that they are 'well' for their appointments, leading to lack of communication and inappropriate treatment, resulting in non-concordance
People with Parkinson's and their families need to
(in alphabetical order)
- be involved and understand the choices before making decisions
- be encouraged not to hide the impact it has on quality of life, i.e. do not over medicate when visiting the doctor
- have the courage and gain the knowledge to engage in partnership with the doctor
- learn how to engage with busy doctors - many people with Parkinson’s are still passive
General public need to understand
- what Parkinson’s is and how it affects every aspect of daily living: getting dressed, walking, all forms of communication, making love, family life, working life, leisure activities (i.e. going to the theatre or restaurants and playing sport), using public transport, standing up, crossing the road, shopping, moving, speaking, smiling and much more
- that Parkinson’s is like being ‘trapped’ within the body.
