Finding a way to ‘live’ with the disease does not just mean physically, but also mentally and emotionally.
Indeed, stress has been shown to aggravate Parkinson’s symptoms so reducing anxiety can have a positive physical impact.
This is, of course, far easier said than done when the symptoms of the disease not only include difficulties moving but also interrupted sleep and an increase in depression. Without a cure, the degenerative nature of Parkinson’s can loom over patients, and, as symptoms increase and further impact daily life, they can become socially isolated.
Patient organisations often suggest that patients can help reduce their stress and improve their mental wellbeing by:
- feeling more ‘in control’ i.e. find out about the disease’s symptoms, care and treatments in order to feel more in charge of their own future.
- sharing how they feel with a medical professional, carer or friend and asking for help i.e. be their own advocate.
Further practical advice for supporting your mental health, whether you have Parkinson’s or not, are to:
- Practice breathing/mindfulness meditation
- Recognise your stressors and avoid, or prepare, for them ahead of time.
- Focus on the positive
- Stay connected to friends, family, groups of like-minded people
- Exercise regularly
- Get enough sleep
A non-exhaustive list of people that can help to support Parkinson’s patients includes:
- General doctor (GP)
- Neurologist
- Fellow patients. Find them through your local Parkinson’s support organisation, which may organise meetings or other activities, or on Facebook.
- A specialist Parkinson’s nurse
- Psychologist
- Neuropsychologist
- Psychiatrist
- Public helplines
Additional resources:
English:
The Michael J. Fox Foundation has a guide to reducing/coping with stress: https://www.michaeljfox.org/sites/default/files/media/document/080918_STRESS_GUIDE.pdf
Dutch:
The Vlaamse Parkinson Liga recommends two online tools to support patients’ mental health:
- Positive Health focuses on individuals: their resilience and what makes their lives meaningful. Using a mindmap, you examine how you experience your health and then discuss the results with someone close to you or with your doctor. https://www.mijnpositievegezondheid.be/tools
- Goal Finder helps you consider what is important in your life: what you like to do and what makes your life worthwhile. It helps you to formulate concrete life goals. https://vlaamspatientenplatform.be/nl/doelzoeker
This article draws upon guidance and suggestions provided by Parkinson’s organisations in Belgium, the United States, Canada, the United Kingdom, the Netherlands and France. It aims to provide an overarching view of available advice but can not possibly be comprehensive. We encourage you to visit the websites of your local or regional organisations as these may have specific information suited to your particular needs.
