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3 things that are unhelpful to say to someone with Parkinsons disease, from a psychologist
With an estimated 10 million sufferers worldwide, Parkinsons disease (PD) results in annual losses due to lost income, social security payments, and treatments of $50 billion.
Parkinsons may be best known for its movement symptoms the tremors, among others but it also comes with several non-movement/non-motor symptoms, which also take their toll on a patient’s mental health and make them particularly sensitive to certain challenges. If you find articles like this helpful, we have similar pieces on what to avoid saying to someone with Alzheimers disease and how not to talk to someone with ADHD.
Parkinsons disease affects patients minds as much as their bodies
In its breakdown of the diseases non-movement symptoms, the Parkinsons Foundation highlights the importance of prioritizing mental health when considering overall well-being.
People with PD often experience depression, apathy, and anxiety more so than people without it. The Parkinsons Foundation explains that depression often goes un- or under-treated among PD patients. Neural implants for PD treatment are in development, but they’re still a way away from any kind of public rollout.
Other symptoms include difficulty sleeping, respiratory problems, speech and swallowing issues, constipation, loss of smell, double vision, incontinence, and an impaired ability to regulate mood. In other words, it strikes on several fronts, many of which are invisible.
Doctors can help identify the possible causes and medication interactions behind what the Foundation calls thinking changes. Some are reversible, and exercise is one way to manage them. But for the majority of PD sufferers, the sheer diversity of symptoms makes for a lived experience marred by instability and unpredictability.
For these reasons, its extra important to be considerate and sensitive when talking to someone with PD.
Phrases to avoid when speaking to a Parkinsons disease patient
Bayu Prihandito is a psychology consultant and personal development coach from Germany.
He has three phrases he recommends avoiding when talking to someone with Parkinsons disease because of the negative impact they might have.
1. Just try to relax; stress makes it worse.
Bayu concedes that stress can exacerbate symptoms. However, he contends that telling someone to relax rather than, say, finding ways to help them relax can be unhelpful and increase their frustration and guilt.
Instead, he suggests saying things like, I know this can be stressful. Is there anything I can do to help make your day easier? Since this approach offers actionable support, its likely to have a more positive effect.
2. You need to stay strong for your family.
This places an undue burden on the PD sufferer, Bayu says. Suppressing emotions and hiding symptoms both require huge amounts of energy at the best of times. At the worst, this kind of masking may become unbearable.
You might say, It’s okay to feel however you’re feeling, and it’s also okay to ask for help, as a more helpful alternative. This makes space for the sufferers vulnerability and self-care, which is fundamental to a persons mental and emotional well-being.
3. You just need to stay positive.
Yes, positivity can help in many contexts. However, putting pressure on someone to behave in a way that isnt true can be harmful.
Instead, Bayu offers, Im here for you, no matter what.” Simple, but clear: This offers support without pressuring them to put on a happy face.”
Bayu Prihandito founded Life Architekture in 2021. He is a psychology consultant with experience as a life coach. He trained in Germany.
