Talking about life ahead if you have Parkinson's

You may be thinking about the best way to talk to a loved one about the impact of Parkinson's on everyday life or planning for the future. Planning ahead can help reduce stress and provide peace of mind for you and your loved one. 

Here we look at supporting you to have conversations about changing needs and the future, including when to raise the subject, ways to do it and how to handle other people’s reactions.

  • How to prepare for, start and manage a conversation
  • How to deal with people’s reactions
  • The impact of Parkinson’s on communication
Item text

Before having a conversation with someone, take some time to think about:

  • What is your purpose for having the conversation? What do you hope to achieve? What would be an ideal outcome?  
  • What assumptions are you making about the other person’s thoughts and feelings? Try to focus on what you hear from them during the conversation rather than assuming you know what they might say beforehand.  
  • How might your attitude toward the conversation affect it? Don’t assume the conversation will be difficult. A positive approach and belief that some good will come of the chat can encourage a better outcome.
  • Where might you and the other person feel most comfortable having the conversation? If you both feel relaxed, it can help to create a more open conversation. 
Item text

If you are feeling unsure as to how to start the conversation, here are some examples to help you open the discussion:

  • “I’ve got something I’d like to talk to you about that I think will help both of us and give us more peace of mind.” 
  • “I’m hoping we might be able to reach a better understanding ___________________. I really want to hear how you’re feeling about it and share my view on it."
  • “I need your help with something. Can we talk about it (soon)?” If the person says, “Sure, let me get back to you,” then follow up a few days later.
Item text
  • Try to stay at about the same eye level and speak directly to the other person.
  • Be as clear as possible and use specific examples.
  • Make sure you have understood what the other person has said before you respond. If you’re not sure what they mean, ask them to explain it again and give them time to respond. It may take them longer to put their point across in a different way.
  • Approach the conversation with openness. Try to ignore your assumptions. People grow and change their feelings, or opinions may be different to what you imagined. 
  • Focus on the topic of this conversation, save other issues for another time.
  • When the other person is speaking, consciously listen to what they are saying and take it at face value.
  • Speak calmly as this maximises the chances that others will hear what you are trying to get across.
  • Think about your body language. If appropriate, holding someone’s hand as you are talking for example, can offer reassurance. It can give someone the sense you are working on the issue together.
  • Have a time-out if you or the person you are talking to needs it. Time-outs give everyone involved in the conversation the space to reflect and compose their thoughts, which can make it possible to continue. Sometimes it’s better to re-visit the conversation another day.
Item text

Speech and communication problems are common for people living with Parkinson’s. It can impact both your voice and body language and make conversations difficult.

Below are some tips from others to help you to make conversations with your family member or friend more successful: 

  • Try to relax by making sure you’re sitting or standing comfortably before speaking, with a posture that helps you take in a good breath.
  • Every time you speak, imagine you’re speaking in a big room, to people right at the back. This will help you speak clearly and at the right volume. Many people don’t realise they’re speaking quietly.
  • Try to make each word as clear as possible, and speak slowly.
Item text

Talking about the future can feel scary but it will get easier with practice. Once you’ve opened the conversation, you’re likely to feel more confident and able to share how you feel. 

You may be unsure about how others will respond when you talk to them. The person you are talking to may feel differently to you. They may become upset or angry, or feel guilty they didn’t realise how you’ve been feeling. If you’re in control of the conversation and try to approach it with a positive attitude, you’ll be in a better position to manage other people’s reactions.

  • Choose a good time of day to have the conversation when people will not be distracted and be clear about what you want to say. You may also need to think about timings and pick a time when your medication is working well.  
  • Provide some time to recoup if the person you are talking to becomes upset or angry. You can return to the conversation later if they need time to process what’s been discussed before they respond.
  • Try to anticipate what the person may want to know from you. Think about the questions they may ask and think through/prepare your responses.
  • Ask them about their own needs and thoughts about the future and explore the similarities and differences between theirs and yours.
  • Offer reassurance during the conversation if you can.
  • If you are struggling with the conversation, it can be helpful to involve someone who may be able to mediate. This could be a trusted friend or family member, or your Parkinson’s nurse, for example.
Item text

Here are some ideas for taking action after your conversation: 

  • Take small steps
  • Prioritise and do one thing at a time
  • Ensure you both take away things to do from the conversation and share the responsibility 
  • Think about a timeframe for when you would like to achieve your aims. It might help to break things down into the short-term and long-term.
Item text
  • The Parkinson’s UK helpline is a free and confidential service providing support to people with Parkinson’s, their family, friends and carers. Call 0808 800 0303.
  • Our forum community is here for people with Parkinson’s, and the people who love and care for them. Share information, experience, and sometimes a virtual cup of tea. Visit the forum.

Last updated July 2021. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected]