Talking to people about Parkinson's

If you have Parkinson’s, you may be thinking about the best way to talk to other people about your condition, whether it’s those closest to you or people you’ve just met.

This information looks at telling people you have Parkinson’s, including when to raise the subject, ways to do it and how to handle people’s reactions.

You may be naturally open and find it quite easy to talk about Parkinson’s when you need to. Or you may be more private, or find it hard to come up with the right words.

Even if you’re an upfront type of person, it can be daunting to explain Parkinson’s to people you meet in everyday situations.

Being prepared and thinking about what you want to say will make it easier each time you talk to someone about your condition.

It’s up to you whether to tell people you meet that you have Parkinson’s. You may never want to tell people you have the condition. You don’t owe anyone an explanation and you may want to keep it private.

There may also be times when you want an escape from thinking about Parkinson’s. If you’ve just been diagnosed, you may need some time to absorb the information yourself before you talk to other people.

That said, choosing not to tell other people may make you feel isolated. You may find that opening up to people can be a positive thing and can widen your support network.

If your symptoms are quite noticeable, you may find it easier to tell people about your condition.

You may want to feel you can live your life without feeling defined by other people’s ideas about Parkinson’s. For some people, this can be important at work.

In most cases you don’t have to tell your employer you have Parkinson’s. But you may feel it’s helpful to do so. This is because your employer has a legal duty to make reasonable adjustments where necessary. This can include adapting your work space or giving you modified equipment.

You do have to tell your employer about your condition if there are health and safety issues relating to parts of your work – for example, if your job needs lots of physical effort or quick reactions. You need to consider any risk to your own or other people’s safety.

You may want to mention you have Parkinson’s when you need people to understand how the condition affects you. For example, you may need to take more frequent breaks than other people during a meeting. There may be times when you need to sit down, or get up and walk around. You may feel it’s best to tell people about potential ‘off’ episodes, or explain why they’ll see you taking medication as your condition progresses.

Find out more about work and Parkinson's.

You must tell the Driver and Vehicle Licensing Agency (DVLA) in England, Scotland and Wales, or the Driver and Vehicle Agency (DVA) in Northern Ireland about your Parkinson’s diagnosis. These organisations should make every effort to make sure people with health problems can stay as mobile as possible and are safe to do so. They won’t necessarily stop you driving – give them a call to find out more.

You will also need to tell your car insurance company – some insurance companies (but not all) may increase your premiums.

Find out more about driving and Parkinson's.

There may be other times when it’s crucial to tell people you have Parkinson’s. You should also be prepared for the possibility of an unavoidable situation where you need to tell someone.

For example, our helpline has received calls from people who have had to explain their symptoms or medication as they’ve passed through airport security while travelling. Having a short and frank explanation to hand can make situations like this less stressful. Always carry your prescription for any medications with you.

You may also want to carry a letter from your Parkinson’s specialist, which confirms your diagnosis.

You can keep our Parkinson's alert card in your wallet or purse to help you explain your condition clearly and simply.

Opening up to someone else about Parkinson’s is a very personal decision. Not everyone needs to know, and not everyone needs to know straight away, so wait until you’re comfortable.

Once you’ve decided to tell someone about your Parkinson’s, try to choose a moment when they’re not preoccupied and have enough time to listen and talk. While family celebrations may be a good time to talk to lots of people at once, they may not be the best place to talk to people for the first time about your Parkinson’s.

Sometimes you may not be sure if you should mention your condition to people. If you’ve spent more than five or 10 minutes feeling uncomfortable about whether to say anything about Parkinson’s, and the thought is very distracting, it may be time to say something.

Talking about Parkinson’s will get easier with practice. Once you’ve told a few people you’re likely to feel more confident. You may find it easier to talk about your feelings and experiences with those closest to you first.

Being prepared can help you be more positive when you’re talking with others. You may also find it useful to think in advance of a good way to start the conversation. Many people on our online forum have discussed how they have told others about their Parkinson's

Whoever you’re talking with may have their own ideas about what Parkinson’s is and who it affects. When talking about your diagnosis, it may be helpful to explain that the symptoms and how quickly the condition develops are different for each person with Parkinson’s. You’ll become the expert on your condition, so talk to the person about how it affects you.

You may find it useful to imagine you’re meeting an old friend you haven’t seen for 10 years. What are the things they’ll notice about you? This can help you explain the visible ways Parkinson’s affects you.

In some situations, you may want to keep a check on your emotions. But there may be times when it feels right to show your feelings. Your emotions may also change quickly. For example, you may find laughter quite quickly turns into tears without much warning.

You may find the following tips helpful:

  • Talk it over with someone you’re close to first, so you’re prepared. They may be able to help you talk to others.
  • Whether it’s you or someone else talking about Parkinson’s on your behalf, be very clear about what you do and don’t want other people to do. Explain what they need to be aware of and how they should treat you.
  • You may choose to take a friend or relative with you for support when you’re telling someone about your diagnosis. Be clear about their role beforehand to avoid them talking over you or on your behalf. Remember you’re the expert on how Parkinson’s affects you.
  • If you need time to respond to a question during a conversation, take as long as you need. Don’t feel pressurised to respond quickly. 
  • Give clear examples of any practical support that is or isn’t helpful. Misplaced helpfulness often stems from nervousness. Knowing what to expect and understanding what you need, can help to put people at ease.

You may be unsure about how other people will respond when you tell them you have Parkinson’s.  People can have lots of different reactions. A person may get very upset or angry, or feel guilty they didn’t notice your symptoms earlier. They may worry that Parkinson’s is a life-threatening condition and what that means for the future.

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. To do this choose when to tell people and decide what you want to say.

Try to anticipate what they’ll want to know. This may include questions like:

  • Is it hereditary?
  • What causes it?
  • What effect does it have on you?
  • Is there anything I/we can do to help?
  • Can you still work?
  • Is Parkinson’s only a condition that affects older people?
  • Is Parkinson’s just a tremor?

There are different ways to let someone know you have Parkinson’s. You may want to think about this in advance if you’re worried people may react by offering help you don’t need.

For example, if you’re joining a new group or class and want everyone to know you have Parkinson’s, talk to the person running it beforehand. Decide between you how to inform the group. You may want them to do it, or perhaps you want to explain yourself. Or you may prefer to talk to people one at a time.

If you have a group of friends, you can also tell them together or one at a time. You can ask people not to tell others, or you may be happy for them to pass the information on.

Let your friends know whether you’re happy for them to talk to you about Parkinson’s directly. Even if you don’t want this at first, as time passes and your needs change, you might want to raise the subject again.

Talking about Parkinson’s to people you meet can be a challenge. Finding ways to do this that work for you will make sure it doesn’t become a barrier between you and getting on with your everyday life.

People with Parkinson’s may find they have problems with communication, including speech, facial expressions and writing. This can make it harder to express yourself, and it may make it more difficult for you to talk to others about your condition.

Try not to let communication issues be a barrier in talking to people about your condition. In fact, if you experience these symptoms, you may be able to use them to explain how Parkinson’s affects you. You may find this helps people understand the condition better and avoids any misunderstandings or miscommunication in the future.

Find out more about communication and Parkinson’s.

If you want to talk to children or young people about Parkinson's, you may find these resources helpful: 

It may help you to have some leaflets with you, or some pages printed out from the Parkinson’s UK website when you are discussing your Parkinson’s. You can use these to help you explain things, or you can leave them with the person to read later.

You may find the following useful:

Telling friends and family

Having that first conversation with family and friends about your Parkinson's can be difficult, but you may find it helps you feel better about living with the condition.

Watch our video to hear about people's experiences of talking openly about life with Parkinson's.

Paul on telling his wife

"She felt that it was better just to get it out there. I took her advice and it was the best thing to do. I just go with the flow now - if I shake I shake."

In this video Paul shares his experience of telling his wife about his Parkinson's.

Last updated May 2014. 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]