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Advanced Parkinson's

John, who has Parkinson's, with physiotherapist Helen

The term 'advanced Parkinson's' usually refers to a time when your symptoms are more complex and have more of an effect on your day-to-day life.

You may find that you're no longer able to do tasks such as washing and dressing without help from someone else, perhaps a carer.

Talk about the future before anything becomes an issue. My husband and I did. It would have been impossible to make the right choices if we had not done so.

Valerie, whose husband has Parkinson's

It may be a time when Parkinson's drugs are less effective at managing your symptoms, or their side effects are outweighing their benefits.

You may have a more complex drugs regime.

Living with advanced Parkinson's or caring for someone in the later stages of the condition won't be easy.

But this information will give people with Parkinson's and carers ideas and practical tips to help you as the condition progresses.

Stages of Parkinson's

Healthcare professionals often refer to different 'stages' of Parkinson's. These include:

  • Early or diagnosis stage: the time when someone is first experiencing symptoms, being diagnosed and then coming to terms with this
  • Maintenance stage: when symptoms are controlled, perhaps by medication
  • Advanced stage: often called the 'complex phase'
  • Palliative stage: providing relief from the symptoms, stress and pain of the condition

Everyone with Parkinson's is different and symptoms will progress at a different rate. It's nothing to do with your age or how long you've had Parkinson's.

When should I look at this information?

This section includes information about complex symptoms and lifestyle issues. You can read it whenever you feel ready.

But if you've just been diagnosed, or you've had Parkinson's for a little while, you may want to read the following information:

You can read this information whenever you feel ready. You may wish to read about advanced Parkinson's now, so you can be prepared as things arise.

You, or the person you care for, may not be experiencing advanced symptoms at the moment.

But you may wish to read about advanced Parkinson's now, so you can be prepared as things arise, and deal with any difficult decisions that need to be made.

You'll have the chance to think about what you may like to happen if you become unwell, or if you experience symptoms of dementia.

Discussing your wishes with your family, and writing them down, will help them if they need to make decisions about your care.

For more about the practical and emotional issues relating to Parkinson's and the later stages of life, see our information on preparing for end of life.

Are you a partner, carer, family member or friend?

As Parkinson's progresses, it can affect the life of a carer as much as it does the person with Parkinson's.

There may be a sudden contrast at this stage, where you realise your role has changed from being a partner, family member or friend to being a carer.

Find out more about caring for someone with advanced Parkinson's. You may also find our information for carers useful.

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