Advice to others

The people we talked to offered many different types of advice based on their experiences of having Parkinson’s disease. People are all different and what works for one person may not work for someone else. Here are some of their suggestions’

On learning the diagnosis
  • It’s not as bad as it first sounds

Don’t assume the worst, everyone with Parkinson’s disease has different symptoms and progression…

Age at interview 56

Gender Female

Age at diagnosis 47

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  • Face up to it and remain positive
  • Don’t blame anyone
  • Don’t believe everything people tell you about it. Find out for yourself
  • Modern medicines work well

Don’t lose heart when you start the medication. It may take time to begin to reach the dose which…

Age at interview 63

Gender Female

Age at diagnosis 55

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  • Establish a good relationship with your consultant
  • Admit how you are feeling and allow yourself to grieve
  • Learning to live with it
  • You are still the same person
  • Try to put it out of your mind and don’t feel sorry for yourself

Be active and do what you can when you can.

Age at interview 62

Gender Female

Age at diagnosis 52

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  • Join the Parkinson’s UK and talk to others with Parkinson’s disease
  • Find out how other people manage
  • Make sure your GP knows about all what is available for people with Parkinson’s.
  • Do everything you can not to isolate yourself
  • Don’t give up your hobbies and interests even if sometimes it means you’re being a spectator rather than taking part
  • There’s always a way around things
  • Find new ways of doing the things you enjoy
  • Give yourself goals – reaching them makes you feel good
  • Find out what you can do to help yourself
  • Let other people help you. If you were in their position you would feel privileged to be allowed to help
  • Tell the person at the checkout desk to turn the conveyor belt off; take a big bag to pack your food in
  • Be aware of changes in behaviour when you are taking new medication and go to the doctor if you are behaving differently


Caring, care and carers

Parkinson's disease is very variable and may progress very slowly. When first diagnosed most people worry about future incapacity and who will be able to...