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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I would say probably not to jump to the conclusion that you’re going to be really bad because everybody’s case of PD is different. Although it’s the same illness, they say there’s no two people the same with PD.So I would say probably not to think the worst like I did in the beginning. Just try and be positive because I think the more positive you are about it the less stressed you feel and the less stressed you feel, the less your symptoms are.

Definitely mine anyway, I know when I’m really stressed my symptoms are really, really bad.So I would say try to be positive and keep calm.I know it’s easy to say and not easy to do when you’re hit with something like that.But I mean I suppose in the beginning you always think of the worst case scenario and it’s not always like that, you know.I didn’t think I’d be this good nearly ten years later.

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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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I think the first thing is not to lose heart when you’re put on medication at first and the medication gives you these side effects which are so horrible.I actually did some charts about, you know, when I used to get the leg twitches and whatnot, and I think my specialist found it quite helpful.But not to get disheartened.Because you have these tiny doses and it builds up and it, and sort of miraculously it comes to the right dose at some point.

I, think I was all on my own when that happened and I suppose it was difficult.I suppose if somebody else had been in the house or somebody, it would have been easier to bear really.But don’t get disheartened.And wait for the medication to workAnd there is a lot of medication now. I mean I was put on the standard Madopar to start with.But I think there’s lots of different varieties and some will suit some people and some will suit other people.

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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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Live for today and do what you can while you can.I don’t want to be sitting in my rocking chair when I’m eighty-odd if I get to that age, but, I don’t want to be sitting there thinking, I wish I’d have done that.I’m sure I was able to do it and I didn’t give myself the opportunity. don’t do that. If you want to do something, do it today. Make arrangements today so that you’ve got something to plan for and think about that, other than yourself, because again I think you can make yourself into an invalid by continually thinking about how many pills you take and oh dear. You can bring yourself down and it is a job to keep up but if you don’t help yourself no-one else is going to help you.

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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...