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Pat and Margaret

Pat and Margaret, members, Parkinson's Disease Society 

Audio quote from Pat and Margaret

'I'm Pat and I'm a member of the Edinburgh branch of the Parkinson's Disease Society. And I'm Margaret and I'm a member of the Parkinson's Society too.

'One of the important things that we would like people to understand about Parkinson's is something that's really fairly unusual. It's that our medication works for only a limited amount of time, so our ability to function goes up and down during the day according to when we take the medication.

'And that means that it gets used up more quickly if we're in a stressful situation. So that means that we have to pace ourselves very carefully. We know roughly when it's going to wear out and that means that whatever we can do that's useful, comes to an end for a little while.

'So it also means that we can't get too sort of pushy or noisy or, you know, we can't talk up in a meeting very easily. And it might look as though we don't care as much as people who do make more of a fuss or, you know, can speak out loud and clearly.

'We really do feel we want to say something but we can't get it out loud and clear sometimes. And also it matters physically if meetings run over time, because then we have to be thinking about how we'll get home while the medication is not working.

'That leads me on to think of the vital role of a chairman of a meeting. Whoever is in the chair needs to ensure that it doesn't overrun time. If there has to be a very long meeting (more than an hour and a half or two hours) there really needs to be a break and at least water available for us to take the next dose of medicine. And the chairman really needs to watch that those who do have loud voices and can push their point strongly, don't monopolise the meeting and take up all the time. If it's a very large meeting and the chairman can't possibly keep an eye on everyone, perhaps somebody else could be given the job of keeping a watch out for those of us who can't speak out very easily, who may be wanting to get a word in.

'And another point is that maybe at the end of the meeting rather than the chairman and the secretary and all the staff rushing off, they could say that they'd be around for ten minutes or so and perhaps would specifically like to talk to anyone who hasn't managed to make a point.

'If people aren't used to meetings, they may raise an important point but perhaps on the wrong item of the agenda and it'll put them off from participating again if they're just slapped down. But again there are other ways of handling, such as the chairman saying "that's a very important point, not perhaps relevant to this particular item of the meeting, but I'll ask Mr So and So to talk to you about it at the end.

'If we do get a chance to speak it might be that the shaking gets worse, or maybe we've got a quiet voice or find difficulty pronouncing certain words and sounds. We really need a bit of patience and encouragement if we've got something to say, and understanding.

'Hopefully, it will be worth the effort because it's certainly our motor movements which are impaired, not our thinking.

'Talking of motor movements, of course handwriting is badly affected when the medicine isn't working - in fact may be quite impossible. Of course that's something we share with others like, for instance, people with very bad arthritis in their hands who can't write. So, it's difficult for us to take notes at a meeting if a lot of information is being presented. Perhaps handouts could be provided, setting out the information.

'And also, if something has to be filled in by hand. I went, I remember, to an exhibition once to set plans out for people to comment on and there was a questionnaire to fill in at the end. So it would be really helpful in that sort of consultation to have someone on hand to write down to the person who wants to comment - to their dictation - to write down what they want to say.

'And then moving on to the telephone, it really is a help if whoever is ringing up, who maybe wants to leave a telephone number or something that has to be taken down, if they would speak very, very slowly and distinctly so that we can do our best to take down the name and numbers when we can hardly write at all.

'A lot of these things can apply to people with other problems, not just Parkinson's.

'On the subject of the telephone, I think it would be very useful, if people were aware that it might be a point in your medication where things are difficult and if they could just ask if this is a good time or not and be prepared to phone back in an hour or two. That would be so useful.

'There are some people with Parkinson's who unfortunately lose all facial expression and just have a mask-like face and perhaps can't use gestures either to help express themselves.

'Well the brain's not affected and anyone who is dealing with them really has to remember, there still is a person behind the apparent mask and again you need patience and understanding to find out what it is they want to say and what they are feeling.'