2.14 What is the impact of Parkinson’s on people’s daily life?

So far we have separated the symptoms from the person. We will now look at a case study that allows you to reflect on what these symptoms can mean for people on a daily basis.

Exercise 2.2

Please watch the following video of Andrew and Ruth, who talk about Andrew living with Parkinson’s. While you are listening, write down the areas of Andrew’s life that you think are affected by Parkinson’s. You may also consider other people who may be affected by the condition. Use the reflection log [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]   to record your thoughts. You may want to write by hand as you listen and then record in the log afterwards.

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Transcript

Andrew
My movements have become much more stayed in and around the house. I tend to take small shuffling steps. I don't stride out because I know if I gently, even gently, touch something there's a tendency for me to start to fall. I'm getting much stiffer to walk. I can do it … I can do everything that I ever did but I can't do it as well. But I can still use all the tools …
Ruth
Slower.
Andrew
        But I'm slower. Last few months the pains have got worse. I've made the comment at one time, somebody said 'have you got a pain?' I said well I suffer from Parkinson's: everything ... bit hurts at some time during the day.
You've mentioned the guitars: I can still play the guitars, but I can't play for long, and after a while it goes to hell and back. I can't continue, and that can be as little as 10 minutes....
I'm slower than I've ever been before; it's not as smooth as it was; it is very difficult to think about playing and singing, and I was a singer to go with it.
It's much harder to play it when I get my right hand up here. My finger ... particularly this finger ... I can't really sense where it is. Sometimes I don't put it down where it's supposed to be. ... It's not natural any more. I have to think about it. I'm making more mistakes and I have to think about it. I used to do it completely blindfolded. To cope with that, I'm actually changing the way I play the tune slightly ... but I keep at it.

Caption: ‘Getting out of bed’

Andrew
        It's actually very, very difficult for me to get out of bed. Once I'm out, I do not have a problem. But getting out is a problem, which is one of the reasons why, if I want to go to the loo at half past five, I get up because … I really don't want to go back to bed and have to struggle to get back out again in three hours.

Caption: ‘Eating and salivation’

Andrew
        I can eat my food but it's ... it's getting difficult ... The left arm does not like picking peas up on the fork. So that has to be done by the right hand; and I'm much like ... I like eating Chinese food but that's just one fork, one plate. That's great, that is. But ... the left arm is definitely a liability. But if it's just a strength job, it's fine.
I don't have a sense of taste. I don't know whether it's just being overly-dry food. Too much, yes, I choke a bit, but overly dry food really does stick in ... the back of my throat so I very rarely have overly-dried food. I can't think of what I would eat - oh - a sponge cake or something. … If you haven't got any nice gooey jam or something with it, then it catches in my throat.
I noticed that the saliva in my mouth more than I ever did before and I find that I've got to keep swallowing - consciously swallow the saliva. I don't ... haven't got to the coming out the sides of my mouth yet, but I wake up occasionally in the morning and there'll be a ... damp patch on my ... pillow where I've drooled a bit.
But during the day, for some reason or another, there are times when I really get a mouthful of saliva and I really have to consciously clear my mouth. I don't think I make any more than I ever did before, but I think I have to consciously swallow the saliva, and it might be two or three times in a space of five minutes and then I go back onto normal, or however I normally cope with it.

Caption: ‘Planning for the future’

Ruth
...And I sort of thought about holidays in the future and said something, and Andrew said 'well we won't go then if you think ...' you know, because I'm just wondering what … but then we've got to do what we can now. There's no good ..., well, it's no good worrying about the future like that, it's ... you've got to live life now isn't it, and do what you can.
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Discussion

When you were completing your reflection log you may have realised that Andrew is currently in the complex phase of Parkinson’s. He will become increasingly dependent on his wife and be concerned about the impact his condition has on her.

Areas of Andrew’s life that are currently affected are:

  • Poor mobility
  • Fluctuation of symptoms
  • Severe pain and rigidity
  • Difficulties eating and swallowing
  • Difficulty playing the guitar
  • Slowness of movement
  • Loss of sense of taste
  • Nocturia

Use the reflection log to answer the following questions:

  • Which area/activity of daily life described in the video do you think has the biggest impact on Andrew’s quality of life?
  • How do you think the changes to Andrew’s daily life could impact on Ruth?
  • If this was your life, what might your overriding emotion be?

Discussion

People with Parkinson’s can often be labelled as difficult, angry, frustrating, etc. But it’s vital that those caring for people with the condition should treat people with Parkinson’s with empathy and understanding.

Does hearing about Andrew’s life with Parkinson’s help you to understand a little better why people with the condition may feel frustrated, and upset at times? Have you ever seen those emotions in a person with Parkinson’s that you have worked with?

Everyone will have different answers for each of these questions and there are no right or wrong answers.

You may have said that the impact on Ruth of changes in Andrew’s daily life could be one or more of the following: Frustration at not being able to go on holiday, sadness or depression at seeing Andrew in pain and not able to play his guitar as well as he once could, tiredness due to interrupted sleep when Andrew gets out of bed to go to the toilet, frustration communicating with Andrew due to his slowness, exhaustion at having to clean up more often after Andrew spilling or choking on his food, and social isolation.

You may have said that your overriding emotion would be frustration, exhaustion, anger, sadness and depression.

This exercise demonstrates how difficult living with Parkinson’s can be. Each person living with the condition will have their own personal set of circumstances that will contribute to how they experience Parkinson’s. These circumstances will include what symptoms they have, their age, financial status, family life and medication regime, to name just a few.

Everyone experiences Parkinson’s in their own way and will have their own outlook on life with the condition. People with Parkinson’s should not be defined by the fact that they have the condition. It is important to remember that they have led varied and interesting lives before and after the development of the condition.

Discussion

However, it is vital to take into account that, when they reach the complex phase of the condition, some people with Parkinson’s will be (or have been) forced to give up many of the activities that they have enjoyed for a long time. By this stage they will probably be struggling with basic activities, such as maintaining personal hygiene or getting out of bed. This is why care staff will be providing support at this time in their lives.

2.13 Care planning

2.15 The impact of Parkinson’s on a family