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.
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.
Caption: ‘Getting out of bed’
Caption: ‘Eating and salivation’
Caption: ‘Planning for the future’
You can download this resource and view it offline. It may be useful as part of a group activity.
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
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?
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.
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