2 The impact of Parkinson's

Parkinsons_1.0Understanding Parkinson’s for health and social care staff

2 The impact of Parkinson’s

This version of the content may include video, images and interactive content that may not be optimised for your device.

Copyright © 2016

Intellectual property

Unless otherwise stated, this resource is released under the terms of the Creative Commons Licence v4.0

This course is produced by the UK Parkinson's Excellence Network. It was originally produced as a face-to-face workshop course and has been re-versioned for online study with the support of the Opening Educational Practices in Scotland Project. Details of everyone involved in producing and funding this course can be found on the Acknowledgements page.

Contents

  • 2.1 Introduction
  • 2.2 How can I help people with Parkinson’s manage their symptoms?
  • 2.3 Helping to manage slow movements (bradykinesia)
  • 2.4 Helping to manage tremor
  • 2.5 Helping to manage stiff, rigid or frozen muscles
  • 2.6 Non-motor symptoms
  • 2.7 Eating and drinking difficulties
  • 2.8 Swallowing and saliva problems
  • 2.9 Sleep problems and tiredness
  • 2.10 Bladder and bowel problems
  • 2.11 Falls
  • 2.12 Pain
  • 2.13 Care planning
  • 2.14 What is the impact of Parkinson’s on people’s daily life?
  • 2.15 The impact of Parkinson’s on a family
  • 2.16 Parkinson’s: a personal account
  • 2.17 Summary
  • Glossary

2.1 Introduction

Start of Figure

View description - Uncaptioned figure

End of Figure

Having worked through Section 1 you have a general understanding of what parkinsonism is, what Parkinson’s is, their causes, how many people have Parkinson’s and the average age at which they are diagnosed. You also now know how Parkinson’s is diagnosed and how it progresses.

In this section we look at the following questions:

  • How can I help people with Parkinson’s manage their symptoms?
  • What impact does Parkinson’s have on people’s daily life?

This section starts with a short video recorded by Tracy Jack.In the video, Tracy introduces herself, where she works and what she gained from doing this course. She also talks about the impact of Parkinson’s on the daily lives of the people she works with, and looks at how the course has helped her develop her own practice.

Start of Media Content

Video content is not available in this format.

View transcript - Uncaptioned interactive content

End of Media Content

You can download this resource and view it offline. It may be useful as part of a group activity.

Learning outcomes

The purpose of Section 2 is to give you an understanding of the impact that Parkinson’s can have on an individual and their loved ones. We will discuss both the motor symptoms and non-motor symptoms, and how they can be managed.

By the end of this section you should be able to identify and describe:

  • the common challenges that the main motor and non-motor symptoms present to a person with Parkinson’s
  • how Parkinson’s can fluctuate and how this impacts on the person living with the condition
  • the ways in which these challenges can impact on a person’s quality of life
  • how Parkinson’s can affect a person’s relationship with their loved ones
  • how a person’s preferences are taken into account when supporting them to manage their Parkinson’s.

2.2 How can I help people with Parkinson’s manage their symptoms?

Start of Activity

Exercise 2.1 Symptoms of Parkinson’s

Start of Question

Think about what you learned in Section 1 and the people with Parkinson’s that you have met through your job or personal life. If you were going to meet a person with Parkinson’s for the first time, what would you expect to see in terms of signs and symptoms? Use the reflection log to write down as many signs and symptoms as you can.

End of Question

View discussion - Exercise 2.1 Symptoms of Parkinson’s

End of Activity

In Section 1 we discussed the main motor symptoms of Parkinson’s – tremor, slowness of movement and rigidity. In this section, we will discuss what you can do to help people who may be living with these symptoms. We will then discuss the non-motor symptoms that people may experience and how they can be managed. This guidance will let you know what you can do to make daily life easier for people with Parkinson’s.

2.3 Helping to manage slow movements (bradykinesia)

It might be hard for a person with Parkinson’s to move as quickly as they want to, which can be frustrating for them. Their ability to move might change very quickly, so at times they can move well, but within minutes they might slow down or stop. It’s important to remember that people are not being difficult when this happens.

People with Parkinson’s are sometimes referred to as having a shuffling gait. This is when a person doesn’t walk with a smooth motion and it may look like their feet are sticking to the floor.

Start of Media Content

Video content is not available in this format.

View transcript - Uncaptioned interactive content

End of Media Content

You can download this resource and view it offline. It may be useful as part of a group activity.

Actions to take

  • Give the person plenty of time, support and patience.
  • Keep in mind that they may have trouble getting up from a chair or find it hard to turn over in bed. They might also lack coordination in their hands.
  • Remember that a person may be experiencing a loss of facial expression, so don’t assume they are unhappy.
  • Some people may find it helpful to use walking aids. Before using any equipment, a person with Parkinson’s should get advice from a physiotherapist or occupational therapist who can assess their needs and make appropriate suggestions.
  • Remember that it might also take them longer to answer questions because of speech and swallowing problems related to slow movements or bradyphrenia (slowness of thought).

2.4 Helping to manage tremor

Tremor is one of the main symptoms of Parkinson’s. However, not everyone will develop it – approximately 70% of people with Parkinson’s experience this symptom. A tremor is an uncontrollable shaking movement that affects a part of the body, often the hand. Tremor will usually begin on one side of the body and then progress to both sides as Parkinson’s progresses. The most typical tremor in Parkinson’s is called a ‘pill-rolling’ rest tremor, as it resembles the action of rolling a pill between the thumb and index finger.

A tremor may be more obvious when a person is resting or when they get worried or excited. Sometimes you will hear it referred to as a resting tremor because it usually lessens when a person is carrying out an activity, such as picking up a teacup. A tremor can make some daily activities difficult and can be frustrating. In the video below we can see the impact that symptoms like tremor can have on people with Parkinson’s.

Start of Media Content

Video content is not available in this format.

View transcript - Uncaptioned interactive content

End of Media Content

You can download this resource and view it offline. It may be useful as part of a group activity.

How a tremor progresses

Parkinson’s tremor usually gets worse over time. However, generally this is quite a slow process that occurs over several years.

Start of Extract

‘The slight tremor in my right arm only becomes really noticeable when I get stressed – I’m more embarrassed about revealing my anxiety than the fact that I have Parkinson’s.’

Roger, diagnosed in 2008

End of Extract

Typically, Parkinson’s tremor starts in the fingers of one hand before spreading up the arm. The tremor can also spread to affect the foot on the same side of the body. Occasionally, a tremor starts elsewhere, for example in the foot, and then may spread up the leg and into the arm.

You may notice that some people with Parkinson’s have a tremor on both sides of their body. This is because after several years, the tremor can spread, but this tremor is likely to be milder. In severe cases, the tremor can also spread to involve the jaw, lips, tongue or torso. Some people also experience an ‘internal tremor’. This is a feeling of tremor within the body, but it isn’t noticeable to other people.

What makes a tremor worse?

You may have noticed that some people find their tremor gets worse with anxiety, anger or excitement. However, this is temporary, and the tremor should settle when they have calmed down.

You should be aware that a Parkinson’s tremor can be caused or made worse by some drugs, such as tranquilisers, anti-nausea and anti-dizziness medications. Some anti-asthma drugs, anti-depressants and epilepsy drugs could also make a tremor worse. We will look at which drugs these are in Section 4.

Of course, a person may need these medications, in which case they should seek advice from their GP, specialist or Parkinson’s nurse.

Treating a tremor

Some medications, including levodopa and dopamine agonists, may help to suppress a tremor. Deep brain stimulation, which we will look at in more detail in Section 4, may also help for a small percentage of people.

Because anxiety or stress can make a tremor worse, it’s important that you help people with Parkinson’s to stay relaxed. Complementary therapies may help.

Find out more in the Parkinson’s UK complementary therapies information.

Actions to take

  • Remember that anxiety and stress can make a person’s tremor worse, so try to help people with Parkinson’s stay calm and relaxed.
  • If you think a person’s tremor is getting worse, their specialist or Parkinson’s nurse may be able to suggest changes to their drug treatment that will improve this symptom.
  • Make sure medication is taken on time.

Find out more in the Parkinson’s UK tremor information sheet.

2.5 Helping to manage stiff, rigid or frozen muscles

Start of Figure

View description - Uncaptioned figure

End of Figure

Simple movements such as getting up from a chair, rolling over in bed, moving fingers to write or fastening a button can be difficult, frustrating and sometimes painful for someone with Parkinson’s. Stiff and painful joints, especially shoulders, are common.

There are two types of rigidity:

  • ‘lead pipe’, when both arms and legs are very rigid and held quite tightly to the body
  • ‘cog wheel’, characterised by a clicking feeling as the limb is being bent – it feels like a cog wheel moving round.

Start of Media Content

Video content is not available in this format.

End of Media Content

You can download this resource and view it offline. It may be useful as part of a group activity.

Start of Box

It is important to check if the person you are caring for is taking or needs pain relief for these symptoms. If you think they do need pain relief, report this to your manager. Generally the person’s GP or Parkinson’s nurse will be able to prescribe adequate and appropriate medication. If this does not help, they may need to see their specialist.

End of Box

Further information is available in the Parkinson’s UK information sheet on pain.

People with Parkinson’s can experience problems with facial expression because of difficulty controlling stiff facial muscles. Sometimes people may make expressions that they didn’t plan to make, or they find it difficult to smile or frown. This can make it hard to express how they feel about a situation or something that another person has said. It can also affect people’s confidence in social situations. We automatically read people’s faces and respond appropriately. When you are talking to someone with Parkinson’s remember to be aware that they may be feeling differently from how they look.

Some people with Parkinson’s will suddenly freeze when making a movement like walking. Freezing often happens when something interrupts or gets in the way of a sequence of movements. Many people with Parkinson’s describe freezing as times when their feet feel ‘glued to the ground’. They might not be able to move forward again for several seconds or minutes.

Some people may feel like their feet are ‘frozen’ or stuck, but that the top half of their body is still able to move. They might freeze when they start to walk or when they try to turn around. But freezing does not just affect walking – some people freeze during speaking or during a repetitive movement, like writing or brushing their teeth.

Freezing can get worse if a person is worried, in a place they don’t know or if they lose concentration. Not knowing if and when you might freeze can cause anxiety for people and have an impact on what social activities they choose to do. If a person has trouble starting a movement, this is sometimes called ‘start hesitation’. They might freeze when trying to step forward just after standing up, or when they lift a cup to drink, when they start to get out of bed.

Start of Extract

‘Like a lot of people, I use cues like lines on the pavement, or patterns in the carpet. I use a walking stick to walk and sometimes I hold the stick in front of me and aim to hit the walking stick with my foot.’

Linda, diagnosed in 2002

End of Extract

Freezing can also happen with thought. Some people find this when they are trying hard to remember something in particular, for example trying to remember names.

Where and when it can happen

People with Parkinson’s are most likely to freeze when they are walking, as walking is a series of individual movements that happen in a particular order. If one part of the sequence is interrupted, the whole movement can come to a stop.

People are also more likely to freeze when walking towards doorways, turning or changing direction, in crowded places, or when their medication isn’t working very well. It’s more likely to happen if a person has had Parkinson’s for some time, and if they have been taking levodopa drugs for a number of years. But freezing can be experienced by people who are not taking levodopa, so it is not just a side effect of medication.

Is freezing the same as going ‘off’?

Freezing is not the same as being ‘on’ or ‘off’. Some people with Parkinson’s have ‘on’ and ‘off’ periods, when they suddenly switch from being able to move (on) to being unable to move without difficulty (off). This happens when their medication is working well (on) and then when it wears off before the next dose is due (off). Some people may stop moving altogether. Someone with Parkinson’s might change from ‘on’ to ‘off’ very quickly, like a switch.

There are different ways of managing freezing and ‘on/off’ swings, so they must be seen as separate problems. During ‘off’ periods, people with Parkinson’s will hardly be able to move at all, so walking, going upstairs or reaching for a cup will be difficult. But when they freeze, it only affects certain movements, so they may not be able to walk, but can still reach for a cup. We will revisit switching between ‘on’ and ‘off’ in Section 4.

Treating freezing

Treatments for freezing may include changes to a person’s medication regime, occupational therapy and physiotherapy. You may be one of these therapists or you may be able to ask for a referral to them. Deep brain stimulation may also help some people.

Techniques to help people experiencing freezing

There are some methods that can ‘cue’ people to trigger them to move again. You may be able to improve someone’s mobility and reduce anxiety by introducing cueing techniques. These are listed in our information sheet Freezing in Parkinson’s.

Find out more in the Parkinson’s UK freezing information sheet.

Actions to take

Find out if the person has any problems with freezing by observing them or asking them. If they do, report the problem to your manager. They may need changes to their medication or they may benefit from seeing a physiotherapist.

  • For some people it is the start of a movement that is hard, such as taking the first step to walk. A physiotherapist can give tips to help with this and advise on ‘cues’.
  • These can include counting steps and using trigger words to encourage movement.
  • If you notice the person with Parkinson’s you care for is regularly freezing, you can arrange a medication review with their GP, specialist or Parkinson’s nurse.
  • Make sure the person is receiving their medication on time, every time. (You will learn more about the importance of medications management in Section 4.)
  • Encourage people to take regular exercise, especially as evidence shows that increasing exercise can help improve symptoms. This can help to strengthen muscles, increase mobility in their joints and build up their general fitness and health.

2.6 Non-motor symptoms

People living with Parkinson’s can experience a range of non-motor symptoms, such as sleep, mood and memory problems, which can often have a greater impact on their lives than movement difficulties. Non-motor symptoms are present at all stages of the condition but they can dominate in the complex phase of Parkinson’s.