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Living with Parkinson's

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Living with Parkinson's Living with Parkinson’s 1 This booklet is for people who are looking for in-depth information about how Parkinson’s may affect their day-to-day lives – and how to manage the condition. It covers aspects such as treatments, relationships, self-management, work and travel. Everyone’s experience of Parkinson’s is different, and how the condition may affect your day-to-day life can vary. By providing practical information about life with Parkinson’s, we hope this guide will answer some of your questions and help you to take control. Through the voices of others with the condition, we hope it will provide some inspiration to encourage you to continue living life to the full. It also has information that may be helpful for family members, carers and friends. Contact details for all of the organisations mentioned, details of how to order other resources and a list of words and their meanings can be found at the back of this booklet. Contents Types of Parkinson’s ..................................................................................... 5 Healthcare professionals ............................................................................ 15 Medical treatments ............................................................................... 25 Emotions and mental health .............................................................. 34 Helping yourself ..................................................................................... 41 Relationships ............................................................................................ 49 Being a parent or grandparent .......................................................... 57 Living on your own ................................................................................ 63 Speaking, writing and communicating ........................................... 67 Independence and daily living ........................................................... 73 Diet and exercise .................................................................................... 83 Travel and leisure ................................................................................... 91 Work and money .................................................................................... 99 Information for carers ......................................................................... 105 Does Parkinson’s research offer hope for the future? ............ 109 Finding out more about Parkinson’s ............................................... 111 More information and support ......................................................... 117 Index ........................................................................................................... 131 4 Types of Parkinson’s What is parkinsonism? What is Parkinson’s? Parkinsonism describes a range Parkinson’s is a progressive of conditions whose main symptoms neurological condition. People include tremor, stiff muscles and with Parkinson’s don’t have enough slow movements. of the chemical dopamine because some of the nerve cells in their brain Parkinson’s, also known as that make it have died. Without idiopathic Parkinson’s, is the most dopamine, people can find their common form of parkinsonism. movements become slower, so Idiopathic means that the cause it takes longer to do things. is unknown. Most people with parkinsonism have Parkinson’s, but What causes Parkinson’s? other types include multiple system We don’t yet know exactly atrophy (MSA) and progressive why people get Parkinson’s, but supranuclear palsy (PSP). researchers think that a combination of genetic and environmental factors Find out more: see our information cause dopamine-producing nerve sheet Types of Parkinson’s. We cells to die. offer support to everyone with parkinsonism, but if you’ve been diagnosed with MSA, you can Can certain types also contact The Multiple System of medication cause Atrophy Trust. If you’ve been Parkinson’s? diagnosed with PSP, you can There is a risk that some also contact the PSP (Europe) medications used for other Association. See the ‘Useful conditions, such as drugs used contacts’ section on page 118. to treat serious mental health problems, dizziness, nausea and high blood pressure, can bring on Parkinson’s-like symptoms. This 5 type of parkinsonism is called drug- The symptoms most often induced parkinsonism. This happens associated with Parkinson’s are: with drugs that block dopamine (the chemical that is in short supply in the Tremor brains of people with Parkinson’s). Parkinson’s can cause some people’s If you’re worried about the drugs hands and bodies to shake. It you are taking, speak to your GP. usually begins in one hand or arm. If you have a tremor, you will be Find out more: see our information able to notice it more easily when sheet Types of Parkinson’s. your affected body part is resting, or if you are angry or excited. How many people have This is known as a resting tremor. Parkinson’s? Your tremor may decrease or About one person in every 500 has stop altogether when the body Parkinson’s. That’s about 127,000 part is used. This is the symptom people in the UK. Most people who that many people associate with get Parkinson’s are aged 50 or over, Parkinson’s, but not everyone but younger people can get it too. with the condition has a tremor. Find out more: see our information What are the symptoms sheet Tremor and Parkinson’s. of Parkinson’s? Not everyone with Parkinson’s has Rigid or stiff muscles the same symptoms. You won’t Rigid muscles can make it hard to experience all of the possible do everyday things and can be very symptoms and they won’t happen painful. You may have problems in a particular order. turning around, getting out of a chair or making fine finger movements Everyone with Parkinson’s is such as fastening buttons or touch- different, so how a symptom typing. Some people find that their affects you, the time the condition posture becomes stooped or their takes to progress and how it is face becomes stiff, so it’s harder treated may be different for you to make facial expressions. than for other people with the condition. Many people also find Slowness of movement that how the condition affects You may find that it gets harder to them can change from day to day, make movements and that they and even from hour to hour. take longer. Some people’s arms 6 stop swinging when they walk, their low and isn’t working so well. When heel doesn’t hit the ground smoothly you next take your medication, your and they take smaller steps. These symptoms may be less noticeable symptoms may be mild in the early because you are ‘on’ again. stages of Parkinson’s, but this can change as the condition progresses. Find out more: see our information You could also have problems with: sheets Falls and Parkinson’s, Foot care and Parkinson’s, Freezing y balance and walking – this can in Parkinson’s and Wearing off sometimes lead to falls and involuntary movements (dyskinesia). y freezing – this is when people with Parkinson’s stop suddenly What are the other while walking or when starting symptoms of Parkinson’s? a movement. If you freeze, you For a long time, Parkinson’s was may find you’re not able to move seen as a condition that mainly again for some time affected movement. But symptoms that aren’t directly You may find that your symptoms are related to movement are very worse during an ‘off’ period, when common – these are called non- your Parkinson’s medication level is motor symptoms. 7 Everyone with Parkinson’s has Find out more: see our booklet a different experience of the Looking after your bladder and condition, and it’s important to bowels when you have Parkinson’s. remember that not everyone will experience all of these symptoms. Dental problems The speed at which the condition It’s important to keep your mouth develops and how strongly you and teeth healthy. You may experience any symptoms also experience problems such as excess changes from person to person. saliva and dribbling, or a dry mouth. Some other symptoms you may Movement problems may make experience include the following. it more difficult to clean your teeth or dentures or to get to the dentist. Anxiety People with Parkinson’s can often Find our more: see our information experience feelings of anxiety or sheet Dental health and Parkinson’s. panic attacks. Mood changes may be caused by your medication level. Depression If you’re ‘on’, you might feel better, This is common in Parkinson’s. but if you’re ‘off’, your negative The symptoms of depression include thoughts may increase. low mood, lack of sleep, problems with appetite, trouble concentrating Find out more: see our information and a lack of energy. Depression sheet Anxiety and Parkinson’s. may be difficult to recognise as many symptoms overlap with the Apathy symptoms of Parkinson’s itself. You may not feel like you want to do very much. You may be content Find out more: see page 36 to stay at home and do very little and read our information sheet without necessarily feeling sad. Depression and Parkinson’s. Bladder and bowel problems Excess saliva and swallowing Not everyone with Parkinson’s will problems experience these, but difficulties If you’ve had Parkinson’s for several including incontinence and years, you may find it hard to constipation can affect some people. swallow. This can cause problems with excess saliva and problems with eating food and taking medication. 8 Find out more: see our information Sleep and night-time problems sheets Eating, swallowing and saliva You may experience problems control
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