Parkinson's disease - Living with 

Living with Parkinson's disease 

A diagnosis of Parkinson’s disease is life changing. You will need long-term treatment to control your symptoms and you may have to adapt the way you do simple daily tasks.

Self-care

Self-care is an integral part of daily life. It means you take responsibility for your own health and wellbeing with support from the people involved in your care. Self-care includes things you do each day to stay fit, maintain good physical and mental health, prevent illness or accidents, and effectively deal with minor ailments and long-term conditions.

People living with long-term conditions can benefit enormously if they receive support for self-care. They can live longer, have less pain, anxiety, depression and fatigue, have a better quality of life and be more active and independent.

Regular reviews

Because Parkinson’s disease is a long-term condition, you will be in regular contact with your healthcare team. A good relationship with the team will allow you to easily discuss your symptoms or concerns. The more the team knows, the more they can help you.

Keeping well

Everyone with a long-term condition such as Parkinson’s disease is encouraged to get a flu jab each autumn to protect against flu (influenza). They are also recommended to get an anti-pneumococcal vaccination, which protects against a serious chest infection called pneumococcal pneumonia.

Healthy eating and exercise

Regular exercise and a healthy diet are recommended for everyone, not just people with Parkinson’s disease. They can help prevent many conditions, including heart disease and many forms of cancer. Eat a balanced diet containing all the food groups to give your body the nutrition it needs. Exercising regularly can help relieve stress and reduce fatigue.

Parkinson’s UK

Parkinson’s UK is the Parkinson’s support and research charity.

Their contact details are as follows:

They bring people with Parkinson's, their carers and families together via their network of local groups, online resources and confidential helpline.

Their website features all the latest news, publications and research updates, as well as an online community to share your experiences of living with Parkinson's.

They also provide information and support on every aspect of living with Parkinson's.

Want to know more?

Treating other symptoms hide

As well as the symptoms caused by the condition itself, people with Parkinson’s disease may also experience other symptoms which need to be treated.

Depression

People with Parkinson’s disease often have depression. This is caused by the changes in the levels of chemicals in the brain. There are many different treatment options for depression. Discuss which is the best for you with your healthcare team.

Psychosis

Psychosis is a mental condition where somebody is unable to distinguish between reality and their imagination. Sometimes, medication you are taking to treat the symptoms of Parkinson’s disease can cause psychosis. As with all medication for Parkinson’s disease, do not stop taking it suddenly. If you have any concerns, talk to your healthcare team.

Dementia

One in five people with Parkinson’s disease will develop dementia as they get older. Any treatment of dementia should take into account your Parkinson’s disease. Your healthcare team can discuss this with you.

Sleep problems

Many people with Parkinson’s disease have problems with sleeping. You may be tired in the daytime, have difficulty moving at night or have problems with restless legs syndrome. If you have problems with sleep, talk to your healthcare team. They may suggest a change to your medicine(s) or there may be practical changes that can help.

Falls

Loss of stability in later stages of Parkinson’s disease can lead to falls. There are many ways to prevent falls. Your physiotherapist and occupational therapist may be able to help with this.

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Relationships and support show

Coming to terms with a long-term condition such as Parkinson’s disease can put a strain on you, your family and friends. It can be difficult to talk to people about your condition, even if they're close to you.

Dealing with the deterioration of symptoms, such as increasing difficulty with movement and tremor, can make people with Parkinson’s disease feel very frustrated and depressed. Their spouse, partner or carer will inevitably feel anxious or frustrated too.

Be open about how you feel and let your family and friends know what they can do to help. Do not feel shy about telling them you need some time to yourself, if that is what you want.

Support

If you have questions, your GP or Parkinson’s disease specialist nurse may be able to reassure you. You may find it helpful to talk to a trained counsellor or psychologist, or to someone at a specialist helpline. Your GP surgery will have details of these.

Some people find it helpful to talk to others with Parkinson's disease, either at a local support group or in an internet chatroom.

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Money and financial support show

If you have to stop work or work part-time because of Parkinson’s disease, you may find it hard to cope financially. You may be entitled to one or more of the following types of financial support:

  • If you have a job but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer.  
  • If you do not have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance.
  • If you are aged 64 and under and need help with personal care or have walking difficulties, you may be eligible for Disability Living Allowance
  • If you are aged 65 or over, you may be able to get Attendance Allowance
  • If you are caring for someone with Parkinson’s disease, you may be entitled to Carer’s Allowance
  • You may be eligible for other benefits if you have children living at home or if you have a low household income.

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Driving show

If you have been diagnosed with Parkinson’s disease, you must inform the Driver and Vehicle Licensing Agency (DVLA) and your insurance company.

You will not necessarily have to stop driving. You will be asked to complete a form providing more information about your condition as well as details of your doctors and specialists. The DVLA will use this to decide whether you are fit to drive.

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Advanced Parkinson's disease show

As Parkinson’s disease progresses, you will be invited to discuss with your healthcare team the care you want as you near the end of your life.

What is palliative care?

Palliative care is the support and care of symptoms when no cure for the disease is possible, usually when the person is dying. Your doctor or nurse may suggest you see a specialist or nurse in palliative care, or a counsellor.

A palliative care team will focus on controlling your symptoms, keeping you as comfortable and pain-free as possible, as well as offering physical, psychological, spiritual and social support for you and your family.

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Page last reviewed: 10/05/2012

Next review due: 10/05/2014

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Supporting someone with Parkinson's disease

Tina has Parkinson's disease. In this video, learn about the people who have supported her and continue to help her live with the condition.

Media last reviewed: 21/10/2013

Next review due: 21/10/2015

Long-term conditions

Living with a long-term condition, including healthcare, medicines and support