Parkinson's disease - Living with Parkinson's disease

Keeping well

It's important to do what you can to stay physically and mentally healthy if you have Parkinson's disease.

Exercise and healthy eating

Regular exercise is particularly important in helping relieve muscle stiffness, improving your mood and relieving stress. There are many good activities you can do to help keep yourself fit, ranging from more active sports like tennis and cycling , to less strenuous activities such as walking, gardening and yoga.

You should also try to eat a balanced diet containing all the food groups to give your body the nutrition it needs to stay healthy.

Vaccinations

Everyone with a long-term condition such as asthma is encouraged to get a yearly flu jab each autumn. The pneumococcal vaccination is also usually recommended, which is a one-off injection that protects against a serious chest infection called pneumococcal pneumonia.

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Health and fitness
Healthy eating
Parkinson's UK: Exercise and Parkinson's
Parkinson's UK: Diet and Parkinson's

Relationships and support

Being diagnosed 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, may make you feel frustrated and depressed. Spouses, partners or carers 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 any questions about your condition, your GP or Parkinson’s disease specialist nurse may be able to help. You may also 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.

Parkinson's UK

Parkinson’s UK is the main Parkinson’s support and research charity in the UK. They can offer any support and advice you may need if you are living with Parkinson's disease, and they can let you know about support groups in your local area.

Their contact details are:

free, confidential helpline on 0808 800 0303 (Monday-Friday: 9am-8pm, Saturday: 10am-2pm)
email: hello@parkinsons.org.uk

The Parkinson's UK website also features all the latest news, publications and research updates, as well as an online community where you can share your experiences of living with Parkinson's.

Want to know more?

Parkinson's UK: Relationships and family life
Parkinson's UK: Support for you

Work and finances

Being diagnosed with Parkinson's doesn't mean you have to stop working. Many people with the condition keep working for years after their diagnosis.

If you do have to stop work or work part-time because of your condition, you may find it hard to cope financially. However, 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 (ESA).
If you are aged 64 and under and need help with personal care or have walking difficulties, you may be eligible for Personal Independence Payment (PIP), which is the new benefit replacing Disability Living Allowance (DLA).
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.

Want to know more?

Care and support: Benefits for carers and Benefits for the person you care for
GOV.UK: Benefits
Money Advice Service
Parkinson's UK: Work and money for people with Parkinson's

Driving

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.

Want to know more?

GOV.UK: driving with a disability or health condition
Parkinson's UK: Driving

Advanced Parkinson's disease

Advanced Parkinson’s disease is defined as the stage when treatment is unable to consistently control the symptom, or the person has developed disabling dyskinesia (uncontrollable jerky movements).

These problems can still be helped by adjustment or addition of some of the medications used to treat Parkinson’s disease, with supervision by a doctor with a specialist interest in Parkinson’s disease.

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. This is known as palliative care.

When there is no cure for an illness, palliative care tries to make the end of a person’s life as comfortable as possible. This is done by attempting to relieve pain and other distressing symptoms while providing psychological, social and spiritual support for you and your family.

Palliative care can be provided at home, in a hospice, in a residential home or in a hospital. You may want to consider talking to your family and care team in advance about where you would like to be treated and what care you wish to receive.

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