Living with (1) | NICS Well

A diagnosis of Parkinson's disease is life changing. You'll need long-term treatment to control your symptoms, and you may eventually have to adapt the way you do simple everyday tasks.

Everyone's experience of living with Parkinson's is different, but there are lots of issues and challenges shared by many people living with the condition.

You may find some of the advice below helpful if you have been diagnosed 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 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 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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Healthy eating

Health and fitness

Parkinson's UK: diet and Parkinson's

Parkinson's UK: exercise and Parkinson's

Relationships and support

Being diagnosed with a long-term condition like 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 as well.

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's 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 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 chat room.

Care and support services

It's worth taking time to think about your specific needs and what would help you achieve the best quality of life.

For example, you may wish to consider equipment, help in your home and home adaptations.

Parkinson's UK

Parkinson's UK is the main Parkinson's support and research charity in the UK.

They can offer the support and advice you may need if you're living with Parkinson's disease, and can let you know about support groups in your local area.

You can contact them by:

calling their free confidential helpline on 0808 800 0303 (Monday to Friday, 9am to 7pm, and 10am to 2pm on Saturdays)
emailing 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 does not mean you have to stop working. Many people with the condition keep working for years after their diagnosis.

You may find it hard to cope financially if you do have to stop work or work part-time because of your condition.

But you may be entitled to one or more of the following types of financial support:

You're entitled to Statutory Sick Pay from your employer if you have a job but cannot work because of your illness.
You may be entitled to Employment and Support Allowance (ESA) if you do not have a job and cannot work because of your illness.
You may be eligible for Personal Independence Payment (PIP), which replaced the Disability Living Allowance (DLA), if you're aged 64 and under and need help with personal care or have walking difficulties.
You may be able to get Attendance Allowance if you're aged 65 or over.
You may be entitled to Carer's Allowance if you're caring for someone with Parkinson's disease.
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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Benefits for carers

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'll 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're fit to drive.

Want to know more?

GOV.UK: driving with a disability or health condition

Parkinson's UK: driving

Complex Parkinson's disease and palliative care

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

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

As Parkinson's disease progresses, you'll be invited to discuss the care you want with your healthcare team as you near the end of your life. This is known as palliative care.

When there's no cure for an illness, palliative care tries to alleviate symptoms, and is also aimed at making 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 or in a hospice, residential home or hospital.

You may want to consider talking to your family and care team in advance about where you'd like to be treated and what care you wish to receive.