Support for family and friends
If a friend or family member has been diagnosed with Parkinson's it's normal to have a lot of questions, thoughts and feelings.
What do we need to do next?
For drivers, it's a legal requirement to tell the DVLA (in England, Scotland and Wales) or the DVA (in Northern Ireland) that they have Parkinson's.
Having Parkinson's doesn't necessarily mean that people have to stop driving, but they may need a medical or driving assessment.
Find out more about driving and Parkinson's.
Having Parkinson's can affect any insurance policies people may have. Drivers must tell their car insurance company that they have Parkinson's. And other insurance such as travel insurance can be affected.
Support is available if you're worried about money and the financial impact of Parkinson's, so it's important to find out what you might be entitled to.
Find out more about money, grants and benefits.
Find out about looking after yourself and the support you need.
If someone close to you is diagnosed with Parkinson’s, you’ll go through a range of emotions. It can be difficult to take stock of your feelings and come to terms with how it now fits into your life.
It’s common for you both to experience similar feelings, including:
- denial, where you find it hard to accept the situation, or feel it isn’t fair
- fear about the future or worries about practical things, including your finances and care needs
- anger – you may question why this is happening to you
- guilt – you may feel you should be doing more for your loved one, or worrying that you’re more concerned about the effect on your own life
- frustration – wondering whether you could be doing more for them
- feelings of isolation and uncertainty – you’re not sure where to turn or how you’re going to cope with the situation
- confusion about the changes to your role in your relationship
It can also be difficult if you and the person with Parkinson’s are at different stages in coming to terms with the diagnosis. One of you may wish to face it and gather the information you need to get on, while the other may not feel ready to – and that’s okay.
Dealing with change can take time. You may need support to:
- understand what Parkinson’s is and how if might affect you
- live with the changes it might bring to your personal relationships, relationships with others and your working life
- manage the stress Parkinson’s may create
- prevent Parkinson’s from taking over your life
Talking to others can help at this stage. Our information below goes into more detail about who to turn to for support.
A loved one’s diagnosis of Parkinson’s can affect your mood and emotional health.
Because of this, you should try to look after your mental health as much as you can.
This can be difficult, especially as symptoms of Parkinson’s can be unpredictable. But it's important to remember that taking care of yourself and having a good quality of life will mean you’re better able to support the person with Parkinson's.
- Try to take a break when you need it – make sure you don’t neglect your own health and quality of life, and accept support from others. Try to keep your social life as normal as possible and do things you enjoy.
- Help yourself to relax – meditation, yoga or massage are just some ways to
relax, but find what suits you best. Activities that absorb your concentration, such as gardening or reading can be therapeutic.
- Talk to other people – join online support groups, forums or check what is available to you locally.
- Speak to your employer – if you’re still working, you might wish to tell your employer about your circumstances.
- Don’t shut off from family and friends – they will hopefully be there to support you where they can.
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Get advice and information – for example, on benefits, equipment and support – to help make tasks easier. Call our helpline for support on 0808 800 0303 or email [email protected]
When someone close to you is diagnosed with Parkinson’s, it’s easy to feel isolated, alone or cut off. Getting emotional support from others and staying connected is important and can make a difference to how you feel.
Think about:
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using social media. Sites like Facebook have communities you can join and connect with others. You might like to join the Parkinson's UK Facebook Community Group, where you can talk to others in a similar situation.
- the Parkinson's UK forum. This is a very active space for family, friends and carers to share tips, advice or to get emotional support.
- use apps like FaceTime, WhatsApp, Skype or Zoom to stay in touch with loved ones if getting out is difficult
- whether there are any Parkinson’s UK local groups in your area, or Parkinson’s cafes. Both offer places to meet like-minded people and get face-to-face peer support.
- getting professional help, such as counselling or cognitive behavioural therapy (CBT), if you need to talk to someone about how your feelings are affecting your mental health and wellbeing.
It's important to prioritise your own health needs.
- Make sure you attend your regular check-ups and screenings.
- If you are concerned about your health, don’t be afraid to talk to your GP about any issues you might be having, so that any problems are managed as quickly and effectively as possible.
- A healthy diet and staying active are as important for you as they are for the person diagnosed.
Your GP will be the first stop when accessing health and social services.
Be honest about your needs, your feelings, and what you think would help.
It's important to inform your GP that you are supporting someone with Parkinson's. Not many people are aware that by letting your GP know you may be entitled to extra support, such as flexible appointments and free flu jabs.
If your loved one has recently been told they have Parkinson’s, you may be feeling unsure about how to approach the diagnosis. Here we share insights from others who have been in the same situation.
How do you look after yourself if you look after someone with Parkinson’s? What keeps you going? What makes life easier? Here, you share your tips for other family, friends and carers of people with Parkinson's.
Les lives in rural Scotland with his wife, Jo, who has Parkinson’s. Here he describes how they’ve adapted to life with the condition.
Join our newly diagnosed online support group for family, friends and carers
The informal online sessions are a chance to talk with people in similar situations, share experiences, and support each other.
They're aimed at family, friends and carers of someone diagnosed in the past 3 years, and are facilitated by volunteers with caring experience.