Your Parkinson’s will affect the daily lives of family and friends too, and how you manage this is a completely personal decision that will be different for everybody.

Your condition is likely to progress gradually, meaning day-to-day life with your loved ones won’t change overnight, so be kind to yourself if you’re struggling to find the words to express how your Parkinson’s is affecting you. It takes time – for your loved ones as well as for you – to adapt as roles change, but it’s really important to talk openly about how you feel instead of bottling up your emotions. It really will make you feel better.

We’ve put together guides for all kinds of communication challenges people may experience with Parkinson’s, from talking to children about your diagnosis to coping with speech problems caused by the condition, and advice about sex and intimacy with Parkinson’s too.

Talking to your family about Parkinson’s

Good communication will make it much easier to adapt to your new situation. Finding the right words can be difficult but it may help if you try to put yourself in the position of the person you are telling – what would you want to be told and how?

Talking to your partner about Parkinson’s

It is likely that your partner will already have noticed changes in your emotions or behaviour, or physical symptoms such as shaking, so it makes sense to share your diagnosis as soon as possible.

They will also probably be concerned about how your Parkinson’s will affect them – for instance, how they might cope as a carer, particularly if they are elderly – but there are organisations and support groups to help you both, so ask your doctor for advice.

As a couple, you can work together to achieve a good quality of life. Your partner will need to understand your symptoms and the support you require. With a little compromise your relationship can continue as it is, or in some cases it may even grow stronger.

If you find yourself in a new relationship it is up to you when you tell your new partner that you have Parkinson’s. There is no ‘right’ time, so wait until you feel comfortable, and just be yourself. Some people may be put off by Parkinson’s, but lots of people won’t.

Talking to children about Parkinson’s

What you tell your children or grandchildren and choosing the right moment to do so will depend on their age and the relationship you have with them. It’s natural to want to protect children from health issues that might scare or worry them, but there’s good reasons to tell them sooner rather than later:

  • Even if you try to hide your condition, children are very aware and are likely to pick up that something is ‘wrong’. Not knowing the details might make them even more worried.
  • As Parkinson’s progresses it will be difficult to hide your symptoms and your children may find out from someone else – and it’s much better that they hear about it from you.
  • Trying to hide your Parkinson’s from your children can be difficult and exhausting for you
  • You may feel relieved to tell your children. Talking with your family may help to ‘normalise’ your situation and make it less frightening for everyone.
  • If you’re a grandparent, it’s best to agree with the children’s parents about how to tell them – the parents might prefer to do it themselves.

The act of telling children about your Parkinson’s doesn’t have to be a big occasion – just find a quiet moment when you have enough time to talk it through. And remember this is just the beginning of the conversation, so reassure children that it’s okay to talk about your condition as time goes on.

Whatever the age of the children in your family, don’t forget to remind them that although you may not be able to do everything you used to do, you still love them just the same.

Talking to young children about Parkinson’s

Younger children often adapt quickly. They will probably ask if this means you’re going to die and are satisfied when they are told no and can go back to their games! Their main concern is usually that their parents (or grandparents) will be there.

Here’s some tips on what to tell them:

  • The younger the child, the simpler the information should be – be specific, clear and honest. Try to avoid medical terms, and use the same kind of language as your child uses when they talk about your condition.
  • Take their lead – they might not be able to process everything at once
  • Be prepared for older children to have more questions – it’s okay if you don’t have the answers.
  • At the end of the conversation, recap what you’ve told them so you can check the children have understood everything correctly
  • Encourage the children to ask questions and talk to you about your condition whenever they want to

One thing younger children might struggle with is the way Parkinson’s symptoms can fluctuate, so sometimes you might be able to join in with an activity, but during “off” periods you might not be able to. This can be frustrating for them so it is important to explain your symptoms if they are old enough to understand.

Some children are also extremely keen to help, but it’s important not to give them too much responsibility, and always show them how grateful you are.

Talking to teenagers about Parkinson’s

Teenagers often react differently – they may feel angry, but this is usually driven by sadness and a wish for you to be well again. They may become self-conscious or seem embarrassed, particularly with their friends, until they notice that people accept you as still the same person. Sometimes they may try to help too much which can cause tension.

They will probably just need a bit longer to understand their emotions and accept the news.

Talking with other people who have Parkinson’s

Sometimes, especially if you’re having communication issues with your family and friends, it can be beneficial to talk to other people who understand. A Parkinson’s support group can allow you to share your experiences, get advice, and make new friends.

Ask your local or national Parkinson’s organisation about any support groups in your area, or for help finding safe spaces online to chat to other people with Parkinson’s, such as forums, social media or blogs.

Managing Parkinson’s as a family

For your family and close friends to support you effectively they will need to understand the changes that come with living with Parkinson’s, and make adjustments so that everyone can  enjoy a good quality of life.

Here are some suggestions that may help you all manage Parkinson’s better:

For all the family:

  • Find out more about Parkinson’s, particularly symptoms, medications and activities that will help support your quality of life
  • Find out about local and national support groups or organisations that can help.
  • Talk to other people with Parkinson’s and their families who have been in a similar situation.
  • Be realistic about what you and they can do and remember that limitations may change.
  • Take your time and don’t try to do things in a hurry as this may lead to tension when things go wrong or don’t happen when you expect them to.
  • Develop a routine that works around the times of day when you are at your best.
  • Try to stay calm; anxiety and stress can aggravate symptoms.
  • Keep doing the things you have always enjoyed as a family – particularly social activities – so that Parkinson’s doesn’t dominate everything.
  • Don’t bottle up emotions – discussing concerns will help you explore solutions together.
  • Check up on any help or benefits you may be entitled to.
  • Adapt your home to make it easier to maintain independence and mobility, e.g. install hoists or grab rails, and use gadgets like vegetable choppers and a microwave.
  • Accept help when it is offered.
  • If you feel that family relationships are becoming difficult, or that children are not coping well, ask your doctor if they can arrange counselling with a trained therapist or counsellor.

For you and your partner:

  • Maintain a sense of independence. You should have time to be alone and do your own thing – this may result in being more relaxed when you are together.
  • Take any opportunity to reverse the caring role.
  • Find mutual activities where you can be equals, for example playing board games or socialising with friends.
  • Keep communicating with each other.
  • Don’t be afraid to look for help – from occupational therapists to couples’ counselling – if you find it hard to sort out problems, and get help before it gets serious.
  • There are many online forums where people openly discuss their difficulties and solutions.

Speech and communication issues with Parkinson’s

Communicating and socialising with others is really important to maintain your emotional wellbeing, confidence and quality of life.

Sadly, Parkinson’s can impact the way you communicate with others: speech, voice, facial expression and handwriting may be affected, and issues can get worse throughout the day as your medication wears off.

The good news is there’s lots of help available, from professional therapists to activities you can try yourself at home.

Speech problems

Parkinson’s can affect your speech in a number of ways:

  • Speech may become fast or slow, rushed, mumbled or slurred
  • Some people notice a stutter or difficulty starting to speak.
  • Voices can become quieter, breathy, hoarse, or change in pitch.
  • Using the telephone and communicating in situations with background noise or a lot of people can be difficult.
  • Your response times may be slower if you find it hard to compose your thoughts

Professional help with speech problems in Parkinson’s

Your doctor may be able to adjust your Parkinson’s medication, but it’s better to seek advice and long-term techniques from a speech and language therapist.

Joining a Parkinson’s choir or singing group can also help with speech issues like volume.

Tips to help speech problems at home:

  • Project your voice by imagining throwing your voice to the other side of the room.
  • Use loudness feedback apps and ask family and friends if the voice you are using sounds a normal level of loudness, or make recordings of your voice to judge for yourself
  • If your voice is fading over the length of a sentence, drive your voice louder to the end.
  • Practice voice projection by reading aloud so you feel more comfortable
  • Slow your rate of speech using the ‘Loud each word’ technique, ensuring you say all the words in the sentence loudly.
  • Make sure you are sitting or standing comfortably, in as upright a position as possible.
  • If you are in a situation where you find communication difficult, try to remain calm and relaxed – stress will only make your symptoms worse.
  • Try to move away from noise or pause the television, and avoid talking to someone who is in a different room.
  • If speech is very difficult, text-to-speech apps might be useful
  • Carry an alert card in your purse or wallet that states you have Parkinson’s and may have difficulty communicating so need to be given time.

Facial expression and body language

Parkinson’s can affect your facial expressions and body language in many ways:

  • They can become slow or reduced.
  • Your face may lack expression, resulting in people misreading how you feel.
  • Facial expressions, such as smiling or frowning, may become difficult.
  • Common gestures, such as nodding, may become harder
  • Involuntary movements (dyskinesia) can make it difficult to control the face and mouth

Help for facial expression, tone of voice and body language problems

A speech and language therapist can address strategies for supporting conversation, for example, practising alternative ways to let people know that you have something to add to a discussion.

A physiotherapist will be able to help you with techniques and exercises to reduce rigidity, strengthen muscles and improve posture to give you greater control over your body language.

Handwriting

You might find your handwriting becomes small, cramped and ‘spidery’, making it difficult to read, or your writing might reduce in size as the line progresses.

Professional help for handwriting issues

An occupational therapist can advise on specialist equipment and tools to improve your handwriting, such as padded pens that are easier to grip, or using a clipboard to stop paper from slipping.

Tips to help handwriting problems at home:

  • When your writing is getting smaller, think ‘big’, exaggerating the size of the letters
  • Try wrapping elastic bands around the pen shaft to give you better grip
  • It is easier to write or type if your body is in a good position, i.e. sitting on a supportive chair and using an ergonomic desk.
  • It may help to stop, breathe deeply and stretch your arms after writing each line
  • If you need to write longer amounts of text on the computer, or write shopping lists or longer messages on your phone, you could try a speech-to-text tool (many devices have this built in now)
  • If you’re struggling to sign cheques, use a credit or debit card instead, which only require your pin number. Many now offer contactless payments for smaller amounts.
  • Let your bank know if your signature changes as a result of your Parkinson’s
  • Set up standing orders or direct debits from your bank account for regular expenditure, or use telephone or online banking.

Intimacy, sex and sensuality

For many people a healthy sex life plays an important role in their quality of life and the quality of their relationship. Physical touch (such as cuddling, kissing, caressing and hugging) is important.

Most couples will experience sex and intimacy problems at some stage in their relationship – from issues like medication, menopause and childbirth.

How can Parkinson’s affect intimacy, sex and sensuality?

Firstly, it’s worth noting that not everyone with Parkinson’s experiences these kinds of problems, so don’t assume that you definitely will.

In Parkinson’s, sex and intimacy can be affected in various ways:

  • Dealing with the emotional toll of diagnosis can cause a lack of self-esteem and desire
  • Motor symptoms, such as rigidity, tremor and bradykinesia may influence your flexibility and may mean that you need to try different sex positions or take a more passive role – this can be difficult for some people to adapt to
  • Falling dopamine levels and unwanted side effects of some Parkinson’s medications can cause or worsen sex and intimacy issues. For example, arousal problems can cause erection difficulties or vaginal dryness and pain.
  • The antidepressants used to treat common Parkinson’s symptoms like anxiety and depression can cause sexual desire to fluctuate, and affect your ability to reach orgasm
  • Some people with Parkinson’s experience compulsive or impulsive behaviours which can include hypersexuality, causing a higher and more intense sex drive.
  • People with Parkinson’s sometimes feel less attractive, and carers also feel uneasy about asking for or initiating intimate activities, leading to communication issues

In short, there are many factors that may be involved and some adjustment will almost certainly be needed for both partners over time, but there’s lots of help available.

Managing sexual problems in Parkinson’s

Movement problems

The physical symptoms of Parkinson’s, such as stiffness and slowness of movement, may affect sexual activity. You can try:

  • Planning intimate activities for the times of day when your medication is working best, and asking your doctor if adjusting your medication may help
  • Experiment with different positions to find ones that are comfortable for you – a physiotherapist or occupational therapist can give suggestions

Fatigue

If tiredness is an issue, you can try:

  • Being intimate or having sex at a different time of the day when you are more alert
  • Taking it in turns to focus on just one partner’s needs per session – so you can give your energy to either giving or receiving pleasure
  • Some fatigue medications, such as amantadine, have been shown to improve sexual function.

Bowel and bladder problems

Fear of incontinence during sexual activity can affect self-esteem and arousal.

  • For urinary incontinence, certain drug treatments may be helpful, as can emptying your bladder and avoiding drinks for two hours before intercourse
  • For bowel incontinence, an enema before intercourse or using an anal plug may help.

Medications

Sometimes a change in medication – such as a medication “vacation”, or removing/altering any antidepressant medication – may help with regaining sexual satisfaction. Always discuss this with your doctor first.

Hypersexuality (compulsive sexual behaviour):

Some people who take certain Parkinson’s medications, like dopamine agonists, experience impulsive and compulsive behaviour. This includes hypersexuality: a preoccupation with sexual thoughts and increased sexual desire, which can also include sexual delusions and hallucinations (such as imagining that a partner is having an affair), or even lead to illegal activities like sexual harassment.

It can be very distressing for the person experiencing it and those around them – so it’s important to ask a healthcare professional for help as quickly as possible. Sometimes, the person experiencing hypersexuality won’t realise they have a problem, so a partner or loved one will have to act on their behalf.

Don’t be afraid or embarrassed to ask for help – this behaviour is treatable, and your healthcare professional will deal with the issue confidentially. This might involve adjusting your medication or referring you to a psychologist or psychosexual therapist.

Decreased sex drive and arousal difficulties

Emotional issues, tiredness, anxiety and depression can all affect sexual arousal in Parkinson’s, and there are many things you can do to help. The most important one is being honest and talking about these issues with your partner, but a doctor can also help.

You should do whatever suits you as a couple, but you could try the following:

  • Take time to relax in the bath
  • Have a sensual massage by candlelight
  • Do something more energetic or playful together to get you in the mood
  • Change your routine, for example have sex in the morning when you’ve got more energy
  • Revive the spark by investing in new lingerie or sex toys, watching pornography or reading erotica
  • Take the pressure off by simply enjoying intimate or erotic touch together – the end goal doesn’t have to be full intercourse every time. Removing this pressure will allow arousal to happen more naturally.

Orgasm problems

This is common in both men and women, especially later in life. If you have problems reaching orgasm, you can try:

  • Relax and take the pressure off – simply enjoy your time together and focus on excitement and pleasure. Reassure each other that it doesn’t matter if one of you doesn’t experience orgasm.
  • Solo or mutual masturbation can help you explore what you find pleasurable
  • Take time to really get to know each other’s bodies and find out what your partner likes.
  • Try sex aids, from pleasing materials like silk, fur and feathers to vibrators and vacuum devices.
  • Some women find pelvic floor exercises help – ask your doctor for examples to try

Asking for help with sexual problems

There are lots of ways healthcare professionals can help:

  • Your doctor can try adjusting your medication, for instance trying different antidepressants
  • Sex therapists can help with a variety of problems, either on your own or as a couple, but ask your healthcare professional for recommendations, especially for sex therapists with experience in Parkinson’s
  • Counselling can help you learn to communicate your needs better
  • Your doctor can also refer you to psychosexual therapy or cognitive behavioural therapy.
  • Websites and forums can also offer advice – but make sure the site and information is from a reputable source