What's it like to have a mum with Parkinson's?
"Cooking, cleaning and helping out. The little things count."
Louisa's sons talk about what they do for their mum.
Parkinson’s is a complicated condition, but before we go on to talk about it in depth, there are 3 things you should know:
Parkinson’s affects the brain and movement
Parkinson’s is a medical condition caused by nerve cells in the brain dying. These nerve cells make a chemical called dopamine, and a lack of dopamine affects normal movement.
People with Parkinson’s move more slowly and stiffly. They may also have a tremor or shake, usually in one arm or hand. Their condition can change from day to day, or even hour to hour.
Sometimes, their muscles stop working altogether and they ‘freeze’ in one position – sometimes just for a few seconds, or at other times, for several minutes.
The shortage of dopamine causes other problems, too. These can include daytime sleepiness, anxiety, depression, poor memory, problems going to the toilet and falls.
Parkinson’s affects everyone differently
In the UK, around 145,000 people are living with Parkinson’s. Most people who get Parkinson's are aged 50 or over but younger people can get it too.
As the amount of dopamine in the brain is gradually lost over many years, Parkinson’s will get worse. But the symptoms someone has and how quickly their Parkinson’s develops will be different from one person to the next.
Parkinson’s can be treated
While there is no cure for Parkinson’s at the moment, there are drugs that can help control the main symptoms, including tremor, or problems with balance and co-ordination.
There are other therapies that can help. And for some people surgery can help with symptoms.
Find out how Parkinson's is treated further down the page.
Why my family?
We don’t know exactly why people get Parkinson’s and there doesn’t appear to be any single cause. We know it’s not infectious (so you can’t catch it, like a cold) and it’s no one’s fault that they get it.
Will I get it?
It’s highly unlikely. The cases where it’s been found in more than one family member are very rare.
Does Parkinson’s cause death?
Generally speaking, how long people live is not greatly affected by Parkinson’s. The drugs used to treat it are very good at controlling movement problems, and many people carry on working and doing the same things they did before they had it.
However, if someone’s symptoms get worse over a period of time, it can make them less able to get around and more likely to pick up infections.
Is it the same as dementia?
No. People with dementia have symptoms including memory loss, and problems with understanding, communicating and completing everyday tasks.
Although Parkinson’s is also a condition that affects the brain, it’s not the same as dementia. Most people with Parkinson’s continue with activities and have a healthy social life.
Also, having Parkinson’s doesn’t mean someone will get dementia. As people with Parkinson’s get older, the chances of them developing dementia do get higher, but not everyone gets it.
The symptoms and signs of Parkinson’s develop slowly. They can have a lot in common with other medical conditions, so it can take a long time until a specialist doctor can definitely tell someone they have Parkinson’s.
Your parent, grandparent or relative will be told they have Parkinson’s by a doctor who specialises in Parkinson's. He or she might start them on a drug treatment straight away to help with the symptoms.
Some people may be shocked at finding out they have Parkinson’s. Others may feel relieved to find out what’s causing their problems. Another reaction can be disbelief. Your parent, grandparent or relative may try to ignore the fact that they have Parkinson’s, especially if their symptoms are mild.
- Remember that for many people with Parkinson’s, the condition will progress very slowly. It may be a long time before your relative’s symptoms make a big difference to their everyday life.
- Parkinson’s UK supports research into Parkinson’s and scientists are constantly looking at ways to improve treatments and, ultimately, to find a cure for the condition.
- Everyone reacts and feels differently when someone they love has a condition like Parkinson's. It's OK to feel sad, angry, frustrated or just numb about it.
- You are not alone. There are other young people out there who have parents or relatives with Parkinson’s or similar conditions, and you can find and talk to them (see below).
- There are also other organisations and professionals you can talk to (see below).
- You might find it helpful to keep a journal and write down your thoughts.
- Try not to worry or feel guilty. It’s important to keep a balance in your life. This means not constantly thinking about Parkinson’s, or trying to forget it exists. You can still care about your loved one, and enjoy going out and seeing your friends.
- Talking – with your relative who has Parkinson's or with another member of your family – can make you feel better.
There is a long list of Parkinson’s symptoms, but not everyone with Parkinson’s has them all or the same combination.
People’s symptoms may also change often. Sometimes this can happen very quickly. Everyone’s experience of Parkinson’s is different – that’s partly why it’s difficult to diagnose.
There are also symptoms that are caused by Parkinson’s drugs.
Parkinson’s mainly affects movement. The main problems are:
People with Parkinson’s have trouble starting movements and it takes longer for them to do things. Sometimes they can’t move at all for a period of time. This is called ‘freezing’.
They can also lose their balance easily and lack co-ordination.
Parkinson’s can stop the muscles from stretching and relaxing. This makes the muscles painful and they may cramp.
This is one of the most noticeable signs of Parkinson’s, but as mentioned earlier, not everyone will get this symptom.
It can make everyday tasks difficult, from using a computer mouse to eating and drinking. It usually gets worse when someone is stressed or excited.
Problems with movement can mean people with Parkinson’s:
- have difficulty with tasks that need small hand movements, like writing, doing up buttons and shaving
- have a weak grip, making it difficult to hold cutlery, pens and so on
- are unable to walk long distances
- can lose balance, trip and fall
- can find it hard to carry out day-to-day movements, such as rolling over in bed, or getting in and out of the bath
As well as difficulties with movement, people with Parkinson’s might have other symptoms, such as tiredness, pain, depression, anxiety, and problems with memory, swallowing, sleep and going to the toilet.
These are called ‘non-motor symptoms’ and they can have a big effect on your parent's, grandparent’s or family member’s life.
Parkinson’s symptoms may become more noticeable if the person with the condition is unwell or becomes stressed, worried or nervous.
It’s important that the person with Parkinson’s eats healthily, exercises, keeps up with their social activities, and tries to keep a positive attitude.
Find out more about all the symptoms of Parkinson's.
The main way of treating Parkinson’s is with drugs. There are several types of drugs available and they act in different ways to manage some of the symptoms. People with Parkinson’s usually have to take drugs regularly, often at the same time every day.
Although Parkinson’s drugs work really well at controlling the symptoms of Parkinson’s, they also have side effects. These usually happen after someone has been taking the drugs for a long time.
Drug regimes are often very complicated, and may need changing as Parkinson’s progresses, or to reduce any side effects.
Find out more about the drug treatments for Parkinson's.
There is a type of surgery called deep brain stimulation that can help control some Parkinson’s symptoms. It’s normally only offered when someone has had Parkinson’s for 5 years.
As with all surgery, there are risks involved, and it’s not suitable for everyone with Parkinson’s. People with the condition will need to be assessed to find out whether deep brain stimulation is right for them.
It’s mainly used to treat people whose Parkinson’s can’t be managed well by drugs.
Find out more about deep brain stimulation for Parkinson's.
As well as drugs, there are therapies that can help keep people with Parkinson's active and independent.
- Physiotherapy – uses exercises to strengthen muscles and improve flexibility.
- Speech and language therapy – can help people talk more clearly and help make swallowing easier.
- Occupational therapy – looks at the everyday tasks that a person with Parkinson's finds difficult, and comes up with ways to make them easier.
Your parent, grandparent or other relative may see different health professionals at different times, either at their home or at a clinic, hospital or other setting.
The professionals can include a doctor or GP, a Parkinson's nurse, an occupational therapist, physiotherapist and speech and language therapist.
They may also see a Parkinson's specialist one or more times a year.
Changes in the family
You may see little or no change in your parent, grandparent or family member after they find out they have Parkinson’s. But they may have to rest often and they will do things more slowly than they used to, like walking and talking.
This can be frustrating for them and they may express that. At some point they may become upset, short-tempered and tired.
Doing things differently
Other things may change. Your parent, grandparent or relative might have to give up work or an activity they have always enjoyed, or change it for something else.
Sometimes, life in a family affected by Parkinson’s can be frustrating. For example, trips might be cancelled suddenly, or your parent might not be able to drive you somewhere.
On the plus side, Parkinson’s can help bring families closer together. You may find that you talk and help each other more.
Many people with Parkinson’s adopt a positive way of thinking – they want to get the most out of life and not let Parkinson’s beat them. They take up new challenges, do more sports and activities, and become involved with local groups and fundraising.
When someone you love has a medical condition such as Parkinson’s, you may experience more difficult or extreme emotions, including sadness and anger. There is no right or wrong way to feel. Everyone is different.
If things are getting you down it’s important to talk about it and find ways to help you feel better.
Having a creative outlet, like writing a blog or drawing, is a good way to express your emotions. Physical exercise can make you feel good, too, as it makes the body release chemicals that cheer us up. Plus, it’s a good way of keeping in touch with friends.
Tips on managing emotions
You may feel scared about what the future will bring for you and your family. If your parent, grandparent or family member is moody or down, you may be afraid of upsetting them.
Talking about your fears and taking time out to have fun and forget about your worries can help. Don’t be afraid to ask the person with Parkinson’s about the condition or how they feel – they may be pleased to have the chance to talk about it.
It’s natural to feel angry. Accept that it’s OK to feel angry, notice how it makes your body feel but then find a way to move on from it. Take some deep breaths, and choose a practical way to distract yourself from the angry feelings.
Physical activity is especially good as a distraction from anger because when you exercise your body releases chemicals that make you feel good. It is especially good as an outlet for anger, because it gets rid of the tension in your muscles.
Once you feel calmer you could try writing down any negative thoughts you still have then screwing up the paper and throwing it away. You could finish by writing down a few positive thoughts and keeping them on your desk or in your bag.
Write down your worries or talk to people you trust, like a teacher or family member.
You may feel as though you shouldn’t enjoy the normal things in life when your parent, grandparent or relative has Parkinson’s.
It's natural to feel this way but try not to let these feelings stop you from doing things. Try to remember that your relative wants you to be happy and carry on with your life as you did before. It might help them to hear about things you’ve been doing. Treat yourself to some good times as they will benefit everyone.
Jealousy and resentment
It’s natural to think, ‘Why me? Why my family?’ and feel jealous of others who aren’t affected by Parkinson’s. It can be especially hard if you have more to do at home if your parent, grandparent or family member is tired or unwell.
Try not to focus on negative feelings. Instead, think about things in your life that you’re happy with and remember that everyone faces problems at some point in their lives.
You may think that no one understands what you’re going through. But there are many young people whose parent, grandparent or other relative has Parkinson’s or another medical condition. It can help to join local groups or online forums.
You may also feel lonely or left out if your parent, grandparent or relative won’t talk to you about Parkinson’s. It may be that they’re just trying to protect you by not telling you everything. This might feel frustrating for you and that’s a natural reaction to have. But remember that Parkinson’s affects everyone differently. Some people may take time to adjust to the condition and feel comfortable talking about it.
If you can’t talk about it to your relative with Parkinson’s, try to talk to another family member. Sharing how you’re feeling with the family can be a good way to support each other.
You may cry sometimes, want to be by yourself or feel run down. All this is normal.
But remember you need to look after yourself properly, and it’s important that you have fun and laugh when you get the chance. Laughter is important for everyone, and it’s healthy too!
Try to keep doing the things you like and that make you feel good, from going out with friends to playing sport. If the sadness doesn’t go away, tell someone you trust.
You could make a ‘comfort list’ of things that help when you feel sad or when you’re hurting inside. This could include things like finding somebody to talk to, listening to music, spending time with your pet, playing your favourite sport or doing exercise, going for a walk, having a relaxing bath or playing on the computer. You can look at this list and choose something to take your mind off your feelings.
If your parent, grandparent or family member has a tremor or difficulty moving, it can make people stare and ask questions. Don’t feel bad if you’re embarrassed.
Remember that not everyone understands or has even heard of Parkinson’s. You don’t have to explain anything you don’t want to.
Learning about Parkinson’s and what help is available can reduce your worries and fears. If you have questions, then ask your parent or another trusted adult.
You could ask to go with your family member with Parkinson’s when they see their doctor or consultant. You could make a list of the questions you would like to ask these professionals.
There are also several organisations that offer listening services for young people – see below for more information.
You may find it helpful to speak to a counsellor.
A counsellor is someone who you can talk to one-to-one and confidentially. You can talk with them about concerns or problems you might have. The counsellor will help you work through your issues and give you skills and strategies to deal with your feelings. They support you without making you feel judged. Many young people say that seeing a counsellor can make them feel more positive, confident and in control of their life.
If you want to speak to a counsellor, then your GP or Parkinson’s nurse can help find one for you. Or, your school may have a counsellor who comes in to listen to students’ problems.
School and friendships
Parkinson’s can seem like such a big problem you may find day-to-day activities hard to get on with.
If you’re struggling to get up for school, can’t concentrate in class or finish homework, then you need to tell your school. They can help get you the support you need.
You might feel awkward telling your friends that a relative has Parkinson’s, or be worried that they won’t understand. Maybe you can’t or don’t want to go out as much as before.
Sharing your problems with friends can help you feel better. It may be that not everyone will understand what you’re going through, but some will.
If you want to help people at your school understand more about Parkinson’s, you could ask a teacher to bring up the subject in a class at school.
If you're under 18 and help to support a parent, grandparent or relative with Parkinson's, either on your own or with other family members, you're a 'young carer'.
Although you might not help your parent or relative directly, you may still need extra support, such as:
- someone to talk to. This could be another young person or someone you trust, such as a doctor, teacher or a family friend
- information, including where to go for advice and support
You may not feel like you want to talk about what you're going through, but it's important to find someone to share your worries with.
Although caring can be a really good thing to do – you’re helping someone you love and learning skills that will be useful later in life – it may have an effect on your school work and social life.
No one – whether they're a young person or an adult – has to be a carer if they don't want to be. Accepting this help gives you a better chance of looking after your own health and wellbeing.
You, or your parent or guardian, should tell your GP that you are a young carer. They can help you access any support you may need.
You, or your parent or guardian, should also ask for a carer's assessment. This is organised by your local authority.
An assessment will look at the needs of the person you care for, and how much your caring role affects your everyday life. It can result in extra help being given to your parent, grandparent or relative and more free time and support for you.
An assessment is available to you whatever your age. You can speak directly to your local authority for advice, or ask someone in your family or at school or college to help you do this.
Help with education
Ask your school or college whether they can arrange flexible courses or tuition if this would be helpful.
Your GP may be able to help you with this, or let you know about others who can help.
Young carers' groups
Around the UK, there are many young carers' projects and groups that can give you support and help from other young carers. Some have websites where you can get in touch with each other.
See below for a list of organisations and websites that can help you.
Information for young carers
A children's charity that runs young carers projects across the UK. As well as advice and support you can go to social events and have the chance to meet other carers.
NHS website that offers a free confidential helpline, SMS (text) service, online adviser, and email advice. There is information on young carers’ rights, and advice on looking after a parent.
Support and listening services
Free and confidential 24-hour helpline for children and young people, plus online counselling service.
This organisation offers a confidential 24-hour helpline where you can talk about your feelings or what’s going on in your life. Or you can speak to a volunteer in person at one of 200 branches in the UK or Ireland.
Free, national and confidential helpline for young people under 25 where you can discuss your problems or worries. Webchat, text and email also available, plus online directory to find local services.
Find out about information, advice, counselling and support services for young people in your area.
Offers free leaflets on coping with stress and anxiety, such as, 'When bad things happen'.
Offers a listening ear for young men in Scotland who are feeling sad, lonely or struggling to cope.
Offers support to young people with mental health problems.
"I don’t care that my grandad has Parkinson’s. It shouldn’t define you – it definitely is not how I define him."
Read more from Zoe as she talks about her relationship with her grandad and how Parkinson’s affected both their lives.