My cerebral palsy and health

Understanding your cerebral palsy can help you take better care of yourself and be more involved in decisions about your healthcare. You should consider making a health summary that you can take with you when you attend adult health services.

We’ve created a template that you can use to start your Health Summary.

Ask your parents and your health professionals questions about your cerebral palsy, your medical history, medications and treatments you received or still receive, and equipment that you use. They can help you to complete your health summary.

You may find it helpful to ask your doctor or other health professional for a written summary of your cerebral palsy.

It might also be useful to include the types of doctor and health professionals you see in child services, and the reasons why you see them in your health summary. This might make it easier to tell professionals about your experience when you move to adult services.

It is useful to know proper terms to describe your cerebral palsy, for example, the type of cerebral palsy you have, so you feel more confident talking about your cerebral palsy with new health professionals. Knowing about your cerebral palsy now and how it might affect you as you get older can also help you to take care of your health and decide when to seek support as an adult.

You can find information about cerebral palsy including information about getting older with cerebral palsy on the Cerebral Palsy Resource and UP – the Adult Cerebral Palsy Movement website.

It might also help to talk to other people with cerebral palsy.

Meeting new health professionals

You may not see the same health professionals when you’re an adult as you do when you’re a child, or you may not see them as regularly. It might take time to build a relationship with a new professional and they might not be an expert in cerebral palsy.

Be open and honest and tell your new professional(s) everything. You are an expert on your health, so the more information you give them the better they can meet your needs.

If it is your first appointment with a new health professional you might want to bring a copy of your discharge summary, if you have one. Alternatively you could write and bring a short summary of your cerebral palsy, including past and present treatments to share with the health professionals. You could use our template Health Summary to create this. You might also want to think about any goals you want to achieve that your professional can help you with in advance of the first appointment. You can share these with the professional when you first meet them.

Staying healthy

Looking after your health is very important for everyone. Making healthy choices about things you do every day like eating well, being active and getting enough rest can help you look after your health. You should talk to your children’s healthcare team about your individual circumstances and learn about available services or supports to help you look after your health as an adult.

Make a list of all the things you need to keep yourself healthy, such as being physically active, eating well, socialising, making new friends, taking part in hobbies, working or going to school or college, and resting. By thinking about these, you can start to understand what positively and negatively effects your cerebral palsy and find a good balance between your condition and lifestyle.

You should look after your mental health as well as your physical health.

Mental health is a term used to describe a healthy positive mental state where people feel like they can deal with problems in their life easily. Mental health difficulties occur when we feel like we are not able to deal with life’s challenges. This is a very normal experience and everyone will find it difficult to deal with challenges at some point in their lives. If you are struggling with your mental health it is important to speak to someone about your concerns to help you work through any emotions you are struggling with. People have different symptoms when they struggle with emotional or mental health issues. These may include: depression, anger, fear, anxiety, stress and worry. You may choose a family member or friend to confide in or choose to speak to someone who doesn’t know you personally. Speaking to your GP can also help.

You can find out ways to look after your physical and mental health on the Cerebral Palsy Resource and UP – the Adult Cerebral Palsy Movement website. You can find information about looking after your mental health on the SpunOut and Jigsaw websites. You can also find information about how to stay healthy on the Healthy Ireland website.

 

>> Go to next page “Speaking up for myself”