How do I cope with living with HD?

It can be hard when someone you love has HD. There can be lots of changes to cope with. Because of the damage to the brain, people with HD can change a lot as they become more unwell. Everyone in the family may have to do things they aren't used to doing. Most people have to give up their jobs at some stage when they become too unwell. This can have a big impact on everyone, there might not be as much money around and you may have to help out a bit more.

The person with HD may live at home and need lots of looking after. You might help look after them - helping around the house, doing the cooking, looking after younger brothers and sisters, etc. This means you are a young carer - you help to care for someone in your family who is not well. It's good to help out at times, but make sure you still get time for yourself to do the things you enjoy. Even though you may worry about the person with HD when you're not there, you still need a break and some fun. See www.youngcarers.net  for more info for young carers, you may want to find out if there is a Young Carer's Project in your area.

The person with HD may also go away to a special home sometimes to give you all a break and have some time-out. This is called 'respite'. It can be exhausting looking after someone all the time and everyone needs a break. After a while, they may move into the special home because they need looking after all the time and need specialist care. You can visit them in the home if you want to and it means they are being cared for all the time.

Other people might not understand the changes in the person with HD. You can explain it's because they aren't well, maybe you could show them this website and help them understand HD better.

You might also worry a lot about whether you have the faulty gene. Maybe you've been a bit clumsy one day, or a bit absent-minded. Everyone gets like this sometimes so it doesn't mean you have the faulty gene. We all have off days, but it's hard not to worry when you're living with HD. If it's on your mind, talk to someone about your concerns.

It is important for you to talk to people you trust about how you feel. People in your family, friends and teachers need to know what's going on so they can try and help you. The more people you have around you who understand what you're dealing with, the more help you can get. It's good to have someone to talk to!

Looking after Yourself

It's very important to take good care of yourself when difficult things are happening.

Make time for things you enjoy - hanging out with your pals, a steaming bath with loads of bubbles, shopping, going for a run, playing your computer, remember to still have fun!!

Talk to people about how you feel, good friends, family, people you can trust. Don't keep your worries to yourself!

Make sure you get the information that you need - ask questions if you're not sure what something means.

Remember you are not alone, there are lots of other people living with HD. If you want to chat on-line with other young people who have HD in their family, register for our chatroom which will be running soon.

If you help out a lot at home, see if there's a Young Carer's Group in your area. You can meet regularly with other young people who help to look after a family member, they won't all have HD in their family but they'll still have some similar stuff to talk about. Plus you get some time out and the chance to have some fun! See the links page for info for young carers.

If you're thinking about taking the test for HD, get all the info you can and talk it through with the people who are important to you. Take your time in making a decision, there's no rush. If you have any questions feel free to Bebo or email Karen or Kirsten.