‘You’ve got a friend in me’ – Advice on supporting your friend with Huntington’s disease
In this article, we hear from our Specialist Huntington’s Adviser for Surrey, Mandy Ledbury, on the best ways to support your friend if they are affected by Huntington’s disease.
Being a friend of someone affected by Huntington’s
As a friend of someone affected by Huntington’s, you may experience a range of challenging emotions and feelings. It’s not going to be easy, so strap yourself in for the ride. Your friend may appear to go through various changes and may be unable to return much of the emotional investment you have made in them. Hence your relationship may feel unbalanced and challenging at times. It’s hard, but try and remember this is Huntington’s disease causing these changes and not your friend.
How can you support your friend?
You will still be a very important factor in your friend’s life and can play a very significant part in supporting them. Below are a few ideas to help you along the way;
Learn
Learn as much as you can about Huntington’s disease. Look at the Huntington’s Disease Association’s website for information on how to cope with changes in behaviour and how the disease affects the brain. Offer to help and support everyone with fundraising ideas and activities.
Allow space
Give your friend and yourself time and space to process information. Your friend can get easily overloaded with things which can lead to frustration and irritability. Keep it simple and give information in small chunks, slowly and patiently. You will need to be flexible and learn to adapt.
Confide
Sometimes it can be much easier to talk to friends rather than to family. Huntington’s disease is a complex disease so there are many difficult conversations to be had. Your friendship may offer a huge opportunity to discuss what needs to be said and to whom. A trusted ally to bounce ideas off about how to say difficult things to close family without hurting anyone’s feelings can be so useful. Your friend can rehearse difficult conversations with you, try things out and see how they sound.
Be patient
Try and stay calm and patient if things aren’t going smoothly and be prepared to walk away. Give everyone a break and come back later to start again.
Practical matters
You can help with practical things; lifts to clinic, attending events, support groups and fundraising activities and simply spending regular time with your friend to give partners and carers a break.
Have fun
Take your friend out for some fun and relaxation time. A visit to the cinema, a trip to the pub, a stroll in the park, a yoga class, whatever you both enjoy. Have some fun!
Practice self-care
Look after your own feelings. Try not to ignore them. Pay attention to yourself. You are very valuable and it’s OK to feel sad, angry, guilty, resentful, fed up and exhausted. You can always talk to someone; maybe a Specialist Adviser from the Huntington’s Disease Association. Try some relaxation techniques such as mindfulness or some simple breathing exercises. Exercise, swimming or Yoga are always good ways to release tension. Give yourself some time to think.
It’s the disease, not your friend
Emotional blunting can be challenging. Your friend with Huntington’s may not give you the responses you expect. Try to remember this is the disease and not your friend. You may not get the gratitude you would normally receive for your care and attention. You may feel isolated and exasperated at times. Try to find someone to talk to about how you are feeling.
Ask for extra help
If you begin to think that the amount of support you can give to your friend isn’t enough and there are no other people around who can help. You can contact us at the Huntington’s Disease Association, where we can put you in touch with local support groups and branches who can provide peer support and advice. You can also contact the local carers support agency or the local council for further help and advice on services which may be available.
Reminisce
Try and use humour and reminisce about fun times you have spent together. Good memories are helpful and building more memories is important. Just because things seem very difficult and challenging doesn’t mean that you can’t still have a good time and do almost everything you used to enjoy. You may have to adapt things slightly but most things are possible!
“The old saying ‘you choose your friends …’ holds good. You have a relationship with that person for a reason, friends are a very valuable and incredibly important part of life.” – Mandy Ledbury
If you are the friend of someone affected by Huntington’s disease who you believe needs support, whether your friend is directly affected, a family member of someone affected or just another friend, please urge them to get in touch with us on 0151 331 5444 or email [email protected]. If you feel that you need support or advice on Huntington’s disease please visit our website or use the contact details above.
In this article, we hear from our Specialist Huntington’s Adviser for Surrey, Mandy Ledbury, on the best ways to support your friend if they are affected by Huntington’s disease.
Being a friend of someone affected by Huntington’s
As a friend of someone affected by Huntington’s, you may experience a range of challenging emotions and feelings. It’s not going to be easy, so strap yourself in for the ride. Your friend may appear to go through various changes and may be unable to return much of the emotional investment you have made in them. Hence your relationship may feel unbalanced and challenging at times. It’s hard, but try and remember this is Huntington’s disease causing these changes and not your friend.
How can you support your friend?
You will still be a very important factor in your friend’s life and can play a very significant part in supporting them. Below are a few ideas to help you along the way;
Learn
Learn as much as you can about Huntington’s disease. Look at the Huntington’s Disease Association’s website for information on how to cope with changes in behaviour and how the disease affects the brain. Offer to help and support everyone with fundraising ideas and activities.
Allow space
Give your friend and yourself time and space to process information. Your friend can get easily overloaded with things which can lead to frustration and irritability. Keep it simple and give information in small chunks, slowly and patiently. You will need to be flexible and learn to adapt.
Confide
Sometimes it can be much easier to talk to friends rather than to family. Huntington’s disease is a complex disease so there are many difficult conversations to be had. Your friendship may offer a huge opportunity to discuss what needs to be said and to whom. A trusted ally to bounce ideas off about how to say difficult things to close family without hurting anyone’s feelings can be so useful. Your friend can rehearse difficult conversations with you, try things out and see how they sound.
Be patient
Try and stay calm and patient if things aren’t going smoothly and be prepared to walk away. Give everyone a break and come back later to start again.
Practical matters
You can help with practical things; lifts to clinic, attending events, support groups and fundraising activities and simply spending regular time with your friend to give partners and carers a break.
Have fun
Take your friend out for some fun and relaxation time. A visit to the cinema, a trip to the pub, a stroll in the park, a yoga class, whatever you both enjoy. Have some fun!
Practice self-care
Look after your own feelings. Try not to ignore them. Pay attention to yourself. You are very valuable and it’s OK to feel sad, angry, guilty, resentful, fed up and exhausted. You can always talk to someone; maybe a Specialist Adviser from the Huntington’s Disease Association. Try some relaxation techniques such as mindfulness or some simple breathing exercises. Exercise, swimming or Yoga are always good ways to release tension. Give yourself some time to think.
It’s the disease, not your friend
Emotional blunting can be challenging. Your friend with Huntington’s may not give you the responses you expect. Try to remember this is the disease and not your friend. You may not get the gratitude you would normally receive for your care and attention. You may feel isolated and exasperated at times. Try to find someone to talk to about how you are feeling.
Ask for extra help
If you begin to think that the amount of support you can give to your friend isn’t enough and there are no other people around who can help. You can contact us at the Huntington’s Disease Association, where we can put you in touch with local support groups and branches who can provide peer support and advice. You can also contact the local carers support agency or the local council for further help and advice on services which may be available.
Reminisce
Try and use humour and reminisce about fun times you have spent together. Good memories are helpful and building more memories is important. Just because things seem very difficult and challenging doesn’t mean that you can’t still have a good time and do almost everything you used to enjoy. You may have to adapt things slightly but most things are possible!
“The old saying ‘you choose your friends …’ holds good. You have a relationship with that person for a reason, friends are a very valuable and incredibly important part of life.” – Mandy Ledbury
If you are the friend of someone affected by Huntington’s disease who you believe needs support, whether your friend is directly affected, a family member of someone affected or just another friend, please urge them to get in touch with us on 0151 331 5444 or email [email protected]. If you feel that you need support or advice on Huntington’s disease please visit our website or use the contact details above.