Advice if you are thinking about making decisions around your future.

Trigger warning - This article contains information and opinions around end of life decisions.

Planning for the future is a sensitive but important topic. It might be one of the most difficult conversations to have whilst living with a life-limiting condition such as Huntington’s disease.

There is no right or wrong way to approach this topic as everybody’s feelings towards it are different. For some, the subject is daunting which is completely understandable. For others, it’s reassuring and a way to regain some control.

Planning ahead can offer a sense of control in a life that can feel unpredictable or uncertain. There are two types of future planning, practical and personal.

Practical steps include setting up a Power of Attorney, making a Will, or expressing your wishes for your future care. All of these topics, although may feel daunting, means that you have your say in care and how your assets are distributed. Personal decisions could be things such as deciding whether to have a PEG (Percutaneous Endoscopic Gastrostomy feeding tube) or not, or if you choose to use a voice banking service if you were to need it in the future.

Jenny shares what decisions she wanted to take control of while she was able:

I wanted to put in place aspects that I will hopefully have some control over; legal paperwork; not having a PEG (Percutaneous Endoscopic Gastrostomy feeding tube); my Do Not Resuscitate (DNR) via my GP; and I joined Dignitas with a hope that I can choose my ending.

These decisions are not something you need to think about or tackle on your own. If you do not have a partner or family member to talk it through with, you can contact our helpline or your local Specialist Adviser. They are there to provide a listening ear and offer advice around informed decisions and can signpost you to relevant specialist services.

Planning for the future guide

You can find more in depth inforation about plnning for the future and your choices in our digital guide below. If you wish to have a printed version plase call 0151 331 5444.

Further support

Our helpline is available Monday - Friday between 9am and 5pm. Call 0151 331 5444.

We also have a peer support message board where you can chat to others in a similar situation for you.