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Preparing for advancing MSA

This section aims to address issues that may be experienced as part of advanced MSA. It is in construction and will be added to as content becomes available.

If you have recently been diagnosed you may find it more helpful to read the Sections on Newly Diagnosed and Living With MSA.

Advanced MSA refers to when your symptoms start to have a significant impact on your day to day life. This may be when your care needs become more intensive, for example, if you are needing to use a wheelchair most of the time, or you may be having difficulty eating or drinking or being understood by others.

We have a range of factsheets that deal with management of MSA which can be accessed here.

Our Nurse Specialists have a wide range of expertise regarding how to improve your quality of life when symptoms become more complex and challenging. They can also give practical advice about some of the adaptations and equipment available to make your life easier and when to think about carer’s support – both for existing family carers and for moving towards considering more formal care arrangements. Their contact details are here.

Our factsheet on Palliative Support is available to download below and gives some very helpful explanations of the type of help that can be provided to you in a range of environments (including your home) that can make a real difference to your life and the lives of those who care for you.

Compassion in Dying, an organisation that supports people to make advanced decisions about planning their care, have produced a useful guide that covers topics such as Power of Attorney and recording your wishes. This can be downloaded here.

Planning Ahead

We are in the process of developing an information leaflet on future planning which aims to support people looking at their future options.

The sort of things you might want to think about may include how and where you want to be cared for towards the end of life.  Whilst this can be difficult to face, putting plans in place can reassure you that your wishes will be clearly understood. This also gives your loved ones confidence that they are doing things in the right way as per your wishes.

This information factsheet with be available to download soon.

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