01. Overview and Context – Planning for the Future
Plan for the worst and hope for the best.
The reality is that you have a diagnosis of Multiple System Atrophy (MSA) and unfortunately neither you, or anyone supporting you, can prevent the changes that will happen because of MSA. Having received this diagnosis, and throughout your life with MSA, it is likely that you will have several occasions when you will take stock of your situation and reflect on your life – as indeed we all do, particularly as we get older. Having a diagnosis of MSA may perhaps have brought such thoughts into sharper focus. For example, what are the things that really matter to you; what do you hold dear and value most; what do you enjoy and what do you hope for? Understandably you may think about what you are worried about and what you fear for now and in the future.
Allowing yourself to think about these things and being brave enough to share them with those supporting you, will help. A healthcare professional, family member or friend you can talk to about this may also be able to help you document key things that are important to you. This may include topics such as:
- who you would want to speak on your behalf if you could not speak for yourself
- that you hope to always be able to be cared for in your own home
- that you like to have a bath rather than a shower and sleep with the landing light on.
These sorts of things form part of your Advance Care Plan (further information can be found in the relevant tile).
Fears can be addressed and solutions sought to worries that may have seemed overwhelming, but once shared and thought through may be much less so. Identifying what is most important to you and what makes life enjoyable and meaningful, will help you achieve the best possible quality of life.
The whole goal of living with MSA is to keep a quality of life that is acceptable to you – this will be different for everyone and will change over time. So, it is important to think about what your priorities are and what help, interventions, support, aids and equipment you may need to support your quality of life.
Nobody finds it easy to realistically plan ahead, for us all the future is uncertain, but this is brought into sharp focus when you have MSA. Taking the time to think through the likely situations you will face, and how you want to manage these, can enable you to achieve some control in your life, even at these difficult times.
We at the MSA Trust have accumulated years of experience being alongside people with MSA. We want to use this experience to help you think about things you definitely need to consider. There are also things that are less certain but will be beneficial to think about if you want to have some control, and say in, how you are supported and enabled to live with MSA.
On the main Planning for the Future page are some topics that you might want to look at for further reading and support.
The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.