4. Building Your Support Network
Staying connected to the people around you and building a network of support as early on as possible is important for your mental health and wellbeing and will help you to get the most out of each day. It can also mean that help is more easily available for you and anyone who is supporting you, if difficulties arise suddenly. This section suggests ways you can build a network of support to help you and the people close to you. Click here if you wish to go back to the main menu.
Friends and Family
“Let me know if there is anything I can do” may be something you often hear. Some friends and family may feel awkward at first, not quite knowing how to help or what to say and it can sometimes feel as though MSA is “an elephant in the room’. One way of getting over this is to be straightforward in saying what you need and accepting help when it is offered. If the situation were reversed, you would most likely wish to help out, so try to remember this if you feel unsure about accepting help.
Friends and family will find it easier if they are given a specific task or chore as they may not otherwise know how best to help, so make a list of ideas and have it ready. This might include fortnightly or monthly visits (online or in your home). If talking is tiring you might like to ask two friends to visit together so you can sit and listen to their news, there is then less pressure on you to contribute on a one-to-one basis. Or maybe watch a favourite TV programme together or ask for a book or newspaper to be read to you. Regular help with shopping, preparing and delivering a meal, cutting the grass or helping you get to social events are other examples of ways that friends and family can help.
“It is about finding ways of explaining the things you need. You are the expert because you see the difficulties throughout the day”
Being involved in your support network can help the people who care about you feel useful and show their care, as well as making it easier for them to understand the impact of MSA and to stay connected with you over time.
Being able to connect with others who are going through similar experiences can bring a feeling of connection, of being understood and opportunities for mutual support. Support Groups run by the MSA Trust are available to people with MSA, carers, friends, family members or healthcare professionals. At least twice a year our MSA Nurse Specialists visit the Support Groups to answer any questions and queries.
“We really get a lot from the group meetings, is it so helpful to meet others who have this ridiculous condition, support each other and learn more about the condition and how we might manage things”
There may be other groups in your region or run by your local Hospice, that provide an opportunity to meet with others who are affected by a life-limiting illness. Your local GP Surgery, community hubs or library often have information about local groups.
- HealthUnlocked offers a forum for peer support online where you can ask questions, get ideas and share mutual support
- Support Groups – Multiple System Atrophy Trust
You may also wish to consider befriending as part of your support network. Befriending is a service that provides reliable and supportive contact with a trained volunteer and this can really help to reduce feelings of isolation or loneliness. Befriending volunteers offer a listening ear and regular contact, usually on a weekly basis.
The MSA Trust is currently piloting a befriending service for people living with MSA and carers. For more information, please contact the MSA Helpline on 0333 323 4591.
Information about befriending support can also be found at:
Paid for Personal Care and Support
You or those who are caring for you may understandably feel reluctant about paying for personal care as this brings another change to your lives that may feel unwelcome. However, over time you are likely to require increasing levels of help, and if one person is providing most of your care this may affect their own health and wellbeing. Building ‘paid for’ care into your routine and support network is likely to be far less stressful than having to find it at a time of crisis and also means that there are other people who get to know your care needs and how you like things done. This will also free up some regular ‘downtime’ for your main carer and will make it far easier for you both to manage if they are unwell or unable to look after you at times.
“Respite was so important. We had a carer every Thursday afternoon for a few hours. We also had an old friend who was very specific in what help he wanted to offer – he offered to read to Geoff once a week for 2 hours”
If you live alone or family or friends live at some distance and are unable to help with your personal care, it is important to know what support is available and to begin planning ahead so that your health and wellbeing is not neglected.
Whatever your circumstances, and whether you live alone or with a partner or main carer, if feelings of loyalty, financial worries, or discomfort at accepting care from someone you don’t know is stopping you from arranging paid for personal care, do try and explore your options. Talking to our Social Welfare Specialist or connecting with others at MSA Support Groups or on HealthUnlocked to share concerns about accepting ‘paid for’ personal care may help you to adapt to this change.
- Social Welfare Specialist Service – Multiple System Atrophy Trust
- Support Groups – Multiple System Atrophy Trust
- Care Support – Multiple System Atrophy Trust
Faith and Spirituality
Living with a life-limiting illness is a profound experience. You may at times question life’s purpose and meaning or have questions about death or whether there is something beyond it. You may spend time thinking about the life you have lived and may wish to pass on stories, memories or life lessons to those you leave behind.
Some people turn to or find that religious faith give them strength, whole others may find themselves questioning their faith or spiritual beliefs. If you follow a specific faith or religion, your faith leader will be experienced in supporting and talking to people who have been through similar experiences to yours. Your faith community may also be a good source of practical and emotional support.
Whether or not you follow a faith or religion, talking to someone you trust, to a counsellor, a faith leader or a hospital or hospice chaplain may help you to explore some of these questions and thoughts.
Support from The MSA Trust
“I can definitely say, from my experience, that your help has eased the feelings of sheer helplessness and depression, just by knowing there is an organisation that understands and actually cares”
The MSA Trust is here to support anyone affected by MSA and we have included information in this resource about some of the support we provide. When you have questions or concerns, or wish to find out more about how we can be part of your wider support network, please contact us and we will do our best to help you.