A Few Suggestions for Family and Friends

Family and friends of a loved one suffering from MSA want to support them and their family, but often find it difficult to know how to help. Because MSA is so rare, most people don’t know much about the disease or its effects on the patient and family and, as a result, family and friends may be at a loss as to how best to engage with and support the family. Some don’t know what to say. Some don’t know how to help. Some may feel guilty because they don’t know what to do. Others may feel awkward or uncomfortable. Sadly, some end up avoiding the family altogether. Avoidance can lead to increasingly infrequent communications and strained relationships which is not a good outcome for anyone.

Most people are well meaning and truly want to support you through your MSA journey. Give them a chance to help by gently guiding them with suggestions of things they can do. Finding solutions to this problem is a win-win for everyone, the MSA patient, their care partners, as well as their family and friends.

This section includes some ideas that you — the MSA patient and family — can share with your family and friends who ask how they can help:

• What can I do to let the MSA patient know I am thinking about them?
• What can I give to provide entertainment and other activities the MSA patient would enjoy?
• How can I specifically help the primary care partner?
• What should I avoid doing when trying to help the care partner specifically?
• What can I do when visiting in person?
• What should I avoid doing when trying to help?

The bottom line is that MSA patients, their families, and their primary care partners need to know they are loved, supported and cared about. They will depend on and truly appreciate knowing that you are thinking about them and offering your support even if they may not always seem that way to you. It’s hard to imagine what they are going through but do your best to listen and show you care. By doing so, you will end up strengthening your relationships with your loved ones and creating wonderful, lasting memories for all involved.

Contributed by Patricia Libby, former care partner to an MSA patient and member of the MSA Board of Directors.