Completing health care advance directives is an excellent tool for sharing your wishes regarding care with your support team. Health care advance directives address topics such as how aggressive your medical care should be( for example, whether you would want a feeding tube or a machine for breathing if the need arose) and how you define quality of life. These directives should be completed with your family and your doctor, and should be reviewed at least annually in case your wishes change.
Many people living with MSA consider and explore professional care services, such as in-home care, adult day care, or long-term care, depending on their care needs and situation. These services can provide an additional layer of support, including companionship or hands-on help for the person with MSA and assistance and respite for the family.
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Additionally, there can be great value in connecting with other people affected by the same diagnosis as you and your family, through support groups or a peer support network. It can feel validating and uplifting to hear the experiences and insights of how others adapt to life with MSA. You can exchange helpful tips on ways to cope physically and psychologically with the diagnosis. There are a handful of support groups specifically for MSA and many more for atypical parkinsonism( which can include progressive supranuclear palsy and corticobasal degeneration) in the United States and other countries. Visit www. psp. org / ineedsupport / supportgroups for a list of regional support groups as well as virtual, national support groups facilitated by or in collaboration with CurePSP. Additionally, many local Parkinson’ s disease support groups welcome members with MSA. If you may be interested in starting your own MSA support group, contact CurePSP to learn more and for help in getting started. Additionally, CurePSP offers educational symposiums and webinars where you can learn about MSA and connect to the community.
We recognize that a diagnosis of MSA can bring up many emotions, changes, and considerations. No matter how you find support, please remember that you do not have to navigate the MSA journey alone.
The mission of CurePSP is to raise awareness, build community, improve care and find a cure for PSP, CBD and MSA.
Please contact CurePSP for additional information and resources: www. curepsp. org info @ curepsp. org 1-800-457-4777