PMD Alliance hosted our most recent In Sync!® Online Workshop at the end of May with Adamas, one of our corporate partners. Given your critical role in the community, Adamas wanted to hear from you on ways that they can better support your support groups. The Workshop included lively discussions including breakout group conversations of the victories and challenges of living well with Parkinson’s and its wide-ranging emotional and social impacts. In Sync members shared a resounding interest in more targeted educational materials and resources that people with PD and care partners need throughout their journey.
For example, people with PD and care partners want to be well prepared at their doctor visits so they are able to ask targeted questions to maximize movement control and their good ON time. Certain groups, such as adult children or a spouse of someone with Parkinson’s, find it helpful to have their own space to connect with others in similar situations for support. The support group leaders also expressed a need for educational materials covering particular topics such as how to better understand OFF time, digestive tract issues, managing medications, driving, information about mid-later stages of Parkinson’s, and the emotional impact of PD such as anxiety and depression.
Adamas has recently launched an educational website called “Picture More Time” (www.picturemoretimepd.com) to provide additional resources to the community focused on raising awareness about OFF time and dyskinesia, and ways to maximize good ON time. The website includes a printable list of questions to bring to the doctor’s office, tips for daily management, and discussion guides for support group leaders to use in their meetings. Adamas is continuing to develop materials and tools to aid in awareness and empower the community, and they would love to hear more about your feedback and what your support group needs to raise awareness about living well with PD. You can contact Jennifer or Katie from Adamas at jchang@adamaspharma.com and kfeeley@adamaspharma.com to share your perspective.
