MANAGING CARE( continued)
CurePSP Support Groups
Wendy M. Resnick, RN, MS, CS
What is a CurePSP support group?
A CurePSP support group is a voluntary gathering of people who share common experiences, situations, or problems related to living with a prime of life disease such as PSP, CBD, or MSA. Group members offer each other emotional and practical support and reduce the sense of isolation that is associated with rare brain diseases. The purpose of the support group is to help people with PSP and other prime of life diseases to develop new and existing methods of coping with the problems associated with these diseases.
Who attends CurePSP support group meetings?
A very diverse group of people attends these groups. Brain diseases are not specific to any race, gender, socioeconomic group, or religious background. As is true of most support groups, there is a common bond: people whose lives are significantly affected by PSP and related brain disorders. Because of the mature discussions that take place during the meetings, the appropriate age for people attending the meetings is 18 years and older.
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The following types of individuals can be involved in attending support group meetings. Many groups involve both the person with the disease and family members or significant others, since sharing mutual concerns and perspectives can often be especially helpful. However, some group meetings are just for family members or patients separately, creating a welcome haven for individuals to share their personal point of view as to how they experience dealing with their loved ones.
Professionals may be invited to attend support groups— for example, nurses, social workers, physicians, or anyone who serves as a paid helper who provides assistance to people with these diseases and their families.
What happens at meetings?
The meetings provide the opportunity to share information and mutual support. Meetings might consist of group sharing without a specific agenda, a planned program with literature provided, or an open discussion surrounding a topic of interest. Whatever the format for a particular meeting, there is always an opportunity for personal sharing.