The HARDY Parkinsons Group was formed in 2017 in Fort Collins, Colorado. The primary reason for creating this group was to provide access to resources for People with Parkinson’s Disease after normal working hours. I have found the vast majority of Parkinson’s resources, be they support groups, educational forums, or exercise/skills classes are on weekdays between 9 and 5. I was almost never able to attend any Parkinson’s activity in the 10 years from my diagnosis to my retirement. Even if the PWP is available, their care partner may be working and not be able to attend. The excellent Parkinson’s Support Group of Larimer County meeting is held at 10:30am on Wednesdays, but I felt the need for an evening support group to complement that one .
In creating this group, it seemed to me that those still working were likely to have some common characteristics. Either they remained Highly Active, they were Recently Diagnosed, or they were Young onset. The acronym HARDY conveys that nicely. Despite the name, anyone of any level of physical capability is welcome and encouraged to attend.
There are some basic principles that I am trying to use in facilitating the HARDY meeting.
- Make the meeting at a time accessible to those who are still working.
- Keep the group to an effective size. My experience is that more than about twelve to fifteen attendees (PWP) changes the dynamics of the meeting from a support group to a lecture series. I believe a support group needs to be small enough so that everyone knows each other; this facilitates an intimacy and trust in sharing experiences that is vital to what people get out of the group. I have not yet had to face the problem of the group growing too large.
- Let the attendees have a strong say in setting the agenda. I support flexible agendas where some meetings will be on a specific topic led by me or another member of the group, some will feature guest speakers who are experts on certain topics, and some meetings will be round tables where all we do is have freeform discussion. Every meeting is intended to reserve time for a round table so that no urgent concern or question for the group ever goes unasked.
- Keep everyone engaged, feeling free to ask questions, to surface concerns or fears, and to share their experiences for everyone’s benefit. There is an understanding that this group protects confidentiality, never judges nor diminishes any other attendee, and always looks to help the other members of the group. People are there to not only get support, but to give it as well.
- Provide useful, positive information to give people tools for coping with PD, reduce uncertainty, and provide emotional support. Some people avoid support groups because they have the impression that everyone there just wants to complain about their situation. While attendees are welcome to voice complaints and concerns about anything, we try to look for solutions or alternatives rather than just wallowing in the problems.