VOLUNTEER SUPPORT GROUP COORDINATORS – LINDA I AND LINDA M
Linda Iaccarino and Linda Moore have been coordinating the Norwich Support Group for 11 years. Here they share how they set the group up and what support it offers to people living in and around Norwich.
Linda I said:
“My husband was diagnosed with CBD in 2009. At the time, PSPA was running quarterly support groups regionally and although I was happy to travel I felt more was needed locally. PSPA put me in touch with Linda M, who was experiencing something similar.”
Linda M added: “My aunt was diagnosed with PSP in 2005. I had been talking to PSPA, saying I would be happy to help run a group but we were unable to find a suitable venue and that is where Linda came in.”
Linda I: “At the time, I was running a restaurant called ‘The Old Mill’ with my husband. The restaurant had a side room which was big enough to welcome around 26 people, so the ideal space really. I joined forces with Linda and we launched our first meeting in March 2012, with 15 attendees coming to visit and support each other.”
Linda M: “Attendance at the group has been pretty consistent ever since. We still attract between 15 and 26 attendees. This is a mixture of people living with PSP & CBD, family members, and past carers, who like us, are passionate about supporting people with the conditions.”
Linda I adds:
“The pandemic didn’t detract from attendance. With PSPA’s support, we moved our meetings onto Zoom so we could stay in touch regularly. But the group were very keen to meet in-person again, so as soon as we safely could meet face-to-face again, we did.”
Linda M: “The group meets every five to six weeks. The meetings do focus on connecting with each other. In the first half of the meeting, we always have
introductions, so new people can get to know the members. It is also an opportunity for them to voice how symptoms are affecting them and any support they need. We then have a different discussion topic each time, this generally comes from the group. For example, recently a few people have been asking about brain donation, so we collected some literature and discussed that at our last meeting.”
Linda I: “We try and keep the meetings as informal as possible. We are a lively bunch so there is plenty of time for humour, as well as tea and cake.”
Linda M: “We are also quite sociable, so we organise social outings and fundraisers separately to the group meetings, so the support aspect is always there.”
Linda I: “We’ve hosted a range of social events, these can be anything from a meal out, to a trip to the beach or a boat ride along the broads. Our next social this summer is a Fair Haven Trust Walk. An entrance fee is applicable at this social but it is a very nice and accessible walk. In general, we either try and get
group discounts or keep things as cheap as possible as we know people might not be able to get out and about much.”
Linda M adds:
“In addition, we’ve run fundraisers such as quizzes, summer fairs, crafts and cake baking. We all pitch in to help. Our next fundraiser is on 15 April. This is a craft fair and raffle. We always offer out options to the group and then they choose what it is they would like to do – for example for our next meeting we have offered to run a quiz or have a bingo session. The group chose bingo, so that is what we will do.”
Linda I: “We do attract group members from 20 miles or more away because we’ve built a great community. Recently we asked for some feedback about what our members enjoy about the group most, and it was exactly that – the community feel. Knowing you’re are not alone and that you can come along, no questions asked, as people just understand what it is you’re are experiencing.”
Linda M: “I am really proud of the group we have built between us, the support we are able to provide. By volunteering just a few hours of my time each month, it is such a small yet rewarding gift to help people living with PSP & CBD. And hopefully, it helps make their journey a little easier, having us here.”
Linda I: “I agree. Not everyone has a large support network in their family, so it is nice to be able to help. We know things aren’t easy, getting the diagnosis and then the support you need at different points during the illness, so giving up our time is just a small thing we can do to help things along.”
Sign up to become a PSPA Support Group Coordinator
Tel: 01327 356137
