What to expect at a local support group

Whether you’re new to Parkinson’s, or have been living with it for years, the idea of joining a local support group can be daunting. So we asked a range of members why they joined, and why they keep coming back.

Parkinson’s UK Chief Executive Caroline Rassell shares what she’s observed too.

They can help you live better with Parkinson’s

Caroline: "There’s definitely an activity for everyone to try. You can try tennis, sea-dipping, archery, Nordic Walking and dancing. And you can also find whole Parkinson’s communities dedicated to singing and music. If you’re reluctant to join because you can’t find a group that feels right, we can help you find or even create one that suits you."

Ronald, group leader: "I remember one of the ladies coming and saying to me, when they left the first boxing class, that her husband was a different man. He was animated, he was walking tall. I think my happiest moment at the group was at a recent Pilates session, just watching everyone’s enthusiasm. It’s lovely to see."

They’re an amazing source of local knowledge

Ronald: "Being a group leader involves passing information on, signposting them to services. We know all the services that are available, either on the NHS or through Parkinson’s UK. We keep abreast of what’s happening in the community, in terms of exercise classes or music and dance."

Group member: "Having an opportunity to speak to the Parkinson’s nurse was stunning: someone able to answer any question on the spot was worth their weight in gold."

Kath: "We’ve also had people from Citizens Advice come in to help people with getting benefits."

They’re places to make friends who understand

Caroline: "It’s not only meetings and coffee catchups - there are so many activities and exercises that people can get involved in. It’s a great way to boost confidence and make new friends. Life doesn’t just stop."

Group member: "The atmosphere within the group is very friendly, especially when people come for the first time."

Group member: "I would say: come! Nobody is judging you at all - everybody is in the same boat."

Group member: "Everybody gets it - even if I’m a bit slow, everybody just accepts me without any explanation."

They’re for the whole Parkinson’s community

Group member: "I’ve been coming to the different groups for about a year. We love the boxing group. It’s something we can do together, and I can join in."

Kath: "We have a little splinter group. We call ourselves the Parky Wives because all our partners have Parkinson’s. And it’s just great to talk to somebody else."

Group member: "The best thing has been the friends I’ve made. When I came to the first meeting, by the time it finished at 12 I’d spoken to people enough to go for lunch with them. I’ve been coming to the group for 10 years now!"

Group member: "I was probably 20 years younger than most of the people in the room, but they welcomed me with open arms, and I felt part of the community, I suppose."

What have you got to lose?

Ronald: "The atmosphere in the group is fun. They’re always willing to have a go, and they want to know more."

Group member: "I try to encourage people to come to the group just once. Invariably they do keep coming back, because they’ve found a group that understands."