Parkinson’s UK have been delivering self-management programmes since 2013. A path through Parkinson's is a self-management programme designed to help people with Parkinson’s, their partners and current carers to navigate the future and learn from others with a similar experience of Parkinson's. The programme brings 8-12 people together locally into a self-management group, with sessions delivered over 3 or 6 weeks. The groups are free to attend but places must be booked in advance.
Groups discuss what self-management is; looking ahead and plans for the future; relationships, feelings and emotions; what's important; top tips; taking care of yourself and support from Parkinson's UK. Parkinson’s UK also run support groups specifically for partners and carers.
Feedback from those who have taken part in the programme so far includes:
"Brilliant mix of personalities and very open discussion on all topics, give you motivation to try new things and be positive for the future."
"When I first came to the group I felt so utterly alone, not knowing what to do or where to go for help, but sharing with others was an eye opener."
"I have thoroughly enjoyed been part of this group. Talking openly to others and listening to them talk has given me a better understanding of Parkinson's. I have come away feeling much more positive about the future."
"This course was fantastic for motivation and personal-based information of dealing with an illness."
One person who has taken part in the programme is Kirsten, who was diagnosed with Parkinson’s 12 years ago. Here is what Kirsten said about the programme:
“Before joining the group I was very bitter about having Parkinson’s. The first session made me realise just how cross and angry I was, I’d never realised it before. In the second week, hearing what other people were doing was a big wake-up call. They were getting on with their lives. You can still do everything you want to do, maybe just do it a bit slower or in a different way. It was a total mind shift for me. I went from being really negative to thinking “Oh, I really can do that if I want to”. I don’t have to just sit at home and think I’ve got Parkinson’s, poor me. It’s utterly changed my point of view. In the final week we did some action planning, it was quite unnatural for me because I never really liked to look ahead – but it was good. At the end of the session we were asked how we felt about the group, I got so emotional and couldn’t speak because I was upset that the group was finishing. I was gutted it was only for 3 weeks, I could have done 30 weeks!! I was so used to being so moany and negative, I couldn’t believe how much I’d changed in just 3 weeks.”
Pat is a carer for her husband, she attended a self-management group, this is what she tells us about her experience:
“I found a way of getting back on track. I feel as though I’m more in control…. I can see a future. Being in control is the secret. The group gave me confidence and motivation. It made me rethink what I was doing and a way of behaving that I had to change - I’m sharing the responsibilities again with my husband. I’d stopped planning for the future…. The group brought back to me that I can do small steps… I can plan a week ahead! Our philosophy now is to have a good time and be happy. We’ve made plans to have a holiday. We can still plan…we’ve got quite creative! I look around and take more pleasure in my surroundings – I can look at the sky and see the stars now where before I could only see the clouds.”
A path through Parkinson’s was developed with people living with Parkinson’s and groups are led by 2 specially trained volunteers who are people with first-hand experience of the condition.
Volunteer facilitators include Nigel, who was diagnosed with Parkinson’s in 1997, just after he turned 45, and his wife Greta, who was also diagnosed with the condition 15 years later. Both have found the experience of giving people with Parkinson's the tools to affect their own wellbeing really empowering. As volunteer facilitators they are able to apply what they have learnt living with the condition, and to pass this on to others. One of the most rewarding things is seeing people become more open and able to talk about how their condition affects them. Ideas coming out of the group can also help to expand facilitators' own expectations of what they can achieve with Parkinson’s.
To date 675 people have attended sixty four groups across England, Wales, Scotland Northern Ireland. There are a further 25 groups planned for spring 2016