The Peer Support Group

I believe in the value of Peer Support Groups.

For someone who has made it known loud and clear that I do not do groups, this is perhaps somewhat unexpected. But, there is a big difference between making a twit of myself in an aerobics class – the most uncoordinated person there – or lagging behind in a group tramping outing. The difference is that No.1 it isn’t recreational or sport orientated and No.2 it is with other people in very similar circumstances. A good peer group is one is which you feel safe and comfortable and can be confident enough to ask for help and to get advice off each other.

One of my first forays into a peer group was a very informal one, which was a coffee group that came about through a playcentre that my oldest son and I went to. We found that there were about 4-5 of us that got on really well and we started having coffee at each other’s houses. The children were all of a similar age and of course there were toys to play with and the children – mostly – played while the Mums chatted. We were all new Mum’s with our first child and we would swap hints about how to deal with nappy rash, teething, biting, sleepless nights etc. We had over time built up a friendship and felt safe and comfortable sharing our thoughts and our fears of this huge responsibility that we had. Raising a child is one of the few times in your life where you will take on an extremely important position with very little training or knowledge and muddling your way through. My son used to call himself my “practice baby” and he wasn’t wrong! I made lots of mistakes with him, the poor kid but he didn’t seem to end up too damaged!

I worked as a Social Worker for 20+ years and one of my positions was in a community agency working with people with dementia. We usually became involved with people in the early stages of dementia and walked alongside them as things progressed. We had groups for the people with the diagnosis and also separate carers’ groups. It was a privilege to work with both groups and to see the connections being made between participants. One of the groups was all men – just coincidentally – we didn’t set out to make a ‘men’s group’ it was just who turned up for the group. The wives would drop the men off and almost immediately, they formed their own unofficial group, going for coffee while the men were at their group. It worked well and gave the couples a safe environment to talk about their experiences and to share knowledge and support with each other.

Now, instead of facilitating groups, I am a member of one. A group for people with a diagnosis of Parkinson’s and those that support them. My husband and I both attend if he is not working, or I sometimes go by myself if he is. The group has been going for a number of years now, with a steady core group that have attended regularly over the years. If you came along and sat down with us all, you may not even be aware of the reason we gather, which is of course to give and receive support and to build bonds with each other and to create a safe place for us all. The other night when we met, I found myself talking to a new staff member of the society that supports us all and also with a relative newcomer. We spent quite a lot of time talking about all sorts of things unrelated to Parkinson’s. In the background, my husband was extolling the virtues of ‘the best fish and chip shop in Kaikoura’ So you can see there are all sorts of things covered in those meetings.

I was talking to the wife (the newcomer) of the person with Parkinson’s and she mentioned their young daughter. I asked if she had advised the school of her father’s recent diagnosis and she said that she had not thought about doing so. I talked to her about working with people in hospital, supporting them when someone had had a stroke under 65 years and how many had children. I would usually ask the question about telling the school and often that had not been thought of. Often parents would say they were really close and that they were confident that their child would talk to them if they had any concerns. I advised that sometimes it can be the very closeness of the relationship can mean that the situation is the direct opposite. Because the child is close to her parents, she is aware that something big has happened to her Dad, but a full discussion has not happened as yet. In these sort of circumstances, the child may be inclined not to talk to her parents, because she/he does not want to cause any further upset to her parents. So, the result can be that he /she has no-one that they feel they can talk with. I would usually recommend perhaps talking to the headmaster and/or the child’s main teacher or any other person that the child would feel comfortable enough talking to. There are big feelings for the child that they may not have felt before and may not know what to do with. Without having an outlet, in the form of someone they are comfortable to talk to, the child may become distressed and it can affect every aspect of their lives. Giving them the opportunity to identify someone that they can talk to at school, acknowledges directly to them, that this is a big thing in everyone’s lives. The child then has the opportunity to be heard and supported by someone not emotionally linked to the parents and the child does not need therefore, to be concerned that expressing any thoughts, feelings or concerns may upset their parents.

Groups for peer support can take many forms. Some may have formal agendas and parameters. Some may be for carers, some may be for those with the diagnosis. The important thing is to find a group that suits perhaps their ages and stages, depending in part on how long ago a diagnosis was given and how they have reacted to receiving the diagnosis.

It may be that for a while, the participants just come along and listen and don’t feel comfortable contributing to the conversations. Or, the discussion of where the best fish and chips can be had, is about their comfort level when new to the group. I can be ‘a listener’ who can sit in a new group and listens and begins to identify people in the group that I feel I could potentially feel comfortable with. I may not say much initially – which is unusual in itself – but once comfortable, I may have trouble finding the off switch! Twenty years of being a Social Worker means I am accustomed to dealing with people in a number of different situations. I can give support utilising my own experiences as a person with Parkinson’s, my experiences of having supported my parents as they progressed with their journey with Parkinson’s and my experience as a Social Worker. But, I am not there to facilitate or to take a formal role, I am there because I recognise that this Parkinson’s thing is a big deal in not only my life but in my husband’s. I feel it is important to lay the groundwork early, so that we have built relationships and be able to get support we need along the way.

My advice?

Find a support group that feels like a fit for you.

Don’t worry if the members don’t talk about Parkinson’s much. They are laying the groundwork for more in depth discussions in the future and that future could be the next time you meet.

Be content to sit and be present, if you don’t feel comfortable to share immediately. It is OK to just listen. To absorb the conversations happening around you. You don’t have to talk to be present and you can talk any time it feels like the right thing for you.

The biggest thing before going to a Peer Support Group is to emphasise that no two journeys are the same. Your Parkinson’s experience could be somewhat like others in the group, but will also have it’s own unique aspects. Just because someone has certain symptoms and are more advanced in their journey, does not mean that you are witnessing how things will be for you in the future. It could be markedly different for you.

Find a group, or make a group even if you just sit one on one and have a coffee.

It is the connecting with others that is the key.

You will make the connection that works for you.