Who are our peers?
Tonight, for the first time in a long time, I attended a Peer Support group run by our local MS & Parkinson’s Society. I had enquired about the group after I received an email notice that it was coming up. Previously, I had attended a group for people who were in the early stages of their journey with the condition, but was told that this group was for anyone with Parkinson’s and their support people.
I must admit when I learned that this was an ‘open’ group, in that it was people at any stage of the diagnosis, I did have some hesitation in taking up the opportunity to attend. I believe in the power of peer support – as a Social Worker we often run these sorts of groups – but it made me ask myself the question of whether a group with such a possible broad range of stages would be my peers?
My hesitation was that perhaps I would be experiencing the group with people much more advanced than myself and that this might be confronting for me. In some ways perhaps it was, but when I think about the people who attended I feel there was still value in the group for me. The participants, some of whom were accompanied by their spouse/partner, were open and honest about their journeys. Those who were further along the continuum of their journey were able to share their experiences and in doing so we could learn from them. Areas where they felt they did not get the support they needed, or the information they needed, I think aided those of us in the earlier stages to ensure we stand up for what we need for support ourselves. The Manager of the society facilitated the meeting and I am sure our discussions regarding what we want from the organisation will be useful for her in planning service delivery. As she herself stated, it also got her face to face with the people the society is there to support.
Some of us who are reasonably comfortable with computers and searching the internet shared some useful websites. Those of us ‘early birds’ also had our own learnings to share and even for those who have been longer on this journey, I think we contributed something for them as well.
One thing I always think about – despite my best efforts – is how long have I got left in this life? Will Parkinson’s shorten my life expectancy? Will I get to see my grandchildren grow up and marry? I have been told by my specialist that I am a ‘slow burner’ so hopefully that means I will get to experience my beloved grandchildren into adulthood. Perhaps I will get to meet my great grandchildren? That would be wonderful.
So, being with people further on in the journey in one way was heartening. One participant had been diagnosed approximately twelve years and although I know they face challenges, is still here and fighting the good fight against Parkinson’s.
We all had one thing in common and that is that we are all trying our best to be our best. I didn’t see or hear anyone in that room that was ready to throw in the towel. To let Parkinson’s win without a fight.
One thing I say to patients of mine on our Neurological ward is this.
“Sheer bloody-mindedness can get you far in this life”
Never giving up. Never giving in. Through sheer determination and unwillingness to surrender, we will beat this beast of Parkinson’s back into submission for as long as we can. By sharing what works for us, we give each other weapons to use in the fight. We can admit that things are difficult for us, as being honest and open is something I feel I certainly need to do. But, that doesn’t mean we give up.
So, who are my peers? Each and every one of those people in the room. We may be different ages and stages but we are united against a common enemy!