I’m not ready yet!
As any of you will know that have read my Blog along the way, I very much try to live in the moment and not think too far ahead. Not an easy thing to do when you are a ‘planner’ like me. In many ways though, I am planning in the here and now to do things that logically I know may be difficult for me to do in the future. I know that everyone’s journey is different but knowing that there will be physical and cognitive changes means I want to make the most of being reasonably physically active as long as I can. So too, I try to do things to keep my brain as sharp as possible for as long as possible.
Today, I went to a meeting at my local MS & Parkinson’s Association. It was basically billed as a “Peer Support Group”. However, I found that a number of the participants were very much more advanced than I am. One was quite advanced, and I was shocked to hear someone sitting next to me – who I think has Parkinson’s – say to the wife of the man who was quite far along – ‘I feel sorry for you!’ As the man was right next to his wife, the person I mostly felt sorry for was the husband. He didn’t ask to have Parkinson’s any more than any of us did. Although his speech is much reduced, his hearing may not be! I just hope he was distracted by something else in the room and didn’t hear the comment.
As I looked around the room, I saw people in much more advanced stages than myself, apart from a man who was sitting next to me. I found it quite confronting to see people who were having difficulty speaking and walking, but most of all for me, the expressionless face which is so part of this condition. That is something I particularly dread happening. If I couldn’t show my emotions in my facial expressions, if I couldn’t smile at the people I love, that would be devastating.
After the group, I pulled the presenter aside and asked what had happened to the UPBEAT group which had started in their old premises. She said that at the moment it is not happening, but a Wellbeing Workshop being held on Thursday may be the start of something for those in the earlier stages.
I hope no-one will judge me for saying this and perhaps some will, but for me to access a Peer Support Group, I need to feel that I am with people who are at a similar level to myself. It is hard for instance, to celebrate all the positive things that I can still do, when several participants are struggling with the basic things of everyday life, like speaking and walking. It sounds to me a bit like I am saying ‘look at me, I’m doing OK!’ when they are challenged by so many things that I am still able to do. It doesn’t feel like a comfortable fit for either side!
I have seen so much value in Peer Groups over the years, both as a facilitator and as a participant. The secret I feel is to endeavour as much as possible to have people of similar ages and stages so that the participants can more readily identify with each other. When that balance is not achieved, it can leave those attending feeling disconnected and not able to get the most out of the group.
I know there are changes anticipated in the local group and they are looking to forge ahead with a new manager in the near future. I only hope that a group can be formed for those of us in the earlier stages, so that we can connect and move forward positively together.