I have worked in a number of jobs where there have been support groups available for people with certain health conditions in common. These groups can be invaluable as people often have similar shared experiences and knowledge of what has – or hasn’t – helped for them. It reminds me of when I was a young Mum for the first time, bumbling blindly along with little support and hardly knowing how to care for my baby. I joined a playgroup of other mothers and soon found a wealth of knowledge, knowledge way beyond what any supposed ‘professional’ could provide. Knowledge based on lived experience, on trial and error, on what worked for each child and mother and from that I learned to take what advice and information felt right for me and leave the rest. You can’t buy that sort of support and you can’t beat it!
So, now with this diagnosis, I’m finding I’m seeking others with the lived experience of Parkies. People, who through trial and error, through living with it have found ways to live well with Parkies. People like me, who are newly diagnosed and working through what this means for our lives in the here and now and how we can best help ourselves. People who are honest and open and need a safe place to say ‘this is how I’m feeling’ without having to over explain why – cos we would probably get it!
So, if you are reading this wherever you are, I’d love to hear from you.
I started this Blog for me, as a therapeutic tool for me to get down in words how things are for me. However, I also want it to help others if I can by sharing my own journey. I would love some feedback – honest and open – and maybe we can then support each other on this journey.