One thing that I know for sure is that there is no “One size fits all” magic thing that will be the thing that everyone needs. What works for one person and makes them feel supported can be very different for another person. We are after all, individuals with individual personalities and needs. I have found a selection of things that work for me and no amount of telling someone what should (my most unfavorite word) work will persuade me if I don’t feel invested in it.
I have tried to do things that people tell me would be good for me, but if they don’t feel right, I am unlikely to continue. Although I worked as a Social Worker and supported people in peer support groups, I have never really had the need or inclination to be a group person myself. That is, until Parkinson’s came calling and moved in lock, stock and barrel and tried to take over my life! I found myself looking more positively at the idea of a peer group. Part of this is my 20+ years as a medical Social Worker, in that I knew how valuable the groups I had facilitated had been for the participants.
For other difficult situations in my life, I have pretty much looked after myself and had my own strategies to deal with challenges. Since being with my husband, I have him to support me in most things and I have not felt the need for a great social circle. Our lives have been intertwined and supportive and we have been there for each other in many difficult times. As an aside, although I didn’t always get on with my Mum – I was too different and too strong willed (aka stroppy) – but she once said something to me that I could use. She said to me, when things were difficult raising a young family and there seemed to be no end to whatever challenge she was facing she would say to herself “This too will pass..” from which I took that even though things are tough, they are not going to go on forever. I have said this small phrase to myself many times to reassure myself that I can get through something.
This brings me to the concept of resilience. Social Workers talk a lot about resilience. It is a recognition that we have been through tough times before – and boy have I – and we got through. If we could get through the other challenges and come out the other side still functioning – at least after a fashion – we can call on the strengths we had to get through then and use those strengths now. For those of us living in Christchurch and living through devastating earthquakes, resilience is a useful tool to use with Cantabrians. As soon as you talk about the earthquakes and share stories of what we all did to get through, you can see people nodding and perhaps for the first time, acknowledging that they had the strength to get through. Those times were tough, but they taught us much about ourselves and our capacity to cope. Things that are very much needed in this battle with Parkinson’s.
What do you do to support yourself?
What do you need and is there support to have it?
If you don’t have the supports that you need who could you talk to? Your doctor? A friend? Do you have a local Parkinson’s group you can tap into? If so, do they have support groups if that is what you need?
Do you have social supports? Even someone to have a coffee with or go to the movies with, or lunch, or playing cards or games can be fun and give you social opportunities.
If you’re interested in hearing more from me, check out my podcast of the same name. There’s a few additional thoughts that might be helpful.
https://open.spotify.com/episode/31bkPd3wiI3Z3t3TBmdpsa?si=nPcmIHkhTO2RIAZLTpkm8Q
My journey with Parkinsons 