On 'learning to surf' and 'dancing in the rain'

The storms of life bring wind and waves and rain; you can't stop the storms, but you can learn to surf, and you can learn to dance in the rain. Thank you, Jon Kabat-Zinn, for such memorable encouragement when times get rough; thank you, Charlie Mackesy, for telling us to hold on, that the storm will pass; and thank you, lovely friend Tricia, for the well-chosen card that reminded us to keep on dancing, despite the rain!

In the 12 years since Euan was diagnosed, we have definitely learnt to dance in the rain and surf those waves - the alternative is to give in and give up. Utterly unthinkable.

Choices

Dr Edith Eger, psychologist and 93 year old Auschwitz survivor, says, incredibly, that Auschwitz gave her an opportunity - the opportunity to choose. No one could take away what was inside her mind; she could choose how to feel and how to react, and she felt she was freer than her guards. Dr Eger says it's not what you feel but what you do with those feelings that counts.

Dr Eger says it's ok to say, 'Why me?' and it's ok to grieve, because you have to go through the rage - 'You don't cover garlic with chocolate, you can't heal what you don't feel' - but her stern warning is this: don't get stuck there. Once you have worked through the grief and the rage, rather than asking, 'Why me?' the question has to become, 'What now?'

Listen to a conversation with this inspiring woman here: https://drchatterjee.com/auschwitz-survivor-dr-edith-eger-on-how-to-discover-your-inner-power/

It's not what you feel but what you do with those feelings that counts...

Dr Eger is very clear that it's all about the way you think - you create what you think, you create the feelings, you create the behaviour. Changing our thinking can change our lives.

There is so much here for our life with Parkinson's. Euan and I could have chosen to be victims, enthralled to Mr P (and now the dratted Mr D), but instead we have done our best to be proactive and positive, finding ways to do things differently so we can always keep moving forward, always trying to ask, 'What now?'

Reasons to be cheerful...1, 2, 3....

Sure, we have had to let some things go, we have had to adjust, but when we stop to take stock of what we have gained since that dreadful news in 2009 (and worse again in 2020), it really does give us reasons to be cheerful (parts 1, 2 and 3 for the Ian Dury fans amongst us).

We've made so many positive and proactive choices over the last 12 years:

• to keep travelling for as long as we can - we've been all over the world, including trips to see precious family in Australia, and although we might not do any more long distance travelling, and we might no longer include kayaking and segway adventures, we are still planning trips. We intend to get to North Uist in the summer, and to head up to the far north west of Scotland, so that Euan can see some of the coastline and beaches and islands he missed when he was ticking off all the Munros: he has never seen the machair, so that is our mission in 2021.

• to enjoy our house and garden for as long as we can - we moved to a smaller more manageable house while we were still able, so we could still enjoy our living and garden space. We chose a house where we could live on the ground floor, and where could walk to the shop, the post office, the bus station, the doctor - we can even walk to the beach, who knew that would be a thing in our lives - thank you Mr P! And we have gradually altered the house and the garden to make them a bit more future-proofed so we can go on enjoying Westhaven for a good long time to come - we even have room upstairs for a live-in carer, should that ever become an option.

• to stay fit for as long as we can - Euan ran every day when he was still working, even in driving February rain, because he knew a day would come when he might not be able to run as far or as fast. We chose to move to Ayr to be by the sea so he could run on the beach and so we could be somewhere flat with lots of facilities within walking distance of the house, for the time when mobility might be reduced. Euan can't run now, but as his running declined we bought a rowing machine so he could reconnect with a sport from his youth. And now that walking is a bit tricky - well, you've seen his turn of speed with the wheeled walker! He kept falling off his road bike so we bought an electric bike to give him a bit more momentum (and I've had to buy one too, so I can keep up!). It means we can still get out with friends, we just stay off the roads and find beautiful country trails to explore. Euan embraced the chance to try ballet for PWP when it was offered, and during Covid, when it went online, he has still joined in enthusiastically from home. And I try to get my exercise when I can, on the rower, on the trampet, doing weights and Pilates in our little gym space and walking and biking at my own pace when I get the chance.

• to enjoy our outdoor adventures for as long as we can - as Euan's balance deteriorated, we progressed from our mountain tent to a medium sized tent, then to a large family tent, then to a caravan - and now that Euan can no longer drive we have moved on to a motorhome - nothing will not stop our camping trips! We can't tour in the same way and tend to stay in one place for several nights, but Scotland has so many magical places that's. not a chore! We also try to meet friends when we are camping to keep the sense of adventure and fun.

• to spend quality time with as many of our lovely friends as often as we can - that used to mean dinner parties for 20 and busy weekend house parties; now we have intimate coffee and lunch meetings with one other couple at a time, or small group Zooms, but those social interactions are our life blood and we won't let them go.

• to be active in the community - when Euan retired early and we moved to Ayr, we chose it in part because there is a vibrant and active community spirit here. We threw ourselves in with a will, joining Ayr Rotary (where we have made many really good friends), joining the curling community, finding a swimming community for me, volunteering on the coastal path maintenance team for Euan. We also jumped at the chance to help set up the Ayrshire Young Parkinson's Group and this special bunch of folk has become like family to us.

• to have as much fun as possible - with friends, with family, with each other.

A whole new world of opportunities

Our Parkinson's community has led us to a whole new word of opportunities: attending an inspirational conference for people affected by young onset PD; organising lots of outings activities for our own YP group - I've had afternoon tea on a steam train and visited a gin distillery on Arran, things that were fabulous fun, that I would never have done if it wasn't for Mr P; indeed, I would never have competed in a triathlon either, or swum all through the winter last year, and I'm so thrilled to have had these opportunities.

We just keep adjusting the parameters as time goes on, surfing the waves as they continue to wash over us, dancing in the rain rather than waiting for the storm to pass.

In fact, this blog has come out of our involvement with Parkinson's. If I hadn't been asked by Parkinson's UK Scotland to contribute to the carers' session for the national YP conference last autumn, my thoughts and feelings would never have gathered the momentum that has led to me creating 'You, Me & Mr P.' So I find I have to say, 'Thank you, Mr P!'

Who knew that pesky chap would ever have me feeling grateful? I'm off to get my surf board and umbrella...