World Parkinson’s Day: Loss and living with Parkinson’s

Action Hampshire’s Operations Officer, Rosie Duffy lost her husband in March 2022, two months after she had received a Parkinson’s diagnosis. In November 2022 she wrote a blog about her experience. She has just written a second blog in which she talks about how she manages her grief and how she focuses on the day-to-day, accepting her diagnosis and moving forwards. Through friends, family and meeting new people (and a little bit of exercise!) she finds ways to build a new life for herself.

An update from Rosie

I remember finding it a cathartic process writing that blog, but I struggled to re-read it as it took me back to the day Paul died and the subsequent months of raw grief. Being diagnosed with Parkinson’s was a walk in the park in comparison!

Anyway, the months have rolled on and I’m finding, as they say in the bereavement world, ways to grow around my grief. I no longer see my lovely visitor from Winchester Bereavement Support and instead go to a monthly coffee morning run by the charity, which meets at the cathedral refectory and where I’ve made some good friends. It’s a lot jollier than it sounds! I came across the Widow Podcast which I’ve found helpful and the book Resilient Grieving by Lucy Hone was an inspiring read. I’ve adopted a tree in memory of Paul at Hillier’s gardens near Romsey where we can go as a family to remember a very special husband, dad and granddad and watch the tree grow through the changing seasons. I chose an obscure Shakespeare quote for the label, which now dangles from one of the tree’s branches. Paul was a big fan of Shakespeare, particularly the tragedies and could quote whole chunks from Macbeth!

Making a move…

In the summer last year, I heard that an extra care flat had become available for me at Chesil Lodge in Winchester. This was something I had wanted and had applied for, but the reality of leaving the home which Paul and I had shared together was tough. It also by necessity meant sorting through his things, which had been such a comfort to have around me. He was a voracious reader and we had managed to cram what seemed like thousands of books into a 2 bedroom flat. In the end I had to be fairly ruthless and just keep the items that meant the most to me. Thanks to an army of family and friends providing practical help and support, I moved into my new flat in September. The first month after the move was hard and I struggled to find my way in a new place with new people, but now I love it. I’ve enjoyed making the flat my own (I could choose whatever colour curtains I liked without having to run it by anyone!) and if I feel like it, I can join in with social gatherings like quiz nights and pizza nights with some of the other residents. There is also support on hand when I need it, which is invaluable.

Is there a silver bullet?

When I wrote the blog, I was waiting to see a Parkinson’s specialist, who I was secretly hoping would find the silver bullet that would fix my mobility issues. He didn’t do this. I’ve since realised that wishing for a silver bullet when it comes to Parkinson’s is not a helpful way of thinking. Acceptance is much more beneficial, both physically and mentally. My mobility can fluctuate markedly throughout the course of a single day – at some times I can walk unaided, at others I’ve had to resort to a wheelchair. Most of the time though I’m moving much better than when I wrote the blog. I’m learning to go with the flow, not apologise for being an inconvenience and definitely not give myself a hard time about it. Exercise helps as does timing the medication around meal times. Ideally its best to take the tablets on an empty stomach as food, especially protein, can adversely affect absorption of the medication. I’ve learnt a lot of hints and tips for living with Parkinson’s from the Movers and Shakers podcast. Some of the episodes make for salutary listening, particularly around the increased risk or dementia for people with Parkinson’s. However, I made a decision pretty early on to not worry too much about what the future holds and to try and focus on enjoying the day at hand. It has taken a while to get my medication levels right. For a while I was on quite a high dose as they tried to manage my mobility issues. However this caused me to develop dyskinesia, which resulted in my body being excessively jerky, one of the side effects of the medication. I began to dread taking my medication in the morning. Fortunately, with some tinkering, the levels are about right now – I can move well most of the time with just a bit of twitchiness. I go to a neurofit exercise class at Winchester leisure centre for people with neurological conditions, where I’ve made more new friendships.

Heaven is now

I was sat in my new kitchen a few months ago, eating my breakfast and listening to the Today programme on Radio 4. One of the presenters, Amol Rajan, was talking to the Anglican bishop, Rose Hudson-Wilkin, about grief and the nature of heaven. Amol’s father had died a couple of years previously and he had been knocked sideways by the force of his grief. While he doesn’t claim to have a faith, he has, in the wake of his dad’s death, wondered about heaven. I have done the same. Rose Hudson-Wilkin’s response was simple, “Heaven is now”. Life right now is full of wonder and beauty, if we only take the time to look around us.

Finding a “Pocketful of Happiness”
A year in Rosie’s life, and how Parkinson’s can be fought a day at a time.
Follow this link to read Rosie’s first blog

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