If you’d told me three years ago that by March 2025 I’d be living a full and enjoyable life, I wouldn’t have believed you. Following my Parkinson’s diagnosis in January 2022 and the sudden death of my husband, Paul, two months later, life was crashing and burning around me. The prospect of a life without him seemed too much to bear and there were times when I felt I was in a living nightmare.
Slowly, slowly though chinks of light broke through the darkness. There is something about having seemingly everything taken away from you that makes you appreciate the small moments of joy when they come. I was sitting outside on the roof terrace where I live (it sounds more glamorous than it is!) a few weeks ago, on one of the first really sunny days of the year. Enjoying the sunlight on my face and hearing the birds’ song as they emerged from their winter hideouts and flying above Winchester’s roof tops, it felt like one of those golden moments.
Of course these times don’t take away from the grief and sadness surrounding the loss but somehow offer a bittersweet hopefulness that life continues. Simon Boas, a British aid worker, wrote movingly shortly before his death last year from throat cancer, aged 47, that “life is inordinately precious, unlikely and beautiful…we should be dazzled by our good fortune – dancing on the tables every day”. In 1994, the playwright, Dennis Potter in one of his final interviews before he died, spoke of seeing a tree in his garden full of the “whitest, frothiest, blossomest blossom that there ever could be”, whereas before he would have thought, “oh that’s nice blossom”.
I’m not oblivious to the losses that I experience living with Parkinson’s and the things that are now harder to do – the ability to for walk for miles in the countryside, turning over easily in bed without giving it a second thought, being consistently mobile throughout the day, browsing the clothes shops at leisure (actually this was never one of my favourite things, but I miss it now that it’s harder to do!).
The list goes on; but there is also a new list, a list that I choose to focus my attention on. The people that have come into my life and the many new experiences, because of and despite having Parkinson’s, which bring pleasure and meaning into my life. The friends I have made through my neuro-fit exercise class and dance for Parkinson’s sessions (we’ve even formed a monthly Parkys in the Pub group!). My friendly taxi man who gives me lifts in and around town and brings me slices of lemon cake baked by his wife, the cheerful couple at Chesil Lodge where I now live who I’ve been enjoying the spring sunshine with in the garden this week. The talented, funny and sweary fellow student on the creative writing course I took in the autumn term, who made me laugh. The kind lady who I sit next to in church who will, if I miss a week, be on the phone that afternoon to check I’m OK. My jigsaw friend I’ve met through a bereavement coffee morning, who I can spend a happy Sunday afternoon with chatting and doing jigsaws. Then there are my trusty faithful friends who I’ve known for years and my family – my step children, their partners and grandchildren – Paul’s special parting gift to me. The list of things I am grateful for is ever growing!
I recently re-read the blog I wrote for World Parkinson’s Day last year. My symptoms had stabilised following some tinkering (not a medical term!) with my medication by the neurology team at the hospital. Gradually, as the year progressed however, the dyskinesia (a side effect of the medication, causing involuntary jerky movements) returned and I also started to experience a new symptom – bradykinesia – slowness of movement, which can happen at different times in the day, depending on where I am in the medication cycle. It feels like the battery has been taken out of my body and everything slows to a crawl. The Parkinson’s nurse has prescribed some ‘rescue’ meds which I can take when this happens and they usually kick in pretty quickly. I’m a bit like the Duracell bunny! More tweaking of my main meds has thankfully reduced the dyskinesia once more and currently my symptoms are fairly stable again. The possibility of having an operation at some point, called deep brain stimulation, has been mentioned at my recent appointments. This is the main type of surgery used to treat Parkinson’s and is a bit like having a pacemaker in your brain, which can help control some of the motor symptoms. It’s not for everyone and there is a lengthy assessment process, but it could give me some more good years while I am still, relatively, young. The first step is for me to have an initial chat, without commitment, with the team at Oxford who carry out the surgery. Maybe when I write my next blog, I’ll have an update on this!
I recently read a book by the comedian Miranda Hart, called ‘I Haven’t Been Entirely Honest With You’ in which she talks about living with chronic illness for many years and how she has learnt to live life differently and more meaningfully as a result of this. Far from being a depressing read, it is a story of how she has ‘come home’ to herself, to stop trying to fit into how the world expects her to be and instead to break free and live as her ‘true, wild self’. This really resonated with me. As the American poet, Mary Oliver, in her poem The Summer Day, asks, “Doesn’t everything die at last and too soon? Tell me, what is it you plan to do with your one wild and precious life?”.
For more information about Parkinson’s disease visit Parkinson’s UK
