Another year has rolled on by since I wrote my last blog for World Parkinson’s Day, which I have just reread. How upbeat and positive I sounded last year! I still am quite a lot of the time, but much has happened in the last twelve months to bring the reality of living with Parkinson’s into sharper focus.
By autumn last year, my symptoms were swinging ever more rapidly between extreme dyskinesia (jerky movements, which are a side effect of the medication) and bradykinesia (slowness of movement, which is a symptom of Parkinson’s and which can leave me virtually immobile) with hardly any ‘good’ time in between.
Things came to a head in early October, when a friend came round one evening and could clearly see that I wasn’t coping. Between us we agreed that she should call an ambulance. This resulted in me spending the next two weeks in hospital so that my medication could be adjusted to try and stabilise my symptoms.
Life in hospital is very different from life in the outside world. It runs on NHS time and NHS rules and procedures. Without realising it, you can get sucked into a system leaving you feeling a little out of control. Never has my life revolved more around how and when to use the toilet and the need to ask for help every time, due to my lack of mobility! In a matter of weeks, I went from living independently to finding it hard to walk around my hospital bed. I am extremely grateful to live in a country which has an NHS and the care I received from the nursing and care staff was, overall, excellent. However, there were a few occasions, usually at night, when I was brought to tears by a combination of my own frustration and a lack of empathy from a staff member.
Day times were better and were buoyed by a steady stream of visitors who I looked forward to immensely. I also absorbed everything going on around me; you can’t help but hear and see into the lives of the other patients when there is only, at best, a thin curtain separating you from the person in the bed next to you.
I became especially fond of one lady who was on the ward all the time I was there, who I had initially found slightly irritating but who gradually became a ‘comrade in arms’.
However, the daytime also brought the ward consultant who I came to refer to as the ‘doctor of doom’. He arrived at my bedside on my first full day on the ward and, although he admitted that he was not a neurologist, informed me that my Parkinson’s was quite advanced. Now, bearing in mind that I had been independent a matter of weeks previously and this had never been mentioned before by my actual consultant neurologist nor by my Parkinson’s nurse, maybe I should have questioned this straightaway. But as I was sleep deprived, immobile and in an unfamiliar place, this news came as a body blow to me. A quick look online after he had gone (having a phone in hospital is both a blessing and a curse!) brought up advanced Parkinson’s and end of life care.
When I finally got to speak to my consultant a week later, he was quick to debunk this diagnosis, saying that with the right treatment plan I had years of independent living left. By then though, I had endured several visits from the ‘doctor of doom’ who always seemed completely puzzled by my situation and left me feeling uncertain about what the future held. In his honour, I wrote a poem about him and his fellow ward doctors: Little Gods (or an ode to the Doctor of Doom)
Like little gods they glide in
From nowhere, as if on water
Their disciples trailing in their wake,
Tap tapping on their laptops
Diligently noting
The proclamations of the deities
Those two weeks in hospital changed me. Not fundamentally or forever, but since then I have not always felt my usual cheery self. Anxiety and low mood can be symptoms of Parkinson’s, however I think the lack of control and autonomy which I experienced while in hospital didn’t help. What did help was that it kickstarted further changes to my medication which now give me better control of my symptoms and mobility, with more changes in the pipeline, including the possibility of deep brain surgery. I realise I mentioned this in the last blog and, due to a mix up with my referral, I am yet to have an initial assessment. Hopefully I will have an update on this for next year’s blog!
I think again of the poet Mary Oliver’s words, with which I ended the last blog on, and which I still hold close to my heart – “Tell me, what is it you plan to do with your one wild and precious life?”. How is my life wild and precious?
Certainly in different ways to how I expected it over four years ago, before I was diagnosed and before Paul, my husband, died, but in ways that are still life enhancing and meaningful:
- Finding the wonder in poetry through the U3A poetry group
- Sharing our trials and triumphs in our ‘Parkys in the Pub’ group (and remembering our lovely friend Alistair, who died unexpectedly last year)
- The peace and friendships made through being part of St Bartholomew’s church in Winchester (a beautiful old church near where I used to live)
- My fellow ‘travellers’ on the grief journey who meet once a month at the cathedral refectory for a coffee morning (it’s more fun than it sounds!)
- The friends I’ve made at Chesil Lodge where I now live, some of whom I can sometimes be found sharing a bottle of wine with on a Sunday afternoon!
- Not forgetting my amazing family and friends who I have known for years and who help steady my ship when it threatens to go off course.
There are glimmers of light all around if you take the time to look.
Want to read more of Rosie’s story? follow this link to read her 2025 Parkinson’s blog
For more information about Parkinson’s disease, follow this link to visit Parkinson’s UK
