Time for a change
Living with Young Onset Parkinson's
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9M ago
Saturday 20 August 2023 Nothing lasts forever, least of all this blog. After nearly 7 years, 200 posts and 55,000 views, I've decided that this will be the last entry. It's not that there isn't more to write about. I could talk about some of the research I've recently started to get involved in, the slow but inexorable decline in my faculties, some new Parky friends I've made recently, or miscellaneous things like the Parky that went into space last week. It's just that it feels like time to move on. Most of these topics can be the subject of YouTube videos for LivedHealth Parkinson's ..read more
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Life in slow motion
Living with Young Onset Parkinson's
by
1y ago
Saturday 27 May 2023 My mother and I shuffle slowly along the trails through the woods at the back of her house. Our time together is precious and yet I don’t mind that we spend it in this way. In fact, I can think of few places I’d rather be than arm in arm with my mother in the English countryside surrounded by the glorious full bloom of a sunny day in May. The slow pace allows me to tune into nature and gives me time to appreciate the beauty around me: the vibrant green of the beech and silver birch trees in their explosive growth phase; buttercups, daisies and bluebells lining the path. Bu ..read more
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If at first you don't succeed
Living with Young Onset Parkinson's
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1y ago
Tuesday 16 May 2023 “FUCK!” I shouted, loud enough for the neighbours several doors away to hear. The IKEA wardrobe I had been struggling to assemble for the last hour collapsed and a heavy plank gave me a hefty whack on the head on its way down. My immediate concern was concussion. I was a bit dazed and concerned about my brain and any possible swelling that might result. That was until I noticed the blood dripping onto my T shirt and trousers. “Fuck,” I said again, this time much more quietly. I called to Clare for help. She cleaned me up in the bathroom and made me a cup of tea. I sat in th ..read more
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The C word
Living with Young Onset Parkinson's
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1y ago
Saturday 25 February 2023 The C word has only 4 letters but it’s a big word. A word that used to be used in open conversation but is now taboo. These days, if it is said at all, it is said in hushed tones with an air of embarrassment. It’s no longer acceptable to throw it into serious talk, let alone casual chatter. Dare I actually spell it out here? Finding a “cure” was once everyone’s objective. And not just a cure for Parkinson’s. As neuroscience evolved there was confident talk of curing Alzheimer’s and Motor Neurone Disease, and various other neurodegenerative conditions. But now we sp ..read more
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Making a difference
Living with Young Onset Parkinson's
by
1y ago
Saturday 11 February 2023 Two years ago I set in motion a radical career change. I applied to do a Masters degree in neuroscience, handed in my notice at the company I’d worked at for nearly a decade, and set about venturing into the world of medical research, hoping in some small way to make a difference. To some extent my hand was forced as I simply couldn’t manage the workload of a fast-paced corporate job any longer. But I decided that rather than slide quietly into early retirement, I would try to put my remaining years - and brain cells - to some use. So, as I approach six months since c ..read more
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Return of the nightmare before Christmas
Living with Young Onset Parkinson's
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1y ago
Sunday 15 January 2022 After the recent highs of my time in Venice, reality came crashing down this weekend. You may recall that two years ago I wrote about the fact that my daughter, Rosa*, suffers from a horrendous facial pain condition called trigeminal neuralgia. It's among the most painful conditions known to medical science and is sometimes called the suicide disease because some of its sufferers choose taking their own life over living with the pain. The good news is that the pain has been controlled most of the last two years, by an ever increasing pharmaceutical cocktail that incudes ..read more
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‘Tis the season to be jolly
Living with Young Onset Parkinson's
by
1y ago
Sunday 18 December 2022 Last night I saw a fabulous performance of Handel’s Messiah in the beautiful 16th century Scuola Grande dei Carmini, and this morning I woke up to blue sky and radiant sunshine in Venice. What’s not to like? After a couple of weeks of cold, rain, fog and empty backstreets, Venice has suddenly come alive in the run up to Christmas. A funfair has appeared near our apartment, the Christmas tree is sparkling in Piazza San Marco, magical decorations adorn the shopping streets, and the bars and restaurants are now buzzing with banter and laughter. Every morning I go for a sh ..read more
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Ukraine
Living with Young Onset Parkinson's
by
2y ago
Sunday 6 March 2022 This is not a political blog. It’s simply a blog about one person’s sometimes trivial musings on living with a progressive neurodegenerative condition. But when something like the Russian invasion of Ukraine happens, I feel compelled to speak out. It seems incredible that in 2022 a developed country of 43 million people on the edge of Europe could be brazenly invaded by its neighbour, seemingly to satiate the imperialist desires of one man, Vladimir Putin. Scenes of devastation and, at the time of writing, 1.5 million refugees enduring brutal journeys, fill our TV screens ..read more
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Bah humbug
Living with Young Onset Parkinson's
by
2y ago
Thursday 16 December 2021 I don’t really like Christmas any more. Writing cards, going shopping, wrapping presents, decorating the tree… all of them are, frankly, a pain in the neck, or, more literally, a pain in the hands. Everyday activities like getting dressed or grocery shopping are getting harder as it is without this burden of extra tasks requiring fine motor control. I went to see my mother yesterday for a pre-Christmas gift-and-card-swapping visit and it was almost comical: mother and son, both with Parkinson’s, sitting on the floor trying to wrap a present for one of my brothers. We ..read more
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Rediscovery and inspiration in Paris
Living with Young Onset Parkinson's
by
2y ago
Saturday 27 November 2021 I'm pleased to report that Paris is still the vibrant, bustling melting pot of culture and creativity that it was when we were last here four years ago. In fact, I haven't been anywhere outside the UK for well over a year, so this weekend has been one of rediscovery. Rediscovering Parisian art galleries, the metro, street artists, a bag of chestnuts and a warming cup of vin chaud in Monmartre. Rediscovering how to order breakfast in a foreign language, how to read a map in a foreign city, how to tip a waiter, how to buy a French train ticket. Paris is comfortingly fam ..read more
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