It’s a very long time since I posted here. Lots of things have happened. I officially retired in October 2022, but am remaining active. My Parkinson’s is generally under control, and I’ll try and write more about that soon.
Thank you to all who have been in touch. I’ll try and respond. Thanks for your patience.
Season’s greetings and all the best for 2023.
Jeremy
Last week I wrote about pessimism and the difficulties of the last few months. This week on some days I have been absolutely euphoric. My walking has sometimes been excellent, as it used to be before I was diagnosed. That feeling comes a few times a month, now more frequently than it used to. It comes when I start walking and feel a lightness in my legs, pushing off with the foot and striding out along the pavement.
Continue readingI haven’t really written much in the blog recently. The last post was at the end of September, just before teaching began, when I left a video for my students to explain the symptoms of Parkinson’s. Over the last few months, I’ve had some ups and downs – more downs than ups, I think sometimes. I certainly haven’t managed to produce posts as frequently as I had before the summer, so in the near future I would like to talk more about specific events such as the holiday in Malawi, the return to work, voice therapy and physiotherapy, amongst others. These are all Good Things. However, today I want to focus on the downs of Parkinson’s.
Continue readingI face a difficult conundrum: I’m often invited to speak about translation studies in universities across the globe, but a 12 hour flight is not the most suitable for someone who is suffering from stiffness that gets worse if I remain sitting down for more than half an hour. Add in some anxiety amongst large groups of people (as a rail station or airport for example), plus a conscience plagued by climate change, and you will be able to appreciate that a long-haul flight has its downsides.
A couple of weeks ago I was kindly invited to speak at conferences in Hong Kong and Shanghai. It was a chance to catch up with old friends, meet new people, share my experience and learn from the work they are doing. People are sometimes surprised that I continue to make these trips. But for me they are enriching and, with a little planning, not too onerous. I normally ask for special assistance at the airport, which sometimes means I am pushed in a wheelchair, but, as long as I am not depriving someone else, I’m not too bothered because it means that I have a quick route through security and passport control. It’s there that I need a little help, taking things out of my bag and rearranging them after they’ve passed through the scanner. When I get to the gate I’m allowed to board first.
The employees in the airport are sometimes surprised to see me arrive carrying a rucksack and pulling a small suitcase and at the same time asking for special assistance. That’s the nature of the condition: semi-visible but always nagging. The assistance I receive is very important for me as it reduces the stress of the journey and makes the whole experience much more enjoyable.
I was met at the airport in Hong Kong and Shanghai by a student assigned to look after me. Many thanks to them! I find that on these trips everyone is always so keen to help me and I’m very grateful for it even if sometimes they are unsure exactly what I need. So I’d like to thank everyone who made my stay so enjoyable and rewarding. Just a couple of regrets: my delivery of talks has become more monotonous because of the condition and I need to work on making it more dynamic; to tell the truth, I didn’t help myself by forgetting my watch and being unaware that I had finished my first talk 10 minutes early. The other slight regret was food again. It was all so wonderful, yet I’d convinced myself that I could no longer use chopsticks because of my weakened right hand. Let me state clearly: ‘chopsticks beat knife and fork when it comes to eating Chinese food!’ It was only back home a few days later that I challenged my thinking and decided to take up the sticks again. The result can be seen in the video…
Should I tell people I have Parkinson’s? What are the benefits of doing so and what might hold me back from saying it?
Well, since I’m writing about it in a blog I can say that I have told people and I do think there are benefits from being open about the condition. When I was first diagnosed I told my immediate family and my employer then my friends when I saw them or spoke to them. To my children, who were quite young at the time and had seen how I had problems with my hand, we said that I had a condition that would not get better and that it affected and will affect my mobility. It was a few months later we told them it was Parkinson’s.
Continue readingThe slow food movement, founded in Italy in the 1980s, is well established; it stands for high quality, diverse, natural foods that are preferably sourced locally. All power to them. But I’m thinking of setting up a slow eating movement, and I am sure it would attract many people with Parkinson’s.
Continue readingIt is frequently commented that Parkinson’s disease leads to a softening of the voice. For example, see the blog named A soft voice in a noisy world. But I don’t find so much written about the second half of that blog, that is, the effect of noise on Parkinson’s patients.
Continue readingPeople sometimes ask what it feels like to have Parkinson’s disease. It’s really difficult to describe. Parkinson’s is ever-present but does not cause me acute physical distress – not at the moment anyway. The only physical pain I sometimes get is in the back of the neck, especially when I’m walking or when I’ve been sitting for some time. The body strains to keep everything going, but that strain to communicate from brain to limb seems to get clogged in the neck and the dull pain prevents me from relaxing. Something similar happens with my exercise bike: nice comfy seat, large pedals, supporting bars and handlebars… but the optimum cycling position becomes a pain in the neck after a couple of minutes and forces me to punctuate the cycling with moments of supporting my neck.
Continue readingDo I get that “butterflies in the stomach” feeling as my appointment with the consultant approaches? I see the consultant approximately every six months and in between appointments see the Parkinson’s nurse a couple of times. Seeing the specialist consultant is quite a big event in my calendar. She is friendly and engaging, but the real point of the meeting is the evaluation of my condition and the progression of the Parkinson’s.
Continue readingWorld Parkinson’s day is April 11 each year. It is the birthday of James Parkinson, who in his “Essay on the shaking palsy”, published in 1817, was the first to identify what became known as Parkinson’s disease. To rephrase Billy Connolly, I wish the man had kept it to himself.
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