Hello again!

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

Living with Parkinson’s during the Coronavirus crisis (1)

It’s March 21 and Spring has officially arrived. What a strange feeling. Nature is beginning to come alive again, leaves are appearing along with blossom on the pear tree.

But we are at the beginning of a huge health crisis. London is quiet as many of the shops are shut or empty and most people are indoors. I have been working from home and today is the first day I have ventured out during the past week. The news has become ever more serious; the numbers of people infected and dying increase each day.

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Euphoria

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.

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The downs and ups of Parkinson’s

I 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.

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Flying with Parkinson’s disease

I 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…

To tell or not to tell? That is the question

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.

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