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
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…
The 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 readingParkinson’s awareness week runs from April 10 to April 16, 2019. It seeks to raise awareness about Parkinson’s disease, which affects around 130,000 people in the UK and 14 million worldwide. The organisation Parkinson’s UK, amongst others, funds continuing research into a cure; it reaches out and helps people who suffer from the condition and their relatives and friends who support them.
Continue readingProbably my main frustration with Parkinson’s is the difficulty I have in walking. I do the Parkinson Shuffle sometimes or I tend to drag my right leg. It’s a particular problem going uphill. And we do live on quite a steep hill… So, if I go out early in the morning and walk up the road towards the railway station I’m very likely to shuffle, limp and perhaps come to a grinding halt after crashing into a tree or lamppost. On the other hand, if I start by going down the hill, after about 10 minutes I am walking quite freely.
I try and go for a walk most days for around 40 minutes. Often I listen to music as I go. Bruce Springsteen and New Order work very well to help improve my step. I’ve also noticed other things that assist me. A nearby road has a pavement of flagstones rather than tarmac. The lines of the flagstones are at just the right distance for me to place my foot. This makes it much easier for me to make a full step with the right foot. The other thing which helps me is to blinker my eyes with my hands to shut off noise and to allow me to concentrate on walking forwards. This one really works…. even if onlookers think I’m mad. But my walking varies from day to day and it is frustrating not to be able to be sure how long it is going to take to walk to a particular destination. When people ask how I am, I often reply ‘My walking hasn’t been good today’ or ‘I’ve been walking really well recently’. Health is measured by walking pace and never, sadly, do I get that feeling of exhilaration when you start walking in the morning and sense the energy flowing through your veins.
parkinsonSpace 