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
Today, Saturday 11 April, is World Parkinson’s Day. Although many of the planned events have been cancelled because of COVID-19, the day and the week are still being used to raise awareness about Parkinson’s.
For more details in the United Kingdom, see the website of Parkinsons.org.uk . Click here for the precise page.
One of the features is an interactive map containing stories of many people who live with Parkinson’s.
If I were to highlight one feature of my Parkinson’s that I would like people to know, it would be that I just need a little more time to adjust to things and to plan any activity. This may be frustrating for me and for you, and sometimes things go wrong. By all means ask if I need help (I will accept if I need it) but don’t assume I can’t do a task. Be patient; I will usually get there in the end.
Here is how I feel, at home on 23 March 2020.
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.
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 readingIn this video I explain to my students at University how I have adapted my teaching in view of my Parkinson’s.
August 5, 2019. We are beside Lake Malawi, an enormous expanse of water that marks Africa’s great Rift Valley. I’m on holiday with my family, staying with the family of friends, wonderful people who run the small, palliative care charity Ndi Moyo. Although I’m here on holiday rather than for treatment, the kindness, attentiveness and practical support of the family reduce my stress and give me time to exercise and relax; the tranquillity of the location creates a perfect environment. I still have work to do for the University, and we try to help the charity’s hospice a little in different ways, but time seems to slow and my symptoms are generally under control.
Ndi Moyo means ‘the place giving life’. It was set up in 2004-5 by the remarkable Lucy Kishindo Finch with the help and support of her husband Tony Finch to provide care for people suffering from painful and incurable illness. Palliative care scarcely existed in Malawi at the time; Lucy, an experienced nurse, had seen just how bad the situation was at one hospital where all the pain relief they could offer one dying man was aspirin. Today Ndi Moyo has a local staff of 20 and provides treatment and help to patients and training to nurses throughout the area of Salima, where I am told there are only two fully qualified doctors for a population of 500,000. The charity does amazing work in difficult circumstances and is dependent on donations and gifts to fund its work. Please check out their website (ndimoyo.org) and give as generously as you can.
Relatively low incidence of Parkinson’s is reported in Malawi and surrounding countries. However, the number of cases is likely to be much higher because many people are unable to consult a doctor or they are possibly suffering from a more serious condition so the Parkinson’s remains undetected. Such contrasts put into perspective the complaints we level against our own medical services. For instance, can I with good conscience protest at having to wait 12 months for my next consultation with the neurologist when the entire population of Malawi (18,000,000) apparently depends on one neurologist and only a minority of Malawians can actually afford treatment? Of course, we should all demand a high level of attention; it’s just that in Malawi, and despite the good cheer of its people, such problems are of a different scale altogether.
So where do the title’s 80 kg of charcoal come from? One thing that has impacted me most are the roads. A few main roads are asphalted, and these are made even more striking by the never-ending procession of people on both sides of the road walking long distances in ones, twos or threes. And bicycles, often with a passenger, risking life and limb whenever a car or truck passes. A good number of these people are carrying something. Sometimes a basket of washing, sometimes a bowl of vegetables or a bundle of wood or even a baby. Sometimes the load is heavier and involves serious intervention in the natural environment: bags of charcoal, used for cooking but the product of cutting and burning that add a worrying haze to the landscape, are sold by the side of the road. The photo shows a cyclist transporting two bags, probably amounting to 80 kg. He is beginning a long upward slope. A hard slog. He keeps going, as he always does, fighting the odds but carrying a heavy burden. It is that thought that will resound for me back in London when I’m struggling uphill, working my exercise bike or simply walking along a pavement.
More from Malawi soon…
How would you feel if someone laughs at you in the street, mocking your stiff, tottering steps? Or if they accuse you of being drunk? Apparently, according to a recent survey by Parkinson’s UK reported in The Independent newspaper, 90% of Parkinson’s sufferers say that they have been harassed in some way the street while 10% claimed to have been openly laughed at.
Such figures are shocking, but, without a way of comparing them with responses from people without Parkinson, difficult to evaluate. Indeed, in many ways the bigger picture with its inevitable broad brush tends to be more clinical than the individual examples of discrimination. It is when those individual cases touch you personally that the real impact is felt.
Twice I have felt that impact acutely. First, when I was shuffling back from a meal in a restaurant where I had not had any alcohol. One of a group of young men emerging from a taxi thought it funny to tell his friends that he hoped to drink as many pints as he thought I must have downed. That is the only time so far that someone has confused my Parkinson’s with drunkenness.
The second occasion I have been laughed at occurred last week. It was late, around 8 PM, and I had to go out to buy some lemons to use in the evening meal. I was tired and my walking was poor so I had to resort to running, alternating with shuffling. I could hear two young boys behind me laughing, one running past me two or three times to look at me. Crossing the main road, I sat down on a bench to rest. The two boys crossed the road after me and looked at me as they passed, one of them mimicking my stiffness in his movement of the shoulders. What should you do in a situation like that? What should I do? Such situations make me nervous rather than angry, but I also think it is important to challenge that behaviour, to make people realise the effect they have and hopefully change in the future.
I called the two boys over and they came. I explained to them that I had Parkinson’s disease, that sometimes my walking was not easy, that I couldn’t avoid these strange stiff movements, that it wasn’t funny and the next time they should remember that. The response was, from the taller one, “I wasn’t laughing at you” and from the other “what’s Parkinson’s disease?” Then the tall one said that his grandparent had Parkinson’s and this seemed to really bring it home to them. I repeated that it wasn’t funny and that they should remember that in the future. They continued their way rather chastened but hopefully they have learned a valuable lesson.
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.
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