Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Morality and Parkinson’s

I recently had cause to take a good hard look at my own behaviour, and the way in which I was reacting to other people.

It’s difficult to accept that you might be selfish or careless of other people’s feelings. It’s also far too easy to blame it on an illness – or the drugs used to treat that illness – especially if you are aware that this is a possibility.

Which it is…

In July 2015, a study was published that suggested levadopa (the most prevalent treatment for Parkinson’s, and the key ingredient in the Sinemet that I take) made healthy subjects more selfish. The same study also looked at an antidepressant drug that increased serotonin levels, and that drug was found to make people more caring.

To my mind, the study was based on a simplistic and fairly extreme premise, probably out of necessity – morality is difficult to measure. The study used the choice to deliver a painful but not intolerable electric shock to either oneself or another person (not present in the same room). In both cases, cash could be paid to prevent the shock. The amount that people were prepared to pay to avoid harming themself, and to avoid harming another, was monitored and compared. The findings can be summarised as follows:

  • those whose serotonin levels were increased were willing to pay significantly more to avoid harm to another than to avoid harming themselves
  • those whose brain chemistry was unchanged (because they took a placebo) would still pay more to avoid harm to others, but not as much as the increased-serotonin group
  • those whose dopamine levels were increased paid equal amounts to avoid harm to others and to avoid harm to themselves

I would like to think that, even with levadopa, my judgement would err towards the altruistic avoidance of harm to another. And perhaps it would – the results were, after all, averages. However, I have never, to my recollection, found myself in that sort of situation.

But what if the situation was more subtle? If it were more a matter of insensitivity, not paying full attention to what others were doing, increased focus on the self? If it were a matter of taking opportunities without paying heed to the limited nature of the opportunities and to other’s desires to take the same opportunities? I think I have been guilty of these things. I’m not sure that it is entirely down to drugs, either; at least some of it is inherent in my personality (I know that I am quite good at some things, and I also know that I can come across as patronising or condescending as a result of the first knowing without meaning to; I try to guard against this tendency, but I do not always succeed). At least some of it must be due to Parkinson’s itself – the difficulties in doing things that didn’t ought to be difficult, that didn’t used to be difficult, and the self-awareness that comes with the process of constant adjustment (because the effects of Parkinson’s vary from day to day, from hour to hour, and gradually become more frustrating over weeks and months). And another part, again, is a result of the knowledge that, because I have Parkinson’s, my timescales are reduced.

Interestingly, I have recently started taking an antidepressant called mirtazapine. This is not the same drug that was used in the study (that was citalopram); it is described as “an atypical antidepressant” because it only targets one type of serotonin receptor in the brain. But it does still increase serotonin levels.

I take mirtazapine to counteract the excessive wakefulness that sinemet causes (that is, it helps me sleep). Might it also go some way to counteract the apparent selfishness that sinemet causes?

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Mervyn Peake Awards 2016

2016-07-06-1-London-1000The Mervyn Peake Awards 2016 were presented on Wednesday 6 July at the OXO Gallery, London. That’s on the South Bank (of the Thames), a short walk from Waterloo station. There was an awards ceremony and exhibition launch event in the afternoon and a VIP preview in the evening.

The exhibition is billed as a celebration of the creativity of people with Parkinson’s, and it is the first year that a full exhibition, open to the public, has been held in such a prestigious location. I have two pieces in the show: Ridge, a landscape that was shortlisted for the art award and Shelves of Inspiration, a composite still life and imaginary piece that won the multimedia themed award, “Inspire”.

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As a winner of one of the awards, I had been invited to both events, along with my guest, Sophie (aka PollieMath). It was truly wonderful to have Sophie’s company; we have much in common and had a lot to talk about… and a lot of things to draw.

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I must admit that I found the whole being-a-winner-experience rather odd. I’m not used to the attention, although I did appreciate all of the positive comments about the winning painting. Inspiration is a very individual thing, and this painting was a very personal piece, and one that I spent a lot of time on – both planning and painting it.

I duly received my award from the fabulous Anders M. Leines, Norwegian photographer responsible for the thought-provoking exhibition “This is Parkinson’s”. Anders asked me if I had anything to say. “No”, I replied (which at least amused the audience), and offered me a hug. That was nice.

The full video version of Ander’s exhibition is on display at the Mervyn Peake Awards exhibition, which is still running – on until 10 July – so, if you’re in London this weekend, do try to visit it.

And if you do visit the exhibition, I’d love to hear what you think.

 


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Thatcham, Berkshire – Summer Craft Market

The daughter of one of the other members of my local Parkinson’s UK group is co-organising this event. This is the press release:

Pineapple Palace’s Summer Market for Parkinson’s UK

 

A group of local crafts people and artists will be hosting a fundraising weekend at the Pineapple Palace from Friday 17 June to Sunday 19 June to raise funds for Parkinson’s UK.

 

Pineapple Palace, located at Lower Way Farm in Thatcham, is a unique shop and café supported and stocked by a number of local artists. The Summer Market will include craft demonstrations, music, food, children’s activities, raffle prizes and over 50 quality craft and arts stalls exhibiting over the weekend.

 

For one of the artists, the cause is personal. Sophie Callaway owns Sophie Waite Ceramics, and has a studio at Lower Way Farm next to Pineapple Palace.

 

Sophie explains: “Eleven years ago my Dad was diagnosed with Parkinson’s. At the time I had little knowledge of what that meant, but over time we have discovered it is a cruel condition that affects different people in different ways and the severity can vary from day to day.

 

“My Dad started with a tremor and now has many more symptoms such as slowness of movement, fatigue, rigidity and restless leg syndrome. He belongs to the local Parkinson’s UK Newbury group and Newbury Sparkies and I know he and my Mum enjoy the support and friendship this group provides as well as taking part in the exercise classes, voice coaching and sessions at the Therapy Centre that the group offer.

 

“In April our whole family took part in the Walk for Parkinson’s – Welford Park.  It was a great day and it felt amazing to help raise awareness of this progressive condition. I am delighted that I can have the opportunity to support Parkinson’s UK again, along with the MS Therapy Centre, at the Pineapple Palace Summer Market.”

 

Paul Jackson-Clark, Director of Fundraising at Parkinson’s UK, said: “I’d like to wish Sophie and the Pineapple Palace team the very best of luck with their fundraising weekend. I hope local people will join them for what promises to be a fantastic weekend with something for everyone.

 

“As the UK’s Parkinson’s support and research charity we’re leading the work to find a cure, and we’re closer than ever. But our work is dependent on donations.”

 

To find out more about fundraising for Parkinson’s UK visit www.parkinsons.org.uk/fundraise or email fundraising@parkinsons.org.uk

 


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Mervyn Peake Awards 2016 – Inspired!

Shelves of Inspiration, acrylic on wooden panel, 40 x 40 cm

This is my winning entry to this year’s multimedia themed category. The theme is “Inspire”. My idea was that I find inspiration in many things – everywhere – and in many ways, and so I created a set of shelves to display them on.

Parkinson’s UK’s official announcement is here.

I was also shortlisted in the art category with “Ridge”.

Ridge, oil on canvas, 30 x 40 cm

But my poem didn’t make the grade.

I am illusion

I am illusion,
A 2-d invitation,
To step into, to step right through
The picture plane, to find anew,
Space to be, time to see.

I am distraction,
Reflection and refraction.
See the world through another’s eyes,
Another’s truth, another’s lies.
An other understanding.

I am perspective,
Inherently subjective.
I revolt, revive, reward.
I am everything, nothing, all.
I am life. I am art.

 

 

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Welford Parkinson’s

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Bluebell woods at Welford Park, Berkshire

Somwhat belatedly, here are some pictures from our walk in the Park in April. I carelessly allowed my camera batteries to go flat, although the camera in my smart phone was able to take reasonable images in the brilliant sunlight that we all enjoyed that day. The ink in my assorted fountain pens didn’t run out, though, and I made a fair few walking-sketches…

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Jenni from Parkinson’s UK, the organiser of the walk, talking to the assembled walkers at the beginning of the walk

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The official photographer. The incongruity of drawing photographers at work appeals to me…

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Assorted scenes from during and after the walk