Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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In a spin

Around a week ago (obviously when I wasn’t paying attention), there was a flurry of media attention over a “simple drawing test” that might detect Parkinson’s early. The test uses a large (A3) digital tablet and pen to measure the speed and pressure with which the subject completes a spiral indicated with dots on a paper overlay. A person with Parkinson’s is likely to be slower and to apply less pressure.

According to the Telegraph:

Scientists already knew that symptoms that appear early in the disease can interfere with a person’s ability to write or sketch.

I can’t say I have noticed that, personally. But it would probably depend on a number of factors, including the patient’s handedness and which side is primarily affected by the Parkinson’s. I think that how someone tends to use drawing and writing materials might be important, too; I understand that creativity uses a different part of the brain to more mundane activties, and so people’s associations with pen use might vary.

The Telegraph article continues:

A spiral is considered a sound test because, unlike writing words, the quality is less likely to be influenced by a patient’s education.

Unless, say, they are an artist? I wonder if the researchers took that sort of possibility into account.

It should be added that the research was conducted using a small sample: 55 people (27 diagnosed with Parkinson’s, 28 not), all in their sixties and seventies. With a cohort that size, it makes no sense to include younger sufferers, and perhaps artists, calligraphers and draughtspeople were similarly excluded, not to mention fountain pen users (who will be less likely to press hard than those who use ballpoint pens).

Anyway. It seems pointless for me to comment further on this without actually trying to replicate the test (as illustrated in the BBC’s article and in the research journals own blog, but without the technology and on A4 paper).

I have software that will draw a neat, accurate spiral in a dotted line, and I have traditional drawing materials that are pressure sensitive (I wavered over extreme dip pens but they are sensitive to direction and would need several dips in the ink pot to get around the whole spiral, so in the end I decided on the humble graphite pencil in a generous 6B flavour). It seemed to me that this would give me the basic feel of the test.

Here is my spiral:

For the record, I started in the middle (I always draw spirals from the centre out) and I didn’t worry about hitting every dot – I was aiming for a smooth curve. It was, I think,  a confident and reasonably rapid line, despite the fact that my left hand was a bit jittery at the time (I’m right-handed and I was drawing with my right hand).

I was fully aware of the pressure and speed measurements that might be taken if the test was for real, and of my own scepticism about the suggestion that this might be some absolute test (my scepticism is based in part on not wanting to lose my abilities and confidence in drawing). I do wonder if the knowledge (combined with the doubt) might somehow invalidate the test…

 

The research paper was published in Frontiers of Neurology by a team from RMIT University in Melborne, Australia. It is  based on previous work that has already established drawing a spiral as a test for Parkinson’s; this new study is about the tehnology that can be used to automate the test analysis, instead of relying on an expert humann observer.

 


Note: The press seemed happy to report that the device used in the test was a “tablet computer”. The illustrated device looks more like a peripheral to a computer – an input device, such as the Wacom Intuos. It doesn’t really matter, of course; it should be possible to administer the test on any tablet computer or a computer interface tablet that has the requisite sensitivity.

Also, and perhaps of much greater import, the press are reporting that early diagnosis is important because it allows for “preventative” treatment to be administered sooner. As far as I am aware, there is no proven preventative treatment; what we have at the current time may slow progression, but even that is uncertain. The BBC even state, in a picture caption, that “ Treatment options are effective only when the disease is diagnosed early “, which I am certain is not true.


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2017 Calendars

Not only does next year’s Mervyn Peake awards calendar include my Shelves of Inspiration, but an American organisation (the Parkinson’s Disease Foundation, or PDF) has asked if they can include Atlantic Surf (above) in their 2017 calendar. In fact, there’s a public vote (open until 5:00 PM EDT (9pm in the UK) on Monday, August 22, 2016) to choose the cover, and Atlantic Surf is in the running.


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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.