Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Further Progress in Stem Cell Research

Further to my post on the Oxford “breakthrough”, researchers in Edinburgh and London say that they have “generated stem cells from one of the most rapidly-progressing forms of [Parkinson’s] disease.” It seems, from the Press Association article, that similar methods were used as at Oxford, with skin cells harvested from a Parkinson’s patient being used to generate brain cells.The key difference is that this patient has a rare form of the disease:

The neuron cells were generated from a patient with a form of the disease that progresses quickly and can be diagnosed in people in their early 30s. People with this form of Parkinson’s have twice as many of the genes that produce a protein, alpha synuclein, compared with the general population.

Although this form of the condition is rare, the protein involved is linked to virtually all types of the disease. The study was funded with a £300,000 grant from Parkinson’s UK.

The study was published three days ago in Nature. The research provides a useful tool for testing new theories and treatments in a dish; the aggressive nature of this patient’s condition allows results to be seen sooner.

The graphic shown below demonstrates some of the differences seen in culture (i.e. in the petri dish) between the Parkinson’s patient and a healthy relative.

Image from Nature. Images labelled (a) are patient derived cultures; those labelled (b) are from a healthy relative. In both cases, the bottom row is a magnification of the top.

DAPI is a fluorescent stain that binds strongly to regions in DNA that are rich in adenine and thymine (two of the four nucleotide bases in DNA). α-Syn refers to the presence of alpha synuclein; TuJ1 is a Neural Stem Cell Marker.

The images also look quite pretty.


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Painting with Parkinson’s

This post isn’t really about Parkinson’s. It’s about me, and a little bit about how Parkinson’s has given me back my drive to paint. (Not that I drive to paint; I tend to prefer to walk to do it. But that was a very bad pun.) It’s also a little bit about how it feels when I’m painting and how Parkinson’s affects that.

Cannon Heath Down from White Hill, 24 August 2011. Oil on canvas.

Cannon Heath Down from White Hill, 24 August 2011. Oil on canvas (14 x 18").

I love painting. I have always loved painting. I do have a little natural talent in that direction, but I didn’t go to art school. (I went to university to study science instead. Then I did a few evening classes and half of an Open University degree in Art History. Then I had children.)

I’ve managed, one way or another, to have a few days this year when I could get out and about without the children. Some of those days, I spent walking (as mentioned earlier, I like walking, preferably in the countryside). And while I was walking – often up the biggest hills I could find – I was also, consciously or otherwise, scouting for locations to paint.

In an earlier post, I mentioned the Mervyn Peake award. This is an arts competition open only to people with Parkinson’s. When I heard about it, I thought to myself, “I really must have a go at that”. But there wasn’t much time, and the weather was poor, so I painted some flowers. In acrylic, because it dries quickly and doesn’t imbue the house with a curious smell (I must admit, I quite like the smell of oil paint, but I don’t live here alone, and I don’t have a room that I can dedicate to painting and shut the door on). You can see part of it in the banner for this blog. It was the first “proper” painting that I had done for many a year, not counting the wedding card watercolours of flowers that I always do for my friends.

I sent the painting in to the competition, but I didn’t really have much hope. It wasn’t really very exciting. In fact, the subject was hackneyed and predictable, even if I had only just discovered (after choosing the flowers) that the tulip – specifically a red tulip with white edges – is the international symbol for Parkinson’s. It was technically good, my painting, but lacked that certain je ne sais quois. It was also rather poorly composed. Needless to say, it didn’t win anything.

But then the weather improved, and the idea of sitting and painting en plein aire, as the Impressionists used to say, became a plausible aim.

Bluebell Wood, in it's carrier - the first of these that I made. There's a cardboard sleeve (pre-made - I just 'repurposed' a handy box), not shown.

Bluebell Wood, 24 April 2011. Oil on canvas board (12 x 10").

In April, I painted some bluebells. That’s them over on the right.

In August, I painted a hill (twice, so far – it’s a very picturesque hill, and it’s only about two miles away). You can see the second version above.

I like working in oils, and was determined to use them. Oils take ages to dry (and I mean ages – a week before they’re dry to the touch).  So, before I went on any painting expeditions, I had to solve a fundamental problem: how do you carry a wet painting home again? I’m not entirely sure how the Impressionists managed it, but I had a look around on the Internet and discovered that:

  1. it is possible to buy devices that allow you to carry wet paintings, but they are mostly expensive and heavy (being made, frequently, out of wood), and
  2. it is possible to make your own out of cardboard.

I gathered a few design inspirations from what I saw and read online, and set to work. Such carriers need to fit the support (this is a fancy artist’s word for “the thing that you are paining on”; usually, if painting outdoors in oil, it will be a board or a stretched canvas), so if you use different sizes of board or canvas, you need one for each size. Stupidly, I bought lots of different sizes.

My basic idea is as follows:

  • Make a cardboard box to fit the canvas or board, with extra depth built in. It doesn’t matter (much) if the box is not perfectly rigid, because the board or the canvas has its own rigidity.
  • Use the fact that a painting will spend its decorative life inside a frame to your advantage; those bits right at the edge of the canvas are expendable! So, I build up the very edges of the interior of the box with strips of corrugated cardboard; the support sits in the box face down. Sometimes I use little triangles in the corners, too.
  • Add some bungee cords to keep the box closed and to help keep it on the back of your rucksack, and you’re done!

This approach works quite well if there is enough air between the box and the support. The bigger the support, the more air is required so that the box doesn’t come into contact with the paint.

The next problem was getting the amount of kit right. There is, after all, only so much stuff that you can lug up and down hills, through narrow footpaths and over stiles with overhanging trees. There is also only so much stuff you can manage once you’re set up in the field (or on the hillside, which is potentially worse as the ground is decidedly not flat). Little pots and pans for liquids (i.e. turpentine and linseed oil) aren’t a good idea if you haven’t got a table. So I decided not to bother with liquids. Paintbrushes tend to need cleaning – with turpentine – during and after a painting session. So I decided not to bother with brushes.

Fortunately, I have a very nice painting knife. Painting knives are extra-flexible palette knives, designed for applying paint with. They are quite fun to use.

Impromptu paletteThe first time I went out on a painting expedition, I forgot about a palette (for mixing colours) until the last minute. I couldn’t get at my usual palettes easily, so I improvised: a sheet of greaseproof paper clipped to the inside of the lid of the box I keep my paints in. It worked, but was slightly restrictive, so I bought a pad of tear-off palettes for subsequent excursions. My wooden one would have been awkward to carry home covered in paint.

Painting kit. And map.Then there’s the folding stool, folding easel (a lightweight metal design) and the plastic box with paints in. Throw in lunch, water (to drink), first aid kit (never had to use it apart from treating blisters), and sundry other stuff and my painting kit weighs 5.5kg.

And, of course, there are no bins out there on the hills. So you have to carry your waste home – mustn’t forget the plastic carrier bags! Essential for torn-off palettes and painty bits of kitchen roll, among other things.

So, what is it like, painting on the hills? It’s marvellous. Absolutely bloomin’ marvellous. I revel in the fact that I’m up there, out there, doing something I love and doing it well (most of the time; the beauty of oils is that mistakes are readily corrected!). I’ve enjoyed the walk, the challenge of finding a good spot (one where the view is good and the easel won’t fall down the hill…) I love the fact that I have a limited time to finish the work in – I don’t intend to come back, except for a new painting – and I love that there will be a concrete result at the end of it all. It’s a type of freedom. No housework. No childcare. All that matters is the hill, the paint, and the moment.

The moment extends until I realise that my left arm has seized up (usually, I only notice when I need to open a tube of paint). It’s been holding the palette and the hand, in particular, has got unbearably stiff. Ouch. Time to put the palette down and stretch

Apart from that, the Parkinson’s doesn’t bother me. There are no palette hand tremors (that left hand does shake at other times). And I’m still early enough in my Parkinson’s journey that I can still scramble around on a hill without too much trouble. In fact, it’s quite possible that scrambling around on the hill is helping in itself – it’s all exercise, isn’t it?


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Adventurous Folks

I recently came across an article in the BBC’s online news magazine that pondered the question “Why do so many disabled people embark on dangerous feats?

It reminded me of a chap called Alex Flynn, who was diagnosed with Parkinson’s in 2008 when he was 36. He’s set himself a series of challenges that include adventure trekking, triathlons, long distance running and all sorts of outrageously excessive physical challenges, all of which are undertaken with the intention of raising money for a Parkinson’s charity. He wasn’t mentioned in the BBC article – nobody with Parkinson’s was – but Parkinson’s is, after all, a recognised disability. And I am seriously impressed by Alex’s drive.

The BBC article started with a number of wounded servicemen (notably the four who will accompany Prince Harry to the North Pole – this will be featured in a current documentary series), and moves on to look at other disabled adventurers. Perhaps not surprisingly, all of the featured adventurers and other daring types are men. Most – but not all – seem to have been daring, adventurous types before acquiring their disability (I don’t think it’s unreasonable to assume that someone who joins the armed forces is the daring type).

The article doesn’t come to any definite conclusions in answer to its own question. It suggests that

… taking on adventures [might be] a substitute for lack of success in life against ordinary measurements …

One of these ‘ordinary measurements’ is employment. It can be difficult to gain employment if you are disabled, despite the Equality Act (2010, UK). Rather shockingly, 70% of blind people of working age are unemployed. The blind adventurer, Myles Hilton-Barber, uses his feats as publicity for his new role as a “motivational speaker”. He also seems to appreciate media attention for its own sake:

“[…] Disability robs you of your confidence. I lost my dignity, my independence, but I can jump out of a plane and people will have respect for me.”

As noted in the article, the media seem to relish tales of plucky disabled adventurers doing things that the able-bodied might balk at.

Disability activist and campaigner Barbara Lisicki points out that this is effectively the easy option:

“The press is always happy to focus on the old tragic but brave stereotype. Earlier this year, 5,000 disabled people marched against government cuts. This got very little media coverage, because people find looking at a collective of disabled people uncomfortable.

“It’s much easier for them to focus on one individual and say ‘aren’t they marvellous?'”

I can’t help but think that the BBC article itself comes very close to falling into this trap. There is an unfortunate tendency to lump all “disabled people” together, when really the loose grouping of people with disabilities is incredibly diverse, and naturally includes some people who are more adventurous than others – not to mention the fact that some are more capable than others.

Lisicki also talks about what she calls ‘supercrip syndrome’ and notes that not everybody “feel[s] the need to prove [them]selves”. Of those who do, however, the BBC article posits that some of the motivational factors may be

[…] the love of adventure, to prove that disability is no barrier or, as Jaco from Harry’s Arctic Heroes says, “to bring back the feeling of being able to do something again” […]

I would add to that list a few extra possibilities:

  • The desire to do something while you still can. Many disabilities are progressive (like Parkinson’s, or Arthritis), or may come with a reduced life expectancy.

When I was at university, many years ago, I knew someone with multiple sclerosis (MS). She had quit her job and was doing a degree simply because she wanted to do it.

One of the reasons that I am making a point of taking my painting equipment out on recent walks is that I want to do the landscape painting now that I had always fondly imagined that I would do later, possibly in retirement. I suppose that doing it now makes it more likely that I might be taken seriously, though…

  • Because, not having a job (possibly due, in part, to the disability), you have the time to do it! And, of course, doing something significant means that when you do get a job interview, you can talk about it and you don’t sound like someone who sits around on their backside all day.
  • The desire to raise funds, often for a relevant charity. This was a large part of my motivation in signing up for the Just Walk event. That and the fact that I like walking.
  • Anger may be another motivator. In a recent news post, Alex Flynn wrote:

I freely admit that I am bloody angry about having Parkinson’s and frank about the fact that I channel that anger to more positive and constructive outcomes. It often pulls me through the toughest races and, certainly, assisted me in running 20 marathons in 10 days when injured.

  • I also wonder whether some people acquire a “don’t care” attitude along with their disability, a sort of semi-suicidal impulse that overrides the standard sense of self-preservation. I can understand how this might work; you feel as if your life is worth less now – perhaps it is bound up with the fact that you know that your life will be curtailed or restricted by your disability or illness – and you decide to take risks.


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Sex, Lies and Parkinson’s on Channel 4

I didn’t manage to see this programme when it was broadcast on Friday (and I forgot to record it, too), but that’s alright because Channel 4 offer an Internet-based “on demand” service for four weeks, so I watched it today.

Edit: The “on demand” service is no longer available, but I’m sure that the press coverage, summarised below, still is.

Sex, Lies and Parkinson’s

Vicki Dillon was 35 when she was diagnosed with Parkinson’s, five years ago. Mother of two boys, she also has a successful career as a pediatric nurse. The medication she is on helps her cope with her busy life – basically, to keep moving – but it has also caused problems. She has been taking ropinerole (brand name Requip), a dopamine agonist. This drug has become notorious because it works on the brain’s dopamine receptors (and hence on the “pleasure centre” or “reward centre”) and has been known to cause Impulse Control Disorders or Obsessive Compulsive Disorders. The most newsworthy of these disorders are, of course, hypersexuality (“sex addiction”), compulsive gambling and compulsive shopping. Poor Vicki has been hit with two out three (and apologies to Mr Meatloaf, but in this case that is bad). However, she’s aware of her problems and she’s fighting back at them. From what I saw, I think she’s winning.

This is Vicki’s story. It is not intended to represent everyone with Parkinson’s. It is not intended to represent everyone with Young Onset Parkinson’s. It is not intended to represent everyone with Young Onset Parkinson’s who is taking a dopamine agonist. I understand that one of Vicki’s hopes in allowing this programme to be made – and it is quite intrusive in her life, and in her family’s life – was to raise awareness of the fact that it is not always older people  who suffer from Parkinson’s. I think that she has succeeded in that aim. I also think that it is a shame that a slightly sensationalist approach was required to do that (however, while the film – a mere half an hour long – is a little sensationalist, the reactions of some parts of the press were far more so). The film is edited in such a way that she seems to be almost permanently taking drugs (of the prescribed kind) or partying and flirting with other men.

The film has been criticised as being too scary. I think that Parkinson’s is scary. I think that the prospect of taking mind altering drugs just so that you can live your life is scary (I haven’t started taking ropinerol yet, but I do have a starter pack in the house). I think that Vicki finds it all very scary, too – and so, in that respect, I think the film is very honest.

There is a scene where Vicki is driving home from an appointment with her consultant at the hospital. She is visibly upset. The thing that seems to be upsetting her most is the feeling that she does not want to be like the other patients (probably more advanced in years and in their Parkinsonism than she is) that she encountered in the waiting room. She does not want to be ill. She does not want to be old before her years. I should emphasise that this is my interpretation of how she might have been feeling (she talks about it in the car, but she doesn’t use the words that I have done). It’s kind of how I feel sometimes. And then I feel bad for trying to disassociate myself from those others – just because they are older.


There is a short excerpt of the documentary available on Youtube, and there are also a number of features in UK tabloid newspapers:

  • The People uses the sensationalist (and inaccurate) headline “Parkinson’s turned me into a sex addict“.
    They also seem to have run out of apostrophes and other useful punctuation marks, such as quotation marks. It has to be said that this article is as bad as its title indicates, overemphasising the sex-craving aspects and, I think, misrepresenting Vicki and the Channel 4 documentary quite badly.

Rather unfortunately, it seems as if the more sensible parts of the UK press have steadfastly restricted themselves to brief reviews, such as this one in The Guardian. Perhaps they were scared off by the film’s title. However, the local press seem to have stepped into the breach:


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New patient-led site: Parkinson’s Movement

There’s a new kid on the block. A new Web site, Parkinson’s Movement, was launched yesterday, 9th August 2011. From the site’s own “About” page:

PARKINSON’S MOVEMENT is a novel concept designed to engage people with Parkinson’s in their own futures, by raising expectations, knowledge and opinion, with the ultimate emphasis on a cure.

PARKINSON’S MOVEMENT is a research-focussed,  patient-driven platform for information and canvassing within the Parkinson’s community. Informed bloggers, webinars, polls, debates and so much more create a patient-focussed hub.

The three people behind it – Jon Stamford, Sara Riggare and Tom Isaacs – all have Parkinson’s.

The site is well-designed and promises to be a useful resource. It appears to have links to The Cure Parkinson’s Trust (a charity based in the UK), but this is not explicit.


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Parkinson’s in the Kitchen

As a stay-at-home-mother (not quite by choice, but that’s neither here nor there), it’s inevitable that I do most of the cooking, as well as the bulk of the baking (often with the children’s assistance).

I’m certainly not incapable in the kitchen; nor, I think, am I a danger to myself or anyone else (after all, my right hand is the good one), but there are a few things that I find rather tricky…

  • Tipping and pouring

This is only a problem if I try to tip or pour using my left hand. But sometimes you need your abler hand to wield a wooden spoon or another implement…

Tipping stuff out of a pan with the handle in my left hand rarely works very well because my wrist feels weak* and I seem to have lost the easy rotational movement I used to have. I usually have to put the pan down and adjust my grip before I can get anywhere near. The wok is particularly tricky as it’s a big, heavy old thing – but it’s a jolly useful thing all the same.

  • Rubbing fat into flour to make pastry.

This just doesn’t work any more with my left hand. Fortunately, I have one of those wire pastry blender things, a bit like this one:

… which allows me to do the job. Mine was a gift that I rarely used before, because I preferred to make pastry by hand.

  • Carving.

We don’t, actually, have roast dinners all that often. But when we do, I usually try to get someone else to carve the joint.

  • Opening packaging.

Some sorts of packaging just elude me. Fortunately, there is a plenitude of scissors and knives available in the kitchen. And when the troublesome packaging won’t yield to a sharp tool (jars, f’rinstance), there is always the time-honoured solution of the husband. If he’s there. (Usually the only reason that I do have trouble with jars and other screw caps is because he’s closed the lid unreasonably tightly – I don’t think that this is necessarily a problem I can lay at the door of Parkinson’s!)

I’m happy to report that I can still manage crisps and chocolate without the assistance of tools, however.

*My consultant assures me that this isn’t, actually muscular weakness; Parkinson’s, he says, does not cause such weakness. I’m still not entirely sure that it’s not a weakness caused by reduced use of the relevant muscles, however.


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23andme

According to Wikipedia:

23andMe is a privately held personal genomics and biotechnology company based in Mountain View, California that claims to be developing new methods and technologies that will enable consumers to understand their own genetic information. The company is named for the 23 pairs of chromosomes in a normal human cell.

One of the company’s co-founders is Anne Wojcicki who is married to Google co-founder Sergey Brin, whose mother has been diagnosed with Parkinson’s. Google have invested several million dollars in 23andme, which has – unsurprisingly – evolved a special interest in investigating the genetic background of Parkinson’s, as noted in this Bloomberg article. The genetics company is working alongside two American research foundations, the Parkinson’s Institute, and the Michael J. Fox Foundation. You may also be interested in the information sheet that Parkinson’s UK have produced about the initiative.

At the time of writing, genetic testing is offered for free (worldwide) if you have a confirmed diagnosis of Parkinson’s. Other interested people can now purchase the service for $99. Or half that price if you know someone who’s recently sent a sample for testing…

I sent off for a ‘spit kit’. It consisted of a tube with a special funnel arrangement that you spit into. The saliva thus collected can be used to analyse the donor’s genetic makeup. I also got a free gift, which was – in my case – a folding hairbrush/mirror thing with a pill case included in the handle. Quite cute, in its way, and the hairbrush works tolerably well. I’ve returned my sample and am awaiting the results…