Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Mervyn Peake Awards 2013: My day in London


What a busy day!

I somehow managed to get into central London for 10 am, arriving at the Tate Modern Café in perfect time for my rendezvous with an American friend – a lady who is as lovely in “real” life as she is online (we hadn’t met before). Sarah is an artist who, coincidentally, also has Parkinson’s (she specialises in exquisite coloured pencil drawings of ordinary things that – seen through her vision – become extraordinary). She was in Britain on holiday with her husband, and when we realised that we were due to be in London on the same day, we decided to meet up.

I’m very glad that we did. There was only time for one coffee apiece in the Tate’s oddly formal café, but I felt as if I could have talked with Sarah all day. But I had somewhere else to be…

From Bankside (where Tate Modern is, overlooking the Thames) to Bank (the financial district, and the location of the venue for the Mervyn Peake Awards) is a 20 minute walk, and I managed to arrive there on time, too. (I could have used the underground, but it was a lovely day and it was nice to walk. It might even have been nearly as quick on foot, too.)


Installation views: part of the exhibition of artworks

The reception was as lovely as last year’s, despite the sad loss of Sebastian Peake, son of Mervyn, last autumn. This year, we had the talky bits and the awards before the seated buffet lunch was served. Which, I think, worked better. Joanne Harris was on hand to read the winning poem again, but this year HRH the Duchess of Gloucester, patron of the charity Parkinson’s UK  since 1996, gave the awards out.

I couldn’t help but wonder why the winner in the art category was represented by an A4 print in the exhibition. Maybe it had been sold? I am fairly certain that it was a print, but am beginning to doubt my recollection now.

Leaky memory aside, I definitely did enjoy speaking to some of the other entrants in the competition, their companions, and several members of Parkinson’s UK staff. I hope I didn’t bore anyone with my adventures in paint.

I met Tim Andrews, the solicitor-turned-art-project, whom I mistakenly thought that I had mentioned in a previous post, and who asked to take my picture, which he did there and then (with my permission). He seemed like a very nice fellow.

PUKcalendar2014diddyI also collected my advance copy of the 2014 calendar, which contains a detail from my Spotted Bullock (aka “Dotty cow”, although it is decidedly not a cow) as the main picture for August. It also contains several of the works that I admired most in the exhibition. It even has a hole punched in it! (Last year, my advance copy did not have any holes to hang it by. Incidentally, the 2013 calendar is now half price, and comes complete with my poem in May.)

I’ll try and let you know when the 2014 calendar is actually on sale…


12 thoughts on “Mervyn Peake Awards 2013: My day in London

  1. Hello I’m Deborah Jeffries from Stamford, CT USA and am 45 years old diagnosed with Young Onset Parkinson’s Disease early this year. Levodopa makes life more tolerable and am holding on to the hope they will cure in the near future. This disease is brutal and had to learn to continually adapt to my progressing disability. I still have hope at least!

  2. The worst thing about having Parkinson’s Disease is how slowly it sneaks up on you. It’s cruel with being repeatedly being misdiagnosed over an 8 year period I was still shocked when my diagnosis was confirmed definitive second opinion by a neurologist. Anger, frustration and depression the feelings I cycle with. Levodopa just buys me time. I have faced the reality that barring a major breakthrough soon, I am gradually losing the ability to walk. I’m devastated but my doctors are honest my disease is advanced. It’s rough.

    • Hello, Deborah. It’s good to hear from you. 8 years of misdiagnosis is a long time. I’m sorry to hear that you’re having a rough time of it. Hopefully the condition will progress slowly and you can find something that helps you get by – or even something that helps you forgot about the darn thing for a while!

  3. Thank you Zalamanda for your thoughtful reply. It helps talking about it. Was happy to hear that Michael J. Fox is returning to television here in the US with a show about a guy who returns to work that has Parkinson’s. He is such an inspiration and my hero. I can actually say there is one GOOD thing about having Parkinson’s Disease, since I am in a constant state of tremor from the disease and you burn more calories because it is movement though involuntary, I have dropped 74 lbs since last year. Sorry don’t know how much that is in stone but it’s a lot of weight that I needed to lose anyway. Levodopa helps too. I take it one day at a time. I can’t fret over that I have no control over.

  4. I go through cycles with my feelings about having Parkinson’s. I try to look at the positive things like that since switching to Sinemet I’ve had a reduction in tremor, rigidity and my feet no longer scrape the ground or drag/shuffle when I’m walking. I used to wear out the bottom of my shoes fast because of the shuffling. I would not be able to walk, though with a cane, if it wasn’t for Levodopa. My disease is advanced so I do get “freezing” and balance problems which the medication doesn’t stop. To avoid a freeze, I slow down when I reach an obstacle on the sidewalk or have to turn a corner which usually triggers a freezing episode. I don’t know if you’ve had a freeze yet, I remember my first one was scary. They occur when the disease is advanced. You suddenly stop walking feels like your feet are nailed to the pavement lasts for me about half minute to a minute, then I can move again. Having to adjust your movement is something you can do normally without thinking about it.

    • No, I haven’t had a real freezing episode yet. I have had a few “Oh-bother-I’m-stuck-here-in-this-narrow-awkward-space-because-l’m-not-confident-about-where-to-put-my-foot-next” moments that lasted too long and l’m sure aren’t what you’d call normal.

  5. Thanks for the stone to pound weight conversion. I know a bit about the cultural differences between the USA and Great Britain because my grandmum was an immigrant from Liverpool. I never met her but my dad taught me about my British heritage and took me to tea houses for scones and crumpets as a child. We used to have them here years ago but they are gone now and my dad passed away in 1997. In a way it’s better that he didn’t live to see me develop Parkinson’s Disease. We were very close and seeing me disabled would’ve have devastated him. I do believe they will come up with something that can halt the progression soon. Levodopa’s effectiveness breaks down after 5 years. I just started treatment with it last month and it has given me the most improvement. Mirapex wasn’t strong enough and had cardiac complications.

    • Well, I had to look the conversion up. We’re officially metric, and I’m young enough that I was only taught metric, which I use for pretty much everything but cooking (which doesn’t generally get to stones!) and people’s height (5’9″ is somehow more right than 175cm). The UK still measure driving distances in miles, though.

  6. Before I was diagnosed with Parkinson’s, I had been an activist for the disabled since I’m a traumatic brain injury survivor which my neurologist believes triggered Parkinson’s prematurely in my case. Don’t know how it is in the UK, but the sick, elderly and disabled in the US don’t get the best treatment or respect. I’m often pushed off of sidewalks nearly run over by bicyclists. People have no respect. I applied for disability a year and half ago still waiting lucky I live with a relative. I think that we disabled should at least be treated with the respect and dignity that we are entitled to.

    • Deborah, that’s dreadful. I would like to think that it’s not like that in the UK; l have certainly not seen anything like that. Of course, while technically disabled because of my condition, I am not practically disabled yet and it is possible that my experiences colour my vision. However, I would be horrified to see less able people treated in the manner that you describe. Everyone is entitled to respect.

  7. You’re so right. I think the culture in the United States right now is the real problem. People don’t raise their kids right. I was raised to respect the elderly and physically challenged never imagining I would become disabled myself. The government here seems to only care about productive able bodied high income citizens that are under retirement age. My Parkinson’s is advanced it’s hard to dress, shower etc. and my memory is bad I am lucky can still walk with a cane but my daily functioning is slowly slipping away. Our society here in America needs to respect the civil rights of all people not only a certain group of the population.

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