They are appealing for nominations this year and as part of that appeal they featured some of Patrick’s interview. The clip they have used is very moving and well worth a listen. Patrick said, now that his life has been cut short he has to make the most of everyday – a week of his life is like a year of ours.

You can hear the interview by clicking on this link. Go to 0:47:27 into the programme.

http://www.bbc.co.uk/iplayer/console/b017chq8

The exhibition will be on in November. I’ll post more information soon.

My recent progression has also had a negative impact on other areas of my life. My speech is getting worse and worse. I can’t talk to anyone on the phone anymore who doesn’t know me – they just don’t understand. And my arms… I’ve had to stop typing. I’m gutted. I was prepared for this – before I started the portraits AAC research was my main area of interest. AAC stands for Augmentative and alternative communication, which means methods to help people communicate who have trouble. Everyone with MND will need AAC before the end. There are a lot of products out there – I am using an onscreen keyboard and a joystick to type this blog – but they are slow, really slow. It has taken me an hour to write this blog so far – that’s six words per minute. Why is it so slow? Because, in my view, the AAC field is wide open. Commercially there is zero money in it. A handful of companies produce the equipment and software that is available. Tiny r+d budgets mean over-priced products continually years out of date. Ineffective and so, so frustrating. Many MND sufferers in the UK, for instance, use lightwriters. A lightwriter is a thing like a calculator, with a keyboard, you laboriously type in your phrase and it speaks it for you. They are easy to learn and easy to use. But this is twenty year old technology for heaven’s sake, and the conversation moves on to a new subject long before you can get your sentence out. Infamous. This is 2011 – we ought to be able to do better than that.

I thought I was prepared. But nothing can prepare you for the torture of six words per minute. But don’t worry about me and AAC, I have great plans for this, both for me, and for others, which I will tell you about in due course. No, there is another, much worse problem with the weakening of my arms, and the reason for this blog. I’ve had to stop painting.

I finished portrait No.18, Stephen Hawking, at the beginning of march. I was then flat out with organizing the exhibitions until the middle of April, and then, exhausted I decided to have a break. Last week I thought it was high time I started again, so I asked Kathy to get my pencils out. I was going to start on Amanda Gullick, who has familial MND. Kathy got me set up and I reached for a pencil. It was really hard, my hand was shaking, my arm on fire. The pencil was blunt, so I tried to reach for another. It was much, much harder the second time – most of the pencils went on the floor, my arm just gave up. It was then I realized – for me at least, painting is over.

But I don’t want it to end here. This not the end of the 100 portraits . I’ve been doing some thinking and have come up with a plan… More on that later.

I’ve some good news to report. I have a new colleague in the quest for MND awareness. My friend Alistair is going to be leading the 2011 MND Association awareness campaign. Alistair lives near me, and we have a lot in common. We’re the same age, we both have young families, and we both have motor neurone disease. Alistair is a fighter, and a true optimist, but his story is different to mine. It’s a good story – why don’t you go and find out for yourself. Visit www.alistairtheoptimist.org

Also, I’ve not been idle these past weeks. I’ve been working on a new invention. I think I’ve finally invented something really good, something that will help thousands of people across the world. Some friends are making a film and a website about it, that I hope to be able to show you in the next week or so.
So not everything is gloomy. I’m still an optimist and I’m still fighting. MND may have won this battle, but it hasn’t killed me yet, and together we will win the war.

The flagship exhibition is going to be at Oxford University museum of natural history, from the 31st of March to the end of May. This show will feature the portraits, and 18 four foot square displays about the portraits, the people in them, and about my neurologist Dr Martin Turner and his MND research. There will also be a huge sculpture of my head and brain, by the artist Ben Pollock, and an amazing display about neuron cells.

Then all round the country, and the world, there are going to be exhibitions of reproductions of the portraits. There are going to be over thirty exhibitions, many in people’s homes, schools and places of work, and some in public places that you can visit. Here is the current list:

Art Show, Stapleford Village Hall 19 March
Colchester United Football Club 9 April
Hillingdon Hospital, Uxbridge from 18 April
Colchester Library 21 March – 18 April
Northern Antiques Fair, Harrogate Conference Halls 28th April to 2nd May
St. Mary Le Bow, Cheapside London 16th – 20th May
The Ginger Moo Gallery, Crawley 1st April
The Warehouse Project, Sri Lanka 1 April
Hackney Central Library 16 March – 26 March
Walthamstow Central Library 2 – 12 April
Redbridge Central Library, Ilford 18 – 29 October

And then to close up this portrait extravaganza, the originals are going to be shown at the Royal Society of Medicine, London from the 1st – 31st May.

All of these exhibitions will be raising awareness of MND, helping promote better care for sufferers and drive research forward into a cure. Do you want to get involved? There’s still time to put together your own exhibition and make a difference. Contact mel.barry@mndassociation.org and help us put an end to MND.