October 2010

October 1st 2010
Wobbly Banquet Speech

A full review of the WPC and the Banquet will follow in a day or two but for now here is my speech which I gave on the evening — a different effort to that delivered at the Opening Ceremony!

Ladies and gentlemen, welcome to the Wobbly Banquet.

I never thought I would say those words.

I never intended to say those words

But I have because I am plagued with good luck and you can’t take a hint.

Let me explain.

For the first 36 years of my life I was universally described as “lucky”.

For 36 years all my clouds had silver linings.

For 36 consecutive years I landed on my feet.

It sounds fantastic doesn’t it?

Well it isn’t.

Whenever I achieved anything it was always because I was lucky.

I was diagnosed with Parkinson’s when I was 36.

Nobody mentioned good luck that day.

In fact on hearing the news, one of my friends John Bundy said “bloody hell mate that’s a bit of bad luck.” Then he paused and said “it’s about time you had a bit of bad luck”.

I smiled, he was right.

That day I was catapulted from my comfortable, lucky, and stress-free life.

To a cold, and lonely place, devoid of laughter and hope. Which for the purposes of this story we shall call Edinburgh.

No-one who lives in Edinburgh is ever described as lucky.

This Ladies and Gentleman was bad luck and I was going to enjoy it.

In Edinburgh I could shuffle around wearing a scowl.and no-one would notice.

In Edinburgh I could be rude to people for no apparent reasonand fit in perfectly.

In Edinburgh I could truly wallow in my rotten bad luck.

Alas it wasn’t to be.

Why?

Because you wouldn’t let me.

My good luck had struck again.

I had inadvertently surrounded myself with amazing people.

The support that Vicky, Marks & Clerk, my family and my friends have shown me has been incredible.

I have tried to deter you in an effort to get back to Edinburgh .

Just so I could sample this bad luck thing, even for a few daysbut to no avail.

I suggested walking the West Highland Way
Over seven rain soaked days.

You came, you walked, you enjoyed yourselves.

I suggested running.
Not just 5ks and10ks, but half marathons and full marathons.

You came, you ran, you even wore ridiculous pink T-shirts.

I suggested dressing like pirates and pillaging in public places.

You came, you pillaged, you didn’t even get arrested.

Every single thing that I have suggested you have backed to the hilt and kept me from returning to Edinburgh.

So to tonight.

Tonight was supposed to be a suggestion too far.

The plan was simple.

No-one would buy tickets for a Banquet which avoided the tried and tested.

No-one would buy tickets for a Banquet during the deepest recession in living memory.

No-one buy tickets for a Banquet in a hotel which will never be finished on time.

And here you all are.

Again.

I am truly humbled by the support, energy and commitment you have shown to me and the Parkinson’s cause.

You have been the silver lining that has made this cloud not just bearable but enjoyable.

On behalf of the people with Parkinson’s throughout the world who get their inspiration, their perspiration and their determination from the WobblyWilliams team you have my sincere thanks.

Tonight we continue our journey to do something amazing.

We take another step towards curing Parkinson’s disease.

Another step towards preventing Parkinson’s disease.

Another step towards ending the fear and misery that this insidious disease inflicts on tens of thousands of young people in this country every single day.

Tonight we are supporting the Cure Parkinson’s Trust.

Supporting projects that will mean no-one will have to live in a place where you can’t get vinegar on your chips.

No-one will have to live in a place where they value rugby over football.

And no-one will have to live in a place where council has to bring in comedians
for a comedy festival every single year, just to get the residents to smile

Ladies & Gentleman, have a wonderful evening dig deep and lets take a step towards a cure for Parkinson’s disease

October 6th 2010
World Parkinson Congress

Inspiring. Completely, utterly, entirely inspiring. I didn’t expect to use that word in connection with the World Parkinson Congress. But that is what it was. I expected to describe it as educational, or interesting, or possibly even fun. But I didn’t expect to be inspired. What inspired me? The delegates. Particularly the people with Parkinson’s. People who live their lives with dignity in their manner and laughter on their lips. I met some truly amazing parkies, from all over the world.

For me, the conference began on Monday evening. My dad, Rebecca and I popped in the SECC to see if I could take a look at the Clyde Auditorium where I was due to give an address to the opening ceremony the following evening. Some people are just plain nice and Aileen at the SECC is one of them. She is a planner who took nearly an hour out of her day to show me around and let me get my bearings. I only found out later that she had finished work and was doing it in her free time.

Tuesday was spent with Gavin Hastings. Gavin announced at the Congress that his wife has had Parkinson’s for seven years. I met Gavin about two months ago, through a mutual friend, and he is a truly lovely man. They thought long and hard about announcing his wife’s condition, they are very private couple, and his decision to make an announcement on the day the Congress opened was brave and made a difference. Sharon from the PR agency Dada who are organising the banquet handled the press on his behalf. She is some pup.

The opening ceremony was dramatic. I was very nervous beforehand, but the nerves vanished as I rose from my seat and crossed the floor to the lectern. My objective was to impress upon the delegates the urgency of the situation. My plan was to deliver as much of it from the front of the stage away from my notes as possible. I had planned the moment where I was going to leave the lectern and I remember doubting whether I should or not in the moments before I did.

The effect was startling. I could see people look at me in surprise. Richard described it as “People looked at you and thought “The man has got something to say.””

I got the message of urgency across, and appealed for advocates to come forward and for the clinicians and researchers to encourage and embrace them. I put everything into it and got truly involved in the moment.

When I was over, the reaction took me by surprise. It was all a bit of a blur. I could see people standing, I could hear noise, I could feel relief.

I thought that was it. I was very wrong. I must have shaken hands with hundreds and hundreds of people that night. Patients, carers, clinicians and researchers, from all over the world came up to me. Most of them thanked me for having put into words how they felt. One person told me her dog was called Bryn.

Wednesday and Thursday were spent meeting people and learning. I had many frank discussions with people on the road to a cure and the various organisations in the UK. Parkinson’s UK had a massive presence there and made a difference to the Congress. But despite what they are signage might say, the nature of the present suggested they are focused on care not cure. That has to change.

October 10th 2010
Banquet

The Wobbly Banquet was everything I hoped it would be. Unusual, entertaining and full of colour and energy. Dada pulled off a cracker.

I went to the Ballroom early in the day to get a feel for the place and to run through my speech. No dull speeches was the sales pitch so I went for a blame speech rather than a thank you speech.

My pink kilt was magnificent. It was however upstaged by Ian’s red suit which had WobblyWilliams.com written all over it. A masterpiece.

The event was a bit like a wedding. Most people knew each other and at £150 for the cheapest ticket they were determined to have a good time. It was a riot.

The evening started with the Party Ring Master appearing from behind screens with his Lycra clad wobblers and performing a Beyonce number. Then I said my bit and the first of the money extraction mechanisms, selling “I’m In The Wobbly Gang” badges, was kicked off.

Television presenter Lorraine Kelly appeared on the big screens and said Grace which was rather bizarre.

Acrobats appeared dressed in Alice in Wonderland costumes and performed during the meal. All very surreal.

The meal was fish-finger butties, Desperate Dan cow pie and Death by Jelly Baby. During dessert the auction took place and raised £19000. In a twist the winners of the auctions were brought up on to the dance floor and subjected to jelly being tipped over their heads.

After the meal the band set up and the Shake-e-oke room opened. It was brilliant. The nutters on the karaoke appeared without volume on the screens in the ballroom so we had all the energy of the singers without the volume. Brilliant. The band were excellent in the Ballroom.

The evening descended into a drunken spiral and we ended up in the Blue Dog until 3am. A brilliant night.

Thanks to everyone who took part and particularly those who paid the extortionate ticket prices. All the bloggers were there along with the leaders of the major global Parkinson’s organisations.

Our remit was to raise awareness of Parkinson’s and we achieved around 40 mentions in the media over the three months. A spectacular success. Thanks to the magnificent team at Dada

Keep an eye out of Wobbly Banquet 2 – The Return of Mr Jelly (and this time he is really, really wobbly!)

October 11th 2010
Chicago Marathon

The Chicago Marathon is done and I have the medal. That’s about the only positive thing I can say! It was an awful experience due to a combination of complacency, experimentation on race day and the weather.

Complacency – I didn’t train enough. Too much going on in my life and the training suffered. The training plan was 64 runs over 16 weeks. For London we ran 62 of them. For Chicago about 30. Stupid.

Experimentation – Never try something new on a race day. Golden rule of every running book. The race was at 7.30am and I woke at 1am. Feeling hungry. Ate some left over pasta. And a cookie. Then had porridge. Stupid.

Weather – outwith my control. 30° C, 87° F. In the shade it was fine. In the sun it was draining. The Event Alert System started at Green (Low – Good conditions), jumped to Yellow (Moderate) after 10 miles “Listen to your body folks” and then to Red (High) after 13 miles “Runners, Alert status is now Red – there is a risk of death”. How scary is that? Next stop was Black which means cancelled.

I felt unwell most of the way round, we walked at every aid station and for the sun exposed parts of the last 6 miles. We finished in 5 hrs 55 mins 26 Secs. Just below the six hour mark which means our names will be published in the Chicago Tribune today!

As always it was a great feeling crossing the line. More emotional than London and we were switched on to looking our best for the cameras when we crossed the line (hat off, look up).

If I hear “Nice job , Brian” again, someone gets throttled.

After a shower, sleep and a steak dinner the world was good and we were discussing the Paris Marathon. 10 April 2011.

Two Left Feet

Posted by wobblywilliams at 9:42 pm, October 19th 2010.

When I played five a side, I was known as “The Wardrobe”. Not so much a physical specimen, as a physical obstacle. Two left feet. Despite having retired from five-a-side for a good seven years, my two left feet returned on Monday.

I took my clothes for Monday into the office on Sunday afternoon, as I was running in on Monday morning. I got up Monday morning, I ran to the office and showered when I got there. A perfect start to the day.

Until I went to my bag and pulled my shoes out. They were unrelated. A mixed marriage. One stated “Next Italia” the other “George”.

I contemplated wearing them as, despite the hefty difference in price tag (or sticker in George’s case) they weren’t wildly dissimilar. It would be mildly amusing. Alas it proved to be impossible, further analysis revealed they were, in fact too similar. They were both left footers.

Never being one to look a gift blog in the mouth, I followed events to their natural conclusion and, just like an ugly stepsister, I tried to squeeze my Parkie right foot into the glass left slipper. Parkie foot was having none of it. It rarely bends the way it is intended so I could forget it posing as a left foot.

Four days out of five, maybe even nine out of ten, this would not have been a problem. Pad around the office all day in my socks, explaining why and being the creator of hilarity. Only putting my trainers on to go home under the cover of darkness.

Monday, however, I was due to go to Aberdeen and I needed new size 12s and pronto.

I put on the trainers and walked quickly to Next on Buchanan Street, looking resplendent in my fine pinstripe suit, an immaculately pressed Thomas Pink shirt and a pair of grubby Asics running shoes. I was a picture.

The Next greeter scanned me as I appeared I over the crest of the escalator. She looked bored at the lack of custom I presented. When the white trainers were finally revealed, her eyebrows lifted and a poorly suppressed smile leaked out.

“Shoes sir? Upstairs”.

Wednesday October 27, 2010

Steven Gill is a professor of neurosurgery at Frenchay Hospital in Bristol. He was involved in dramatically successful trials for the treatment of Parkinson’s disease using GDNF at the beginning of the decade. A short video of the results of those trials is shown below.

The success of Prof Gill’s trials come down to the drug delivery method he employed. The trials were “replicated” across the world with less success and some dramatic failures. The failure of these trials can be put down to the use of similar but not identical equipment. The story is told in the book “Monkeys in the Middle”. It is a fascinating read.

I have always been intrigued by Prof Gill and his work. Earlier in the year, fate intervened. Towards the end of July, I was featured on BBC’s Tonight’s The Night programme (see earlier blogs and here) with John Barrowman. As I left the stage at the end of the feature, John asked me have I heard of Steven Gill. I did not expect him to say that! I replied yes and John said they were related. I was gobsmacked.

To cut a long story short, John passed my details onto Prof Gill who phoned me last Tuesday. We had a long chat and I flew down to Bristol on Thursday to spend 24 hours with the man, I believe, holds the key to this disease.

It was fascinating. He explained the mechanism of Parkinson’s disease to me which is relatively straightforward and will feature in a page on the website shortly and he also explained how GDNF solves the problem. On Friday morning we went to look at the improved system he has developed for implanting catheters into the brain to deliver the GDNF directly to the spot where the dopamine cells are in a pickle. This system will eliminate the error which hampered the earlier trials.

The truly great thing about this drug delivery system is that it is applicable to all types of drugs for all types of conditions.

It is invasive, involving drilling through the skull but, if it can deliver medication to where it is required, it will open the door to the testing of many different medications which will, in turn, drive the development of less invasive delivery systems such as gene therapy.

I have asked many people about the technology that Steven Gill promotes and there is widespread admiration for his work. He needs hundreds of thousands of pounds to get his trial program to a stage which will prove the point and attract funding from the drugs companies and research councils.

I am talking to my fundraising team about raising money in 2011 to finance drug delivery systems for the brain and spinal-cord generally, and Steven Gill’s work in particular. It makes sense to me that the best drugs in the world are of no use if we can’t get them to where they are needed. No point in building a Ferrari if you haven’t built the road.

It has been an exhausting week but one which gives me real hope for the future. If this technology works we could see developments and progress in curing conditions and diseases across the spectrum. How cool would that be?

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