September 2010

Sunday September 6th 2010

Two weeks have just shot by. Where is my life going? I have been diagnosed three years this Tuesday and they have simply flown in. The last two weeks has seen the excitement and exhilaration of WobbleAid 2010 in Donegal and the pain and Purgatory of an 18 mile training run for Chicago Marathon. Two contrasting experiences are hard to explain. However they can be summed up by the tragedies that occurred at both and my reaction to them. The tragedy at WobbleAid was, yet again, they ran out of beer. Three years in a row. When I heard I laughed like a drain. The tragedy on the 18 mile run was, just when I was at my lowest, at about 16 1/2 miles, I was stung by a dirty f****** wasp. When I felt it, I swore like a trooper and hopped around howling in pain and feeling very unhappy with the world in general and with the wasp population in particular. Is this running lark not hard enough?

We have been discussing events for next year, and I had dismissed triathlons because of the need to swim. Firstly, my dodgy right arm does not lend itself to swimming, and secondly even with a fully functional right arm I am a crap swimmer anyway. My legs just tend to hang down in the water and do nothing. Well, my view on the world has changed this week following coffee with my friend Jane. Jane was struck down with a neurological disorder called CPRS around about the same time that I was diagnosed. It has put her in a wheelchair and given her the incentive to do amazing things. She is the British and European triathlon champion in her division. I was telling her about my swimming dilemma and she mentioned getting floats for my legs. This would stop the hanging down swimming position and would make me use my right arm more thereby improving its function. Pure genius huh? I have ordered some leg floats (as regular readers know I do like a bit of apparel). I now have my heart set on doing a triathlon next year.

This started a chain reaction of thinking about the future. I don’t do this very often but I had the rather enlightening thought that, assuming things progress as they generally do, I am going to have a level of disability shortly which means I will be eligible for the Northern Ireland Paralympic Commonwealth Games team in 2014! How cool is that? Surely it must be an absolute shoe-in getting into the Northern Ireland team, particularly now people aren’t getting shot and there isn’t a regular supply of candidates. I will be able to pick my sport! Presumably because it is the Commonwealth games I will be able to pick some outlandish colonial sport like elephant polo. How exciting.

So this is my new goal. I think it’s important to not put too many eggs in one basket when you have a debilitating disease. I try and fight the disease on more than one front because I get great satisfaction when I am scoring points regularly, and the more fights you have more opportunity to have to score points. Similarly, when I lose a battle I have other fronts to fight on. I think people who, for example, focus on one thing, such as their job, leave themselves open to the risk that they could be in for a big shock down should the worst happen and they lose the job.

Three years in, or four years since the tremor started, I am in a good place. Helped largely, maybe entirely, by my fantastic family and friends. Thank you one and all. This Friday I am going to an awards dinner as I have been nominated for the News of the World Fundraiser of the Year. If I win (which is unlikely because the opposition is very stiff) it will be because support and friendship they have shown me. If I don’t win then they will need to pull the finger out and start raising a bit more cash!

September 13th 2010
NotW Bighearted Fundraiser of the Year

Isn’t me. I am not bighearted enough apparently. It was a fantastic night and it was amazing to see the Grand Central ballroom where the Wobbly Banquet will be held on only its second night since the refurbishment finished on Thursday. It was a little rough around the edges, there was a layer of plaster dust on some things but it is an amazing building. I am truly excited about the Banquet now. If not a little nervous.

When it came to announcing the award for my category, Lorraine Kelly read out the names of the finalists and called me “Brian” Williams. In most companies this would go unnoticed. However when you’re sharing a table with Ian, Tony and Alan such a gift horse has its mouth completely ignored and plenty of Brian jokes followed. Ian had me giggling uncontrollably when he said “didn’t they make a film about you? The Life Of Bryn”.

I then had to put up with comments from Alan like “you really need to pull your finger out” and Tony calling me “Loser” all evening. He is a charming chap.

After the awards ceremony, Matt proceeded to get himself photographed with all the glamorous ladies and the rest of us retired to the Champagne Bar until the wee small hours. To try and undo the damage the alcohol had done I made the sensible decision to have a kebab. Saturday was a washout and Sunday involved dragging my body through 16 miles of a training run for Chicago.

My friend Jane who I wrote about last week, has just been at the world Championships in Budapest and is now the Triathlete World Champion. Fantastic.

Wednesday 22 September 2010

All Over the Place

Where do I start? My world is a full and frantic place at the moment. Let’s start with the Great Scottish Run.

The Great Scottish Run was two weeks ago and was Vicky’s first attempt at a half marathon. Vicky the wife that is not Vicki the voluptuous blogger. Karen Richard and I ran with her and she did really well. She only complained constantly and only ached in certain places which included her entire body. Half marathon number eight was in the bag.

The Great North Run (uphill and for Pirates) was a hoot. It is the third time I have run it and first time I have enjoyed it. I was hoping to break my time of two years ago (2 hours 23 min) and stamp last years effort of 2 hours 37 min into the dust. As always I ran with Karen and despite the hills we kept an even pace the whole day. The atmosphere is amazing. I devoured more ice pops in the space of two hours and I had my entire childhood. People were just standing at the side of the roads dishing them out. We all started dressed as Pirates but nylon bandannas do not in themselves to comfortable running!

As ever miles 11 and 12 are awful, nothing prepares you for the gradual climb up and through South Shields. However we reached the 12 mile Mark in just over 2 hours and 10 min. I realised I was going to beat my time of two years ago, in my book my biggest running achievement and testimony to the resilience and determination I have developed. It then dawned on me if we put our foot down we could break 2 hours 20 min.

We staggered and ran towards the finish. Dodging people who were stumbling all over the place. I was exhausted but exhilarated that maybe, just maybe, I could get my time below 2 hours 20 min. I crossed the line and stopped my watch. I looked at it in disbelief. It was only much later when I checked the official results online that I verified that I had indeed missed by less than a second. My official finishing time was 2 hours 20 min 00 seconds. I was still delighted and highly amused. Half marathon number nine was in the bag.

We ate and drank the night away and regretted it next morning when we were on the 6:25 AM train from Newcastle to Glasgow. Great fun.

Are running target of 10 half marathons and two full marathons is now within reach. Just one of each left. First up is the Chicago marathon on 10 October followed by Eddie’s Fort William half marathon on 7 November. If anybody wants to join us in Fort William, feel free.

The Wobbly Banquet continues to take shape. The auction prize list is staggering. Trips to Kilimanjaro, Cleveland Ohio, Marbella and London. Golf lessons with a coach who has worked for Faldo, Els, Ballesteros etc, 45-year-old single malt whiskey, numerous hotel stays etc. People have been extremely generous.

My outfit is bright to say the very least.

My two speeches next week, one of the opening ceremony of the World Parkinson Congress and the other at the Wobbly Banquet, are virtually complete. I am happy with them, if not happy about having to deliver them. Both will be frightening in different ways. I am thoroughly looking forward to the Congress, it will be great to meet all these amazing people who have helped build this website.

This weekend, we walk. Wobbly walk three along the banks of Loch Ness starts on Friday and lasts for three days. It will be great to catch up with all the usual suspects and meet some notable newcomers. As always good food, good beer and good company will be the order of the day.

The two major absences from the walk will be George who is tied up in family business and Bob who will be tied up in Berlin. If he gets his way. He is running the Berlin marathon and we wish him all the best. He has been with me every step of the way on this journey and will be missed. Apart from when we are singing.

The Wobbly shop goes live next week and will be interesting to see whether or not we sell anything. To start with its just T-shirts, mugs and caps but we are looking to expand on that.

I’m not sure how much updating of the website is going to get done over the next week or so but we shall do our best.

September 29th 2010.
World Parkinson Congress Speech

Here is the speech I delivered at the World Parkinson Congress Opening Ceremony.

Thank you Dr Lees for that kind introduction.

Good evening Ladies and Gentlemen.

I am truly honoured to have been given the opportunity to address this the Second World Parkinson Congress.

As you know the patient address at the First Congress was delivered by Michael J Fox.

I have been a fan of Michael’s since I was a teenager.

One of my first trips to the cinema was with my sister Christine to see “Back to the Future”

I thought it was a fantastic film.

As we left the cinema I said two things to Christine.

The first I have no problem with. I said: “Michael J Fox is so cool.”

The second statement I am now not so sure about. I said: “I wish I was just like him”.

Four years on from the first Congress I am delighted to welcome you to Scotland. Many of you are new to Glasgow and I am sure you will enjoy your stay in this wonderful city.

Glasgow is known throughout the world as a city of culture, as a city of invention and industry, and as you will discover, a city inhabited by colourful, humorous and optimistic characters.

For me Glasgow is a great place to have Parkinson’s.

It is also the ideal place for our community of carers, clinicians, patients and researchers, to come together and plot the demise of this horrific disease.

As a patient, I extend a particularly warm welcome to the clinicians and researchers. In the past four years you have been responsible for the improved understanding of Parkinson’s, for the developments in methods oftreatment, and for the identification of compounds with the potential to eradicate this unforgiving condition.

One day, you will cut the key that will unlock our bodies.

On behalf of the patients and carers I thank you wholeheartedly for your work.

All of us arrive at this Congress with a common goal.

To improve the lives of people with Parkinson’s disease.

Everybody in this room has something to contribute.

The clinicians and researchers bring extraordinary science and potential therapies to be discussed and dissected.

But this is not just a science meeting. This is a Congress.

This is a gathering of the whole Parkinson’s community and the patients and carers bring an extraordinary contribution too.

We bring the experience, we bring the knowledge, and we bring the passion that comes from living with this disease.

The value of this experience, knowledge and passion should not be underestimated.

The patients and carers bring something else to this Congress.

Something that only a person who lives with this disease, day in, day out, can truly understand.


What Martin Luther King referred to as the fierce urgency of now.

I’ve only been diagnosed a few short years and already I have had enough.

My wife and my two little girls have had enough.

My friends who have been walking miles, running miles, and swimming miles to raise awareness have seriously had enough.

Their aching limbs and cramped feet long for a cure almost as much as mine do.

A cure that’s been sitting tantalizingly below the horizon since before I was diagnosed.

A sunrise waiting to happen.

Every day I ask myself what can I do?

As a group of patients and carers what can we do?

What can we offer to advance the work of you, the clinicians and researchers?

We can offer you commitment, we can offer you cooperation and we can offer you collaboration.

Clinicians and researchers we can be your Advocates.

As Advocates we can dispel the myths of Parkinson’s.

The outside world believes this is a disease of elderly. We know it isn’t.

The outside world believes there are drugs that will see you serenely through your life. We know there aren’t.

The outside world believes the cure is five years away. We know people who were told that 30 years ago.

As Advocates we can mobilise ourselves to deliver volunteers for clinical trials more quickly.

As Advocates we can become positive nuisances, pestering politicians, badgering budget holders and nagging decision-makers.

As Advocates we can express ourselves and the concerns of our community in a way which will deliver results.

As a community of Parkinson’s Advocates we can be a resource for you the clinicians & researchers.

But to be effective we need your commitment, we need your cooperation and we need your collaboration.

We need your support and your encouragement to bring the value of our experience, knowledge and passion to bear.

We need your guidance to plan our journey, to point us in the right direction, and to propel us to the destination all of us here want to reach.

A partnership of equals.

This Congress is not just for the scientists to demonstrate what they hope to do for the patients, it is also an opportunity for us the patients to demonstrate what we can do to eradicate Parkinson’s.

If the delegates whose life’s work is Parkinson’s, collaborate with those who live with Parkinson’s, together we can deliver a future without Parkinson’s.

But the road must start here. The opportunity exists this week. In this city. At this Congress.

Urgency. Ladies and gentlemen, Urgency.

The fierce urgency of now.

Now is the time to realise the promises of science.

Now is the time to bring our urgency to bear and deliver a future of hope for the victims of this disease.

Now is the time for a steady hand, a strong voice and a keen sense of smell for the opportunities that await us.

A steady hand.

A strong voice.

A keen sense of smell.

I had them once.

I want them back.

Welcome to Scotland.

Welcome to Glasgow.

Welcome to the World Parkinson Congress.

Thank you very much.

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