Monday 6 July 2009

The lifts in the new office bring out the vanity in a man.  Each lift has one big mirrored wall and four extremely bright spotlights, fantastic for illuminating the blemishes and the less aesthetically pleasing features of my head.  The lighting has drawn my attention to the amount of ear hair I am sprouting, and, worse, once removed, how quickly it grows back.  It is remarkable. We have only been here two weeks, yet on four separate occasions unsuspecting, innocent people, doing nothing worse than waiting for a lift to go home, have been met, as the doors part, with the hideous vision of a rather large Irishman hopping around, with tear-filled eyes, pulling out clumps of his ear hair.  What I don’t get is why my  brain thinks its OK to use up my precious and ever-dwindling stock of dopamine to send a message to my follicles saying “Right chaps, you are doing a good impression of a boiled egg, better grow another clump, and be quick about it!” but neglects to send one to my right hand along the lines of “STOP F****** SHAKING, YOU ARE SPILLING COFFEE EVERYWHERE!!!”

 

Following my neuro appointment I have started Selegiline on top of my Ropinirole.  I am not impressed by Ropinirole, and he gave me the choice of starting levadopa or adding Selegiline. We had a chat about it and felt it was a big step to go on to L-dopa, one which I hope to postpone until I am passed 40 (don’t know why, just feels better).  So Selegiline it is.  Selegiline is an MAO-B inhibitor, a class of drug which is rumoured to be neuro-protective.  I have been on it two days and it definitely lifts your mood.  My secretary told me to stop humming today and Ella asked why was I singing in the shower.

 

When I arrived to see him he came out of his office to greet me.  In the early days I would have thought “How nice, he must like me!”.  I now know it is more likely he was taking the opportunity of checking my walking out.  As soon I saw him I started taking healthy strides and swinging my arms like a Grenadier Guard.  In the same way the Queen thinks Britain smells of fresh paint, he must think lack of arm swing in a Parkie is an urban myth.

 

Sunday 12 July 2009

I was interviewed by the Belfast Telegraph this week in connection with the Wobbly Williams Walk which takes place in August in Northern Ireland. A feature of living near Belfast was watching the young lads aged about twelve to fourteen running between cars which were stopped at traffic lights selling copies of the “Tele”.  It is a sign of the times that those boys have now been replaced by Polish men, known locally as Telegraph Poles.

 

Growing up in the Troubles, the Telegraph was always full of reports of murders and atrocities, the newspaper wrote itself.  I wondered what local papers in Britain wrote about, well now I know!  The journalist was on the phone for an hour,  it was by far the most demanding interview I have given on my diagnosis and living with Parkinson’s. I was surprised to find tears welling up once again as I re-lived the events of September 2007.  It will be funny reading my story in the Tele.

 

My bendy foot is getting worse.  When I am running my right ankle rolls outwards so I am running on the outside edge of my foot.  The problem kicks in after about a mile, and comes and goes for the rest of the run.  I have to try and force it inwards but it is very difficult and quite frightening, I don’t want to stop running.  I have tried to correct it with a new pair of running shoes, which grab your ankle and hold it tight.  These “Stability Shoes” have made no difference.  I was gutted, I thought I was going to get one over on my condition.  “Cost a fortune, give you blisters and generally disappointing” would be a less catchy but more accurate name.”

 

With the Wobbly Williams Walk taking place at the end of August, and Pirates for Parkinson’s marauding in a town near you in September, things have been very busy in relation to my Parkinson’s activities.  This was highlighted when I opened my email this week.  I had twenty new emails of which eighteen were Parkinson’s related, one was to do with our upcoming holiday and one was a joke from my sister entitled “The day the penis asked for a raise” . It was very good but probably not suitable for these pages!

 

We are off on Saturday morning to Majorca for two weeks. After five trips to Puerto Pollensa in recent years, we have decided to venture to the other side of the island to Port de Soller. You can’t accuse us of not being adventurous!  It will be great to get away from my laptop for a couple of weeks.  I have spent much of the weekend loading up content for the website for the two weeks I am away.  Particularly, I had to find fifteen days worth of jokes for the Jokes page.  The problem was solved when I found a web site devoted to Chic Murray gags.  Billy Connolly talks about Chic but I have never really seen or heard any of his material.  Boy did I laugh.  As a result, for the next fifteen days the web site will have jokes like “I dreamt I was forced to eat 25lbs of marshmallows. When I woke up, my pillow was missing.”

 

Sunday 2 August 2009

Majorca didn’t disappoint.  The weather was hot and we had a great time.  This year we rented an apartment with my sister, Alison and her husband Rob in Port de Soller.  The apartment was beautiful.  It was on the side of a hill and the view from the terrace was of mountains for the full turn of the head

 

I ran most days in the hills around Soller (ok walked and ran) and have felt great the whole time.  My new trainers exacerbate the bendy foot issue not solve it.  For the time being they look like a big waste of cash.

 

We barbecued in, ate out, pedalo-ed, fished, swam, and walked up the bloody hill three times a day lugging five litre bottles of water.  Ella learned jumping dives and Beka learned to swim without armbands. We lay on the balcony (at night) and watched shooting stars and satellites. I didn’t miss my phone but couldn’t keep away from my personal email.

 

One of life’s coincidences played out the first weekend of the holiday.  It all started a few years ago at The Turnberry hotel. A magnificent place, possibly my favourite place. I have always enjoyed a gin and tonic (“the gin is too nice” were words uttered to me when I was 17 by a man who was living proof).  But a gin and tonic in the bar of the Turnberry Hotel, as the sun drops behind Goatfell and casts shadows over the links, makes a gin and tonic at home on a Sunday evening a fairly tame experience. Anyway, as I was saying, I was in Turnberry with some good friends and one of them asked me if I drank whisky.  I answered no, a fairly horrific night on it with a girlfriend’s dad when I was 21, which included standing on her head during the night, left me feeling nauseous with every whiff I got of whisky thereafter.  “You just haven’t found the right one yet” he replied.

 

The friend concerned, Gavin, is a sales director for Loch Lomond Distillery, a man who knows a bit about the vile stuff.  He took me into the Whisky Bar and proceeded to interrogate me about my likes and dislikes with regard to flavours and tastes.  All the while he was scanning the bar’s whisky menu, a substantial tome indeed. He eventually settled on Caol Ila, a whisky from Islay. Particularly he settled on a thirty something year old Caol Ila, I can’t remember the exact vintage. I do remember, however, the smell.  It was like the smell of the school changing room before a rugby match, the smell of the stuff we used to smear on our legs.  Similar to the smell of TCP.  The taste was staggering. Smooth, velvety, a hint of burn, a smidgen of smoke. Beautiful in every way.  Except price.  I was now in possession of the knowledge that I did like whisky and that whisky cost £96 a shot. That will be me converted then!!

 

Since then I have drunk the more reasonably priced Caol Ila 12 year old on the rare occasions I have seen it in a bar. I don’t possess a bottle and have never drunk it at home, it is quite pricey at £30 a bottle. But I decided I would take advantage of airport prices and, in the unlikely event they sold it at John Lennon Airport, I would buy a bottle at the airport on the way to Majorca. As luck would have it the airport included Caol Ila as one of the dozen whiskies they stocked.

 

So on Saturday night I sat on the terrace of our apartment in Soller, under a night sky filled with more stars than I’ve ever seen before, sipping Caol Ila with water.  And back in the UK the Open Championship was being played out, after a fifteen year absence, at Turnberry.

 

Thursday 13 August 2009

Running to work running to work has become a bit of a trauma in the last few days!  The first catastrophe was on Monday when both of my nipples started to bleed profusely! This happened two miles from the office and I had to try and get to work without anybody seeing me.  I looked as if I had been squirted with strawberry sauce by a passing ice cream van.  The biggest problem came at the office as I manoeuvred myself into a lift full of people with my baseball cap spread across my chest, which was fine until I had to select my floor.  To operate the lifts you require one hand to press the button and one hand to hold the lift pass in position over the reader.  I managed to use my elbow to press the button without revealing my strawberry topping.  My luck didn’t last however as when we got to the eighth for the office door was locked and I had to hang around the toilet until somebody else arrived.

 

On Thursday the problems started after I was showered.  As I was dressing I discovered I had neither a pair of pants nor a belt to wear. I spent the whole day hauling my trousers up for fear of exposing myself!  Thursday’s run was my first seven mile run in the build up to the half marathons, the first of which is just four weeks away.

 

I have accepted my first speaking engagement as a Parkie.  I am standing in for Tom Isaacs as the after dinner speaker at the Parkinson’s Disease Nursing Specialists Association annual conference.  At last I know why I contracted PD, I always lamented the fact I never managed to get invited to a nurse’s party when I was a student, and here I am twenty years later with not only an invitation, but the opportunity to be the centre of attention at a nurse’s party complete with 80s disco!  The only downside is I have to speak for 30 minutes and make it funny!

 

The preparations for the Wobbly Walk are virtually complete.  We have eighteen walkers during the entire distance with another 50 or so confirmed and doing at least a day.  I think once it is all finished we will have over 100 walkers taking part once again.  The band line up for WobbleAid is an impressive collection once again and I think we will exceed last year’s total of over 2000 euros.

 

I met with Michael Lithgow last week for lunch.  Michael and I shared a room for one year in a student flat in Maryhill back in 1990.  It was good catching up as we hadn’t seen each other for eighteen years and to be perfectly honest nothing much had changed.  It is one of the up sides of my life that I am back in contact with so many friends who otherwise I would probably never have seen again.

 

Wednesday 19 August 2009

I had a free afternoon on Saturday so I texted a few friends to see if they knew of any spare tickets for the football at Ibrox.  One of the girls from work, Stephanie, got back to me saying her dad had one.

 

I met Stephanie, her dad, Jamie, and his pal, Greg at a supporters club near the ground, to pick up the ticket and have a beer or two. The craic was good and after the game we went back to the club and had a few more pints.  The subject of children came up and it turned out that both Jamie and Greg were fathers of grown up girls.

 

“So, what age are your wee girls then?” Jamie asked me.

 

“Seven and five,” I replied, “Ella, the older one is a very placid wee girl, whereas Rebecca is much more of a handful.”

 

Jamie smiled, “Lassies.  You wait until they are teenagers.  That’s when all the trouble starts.”

 

Jamie looked across at Greg.  I followed his gaze, waiting for Greg to tell a tale of despair from his life of being a Dad.

 

Greg nodded in agreement and said, “I used to be a lassie.”

 

For a moment I believed him.  Four days later I am still laughing.

 

Thursday 20 August 2009

The Race Night was fantastic.  It is a great way of extracting money from people.  Organiser, Karen, fooled everyone into thinking it was a cheap night by pricing the tickets at a tenner for the race night, buffet and disco.  Then she unleashed a team of dedicated highwaymen to sell raffle tickets.  It was brilliant.

 

I am devilishly excited about the walk.  It is going to be terrific, all but two of last year’s walkers are taking part this year and no doubt we will have a laugh.  We are attracting a bit of media interest as well, with hopefully a bit of TV coverage next week.

 

As I have a half marathon in two weeks I am going to try and do a bit of running during the walk.  I bought another pair of trainers, the latest version of my worn out pair and they are great!  Ran 8 miles in them on Tuesday and my feet behaved.  Largely.

 

Sunday 23 August 2009

As with last year, Saturday, the day before the walk started was spent chasing my tail and praying to any God who would listen for things to go well.  Alan and Bob were staying in Belfast and ran into Alex ‘Hurricane’ Higgins in Robinsons Bar during the afternoon.  They told him their reason for being in Ireland and he signed a Wobbly Williams t-shirt and posed for photographs.

 

Hurricane was horrified to hear from Alan that he had told or mutual friend Tony to ‘f*** off’ 10 years previously when Tony asked him for his autograph.  He denied this ever happened because he had never told anybody to ‘f*** off’,  Given that he threatened to have Dennis Taylor shot after a match I found it unlikely he had never uttered the F-word.  In any event he signed a photograph of Tony which, for the first time in the years I have known him rendered him speechless

 

Today we all gathered at Cooke Rugby Club at Shaws Bridge in Belfast for a 7 mile walk and a Family Fun Day.  We arrived anticipating torrential downpours.  It was good seeing all the walkers assembled again and some new faces as well.  As the Met Office predicted 5cm of rain would fall on Belfast during the walk, everybody turned up looking like they were ready for an assault on Everest rather than a dander along the Lagan towpath.  In the end we got away with it with only a few spots falling and towards the end of the afternoon the sun came out.

 

We had 30 walkers on Day 1 including Keith from Marks & Clerk’s Leeds office, Sean from Oxford and the lovely Karen from London.  Sean and Karen are here for the week, a decision made in a rash moment back in January.  They are stuck with it now!  I think they are having a good time.

 

We have retire to the Crown Liquor Saloon on Great Victoria Street and started as we mean to go on.

 

Tomorrow is Glenariff.  There will be around 20 of us for the walk along the north side of the Glen to Carrigan and then around the south side of the Glen all the way down to the Shore Road at Waterfoot.  I am really looking forward to this day as the Antrim Glens are truly spectacular.  I hope my feet hold out!

 

 

Monday 24 August 2009

A fantastic day, we woke up to glorious sunshine and had a wonderful day’s walking.  We got a bus early doors to Glenariff Forest Park we mat up with Liz and her group from the North of England who learnt about the walk from the website.  We set off up the side of the Glen to Cargan before heading down the other side through the forest park to the waterfalls.  I walked much of the way with Helen from the Cure Parkinson’s Trust and after lunch we finished or 17 mile day with a few pints in Hugh The Mariner’s bar in Waterfoot.  We ran into the local alcoholics who entertained us royally (or not as it was a big Irish republican bar) with terrible gags told wonderfully.  The arguments were better than the jokes:

 

Her:  “This morning we were at the wishing well in the..”

Him: “That was last week”

Her: “What do you mean last week?  It was this morning”

Him: “I’m telling you it was last week”

Her: “Good job I’m in charge of the contraception.  Anyway….”

 

You often see strange sights in Ireland but I have seen none stranger than when we were walking between Waterfoot and Cushendall.  As we passed through the arch in the cliffs we saw a field on the other side of the road which two smartly dressed men were struggling to mow using domestic lawnmowers.  Tony and I stood open mouthed as these two lunatics pushed their lawnmowers through ruts and furrows in an attempt to cut the grass.  Truly nuts.

 

Tonight we ate in Upstairs Joes and then moved downstairs into the bar.  The last time I had been in this bar was for Eddie’s stag night nearly twenty years ago and as luck would have it the back room where we all sat swearing, until Johnny Joe himself came in and us to curb it, was empty and we all took a seat and told stories of our youth.  It was tremendous.

 

Tuesday 25 August 2009

This was easily the worst walking day I have ever encountered.  It was advertised as being 17 miles but came out nearer 24 and we had two mountains to climb in the first 8 miles.  Not only that, the mountains were extremely boggy and on three occasions I was up to my knees or my waist in mud.  As soon as I went in to the water, my leg started to cramp and my boots filled up.  It was a very challenging walk but perversely I enjoyed the mountain sections and hated the easier road and forest sections.  The local farming community haven’t embraced the Moyle Way, the path which we were walking, particularly the farmer that built the barbed wire fence across it with only a broken stile half a mile away from the path to climb over.  I found it difficult to climb over but Fiona couldn’t get over it at all, I had to throw her over my shoulder to climb the obstacle!

 

The views from the top of the Slieveanorra were truly spectacular, however, the last 15 or 16 miles from the top of Slieveanorra to Ballycastle were just a trudge along the road and I wouldn’t recommend this walk to anybody!

 

The weather was fine which made it bearable and I was pretty knackered by the time I got Ballycastle 10 hours after setting out from Glenariff.

 

The Lammas Fair was on in Ballycastle when we arrived, the annual gathering of the travelling folk of Ireland to sell horses and other livestock.  In the time we were there three horses were shot dead by the scumbags who frequent this gathering and it was a generally fairly uncomfortable experience.  We did however find a fantastic restaurant called Anzacs which had an Indian chef who produced some of the most fantastic curries I have ever eaten with the added bonus that you could have it with traditional garlic fries!

 

My feet ache and things better pick up or I am not going to be able to finish the walk.

 

 

Wednesday 26 August

Richard McMillan from last years walk, Jane Irvine, my old maths teacher and my dad joined us for today, the short hop from Ballycastle to Ballintoy.  This walk was along roads, which was a relief to my feet as I could wear my trainers!  It is not a particularly exciting walk but finishes with the magnificent Carrick-a-rede rope bridge.  I have done this once before in my youth and found it fairly unpleasant then.  However, with shaky legs, sore feet and hand rails which are significantly below the ends of my arms it was far more scary now!  We were in the pub by 3:30pm and found another wee room to watch Arsenal beat Celtic and have our dinner on our knees.  After the game we moved into the bar for a “Sing Three Lines Of A Song With Tony” session.  It was great craic.

 

I had hoped that ITV would come and film some of the walk today as had been arranged however, we were foiled by the death of Irish American Senator Ted Kennedy, which filled all the news programmes, and the inability to get a mobile phone signal in Ballintoy.  Ironically the only place that you could get a strong enough signal to make a call was inside the telephone box on the main street.

 

Thursday 27 August 2009

I met Harry this morning.  Harry is the local shop owner and taxi driver.  I went to his shop to buy some sweets to sustain me through the day and he regaled me with stories of his life, Ballintoy and his physical achievements.  He was some man.  Tony asked him if he had live in Ballintoy all his life to which he looked perplexed and said “not yet”.

 

Today’s walk we started at Giants Causeway and walked back along to Ballintoy so the wind was behind us.  It was a phenomenal day, easily the best days walking I have ever had and, frankly, I think I am ever likely to have.  The Causeway coast is truly awe-inspiring.  I had previously visited many of the sights along the coast but I had never walked between them.  The walk between them is far more rewarding than the sights themselves.  The coves and bays between the Giants Causeway and Dunseverick are sights that made me feel very small indeed.

 

Vicky, her brother Richard, his wife Lynsey and our mutual friend Ian joined today and I walked with them most of the way.  Ian and I had a chat with Liz and her gang who move along at their own pace but seemed very happy with what was going on.  One of the highlights of the week was approaching an arch in the cliff and seeing the expanse of Whitepark Bay laid out before us.  It was spectacular and it was great to be able to share it with somebody like Ian who has been such a supporter of Wobbly Williams.  At the entrance to Whitepark Bay there is the smallest church in Ireland and if you didn’t know is was there you really would miss it, it is tiny.

 

With the new arrivals we had a very big night in Ballintoy.  Karen and Adele from work also arrived around teatime and we all proceeded to get extremely well oiled in the few hours that followed.

 

Harry the taxi driver picked us up at 1am and ran us to a house that some of us were staying in at Bushmills, where we crashed out.  Harry had found out what we were up to and has agreed to pace us round the London Marathon, his 16th marathon.  “Don’t worry about getting me a number, I will just hop over the fence.  Give me six weeks notice”

 

Friday 28 August

Today was another superb walk starting at the Giant’s Causeway and finishing in Port Stewart.  The first section was extremely windy and if the winds has been in any other direction it would have been very dangerous walking along the cliffs.  I made the decision to wear my trainers, which I was regretting as I was slipping about all over the place and when there was a 300ft drop at either side slipping is not what you want to be doing!  We didn’t hang around in the morning and passed through Portballintrae very quickly before heading out to Dunluce Castle which sits on the side of the coast road and is a huge ruin which dates back to the 1200s.

 

Beyond Dunluce Castle is Curran Strand, a beach which took us an hour to walk the length of into a howling gale with the sea to one side and the Majestic Royal Portrush Golf Club on the other.  When we made it to Portrush we made Ramores for a good feed and a couple of pints.

 

As we were only 5 miles from the end we took a bit of time and went to Barry’s Amusement Park.  I hadn’t been in Barry’s for probably 20 years and it was exactly how I remembered it.  We went on the dodgems and the big dipper, the big dipper being even more frightening that the Carrick-a-rede rope bridge as it was extremely rusty and far too small for my enormous legs.

 

After Portrush it was a short hop down the coastal path to Portstewart where we stayed the night.  Or where we were supposed to stay the night!  When we got there, there were rooms for everybody except me and Vicky and the staff at the hotel proved themselves to be particularly inept at resolving the situation.  In the end we double up our rooms and enjoyed a significant reduction in the bill for dinner and a few bottles of wine.  I was too chilled out to get annoyed about the whole situation!

 

Saturday 29 August

After breakfast we headed off to Downings in Donegal for the final days walk and the WobbleAid Music Festival.  We arrived at Downings at lunchtime and I met up with a few old faces like Reflector from Glasgow, and Steven and Alison from Bearsden who had come over for the weekend.  The walk was lovely, a circular walk along Atlantic Drive, around the headland to finish up back at the Harbour Bar.  With the walking finished I felt a degree of relief and enjoyed a few beers and a bite to eat.  In the evening we went to the Harbour Bar and watched Reflector do their stuff into the wee small hours.  Vicky disappeared about 9:30pm and I assumed she had gone to bed.  I went to join her at 2:20am only to find she wasn’t there.  Just as I was climbing into bed, 5 minutes later, the door burst open and I was dragged from my bed to the residents bar to be regaled of stories of a wild night in the Downings nightclub.  Ian was on great form and managed to raise €100 from the collective audience in the bar!

 

Sunday 20 August

Sunday was a long day.  I spent the day selling raffle tickets and t-shirts at the Second WobbleAid Music Festival wishing I was in my bed most of the time.  The festival itself was fantastic, Boy Done Good were on at the start of the festival, picking up from where they left off last year and they did a brilliant set.  The bands continued and the beer flowed until 10:30pm when it ran out.  This was four hours longer than last year so no complaints.  There was a wee surprise waiting for me when I arrived at WobbleAid in the form of Heather Ann Ross and Ruth Adair from school and it was lovely seeing them.  Reflector finished the evening and I crashed out at midnight just as they were starting their set.  We raised around €4300 including €850 in the raffles and sold 40 WobbleAid t-shirts.  It was fantastic fun.

 

Its been a brilliant week.  It lived up to last years walk in terms of scenery and enjoyment but for me it was probably better as I didn’t have either the stress of organising it or the worry that I could complete such a thing.

 

The funniest moment of the week came towards the end when Tony, who was completely knackered after his weeks walking, was having a cigarette.  This old dear came up to him and said ‘What are you boys all doing here?’ and Tony explained we were on a walk to raise money and awareness for Parkinson’s.  He told her about me and she looked at me and said ‘He’s awfully young.  This Parkinson’s, does it kill you? Is it terminal?’ to which Tony replied ‘I hope so, my feet are killing me!’

Sunday 6 September

On Monday 7 September it will be two years since I was diagnosed with Parkinson’s Disease. Unlike last year I have not been counting the days to the anniversary with dread. Rather it has crept up on me and I’m quite relaxed about it. However, as I said when I ran my first 10K, if my neurologist had been able to tell me the day before my second anniversary that I would run a half marathon I would have been over the moon.

 

The Great Scottish Run was my second half marathon and was intended to be a gentle warm up for the Great North Run in two weeks time. I ran with my friend Karen who kept me going whole way round with Jelly Babies and word games.  Before I knew it, we were running through Glasgow Green towards the finish line, three minutes faster than I ran my first half marathon, the Great North Run, eleven months ago. Admittedly Glasgow is an easier course, however, given that the disease has progressed in the last eleven months, to come close to my time from Newcastle, let alone beat it, was, to me, a huge achievement.  I would be surprised if there are many of today’s runners as chuffed with themselves as I am this evening.

 

I have always used exercise as my primary weapon against this illness and today was a victory for me. As I learn more about this illness I realise that with determination you can deal with what it throws at you on a daily basis and sometimes, on days like today, push it back and reinforce my resolve for the years ahead.

 

When I was first diagnosed I took comfort from a posting on a forum in which a newly diagnosed Parkie asked “how long am I going to be able to live a normal life?” The reply was “you will be to enjoy a couple of years of normality”. I remember thinking at the time that “well that’s not so bad, two years is ages”. Those two years are now up and the person who wrote the reply was right in some regards and wrong in others. He was right in that my life hasn’t been normal since I was diagnosed but that was my decision not one forced upon me.  He was wrong with the implication that after two years Parkinson’s will in some way adversely affect my life.

 

No chance.

 

Tuesday, 15 September 2009

 

Over the last 10 days, I have been as up-and-down as at any time I can remember. The high of the Great Scottish Run was tempered with the return to reality of the working week. My first run after the Great Scottish was a 6 mile run into work on Wednesday which gave me a small blister. Never having been one to worry about such things I ploughed on with my plan of running 10 miles on Saturday. I put a plaster over the blister but I knew after about 4 miles something peculiar was going on inside my shoe. The full horror of what had unfolded was revealed when I took my sock off to find the blister mushroomed and was now covering much of the instep of my left foot. I immediately panicked and made matters worse by removing the plaster. This took all the skin away and left me with an unholy mess.

 

I soldiered on through Saturday and enjoyed a fantastic dinner party at Gavin’s house, complete with Caol Ila and a few cleansing lagers. Indeed I enjoyed it a bit too much, and did not get into my bed until four o’clock Sunday morning.

 

 

Sunday was a bleak day. I had had four hours sleep, not enough tablets at the right time, a very sore foot and a stinking hangover. Monday was even worse as the nurse at the local clinic, when asked will I be able to run the Great North Run on Sunday said “absolutely not, under no circumstances”. She then clarified her comments by saying that I could run if I wished, but don’t bother coming to see her when it all went a bit pear shaped. This depressed me no end.

 

She applied a dressing and sent me on my way and, to be fair, I think her advice is probably wise. However having had the benefit of reading Ranulph Fiennes autobiography, “Mad, Bad and Dangerous To Know”, running a half marathon with a blister is a walk in the park for some people.  If, for example, I had lost a limb, then I might have an excuse for walking part of the way.  A blister is not a reasonable excuse! I’m going to run.

 

The decision to run is also partly influenced by the BBC expressing an interest in the story!  Who’s a media tart????

 

Tuesday, 22 September 2009

The BBC first got in touch on Tuesday. When you enter races like the Great North Run you always get an e-mail asking if you have a story to tell which the media may be interested in. I always reply to this e-mail with a full-blown account of my situation. In all the time I have been running races the media have never once expressed an interest! So this time I didn’t bother. Karen McCartney, however, did and the BBC loved what she wrote. I was sceptical as, being an old hand at being let down by the media, they had probably expressed an interest in hundreds of stories. Karen was adamant that I was wrong. My scepticism evaporated when she came in to work on Friday with VIP passes to get us into the elite runner/celebrity area for an interview with the world triple jump record holder and Olympic gold medallist. Jonathan Edwards. I was gobsmacked.

 

Before the run on Sunday, however, we had Pirates For Parkinson’s on Saturday, to coincide with International Talk Like A Pirate Day. Kingsmill, the bread maker, had expressed an interest in this venture through an old work colleague of mine, Stephen Eckersley and arranged a Pirate Day at their Stockport bakery. I went along complete with Pirate Ella, Pirate Rebecca and Pirate Wench to take part. It was absolutely brilliant. The bakery team had embraced the fun aspect of the day whilst getting across the serious message that Parkinson’s is not an issue confined to the elderly. We had a great day. The regional team hoped to get national buy in from the board of Kingsmill for 2010, and to make their job easier, they asked if I could wear a badge in the BBC interview with the Kingsmill logo on it. I was doubtful that the BBC would let me away with that but I took the badge and a couple of T-shirts with enormous Kingsmill logos printed on them.

 

I left the family in Stockport and my brother-in-law Rob ran me to Sheffield to catch the train to Newcastle. I was knackered, the previous few days had been very exciting but very tiring, I was pretty concerned about running a half marathon.   I met up with the rest of the Running Team and was delighted when Scott offered to dress up as a pirate for the interview, and wear the Kingsmill T-shirt.

 

During the meal Bob and Alan suggested a rather devious plan which appealed to me no end.  Last year, Running Team Iron Man, Matt Howick, had been a last-minute replacement for Karen Wood, and received a certificate after the race bearing her name and his time of 1 hour 37 minutes.  He was looking forward to having a Great North Run certificate with his own name on, and hopefully beat his timeof the previous year. This sort of vanity is not acceptable in the Wobbly Williams Running Team. When you run a race such as this your time is calculated by a chip you wear around your ankle, your personal timer starting as you cross the start line and stopping when you cross the finish line. The next morning, when Matt went into the shower and I switched chips with him.  The Williams chip was going to be propelled around Tyneside on the ankle of an athlete, whereas the Howick chip was going to spend a more sedate morning, taking in the scenery, on the ankle of a slow-moving wardrobe.

 

We got to the start line about an hour before our interview and wandered through the hordes of famous people that were gathered to do the race. Cathy mingled with them and collect autographs on a Wobbly Running Shirt from James Cracknell, Ben Fogle, Gordon Ramsay and Sue Barker.  We were introduced to Jonathan Edwards who is an immediately likeable guy.  Really friendly, really interested and an absolute gentleman. When Matt disappeared off with our bag to put it on a baggage bus for collection at the finish, I told Jonathan about the chip swapping and he doubled up laughing. Matt heard us all laughing, turned round, saw us all looking at him and wondered what we were up to!  We were the last group to be interviewed and we spent the intervening time trying to get the Kingsmill logo and the Running Team sponsors into the background of the shots. It was terribly infantile and very amusing.

 

When our turn came Jonathan briefed me on what the first question was going to be.  We told him about the Kingsmill involvement and the importance of getting Kingsmill logo on screen.  He moved Pirate Scott right beside him.  In doing so he blocked the camera view of Alan who said “For f*** sake, move out of the way Jonathan, nobody can see me”. We also explained that if Adele could say “doughnut” on television, her boss would double her sponsorship money. Again Jonathan had a good laugh about this and set the question up.  The interview went well, doughnut was mentioned and the Kingsmill logo was exposed.

 

We started the race with all the famous people and just behind the elite runners, I must have crossed the start line in about 400th position and for the first 10 miles everything was fine. At 10 miles I started to feel unwell and my legs just decided to stop running. It was a very strange experience, I didn’t want to walk but my legs wouldn’t oblige me with running. As ever, Karen was with me and she took me through the last 3 miles walking and running. My blister held up but I developed another huge one of my other foot which burst at 12 miles! Richard came and went throughout the race, running off into the distance, before walking a while and disappearing behind us, but the three of us met up with 400m to go and crossed the line together in 30,000th position!

 

My time was 2 hours 36 minutes, however the record books will show Bryn Williams completed the Great North Run 2009 in 1 hour 34 minutes. Matt found it very funny.  Thankfully!

 

Thursday 1 October 2009

After the Great North Run we went for a few beers and a meal in Kublai Khans. Voluptuous Vicki joined us and we had a good chat. She is a canny lass. I was knackered and chucked it about 11. We were up again at 5 for the train back to Glasgow, Monday was a long day! I was in bed at 7.37pm and slept for 11 hours.

 

On Monday night I went to see the doctor and changed my Selegiline for Rasagiline. Selegiline makes me feel very tired and a bit nauseous but I think it makes a difference. I started Rasagiline on Saturday and so far so good, feel a bit ropey, most of the time, but hopefully that will pass.  The neuroprotective benefits of Rasagiline have been in the news once again this week.

 

On Saturday I took the girls to their first football match, Rangers v Aberdeen. They have been pestering me for a while to go and, sadly, they loved it. An expensive hobby is born. Rebecca said at one point, gesturing to a man who was trying to communicate with the Aberdeen fans, on the topic of their alleged love of sheep, “That man is shouting. He’s giving me a headache”. Get used to it kid!

 

Despite the blisters, I ran the East Neuk 10K in Anstruther, Fife on Sunday morning. It was the last of the ten 10Ks I challenged myself to run at the start of the year (along with two half marathons). It was a great course, Vic and I plodded round and received a splendid yellow mug at the end. I was Last Male (again) and joint fifth-last overall in 65 minutes. They were all serious runners, there wasn’t a bottle of ketchup in sight.

 

On Wednesday I went to London to see the Cure Parkinson’s Trust. They work out if a church in the City. It is heartening to see how little of the money which is raised for the CPT is spent on running the charity. Their PCs are so last century!  The laptop they use would cut off circulation to your legs after prolonged exposure. I have known lighter lap dancers.

 

In the evening I attended a dinner at the residence of the Bishop of London, near St Paul’s Cathedral. It was held in aid of the Cure Parkinson’s Trust and was a great experience. The Bishop and his family were great hosts and his gaff is glorious. The house was built in 1672 on the ashes of the old deanery which was destroyed in the Great Fire. The Bishop gave a speech of welcome and a short history of the property. He explained that the chimney had an internal staircase to allow children up for cleaning purposes. How I wish Rebecca had been there.

 

The guest and speaker who has left a lasting impression was Professor Steven Gill from Frenchay hospital in Bristol. From his own work, he believes the drug to cure Parkinson’s already exists. This drug is GDNF.  What is lacking is the delivery method. This confirmed my own feelings on the matter. The difference being my feelings are gut feelings, borne  out of hope rather than scientific fact. Hearing it from the rational scientist’s mouth was wonderful. With Amgen loosening its grip on GDNF, things are starting to move again. Fingers crossed.

 

I was sandwiched between two marvellous ladies at the dinner, Lyndsey Isaacs and Helen Matthews, it was a good giggle. The Bishop’s son, Alexander, acted as the drinks waiter and was very attentive, continually popping up behind us with a “more red wine Mr Williams” or “more elderflower cordial Mrs Isaacs”. He is a sharp fellow because when Lyndsey and I swapped name plates, he only referred to me as Mr Isaacs and Lyndsey as Mrs Williams once before spotting the switch. We thought we were hilarious.

 

The week ahead will be taxing. This weekend is a boys weekend at the Munich beer festival and on Monday I have my debut as an after dinner speaker. I am terrified!

 

But, hey, maybe just maybe the cure is closer than I dared to believe.

 

Tuesday 7 October 2009

I am exhausted. And exhilarated. The weekend was spent in Munich and Monday saw my maiden after dinner speech.

 

We set off for Munich on Friday, landing late afternoon. We took a relaxing, stress free taxi ride in to Munich. Note the words ‘relaxing’ and ‘stress free’. This will be important later in the blog. When we arrived at the hotel (relaxed and unburdened by stress), we had a quick turnaround and went to the Hofbrauhouse, a gigantic beer hall owned by one of the city’s 14 breweries. We drank steins of lager and ate pork knuckles.

 

Some of us were refrained and went to bed early, about 2.30am. I was sharing a room with Eddie, who, as usual, kicked the arse out of it.  He came in at 5.30, collapsed on his bed and snored contentedly for 3 hours.  It was very sweet.

 

Saturday was our big day at the festival. The main site is in a park which houses 14 beer tents, each holding many thousands of people, and a spectacular fairground.

 

We got into a tent about 9.30, found a table and got stuck into the beer. Absolutely marvellous. The band started at 11 and the day got messy. In a relaxed and stress free way. By 4 pm we had drunk about 8 steins each, eaten half a cow and danced on the tables. Many beautiful frauliens in traditional costume were photographed just in case the alcohol blunted the memories. It was like a day at the darts without the darts.

 

Come 4 o’clock the tent was emptied in preparation of the evening session. We all got separated in the melée and I ended up wandering around a park before heading back to the hotel for a lie down.

 

In the evening some of us went out again (to a traditional Jamaican bar) whilst others slept for 16 hours due to their relaxed and stess free disposition.

 

Sunday came and we went back to the tents via the roller coasters. After a couple of steins we went to the pub to watch the Old Firm.  After the game things went a bit pear shaped. One of the party kept reminding us that the train was quicker and cheaper than a taxi. This person’s name will remain secret (although it does end in double t, like pratt). We had two hours so we had plenty of time.  Plenty of time that is, if you know how to buy a ticket, know where the trains go from, know which train to get, don’t need a poo and don’t want to spend the mighty saving that travelling by train releases buying a carry out.

 

The train is not faster than a taxi. It takes twice as long. As the possibility dawned on us that we might miss the flight the stress levels lifted and the relaxing weekend was forgotten. The only pleasure to be had was watching He Who Cannot Be Named (although it does end in double t, like twatt) furiously try and check in on his phone, the rest of us had already checked in so could go straight to the gate.   We got to the airport 15 minutes before take off. We ran as fast as our drunken legs would carry us. Which wasn’t terribly quick and were helped greatly by a very quiet airport and no central security; each gate had it’s own security. We made it by the skin of our teeth. I was shaking like a leaf when we got to the plane. But, hey, the train had saved me 5 euros, which I spent on diacalm and betablockers.

 

The rest of the journey was uneventful and we got a taxi, not a train, from Edinburgh airport back to Glasgow.

 

On Monday I delivered a speech to the Parkinson’s Disease Nursing Specialists Association annual conference. It was my first stab at after dinner speaking. My speech has been four weeks in the writing and the events of the weekend resulted in a few amendments on Monday morning.

 

The journey to the dinner gave me further material. I was flying from Glasgow to Birmingham with FlyBe and just as I sat down on the plane the pilot piped up that we were just popping up to Inverness to pick up some stranded passengers. Just a wee 300 mile detour. Great. Should have taken the train.

 

My plan of arriving early and having a relaxing shower were scuppered. I put my kilt on in the plane loo. In normal circumstances I struggle to fit into a plane loo to do loo-type things. In my stressed to the eyeballs mode, putting a kilt on caused much swearing and cursing the helpful souls at FlyMaybe.

 

I arrived in time thanks to the lovely Helen from the CPT coming to my rescue and whisking me from the airport to the conference centre. I met the delegates, mostly female and dressed in eighties disco gear (80’s theme night), and we went in to dinner. I was surprisingly calm through the dinner, I have done the best man thing a few times and I can not remember eating anything before any of those speeches and I do remember numerous toilet visits. On this occasion I ate the whole lot and managed to keep my bowels in tact.

 

The speech went well, the audience were receptive (well oiled), interested (in what I was wearing under my kilt) and clearly understood fantastic gags when they were served up. I got a tremendous buzz from the whole thing.

 

I crashed at midnight and was up again at 5 for the flight back to Glasgow. This last week has been wonderful. Great news, great progress and great craic with great friends. I am a lucky man indeed.

 

Wednesday 14 October 2009

It’s been a harsh ten days. The excesses, in all regards, caught up with me and rather than stop and recover, I tried to carry on.  Not clever. The breaking point was Saturday when I was at a dinner organised by Alan. All the usual suspects were there and it was great craic. But I started to fall asleep at the table!  How rude!  Sunday was grim. I went for my first run in two weeks and felt rough all day. On Sunday night Ian, Richard and I went to the final of the Grand Prix Snooker and I dozed off there too!  It was only the sound of Richard snoring that woke me up.

 

Now I am very shaky and stiff. Aching joints. The stress of this makes everything worse. It’s a wobbly circle. However, a few nights kip, an increase in the running and a couple of days off the beer will see me right.

 

The way I an feeling makes the running schedule I have challenged myself with for 2010 seem a bit ridiculous!  On a whim I have committed to ten half marathons and two full marathons. The marathons will probably be London and Philadelphia, the halfs will include Silverstone, Liverpool, Edinburgh, Glasgow, Great North, The Royal Parks and a few of the island races off the west coast of Scotland. The island races are generally on a Saturday, finish with a ceilidh on the Saturday night and leave you stranded on the Sunday because the Wee Frees object to the boats running on a Sunday! Sounds like a weekend and a half to me.

 

The trip to the snooker was a bit dull. Except for the five minutes I sat with a large lump of Crunchie in my mouth, unable to chew because of the noise it would make, unable to breathe because of the volume of chocolate in my mouth and unable to open my mouth because I was suppressing a belly full of giggles. Why do they sell Crunchies at the snooker? Or bottles of water with sport tops that allow you to take a big glug, only to make a noise that sounds like a lorry letting the air out of it’s brakes as soon as you stop sucking?  As I sat there looking like a hamster, Richard and Ian pissed themselves and all the snooker aficionados looked at us with distaste.

 

The organisers sell little earpieces at the snooker so you can listen into the BBC commentary whilst you watch.  We did not partake; one of the advantages in being there is not having to listen to John Virgo.  Everyone around us did. John Virgo is even more irritating when you can only hear the drone of his voice but not actually what he is saying, especially when the drone is coming at you from all directions.

 

Friday 23 October 2009

My increased level of symptoms peaked last Wednesday when I ran into work. After a mile, my bendy foot bent like never before.  Worse still once bent it stayed bent. I had one normal foot and one hen toed foot which was tipped out so I was running on the edge of it. It was frightening to be frank.

 

After a few hundred yards I had to stop and walk. The foot then recovered and I started again. Within a further few hundred yards I had to stop again and so on. I was panicking, which compounded the situation. My thinking became clouded with ridiculous scenarios and irrelevant thoughts. I was not only panicking because of my bendy foot I was also panicking due to vanity!! I had left the house in sufficient time to get to work and be showered and changed before any of my colleagues saw me in the dreaded running tights! Here is me suffering from an increase in symptoms which could put an end to my running and I am more concerned about people seeing me in my running gear!  What a muppet. Irrational thoughts were in full swing.

 

Anyway I had to walk for large chunks of the way and, yes, my colleagues did get to see me and there were comments. The problem with my tights and matching top is they are described as “compression” clothing. Squeeze you tight to increase blood flow. Apparently. In reality they just emphasise the man boobs and bulges.  Or lack of them. Not a good look, not good at all.

 

So the end of the week was pretty depressing. However, I had a couple of good nights kip and on Saturday tried again with a six mile run around Bellahouston Park. It was glorious, one of the best ever. It was cold, slightly frosty and the sun was dazzling. Felt like I could run forever. The foot was fine and we ran six miles. When I stopped, however, the foot bent and walking was painful. I can live with that. I ran another six on Tuesday, having had a weekend off the booze and more early nights and it was fine. My symptoms have definitely got worse and the after-run bendiness is not much fun, but I am still running.

 

Due to the amount of time I spend running I have only played a few rounds of golf at Douglas Park this summer. With next year’s schedule looking like occupying even more weekend time, I decided to give up my membership. Very generously the club have taken on board my reasons and agreed to suspend my membership so I can rejoin when the running slows down without penalty.   I went to an event at the golf club on Friday night which involved playing golf in the dark with an illuminated golf ball. Great fun and good to catch up with people I hadn’t seen in over a year. Their concern was touching and I dealt with the questions and comments they asked politely. In reality I found the comments frustrating showing a lack of lack of knowledge of the disease and how easy it is for people to jump to conclusions. I should have given the answers I wanted to:

 

“Are you still working?”   Yes, do I look like I can’t work? I’ve just played a round of golf for f*** sake!!!

 

“Have you had to give up the drink?”  No, I have spent the last two weeks on a bender and feel like boiled shite.

 

“You’re looking well”   What did you expect? Muhammad Ali?

 

“I heard you have given up your membership, that’s a pity”   Because I don’t have time to play golf and run 18 miles a week! Something you could do with trying!

 

Very frustrating. I took it out on my empty coke can.

 

Wednesday 28 October 2009

Things are improving. Karen and I ran 8.4 miles on Saturday very comfortably. It was a tough run, up to the reservoirs near where I live, down into Milngavie and then back uphill again to the ski club. You don’t notice these hills when you drive them. You do when you run them. It was such a good run that in a moment of madness we decided to do another half marathon, Eddie’s Half Marathon, next Sunday in Fort William. How blasé I have become. Just chuck in another wee half. Deciding to raise the bar and attempt two marathons next year has made the half marathon the norm. A distance unthinkable just two years ago and the pinnacle of 2009. It’s amazing how I have shifted my own expectations of myself by picking a fight with Parkinson’s.  The disease has progressed more than I would like in the last two years but so have I. My determination to fight is greater, to hang on to my independence is stronger and to live my life on my terms is keener.

 

I start my course in writing fiction this week. It is an Open University course. Learning from home, Internet forums, online tutorials. What happened to the Residential School? Where’s my weekend of drunken debauchery with like-minded thirty-somethings in a country house in somewhereshire? Gutted. This is my second OU course. The first was a management qualification called The Capable Manager. The Residential School was epic. There was about twenty of us on the course, and five of us were hellbent on having a good time. It was marvellous, we should have been awarded the qualification of The Incapable Drunk. But not anymore. The Internet has put paid to that.

 

I sent out a recruitment email for the Running Team on Sunday and have picked up fifty new runners from all over the world. If you got a copy of the email, please forward it. If you didn’t, and want to see it or email it to someone you know, then it can be read on the MASH page. This is an important initiative, one muppet running to raise awareness of a disease isn’t newsworthy. 100, 200, 300 people running is. It’s the numbers that count. We showed that with the West Highland Way in 2008, with the Great North Run in 2009 and we can do it again in 2010. Please get involved and get those you know involved.  Feel free to email.

 

Saturday 7 November 2009

Another ridiculous venture surfaced this week, thinking about how we can raise our target for the London marathon.  In the pub on Wednesday night I tentatively suggested holding a sporting dinner.  If you have us went to one last Friday and it raised a few thousand pounds for a local charity.  From that rather modest target, over the course of the evening, we moved to a 400 seat dinner with major celebrity speakers and charging upwards of £100 a ticket!

 

How can a handful of ordinary people achieve such a thing?  Amazingly it is starting to come together.  Once you put your mind to it and start asking questions, it is staggering who I know and who my friends know.  We are no more than one or two people away from Ewan McGregor, James McAvoy, the entire world professional snooker circuit, The Edge, Chris Hoy, the boxing fraternity, Sam Torrance, Alistair Forsyth, Rangers and Celtic footballers past and present etc.  Almost everyone I have spoken to is enthusiastic about the project and willing to get involved.  It is truly remarkable.  We hope to set a date around the time of the World Congress in September 2010 and have a venue and speakers booked before the end of this year.  The objective is to raise in excess of £50,000 for the Cure Parkinson’s Trust.  Just hosting a dinner of this magnitude is an ambitious goal and economic climate but if you’re not ambitious you will settle for second best.

 

I ran an impromptu half marathon last weekend in Fort William.  It was called Eddie’s half marathon and it was good fun.  It rained for the entire journey up to Fort William, poured down for the duration of the race and continued raining all the way back to Glasgow.  Karen and I have a rule that we generally only enter races if there is a medal for all finishers.  We felt it was unlikely that we would get a a medal for this race as the entry fee was only £10.  However, just as we were flagging at the 11 to 12 mile point, one of the finishers strolled past, on her way home, sporting the largest metal I’ve ever seen.  It was the size of one of the Starbucks chocolate coins which retail at about £1.40 and had a picture of a bearded geriatric runner.  What a boost!  We finished the last mile or so in jig time and I wore my medal for about three days.

 

I went to Munich last week for a hearing at the European Patent Office.  My right arm is quite shaky at the moment and a thought occurred to me on the flight to Munich.  I was sitting on the left side of the plane as you face forward, so when the air hostess passed me a drink I reached across with my left hand to take it from the tray.  I was wondering how I would manage if I sat on the right side of plane and had to reach across with my right hand to get the drink.  I knew my seat for the return journey was on the right side of the plane and I had two days of collaborating about this, wondering whether I should change my seat.  In the end I didn’t and, as always, it wasn’t even the slightest problem.  Yet more wasted effort worrying about things that don’t matter.

 

I complained a few weeks ago about people jumping to conclusions regarding my illness.  I was guilty of this myself this week.  I went to see my GP after work, it was her last appointment of the day, and she said “whilst you are here I will give you your flu vaccine for the year.”  She looked at her screen and said “I can give you the swine flu vaccine as well”.  I immediately responded “I suppose I get it because I am one of the hard done by, vulnerable groups in society” with more than a hint of annoyance in my voice.

 

She replied “No.  We opened a pack of 10 this morning and there is one left”

 

Sunday 23 November 2010

It has been two weeks since I last blogged and, frankly, not much has happened!

 

Work has been busy, we are going live with a big project to harmonise our operating procedures with the other offices around the country, and I spent a couple of days of Aberdeen visiting clients.

 

On the domestic front, I have started a course in writing fiction with the Open University.  I have an idea for a book but, being a scientist, I am convinced there is a method of writing a book and you just don’t sit down and spill it out on a page.  The course is very entertaining, it opens your eyes to possible material for stories, which previously would have passed over my head.  However it is time-consuming and as Vicky said “do you not have enough on your plate?”.  Perhaps.

 

The black-tie dinner rumbles on, in the last two weeks I have managed to get myself invited to the three different dinners and have gone in with my faculties fully alert, picking up tips.  The date of the dinner will probably be Friday, 1 October 2010 and the venue will be Glasgow.  This is the final night of the World Parkinson Congress and the timing of the dinner (tentatively called the wobbly gobble) will maximise the impact of the dinner on the non-Parkinson’s community.

 

My symptoms have got worse over the last few weeks.  This has been compounded by a very sore right shoulder (my Parkinson’s arm).  I don’t know if the pain is related to Parkinson’s or if it is just coincidental.  Maybe I used the arm in a way I used to use it before it became less mobile and have stretched something.

 

Christmas is coming and Bryn is getting fat.  Need to up the running again!

 

Wednesday 2 December 2010

The black-tie dinner is starting to take shape.  We are going to have it on the Wednesday or Thursday of the World Parkinson Congress which is in Glasgow towards the end of September 2010.  All the way through the wobblywilliams journey my friend Ian has told me I’m thinking too small.  When I first told him our target for the first year was £3000, he said £50,000.  In deference to him I decided to raise it to £10,000 and in the end we raised £43,000.  How much would we have raised if I thought bigger from the start?  At our meeting this week I was pleased to announce that we had a principal sponsor for the dinner who had offered £5000 to have their brand splattered all over the event.  Ian nearly choked on his Rum and Coke.  “If you’re going to sell that for five grand I will give you five grand now” he said with annoyance in his eyes.  We then went on a lengthy debate about what we were trying to achieve with this dinner and the goalposts shifted from my thought of trying to raise £40 to £50k to nearer £200,000.

 

Once you start thinking bigger, bigger things happen.  We have already secured a trip up Kilimanjaro and a tour of the House of Commons with a pair of tickets to Prime Minister’s Questions as auction prizes.  I have spent the last three nights working on a prospectus with a view to raising around £80,000 in sponsorship for the event.  If I hadn’t been diagnosed I would probably have been down the driving range hitting golf balls.  I’m not sure which is more stressful.

 

My shoulder is sore.  Need to see someone about it.  I can’t lift my arm passed shoulder height which makes drinking two glasses of beer at once a problem.

 

The luminous Wobbly running jacket has arrived.  The drunks of Kelvin Way will get advance warning as I pound the pavements lokking like a the Ready Brek boy.

 

 

Sunday 6 December 2010

Every so often I become a malcontent with my wardrobe; or to be precise, the contents of my wardrobe. The wardrobe itself is fine, maybe a trifle dated, it was purchased one weekend in 2004, the weekend when shiny white wardrobes were all the rage. At least in the IKEA in Glasgow. Probably because once assembled the wardrobe looks like it’s wearing a shellsuit.  IKEA was jammed that weekend, people queueing up to buy their wardrobe with a belly full of Swedish meatballs in Buckfast jus.

 

Anyway, back to the contents. My clothes seem to go from pristine to pissed tramp in the blink of an eye. When this happens I have a splurge at the online retailer, Next Directory. Next are fantastic because they cater for the mis-shapen person. In my case they stock many varieties of extra-long leg trousers. The problem is, when it comes to trousers, I am never sure what size I am, I have been a 38 waist for as long as I can remember but everytime the splurge arrives I figure, given the amount of running I do, I must be slimmer. So I order three pairs; a 38″, a 36″, and a 36″ slim fit to give the girls a laugh.   When I try the slim fit trousers on I look like an overloaded ice cream cone; the ice cream leaking over the rim of the cone.

 

The problem is compounded with jeans because of the different cuts; loose fit, boot fit, slim fit, straight leg, low rise, etc.  So when I order a pair of jeans I order one of each in both waist sizes.

 

The arrival of the Next lorry is always greeted with excitement, except by the lorry driver who has a mountain of garments to cart up our driveway.  Then follows a frenzy of ripping of plastic sacks, the pinging of plastic clips across the room, the snapping of plastic clothes hangers.

 

This week’s consignment was primarily a jeans consignment.  Forever being the optimist, the first pair of jeans I slipped on was a slim fit pair boasting a meagre 36 inch waist.  A bit of hopping up and down got the jeans over my thighs.  A bit of repositioning of my externals got them to my waist. A bit of repositioning of my internals got the button done up. And then I made a discovery which will strike fear into every Parkie in the land.

 

The button fly is back.

 

I had forgotten about button flies.  The memory of trying to do them up whilst drunk in a nightclub came back into my conscious mind.  Having Parkinson’s, when it comes to tasks requiring fine motor skills, such as writing and shaving, is tricky.  It is as if most of my body left the nightclub, came home and sobered up, but the hands were left behind.  They permanently live in a state of drunkenness, suffering the effects of too many vodka and Cokes, washed down with a few tequilas.

 

I had a good fumble and didn’t get very far.  I peeled the jeans off, and reached for a more accommodating size, a loose fit pair with a 38 inch waist.  These jeans slipped on and I was soon reaching for the zip.  No zip.  The button fly was present once again.  I hurriedly checked the remaining six pairs of jeans.  All button flies.  A year or two of fumbling lay ahead.

 

A week in, and things aren’t so bad.  As with all aspects of this disease you learn to cope.  When I’m at home I just walk around with my fly undone.  If the doorbell goes, I burst into action and attempt to do at least a couple of buttons up before presenting myself to our visitor.  Similarly, when the phone rings I make an effort to sort myself out, for some reason I think it is inappropriate to answer the phone with my fly undone.  I have no problem doing it naked or talking to someone in the bath, but there seems to be something rather seedy about talking to your mother-in-law with your underwear peeking out of your trousers.

 

Tuesday 15 December 2009

I have been having a discussion with some other Parkies about denial. My view during the discussion was that I didn’t go through a denial stage when I was diagnosed and I didn’t really have an opinion. I didn’t doubt my neurologist’s word, I didn’t seek a second  opinion. I did what I have always done, I got on with finding my way out of the situation. Tried to find the silver lining.

 

But if I am not in denial why do I avoid facing the scarier aspect of Parkinson’s, the future?  I stopped reading Tom’s book, “Shake Well Before Use”, because its crap he was suffering symptoms that I would rather not know about. I have never read “Lucky Man” by Michael J Fox for the same reason. I request that the bloggers to this website do not cover the less savoury aspects of the disease. My stated reasoning is that I have no control over the future and nobody can tell me what the future holds so why worry? Now I am not so sure. If I avoid information about my future then I haven’t accepted the future.   If acceptance is the opposite of denial then I am in denial.

 

I have thought about it a great deal. And I have come to a conclusion which might explain why I am still so upbeat.

 

Accept the facts. Deny the doubts.

 

Denial that you have the condition is futile, you are just delaying the day you have to deal with it. Denial of the possible consequences of the diagnosis, however, is, in my view, overall a good thing.

 

No-one can tell me how the future will pan out. Statistically it’s not looking like a bed of roses but statistics are based on the past not the future. So I accept how I am today and I deal with the difficulties of today. I finally persuaded Vicky to let me put a dartboard up in the kitchen. I am throwing left handed and the surrounding wall’s life improves every day. I have accepted I can’t chuck a dart right handed but refuse to accept there is no point in throwing left handed because one day I will lose that too.  Bollocks to that.  Yes I do have stabs of fear  most days but worrying about something is not the same as accepting it is inevitable.

 

I think the people who struggle most  with this disease are those who refuse to accept they have it, yet accept they are doomed.

 

I am in denial that I am running the London Marathon however. Best not think about it.

 

Thursday 24 December 2009

The last time I was in Ireland for Christmas was three months after I was diagnosed.  It was a break I looked forward to more than any I had taken before. I wanted to get away from the dark clouds that hung over my life in Glasgow. In many ways that Christmas signified the beginning of better times and, in fact, brilliant times.

 

Back in Ireland, two years on, so much has changed. And I anticipated none of it. I expected Christmas 07 to be my last as an able bodied person. I expected to be physically and mentally spent by now.    Two years later, In some regards, I am physically less able and others physically more able and  overall I feel stronger because of this disease.

 

I met with the events management company who are interested in managing the Wobbly black tie dinner. They presented their ideas for the event and I was mesmerised. It will be a stunning evening, full of surprise and magnificence!! All I have to do is sell 36 tables at £1500 a pop!  A mere £150 a head during a recession, a walk in the park!!!  The dinner will be held during the World Parkinson Congress and will be a fantastic awareness raiser for PD.

 

The Wobbly Running Team vests and t-shirts for 2010 have been delivered by Ronhill Sportswear. They are fantastic. We have 75 runners on the team this year and if you want to join. Email me.

 

I went out for a run along the glorious Coastal path in my home town in Ireland on Wednesday morning. My dad’s house sits on a cliff above the path and to access the path. You have to run in to the town. I like to run the entire length of the path, starting at the other side of the train station from my dad’s house. To do this I must run through the station, along one of the platforms. I set off on through the snow and ice, carefully picking my way to avoid slipping. When I got to the station a train was waiting and the ticket seller was standing serving a gentleman. As I ran past he tried to rugby tackle me, assuming I was attempting to board a train without first purchasing a ticket!

Fortunately my brain responded with a quick burst of dopamine and I evaded his flailing arms with the grace of JPR Williams rather than the lumbering manoeuvrability of BD Williams. My sidestep took me closer to the open door of the train where the chubby conductor was slumped against the door frame, watching the scene. He hurriedly heaved himself up to fill the door frame as I jogged passed. I was dressed in tights, running shoes and a luminous jacket! Where would I be going on a train dressed like that? Clearly the staff of Northern Ireland Railways aren’t used to exposure to athletes.

 

Have a very, very Happy Christmas from all the team at WobblyWilliams.com!

 

Thursday 31 December 2009

Time flies.  2009 has rocketed in.  Another remarkable year in my life has passed by.  Looking back on my hopes for 2009, through the Running Team, the Wobbly Walk, the London to Paris bike ride and Pirates for Parkinson’s, over 1000 people got out and raised awareness of Parkinson’s (and over £60,000) because of WobblyWilliams.com.  Truly amazing. The website continues to grow and received over 300,000 hits in 2009.

 

My personal goals included finishing 2009 in the same frame of mind that I finished 2008.  Clearly I am more symptomatic than I would like (no symptoms would be largely preferred) but, presently, I am still in a good place and dealing with the issues that the disease poses with good humour and resilience. I think I am doing pretty well.

 

The personal goals which I failed to achieve included getting my golf handicap back below 20 (I resigned my golf membership having played around five rounds of golf in total) and run a sub-50 minute 10k (I would be lucky to run a 10k less than an hour!)

 

I am more deeply involved with the Parkinson’s advocacy community; the World Parkinson Congress is coming to Glasgow presents a great opportunity for me to raise awareness of the disease in Scotland.  I am also more convinced that the Cure Parkinson’s Trust is the organisation which is most dedicated to curing this disease.  My visit to the Trust at the end of September made me realise what an amazing bunch of people they are.

 

The low lights of my year were, primarily, failing to complete the Great Glen Way and not achieving the awareness raising which I had hoped for the Wobbly Walk in Ireland.

 

The highlight of the year was meeting Liz Ryan.  Liz reads the website and popped out of the woodwork to come on the Irish walk.  Her drive and determination to complete the hike despite having Parkinson’s disease was inspirational.

 

The other high points of the year were the excitement of the dinner at the Bishop of London’s residence, the buzz of the speech I gave to the Parkinson’s disease nurses, the craic of the walk in Ireland, the experience of the Great North Run and  actually enjoying a half marathon in completing the Great Scottish Run with Karen. How on earth do you enjoy a half marathon?

 

2010 will, hopefully, be the year that I complete my first marathon.  It is something I have talked about for many years and, because of Parkinson’s disease, completing a marathon will be ticked off the list in 2010.

 

As last year, my objectives for 2010 are to maintain my positive outlook and fitness.  We will continue to improve the website and do what we are best at – raising awareness of this disease whilst having a good time.

 

Once again, I reflect on the amazing support of my friends and family.  You continually give up your time and expend energy helping me.  I will never be able to thank you enough.

 

Tonight I will eat rib of beef with friends and drink wine from Burgundy.  I will recover tomorrow and then a weekend at the darts starts the new year.  Can life be any better than that?

 

Happy New Year

 

Brynxxx

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