Tri4Joe
Fighting against leukodystrophy

Well it’s a week today since the Ironman.  It already seems like an age ago.  I’ve recovered surprisingly quickly except for my back which is still quite sore (although I made it worse by riding my bike to and from work on Thursday!  Silly impatient me!).

Joseph has been on egg-shells all week – we think the trip unsettled him quite a bit and has made him very tired and a bit irritable.  Even so, he still has time for lots of very infectious smiles.  What’s more Daddy and Joseph got to spend some quality time together today watching the Tour de France on television (actually Joseph fell asleep in my arms so I couldn’t do anything constructive!).

Over the next couple of weeks we’ll be collecting up all of the money that we’ve raised so far and sending it off to the ELA and the Myelin Project UK.  When we have a grand total we’ll post it on the blog.  We’re amazed at how successful Tri4Joe has been: not just the money that has been raised, but also – and perhaps more importantly – how much awareness of Leukodystrophy has been spread.  And this brings us on to the question: what next?

We’ve had huge amounts of positive feedback on the blog both directly through comments, but also indirectly via friends and family saying how people they know like it and, in some cases, have even become addicted!  Regardless of whether these rumors are true or not, this has got to be a Good Thing™, since it means that people are learning of the existence of Leukodystrophy and may even consider supporting the ELA or Myelin Project UK or other related charities in their own charity fundraising events.

In fact, several people have already started to organize their own fundraising events on behalf of the ELA or the Myelin Project.  We’ve already had a tea and cake afternoon and a charity ride around County Louth in Ireland organized by the Cuchulainn Cycling Club, and it looks like there’s going to be more.  For example:

• On August 3rd the SEEDS cycling club in association with the White Oak Triathlon Club are organizing a charity ride, aptly named Ride4Joe.  Colette and I used to be members of the White Oak Triathlon Club 8 years ago and we still have very many happy and enduring memories (in fact Colette and I first met on a club bike ride!)
• In September, our friend Mark Kennedy who lives in County Cork, Ireland, is planning to ride his bike from his local community center to the bottom of Ireland’s highest mountain, Carrauntoohil.  From there, he is then planning to run up and down it, before riding his bike back home (where home is about 50km away).  This is no mean feat considering that Mark had a back operation last year.  And I thought an Ironman was a challenge!
• On the 25th October, our friends Alex Tyrrell and Steve Blackmore are planning to participate in the Beachy Head Marathon in the UK.  This is a very tough cross country marathon that climbs every hill on the south coast.  They are going to publicize their challenge within British Telecom for whom they both work (British Telecom is quite a big company so I’d imagine this will gain quite an audience).

We’ll keep you updated on the progress of these events on this blog.  Meanwhile, if you have any fundraising ideas of your own then feel free to post a comment and let us know what you’re planning to do.

In the meantime, Colette, Joseph, and I are going to spend some quality time together over the next couple of summer months and make up for all the hours spent apart recently as a result of triathlon training…

One thing’s for sure: we’ll keep this blog going.

After spending a day looking around Zurich we came home yesterday.  I’ve spent the morning reading the last two posts that Colette wrote and all the very kind comments and emails that we’ve received.  Thank you everyone for all your support.

Joseph coped well with the journey back but is feeling a bit tired and grumpy today.  Colette has had to take him out for an emergency “chill-out” walk in his push-chair.  Hopefully the fresh mountain air will do its trick and he’ll finally surrender to his sleepiness and wake up afterwards in a better mood.

Ironman Switzerland – the inside story

When I signed up for the Ironman last October I had in mind two objectives: the most important one was the altruistic objective of raising money for charities relating to leukodystrophy.  The second, personal objective, was to improve on my previous times and break the magic 10 hour barrier.  I’ve always been a competitive person, and I just couldn’t resist the temptation to get a personal best (PB).

However, personal bests are just that: personal.  Within the last few of months it became very clear to me that the Tri4Joe thing had become much bigger and better than anything I had imagined six months ago.  It was no longer a question of just raising maybe 1000 Euros and achieving a PB in the process.  I had to finish and that meant playing it safe and not taking any risks in order to get a good time.

Still, given the performances I had been producing in training I still figured that, given the right conditions on race day, I was capable of comfortably breaking 10 hours.

But it wasn’t to be.  The conditions, as you may have seen from Colette’s previous two posts, were far from ideal!  We woke up at 4:00am on Sunday morning to the sound of torrential rain and cold weather.  This meant that there would be a much greater risk of getting things wrong: from an increased risk of crashing on the bike, or hypothermia triggered by hitting “the wall” on the bike, or muscle cramps and tightness resulting from the cold.

Swim

The swim is my weakest discipline and it fully lived up to my expectations!  It comprised of two laps of a circuit where competitors had to come out of the water at about half distance, run across an island, and then jump back into the water to complete the second lap.

I started the race feeling surprisingly calm and relaxed.  I would even go as far to say that I felt serene.  It was a strange sensation.  I’m not a superstitious person but I felt that I was going to be protected by all the positive energy that had come from everyone’s comments and encouragement.  No matter what – I’d get to the end.

The first lap was quite uneventful with the usual amount of being kicked, punched, and half drowned that goes with any swim that involves 2500 people all trying to swim the shortest distance between two points. At the end of the first lap, while trying to climb out of the lake onto the island, I think I trod on some submerged broken glass as I felt a sharp stinging pain in my right foot.  This bugged me for the rest of the swim and I dreaded how it would effect my cycling and, even worse, my running.

Finally the end of the swim came (1 hour, 11 minutes) and I jogged into the transition zone feeling fresh and ready to get on with my favorite discipline: the bike.

Bike

I was very lucky in that the cuts on my foot were obviously not in a place which would prevent me from cycling – they didn’t seem to effect my biking nor, later on, my running either.

The conditions for the bike were abysmal – about 12-15C temperature and heavy rain.  My worry was that if I did the same pace that I’d been doing in training that I’d end up with very stiff and cold legs and maybe risk injuring myself before or during the run.  In addition, if I hit the wall on the bike which is a pretty easy thing to do if you go too fast or don’t eat enough then the combination of low energy and cold wet weather would risk a race ending hypothermia.

I decided therefore to knock about 2kph off my usual bike speed and take it steady making sure that I ate loads on the way round.  The bike went very well – despite holding back – and I averaged just over 34kph at a heart rate of around 135-140 and overtook about 500 competitors.  I don’t recall seeing anyone overtake me at all during the 5 hours 20 minutes!

One thing that amused me loads as I was riding was the number of competitors on 6000+ Euro time-trial bikes with 2000 Euro aerodynamic wheels, and aerodynamic crash helmets, yet who were wearing rain jackets that ballooned to the size of a Zeppelin airship as they were riding.

During the last 20km I started to get some warning signs that life was not going to be straightforward on the run.  My lower back started to stiffen up and I struggled to stay aerodynamic on my bike.

Bike to Run

Disaster!  I bent over to put on some dry socks and my running shoes and in the process pulled a muscle in my lower back.  I guess that it was the same muscle that was stiffening up on the bike and was probably partly caused by the cold wet weather.

Run

I was hardly able to run.  Every impact from each step caused a sharp pain in my back and so I was forced to jog very slowly with short light steps.  After 12km I realized that the pain was not getting any worse and was, if anything, slightly lessening (or I was getting used to it?).  I continued on at my slow but consistent pace and watched dismayed as very many people overtook me.  In fact, I don’t think I passed anyone in the first 30km.

It was clear though that, while I was suffering, there were many others who were suffering much more.  Many were either sick or ill having misjudged their energy intake in the cold conditions, shaking with hypothermia and stopping as a result, or simply cramping up and unable to continue.

Then at around 30-35km into the run the pain in my back gradually subsided as if something unknotted itself.  I was able to run properly again, but by now my legs were starting to get tired and stiff and so any potential gains were minimal.

In the end I finished the marathon in a time of just over 4 hours, each 10km taking me about 1 hour – my worst ever marathon time by a long way, but nonetheless not disappointed as I had achieved what I set out to do: get to the finish. The time (10 hours 46 minutes) didn’t matter.

An Ironman is a big challenge and the hardest part of it is the training which requires a huge commitment not just from the athlete, but more importantly from their family.  Colette has been incredible throughout the past 6 months as anyone who knows her will testify.  It sounds cliche, but something like this really is a team effort.

It was an amazing and emotional feeling to run down the finish straight with Joseph in my arms and Colette at my side.

Afterwards

I’m sitting here watching Joseph trying desperately to play his xylophone.  It’s hard not to feel poignant now that the Ironman challenge is finished, but the day to day challenges for Joseph and other children and families living with leukodystrophy continue without a finish in sight.

Mission complete.  Matt did himself and us proud today when he crossed that finish line at around 5.30pm this evening.  His aim was to complete and finish the 3.8km swim, 180km bike and 42km run as a thank you to everyone who has supported and donated to tri4joe over the past few weeks.  It was quite an emotional day for Matt and I, especially when I handed Joseph over to his Daddy so that they could finish together.

Matt’s finishing time was 10 hrs 46 mins (for a full breakdown of his splits, if anyone is interested, click here.  Matt’s race number was 2323). The weather as I said in my earlier post was dismal up until well into the marathon – I don’t think this helped anyone and there were lots of cold looking athletes out there today.

Matt is now tucked up in bed after a short leg rub to try and keep rigor mortis to a minimum.  Joey is snoring – it has been a long day for him too.  When Matt has a bit more energy I’ll get him to give you the low down on how the swim, bike and run went in a bit more detail.

Thanks again for all your support.

We didn’t need an alarm clock this morning as Joseph made sure we were up at 4am!  The torrential rain forced us to change from plan A to plan B – get the car instead of walking to the start.  There is nowhere to park within 20 minutes walk of the race start, so I drove and dropped Matt off at the race start and went in search of a parking spot.

En route to getting back to Matt, I get a call on the mobile, with a worrying: “Are you far from the car?….I forgot my goggles”.   There’s always something eh?  We decided it was best that Matt tried to buy a new pair at the race expo bit as I couldn’t risk going all the way back to the hotel and missing him for the start.

Joseph and I kissed Matt good luck just before he got into the water at 7am.  In between dripping umbrellas, we managed to get a glimpse of him coming out of the swim at about 8am and into the bike transition and we also spotted him starting on the bike.  Joseph and I then came back here to the hotel to get some breakfast and change our clothes.  No amount of rain kit could keep out the rain!  We’ll head back shortly to hopefully catch sight of him coming in off the bike – all things going well.

Thanks for all your good luck and well wishes – Matt should get around on telepathic support alone!  I’ll get back later with the final update.

We made it to Zurich on Thursday – it was quite a long trip as we kept having to stop for Joseph – he didn’t get on too well with the heat and being cramped up for so long.  We left at 1.30pm and got here at about 9pm.  Yesterday, Matt registered and had his race briefing for the Ironman. 

Around 2,500 people are registered to race here tomorrow.  We get up at 4.30am tomorrow morning and race start is at 7.00am.  Matt’s just about to go out for a bike spin now as the torrential rain from this morning has stopped and it’s starting to clear up a bit.

He seems pretty calm which is good.  There’ll be plenty of time for nerves in the morning!

Joseph has been a super star and is sleeping OK, considering the 34 degree heat we’ve had for the past couple of nights.  I’ll try and get back to the hotel tomorrow morning when Matt gets out on the bike after the swim, so that I can give you a quick update on how his start went.

Donations update

If anyone was to tell me a few months ago that I should try and raise 20,000 Euros I would have laughed at them.  Not in my wildest dreams could I have ever thought it possible.  I thought maybe 2,000 Euros.  Colette was more optimistic and told me to shoot for 10,000 Euros.  But I don’t believe in targets for this sort of thing – how can you set a target for something you have no control over?  It all depends on peoples’ generosity.

Well people: I apologize.  I completely underestimated how much good there is in the world.  It sounds a bit cliché but it’s true.

We’re not quite at 20,000 Euros yet, but I believe we hit 15,000 Euros today and the total is climbing fast.  20,000 Euros no longer seems like a silly idea.  So far we have raised at least 4,000GBP for the Myelin Project UK, and the rest is in Euros and destined for the ELA (before all my fellow British compatriots out there get competitive, the Euro has an unfair advantage in that there is more than one country involved!).

Joseph’s progress this week…

Joseph made some very noticeable improvements this week.  Physically he’s not at his best, but he seems to be going through a mental phase at the moment.  He’s making new sounds and has suddenly got a very cheeky sense of humor.  He currently finds his mother’s eating behavior highly amusing and laughs like we’ve never heard him laugh before, so much so that we couldn’t help but laugh with him.  I tried to get some of it on video (Joseph laughing, not Colette eating!), but he’s also turned into a bit of a poser and stops everything as soon as he sees a camera and just smiles!

Some of the progress is not just Joseph’s progress but also his own parents’.  This week Colette bought Joseph a bunch of musical instruments: maracas, a tambourine, and a xylophone.  Last night I thought I’d try and see if he would try and play the xylophone, thinking that all children like making a noise and perhaps Joseph would too and that this would encourage him to try and hold the xylophone stick and stimulate his hand-eye coordination.  It worked!  We couldn’t believe it.  Obviously this is not a skill he’s just acquired – he must have had it all along, but we just didn’t know.  It seems obvious really, but it’s very easy as parents of a disabled child to get trapped in your own ideas of what the child can and can’t do.  Colette’s probably much better than me since she spends much more time with Joseph watching the professionals stimulate him.

Tomorrow we go to Zurich

So it’s midnight here and I’m typing a blog post.  We haven’t started packing yet, so I guess we won’t be leaving early tomorrow.  We have a 5 hour drive ahead of us so it’s not too bad.  I’m pretty excited and nervous at the same time.  While we’re in Zurich we’ll make every effort to monitor and update the blog.

Mon ami, Didier, a bien traduit le page “Our Story” en française.  Merci Didier!  Ça aura été difficile pour moi à faire avec mon mauvais français!

I thought I’d better tell everyone that we’ve had a couple of friends of ours thinking that they had successfully donated money through the Paypal donation page, when in fact it looks like something went wrong somewhere.

If you tried to donate but you are not sure if it worked or not then check that all of the following have occurred:

• Once Paypal has successfully processed your donation, you will be automatically sent to a page like this.
• Paypal will send you an email containing a receipt which will be sent to you within an hour.
• We are notified of each donation as they arrive and we make an effort to personally respond to each and every person who makes a donation within 48 hours.

If any of the above did not occur then something may have gone wrong and your donation was not processed.  If this is the case then feel free to contact us directly at:and we will check our records.

Please note that between Thursday 10 July and Wednesday 16th July we may be slow to respond to everyone because we will be in Zurich, Switzerland for the Ironman competition on Sunday July 13th.  I believe that our hotel does have internet access.

Once again, we thank you all for your continued support, generosity, and lovely words of encouragement.  We read everyone of them and they all mean a lot to us.

It’s funny how the mind distorts time in ways that are never favorable.  The weather was terrible today and so I was forced to do a short training session on the turbo-trainer (cycling’s equivalent of a torture chamber).  During one of the 8 minute intervals I realized that intervals like this seem to take forever – ever single second seems to last a minute.  Conversely, when I look back over the year, I realize now that we’re already in the final week before the Ironman.  I can’t believe how quick the 6 and a bit months have gone.  It seems like less than a single 8 minute interval ago when I was out running in the snow during January.

While doing the training session, and realizing how time flies except on a turbo-trainer, it hit me…

In general, the Tri4Joe experience has and still will be a very positive one.  Not only has it raised a good deal of money for the Myelin Project UK and the ELA, but also, and perhaps more importantly, it has raised awareness of this terrible group of illnesses.

But there has been a negative side to it as well.  During the 6 months I’ve had to devote a lot of time to training for the Ironman.  Ok – I can’t complain – it was my choice!   With a full time job as well this has meant that I’ve had to sacrifice a lot of family time – and in particular time with Joseph.

We don’t know what Joseph’s prognosis is: there are simply not enough known cases of his particular type of Leukodystrophy to provide any meaningful predictions.  Having seen the geneticist on Thursday we do now know that of the four genes that can cause Aicardi-Goutieres Syndrome (AGS), Joseph has the most common (remember “common” is a relative term here – we’re talking 30 cases out of 50!), and seemingly the mildest (again – a relative term).  Children have been known to live up to 17 years or so with this sub-type and retain very simple skills.  However, on the other hand, this particular type of AGS is usually late onset and, from what we’ve read, symptoms appear when the child is about a year old.  Usually, the younger the symptoms appear, the more severe it is, and Joseph’s symptoms appeared in his first couple of months.  In fact, in hindsight, I think they were already there when he was in the womb: he never moved or kicked like other babies.

So 6 months is a short time in my life, but it may be a long time in Joseph’s life, and I’m going to cherish every moment with him once the Ironman has finished.

It’s strange to think that as I’m typing here there’s a whole hive of activity going on in my home town in Fermoy.  My wonderful Aunty Joan and cousin Marian have organised and are in the middle of hosting what sounds like a very busy coffee afternoon at the Resource Centre in Fermoy to help us raise more money.  I received a text from Aunty Joan earlier and I would love to have seen her kitchen this morning as it sounded like there was a mountain of cakes made by family and friends, along with prizes for a raffle and various other ‘bring and buy’ bits and pieces.  We’re sorry that we can’t be there to witness and experience all of this and to thank everyone who is contributing in their own way.  Hopefully, I’ll have a photo emailed to me later so that I can show you what it all looked like.   I’m certainly thinking of home right now and feeling very moved by everyone’s support. Thank you.

Colette XX

Quick update to say A HUGE THANK YOU to everyone who contributed by making cakes and/or coming along to the coffee/cake afternoon on Saturday (5 July).  A staggeringly impressive 2,000 euros was made in 3 hours!  WOW! A special thanks again to Aunty Joan and Marian, who’s idea it was to hold the sale and to the Mothers Group who hosted and helped them make the whole thing happen.  We are so moved by everyone’s wonderful community spirit and support.