Tri4Joe

On Monday, Joseph enjoyed playing with a big blue balloon at the psychomotricienne’s, whilst I had a bit of a moan about not coping very well with complete strangers asking me what’s wrong with Joseph.  I don’t want to be rude, but there are days when you just want to do your shopping in peace and not be constantly reminded or have to talk about something that saddens you, least of all to a perfect stranger.  I’m still trying to work out what to say or not say.   One word of advice has been to pretend that I don’t speak French - one advantage of being a foreigner here!

Tuesday was physio where Joseph worked really hard (I know how much effort he’s putting in by how much his head trembles) to reach and pick up small toys put at different distances in front of him.  He got very frustrated when he tried to do the same with his left hand. Joseph’s corset seat was also altered to give him more freedom to move his arms, and at the head piece to improve the support to his head position.

Joseph had his creche summer party on Tuesday evening. He had to say goodbye to some of his new found friends as all the 3 years olds will be starting big school in September.  Joseph started going to the local Creche about 3 months ago and he goes there for 2.5 hours once a week.  This is a great boost for him (and me) as he gets to do some ‘normal’ things and spend some time with other children which he loves.  We are very grateful to the creche for taking him on as one of the staff has to give him one to one attention at all times.  Joseph loves going as he beams a smile whenever I take him in the door. He has lots of friends, especially one little girl called Orphely who is very happy sitting next to him and stroking his hand.

Joseph had his eye exercises appointment yesterday morning.  This session was spent trying to get Joseph to keep looking at whatever object was in his hand.  He tends to put so much effort into reaching for a toy that when he finally gets his hand to it, he either doesn’t know what to do with his hand - the toy will either fall out of his hand immediately - or he won’t realise/forgets that there is something in his hand.  I look at other children in awe when they can just pick something up with ease.

This morning we met a geneticist and a psychologist at our local hospital.  I think I’ll let Matt explain the whole genetics thing in another post as it goes over my head a bit.  All I know is that both Matt and I are carriers of the gene that has caused Joseph to have his form of Leukodystrophy.  There is a one in four chance of it happening again if we tried for another child.  As the gene is known, it looks like there are possibilities for various tests, which is a positive.  Neither of the options are straightforward though, so we have a lot to think about.

This afternoon, Joseph had his check up with the pediatritian - his lungs sound fine (which is a relief as he coughs a lot at night due to saliva going down the wrong way), his head circumference has grown half a centimetre in 7 weeks which is good news too as up until today his head was measuring the same since last June.  He is the same weight (11kg/24lb) and the same height (77.5cm) since the end of May.

Matt took the day off yesterday to do his final big brick session.  He did 3hrs on the bike at a good pace, despite lots of cross winds. 14km into his run he called me on the mobile to say that he was going to call it a day as he hadn’t felt recovered yet from his last big training session at the weekend.  I was glad really as I think he’s done all the hard work and it’s time to get lots of rest over the next couple of weeks so that he’s as fresh as he can be for the start line in Zurich.  He’s done so well (I don’t often praise his training techniques!).  I think he’s ready.  I’ll try and make sure that he looks after himself and puts his feet up a bit over the next week or so (the 2 metre long ‘DIY to do list’ comes out first thing on the 14 July!).

I did the second of my two big “brick” sessions on Saturday (remember a “brick” is a training session consisting of biking and then running).  I decided to take the advice of my friend Gary and switch the 106/28 and 106/35 sessions.  So Saturday I did the 106km bike followed by 35km run.  One word summarizes how I felt at the end of this:

Ouch!

In fact, it was ouch ouch after about 14km of running.  Never mind, I did the 35km and that only leaves 7km more to do on the big day which I’ll do on adrenaline alone (ignoring the extra 75km of hilly bike and 3.8km of swimming!).  I’m convinced, barring misfortunate, that I’ll get round now.  It won’t be pretty, but I’ll damn well get round! Here’s the training stats for my sporty friends interested in such matters:

• Bike: average speed 37.5kph at a comfortable HR of 145bpm (my threshold is about 165bpm)

• Run: the first 14km were good at 3:06 marathon pace (about 150bpm), but then I stopped to refill my bottles and my legs seized up!  I struggled for the next 7km, finishing the half-marathon in 1:35.  After that it was a case of “grin and bare it” as my legs were very painful and I could hardly run. The final 14km were at about 4:20 marathon pace.

I felt mentally quite fresh at the end and had plenty of energy in reserve.  My seized up legs were the weakest link this time.  If I’m recovered well enough in time, I’ll do a shorter session on Wednesday and then a much shorter one on Saturday and that will be about it until race day.

What’s wrong with Joseph?

We’re still finding it hard at times to confront reality. It’s very easy to cocoon ourselves and avoid the outside world.  However, sooner or later we have to and this weekend was one of those times.  After the training session on Saturday we went to a friend’s house for a BBQ.  I was quite tired (!) after having trained for most of the day and Colette was probably mentally fatigued after being stuck indoors on her own all day caring for Joseph.

Many of our best friends were at the BBQ which was great (as was the food!), but there were also many strangers who didn’t know us and who were not aware of Joseph’s illness.  In addition, there were also many young children rampaging around the place.  You can imagine the situation:

• Joseph’s parents trying to maintain conversation with friends but secretly observing all the other children - some Joseph’s age - running around, talking, and playing.  Soon we tune out of the conversation and become distracted by our thoughts: why Joseph?  Why us?  How can this happen to a beautiful innocent child?  Why can’t we do anything about it?  Why can no one help?  Logically we know the answers to these questions, but we still can’t avoid the circular thoughts during moments of weakness…
• A complete stranger approaches, noticing the tube going into Joseph’s nose and taped to his cheek.  Curiosity has got the better of him and he asks quite bluntly, “what’s the problem with your baby? Why is there a tube up his nose?”

Suddenly you feel like you’ve been struck at your weakest moment and all your emotions come welling up from inside like an unstoppable wave.  It wasn’t their fault. It was just bad timing, and they weren’t to know that there is something gravely wrong with Joseph.  And, anyway, they probably had the best intentions and wanted to share the problem.  Repeat this ten times a day, in the supermarket, the pharmacy, swimming pool, or just out for a walk even, and suddenly a cocoon is a safe place to be!

This sort of situation is never going to go away, we just have to learn to deal with it, just as Joseph has (he had a great time and made lots of new friends!).

Later this week we’re going to meet the geneticist for a lesson in biology and statistics I think…

Now that we’re into the final three weeks before the “big day out” it’s time to do some last minute training!  As my friend Gary reminded me today, it’s too late now to be training hard and instead I should be backing off a bit, or “tapering” as the pros like to call it.

Yes, but pros are more worried about winning, I’m more worried about finishing in one piece.

My running training hasn’t gone according to plan recently due to one thing and another, so I’m a little nervous that my legs won’t be able to handle the full marathon distance at the end of the Ironman.  So over the next two weeks I have planned to do the following confidence boosting training sessions:

• Wednesday 25th June (yesterday): 105km bike at race pace followed by 21km run
• Saturday 28th June: 105km bike at race pace followed by 28km run
• Wednesday 2nd July: 105km bike at race pace followed by 35km run
• Saturday 5th July: 40km bike at above race pace followed by 10km run at above race pace

I’m building up to the big 105/35 session on Wednesday 2nd July.  After that I will have 1.5 weeks of taper where I’ll reduce the amount (volume) of training considerable, but what little I do will be at higher speed (intensity), hence the shorter more intense session on Saturday 5th July.  In between these bike and run sessions, commonly referred to as “brick” sessions, I plan to do very little other than light recovery rides (30 minutes spinning) or my once per week swim.  These long sessions will build my confidence and give me a good idea about how to pace myself and feed myself.  It’s very easy to go too fast or not eat enough on the bike and only discover the damage you’ve done to yourself when you start running.

So how did the first session go?  To be honest: mixed.  I rode the 105km at a good tempo of 37kph with a very steady heart rate.  The run started well but after several kilometers my stomach started rumbling in a bad way.  The sudden repetitive impact of running after a few hours cramped up on a bike meant that I had to do an emergency detour into the trees.  Despite looking high and low I couldn’t find any double quilted soft leaves in the undergrowth and had to make do with some leaves that would take paint off a wall.  Thank god they weren’t nettles.  After the detour I was able to run much better - and a good thing too - since I was hotly pursued for the final 7km by a cloud of flies.  What fun!  The good news is that I felt very comfortable on the bike and I also felt good at the end of the run.  This was only a half-marathon distance though, and it’s only at about 25km or above when the distance starts to really bite, so the next two sessions will be more interesting.

Thanks… again…

We’ve said thanks before, but I’ll say it again: thanks to everyone who has donated and / or written lovely comments either here or on their own blog.  We’ve been truly humbled and inspired by people’s good nature.

Finally the sun is shining in the Alpes.  Whilst northern Europe (according to my parents) has been basking in summer for the past month or so, we’ve been having to deal with constant rain and cold.

So what better way to celebrate the sun and heat and go and do the “La Mure” cyclosportif just south of Grenoble?  This was the first time that I’ve done this sportif and my friend Ed Nichol (a.k.a. sporting legend) told me that it would suit me as it didn’t have too many long steep climbs.  The problem was that most of the steep climbs were right at the start, so it wasn’t long before I was riding solo!  Then, after 110km, I got a puncture which was bad news since I’d already had two on the way to the start of the event and this was my last spare inner tube (i.e. SOS phone home if the last one goes pop!).  So, realizing that the problem was due to a fault with the wheel itself rather than the usual bits of glass in the tyre, I pumped the tyre up to a very low pressure and rode very slowly and very carefully to the finish.  The good thing about this was that I had plenty of opportunity to look at the amazing scenery in the Trieves region around La Mure.  It is truely stunning and I have to say that this sportif is now my new favorite - even more than the Challenge Dauphine that I did a few weeks back.  At the end of the day I had ridden 205km and I felt every one of them in every bone in my body! (thanks to Guy and Helyn for waiting for me at the end).

The ups and downs of Leukodystrophy

After the cyclosportif Colette and Joseph met me in the car and we all went to a midsummer’s barbeque.  But this was a BBQ like no other - a spit roasted pig!  It was delicious, but the star of the show was the spit roast itself - a Wallace and Grommit style DIY job.  Pure genius.

While we were there Joseph did something that he’d never done before: he repeatedly tried to put his dummy in his mouth.  This was a big step for Joseph since, despite how much we’ve tried in the past, he’s never really understood what hands are for.  Or has he?  Come to think of it, about a year ago over a period of a few weeks, he did try to feed himself with a spoon.  We were excited then, but then just as with many of Joseph’s developmental milestones, the skill simply disappeared as quickly as it had come.

We’ve noticed that this pattern is something that is symptomatic of Leukodystrophy: as fast as the child’s brain is developing, it is also being destroyed.  As soon as a skill is acquired, it is lost again a few weeks later.  When people ask us “is he developing?”, we are unable to give a simple straight answer - in some ways he is, and in some ways he’s not, and in other ways he’s got worse.

It was only a couple of weeks ago that Joseph was much more “tonic”: he was almost able to sit up unassisted; he would try and stand up when held; he even acquired the classic knee reflex (where the knee jolts when tapped with a hard object just below the knee cap) - Joseph’s never had this reflex because the nerve signal was lost somewhere in the round-trip between his knee and his brain.  I was very excited by this and proudly told the neurologist when we saw her soon afterwards.  She gave me a sad “oh dear we have a proud over-optimistic father here” look and repeated the test and, of course, nothing happened: the reflex had gone.

We’re getting used to this now and never really get too excited when Joseph does new things (actually that’s a lie - we do get excited but we know we shouldn’t!).  Our coping strategy is to just live in the present and accept Joseph as he is today.  We don’t know what the future will bring, and we don’t think anyone else does either.

I swear I only wrote “5 weeks to go” yesterday! Where does the time go?

It’s official: not only am I nervous, but the panic attacks have started. I had my first “losing control” dream last night. I get these a lot whenever I’m stressed by something. These dreams often involve my teeth crumbling to pieces and falling out (I have no idea, before you ask). Alternatively, I’ll dream that I’m about to do a cycle race and waiting on the start line and realize that I’ve forgotten my bike, or that my tyres have deflated, or a wheel is missing. Whatever is wrong - I usually wake up with my heart pounding and all knotted up with nervous tension.

So last night’s dream took on a new theme: the Ironman Triathlon. We arrived in Zurich in the middle of the night with only a few hours to spare before the start of the race. I was tired and the race was due to start very soon. I hadn’t even registered or put my kit in the transition zone (you’re supposed to do this the day before).

Now back to reality: this week Joseph has been on superb form. He’s been smiling and squealing all week. Yesterday it was my birthday (34) and we went out for a meal in Albertville. I don’t know what it is about restaurants but Joseph loves telling everyone how happy he is!

On wednesday we all went swimming together in the local pool. Swimming is my least favorite sport of the three. Hamsters and wheels come to mind. It’s just so boring and repetitive, and wet. The Ironman swim distance is 3.8km which equates to 160 lengths! I swim and swim and swim and finally, after what seems an eternity, I reach 10 lengths!

Keeping on the swimming theme, we went to Annecy yesterday so that I could try out the wet suit. In triathlons the swim is usually in open water - the sea, a lake, or a river. This means that competitors have to wear a wetsuit in order to not die of hyperthermia (!). Yesterday was no exception: the Lake at Annecy has not had a chance to be warmed by the sun (it’s been a very cold and wet spring so far), and is full of fresh snow melt. Brrr. This does have one advantage though: ignoring the temperature, it is like swimming in the Caribbean (I’ve never been there but I’ve seen pictures!). The water is crystal clear and blue. If you’re ever down in the French Alpes, I highly recommend going to Annecy; it’s one of our favorite towns.

After the swim I got on my bike and rode 45km around the lake to Albertville for some dinner with Colette and Joseph. The ride was a real “no chainer” - a strong tailwind enabling me to do well over 40kph the whole way with little effort. It’s great to practice the swim-bike transition and I’ve found a potential area for performance improvement: rather than spending hours riding my bike or in the pool, I should try and cut down the time it takes to get out of a wet suit and into my cycle gear. It took me a whopping 30 minutes, during which I amused Colette and Joseph by getting stuck in the wet suit, then hopping about with one leg stuck in it, then slipping over in swan pooh, then cursing the swan pooh, finally finishing off with a nice cycle shoe induced ballet dancing number (swan lake?). Now there’s something to have a “losing control” dream about…

We don’t know where to begin. Thank so much everyone for all the kind comments and words of encouragement, they mean a huge amount to us.

We’ve been bowled over by the number of donations so far. It’s been only a few days since we let friends and family know about this blog and we have already raised about 1000 Euros. Thank you everybody!

So 5 weeks to go before the big day. Wow! I can’t believe how fast it’s going. This weekend I didn’t get any training done due to finally succumbing to the dreaded gastro bug that Colette and Joseph had last week. It was good timing though since the weather here has been cold and miserable and not very motivating anyway. Never mind, all was not lost, since Colette and I spent a romantic evening for two (!) setting up the triathlon bars on my racing bike. I’ll be using these in the triathlon to make me more aerodynamic and, hopefully, go a little bit faster! I’m starting to feel better now, so hopefully full training will resume shortly. Putting the triathlon bars on my bike did suddenly make it all feel very real and it took me ages to get to sleep that night.

Joseph is now fully recovered from his bug and is on great form. It’s funny how, even with all his disabilities, in many ways he’s just like any other child of his age: we’re having great fun trying to get him to eat any vegetables and fruit at the moment! He screams at us as if he’s in agonizing pain and big tears roll down his face. What a drama! It’s amazing how his tears dry up and the agonizing pain subsides within seconds of the first mouthful of yogurt…

Joseph had a double whammy of psychomotricienne and physiotherapy today. Both therapists were really happy with his progress. He was holding his head well when following stimuli and his face was very expressive as he anticipated bubbles landing on him and bursting. His right hand was much more mobile - he opened his hand and clutched things much quicker than usual.  His left hand was less co-operative but in general, Joseph was much more present, interactive and interested in what was going on today.  He was dishing out smiles and charm by the bucketful!

I apologize in advance if this post is a bit long winded and tedious.  It will not involve any pictures of dinosaurs (I think I was high on caffeine the other night!), but instead will bore you silly with lots of facts and figures about my training so far.  Some of our cycling and triathlon related friends might find it interesting however… And who knows, maybe this post will inspire you into doing an Ironman yourself!  Ok, maybe not.

Some people have asked me how much training have I done so far?  I only managed to get this blog up and running a couple of weeks ago, so it may look like I’ve only just started to train!  Fortunately for me, I was a bit more organized on the training front than I was with this blog.

I entered Ironman Switzerland last October and started training properly for it in January.  It’s important to get the timing right.  It’s obvious what will happen if you start too late: you just won’t be fit enough to finish the event.  On the other hand, if you start training too early then it is very possible that you will “burn out” before the day of the big event: you will lose motivation, feel constantly tired, get run down, and maybe even fall ill.

It’s important to take an event like this seriously and train with discipline.  This is a big problem for me as I am possibly the least disciplined person I know! :-)  Normally I get too excited in spring and completely over-cook it and lose interest by May (the burn out I was talking about above!).  For the Ironman I needed to be self-disciplined - so I wrote myself out a training plan based on Joe Friel’s book “The Triathlete’s Training Bible“.  We have used the similarly named Cyclist’s Training Bible by the same author and highly recommend either book to people interested in a no-fuss approach to self-coaching.

Using the guidelines set out in the book I set myself a training scheduled based on the theory of “periodization“: I would train for 3 weeks and then take a single week of rest and recovery (R&R). This 4 week block would then be repeated, with each block building upon the previous (i.e. increasing the quantity), something like this:

• Base 1: 10 hours, 12 hours, 13 hours, 7 hours (R&R)
• Base 2: 11 hours, 13 hours, 14 hours, 7 hours (R&R)
• Base 3: 12 hours, 14 hours, 15 hours, 7 hours (R&R)

Once I got to base 3 I more or less kept the amount of hours the same for subsequent 4 week blocks.  I have only used these weekly hours as a motivation.  Many weeks, due to one thing and another, I would not be able to do the correct number of hours and on some weeks I’d hardly do any, for example most of March and the start of April were wiped out with a bad sinus infection.  The main aim of the plan is to put a “cap” on the number of hours: they act as more of a limit than a target.  It’s all too easy to have a bad week of training due to work or family or sickness only to bounce back the following week and try and make up for it by doing twice as many hours.

Each week follows the same pattern of training:

• Monday: R&R day - short spin on the bike of 30 - 60 minutes
• Tuesday: Short hard run and an easy recovery ride on the bike
• Wednesday: Swim
• Thursday: Short hard bike and an easy recovery run
• Friday: Swim
• Saturday: Long bike
• Sunday: Long run (I do the long run the day after the bike to avoid having sore legs on my long bike ride)

Well that’s the theory.  In reality of course it doesn’t quite work like that!  In particular, I’m not the biggest fan of swimming, so normally I just do the Wednesday swim and skip swimming on the Friday, instead choosing to rest before the weekend’s big sessions and just do a light spin on the bike.

Up until now I estimate that I’ve done the following amount of training:

• Swim: 25 hours (my biggest session so far was 2000m in one go)
• Bike: 170 hours (5000km at an average of approximately 30kph)
• Run: 80 hours

This works out at a total of about 275 hours or about 12 hours per week (bearing in mind that I did very little in March - April due to illness).

So there you have it!  More statistics than you could ever want to know or be interested in.  I almost feel fitter just having written it all down!

We originally had the idea that I should attempt to do an Ironman last October.  After hearing Joseph’s diagnosis and how there was no known cure we were left feeling quite powerless and depressed.  How could we just sit around and do nothing?  When you become a parent you suddenly discover all these primal instincts you never knew you had.  One of the strongest is to protect and care for your children at all costs.  No parent could just sit there and do nothing and we were no exception.  We knew that there are many scientists out there actively researching cures and treatments for Leukodystrophy, so what better way to help Joseph than to try and help support the scientists do their job?  So what should I do to raise money?

It had to be something BIG.

Many of you will know already that neither myself nor Colette are strangers to a spot of exercise.  Colette has taken part in cycle races at the highest level and has represented her country many times.  I don’t quite have a CV to match her (nowhere near in fact!), but I have already done two Ironman distance triathlons and done alot of cycle racing.  I last did an Ironman triathlon in 2000 (Ironman Roth in Germany), since then choosing to focus on my favorite sport which is cycling.  By switching to cycling I’ve not so much as got a toe wet in a pool in 8 years, nor have I done much running, save for running late, as people that know me will regularly point out!

So choosing anything less than an Ironman would feel like cheating somehow.  The Ironman will still be a huge challenge for me.  After 8 years of no swimming you can’t just dive into a pool and swim almost 4km.  Nor can you just stick on a pair of trainers and run a marathon!  In the last 8 years my body has become very much the body of a cyclist: big legs and a wasted upper body. In fact a cyclist is like a modern day Tyrannosaurus Rex except with nicer teeth (check out the silly arms!). Have you ever seen a swimming T. Rex?  I bet they’d need armbands.  Running is even worse - there’s no freewheeling or breaststroking when you run.  In the past 8 years my legs have got strong but the joints and tendons have softened up due to the low impact nature of cycling.  Just running a 5km would leave me crippled for days.

The other thing that has changed since my last Ironman is the amount of free time I have for training.  Training is absolutely key to doing an Ironman.  In fact, I think the race itself is relatively easy compared with the amount of training you have to do in the months beforehand.  You can’t just turn up on the day and expect to get round.  You have to have done lots of time consuming training.  Finding the time and energy to train has been much tougher than it used to be: work is a lot more time consuming nowadays and, most importantly, we are a family of three now rather than two care-free adults!

And on that note I’d better go to bed and get some R&R!

I can’t believe how fast this year is going. I wanted to get this blog up and running a long time ago, but it’s taking me ages despite my alleged skills with computers. I think it’s pretty much ready now, although you wouldn’t have thought so about an hour ago if you heard me shouting at my laptop!

Over the next few posts I’ll quickly give a month by month summary of what I should have already blogged about. But first of all, I’m going to start with this weekend as it was the first real test for my Ironman training: I took part in the Challenge Dauphine cyclo-sportif which is a cycling event which takes place each year in the Vercors mountains just outside of Grenoble. It’s a tough event - especially for gravity challenged riders like me - where competitors must ride 173km over countless cols totaling 3200m (about 10000ft)  of climbing. Ouchy ouch!

It’s a great event and one I would recommend to anyone who is a keen cyclist. The race took me just over 6 hours in the end, and I hit the wall big time with 15-20km to go. When I crossed the line I was very wobbly and had to head straight into the food tent! I was not a pleasant sight, but the copious quantities of food and wine (Wine I hear you say? You have to love the French!) resuscitated me pretty quickly.

I was quite pleased with my performance: I’ll never be great at these events as I am simply not a good climber, but I did feel pretty strong and even managed to beat a few people up some hills. The only downside was my poor food judgment - I needed to take extra food to survive the final 20km. It’s absolutely critical that I get this right on race day, so this is a good warning for me to eat more during the event (note to self: one energy bar per hour is not enough).

I ran for 2 hours and 15 minutes today. This is the furthest I’ve ran so far and I found it haaarrrd!

This is the look Joseph gave me when I limped back in through the door.