There are days when I’m wrecking my head, when I think there’s nothing interesting to write about, when I wonder what you might think about my tired attempts to write down what was important that day.

The later it gets, the more difficult it is for my head not to hit the keyboard. I am writing on an Apple which decides to block the keyboard if I keep my finger down on a any particular keys. I have to open what I was writing in some other window and hope that what I had written will still be there.

Pádraig is doing well and we are planning his birthday for this coming Sunday. Some of his friends are organising a small party at around 3pm

I’m too tired to write any more… See you tomorrow! (Wdith less tiredness:)

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today.

The first day without filming in a while. It feels very pedestrian and low-tech. It’s also a bit calmer, less going from one place to another, less trying to arrange meetings. But I think Pádraig really enjoyed the hustle and bustle in the house with loads of things going on. There will be a few days to ‘recover’ before his birthday on Sunday when we hope to welcome a few friends in the afternoon to celebrate his first birthday at home since the accident.

It’s the first day in a while that I’m feeling a bit less tired. Though still tired:)

Right, we really need your help to promote and attend the film and the launch on 18 June. You already know that and are probably sick and tired to hear me repeating myself ad nauseum. BUT – this is really really important.

Please: tell everybody in your family and all of your friends about the two events on 18 June and get your tickets (free, donation optional) on the corresponding Eventbrite page NOW.

• Film “Would you rather be dead” here: bit.ly/AnSaolFilm
• Launch of the An Saol Project here: bit.ly/AnSaolProject

There will be guests from at least three international neuro rehabilitation centres as well as Prof. Andreas Bender coming over from abroad for the launch. There will be representatives from ABI Ireland and Headway at the events. We need to show them, as well as the attending media and politicians, that we are a force to be counted on. Do what you can to get commitments from your friends and family that they will definitely attend. Get them to book their tickets. We need to fill the place to the top.

To them it is crystal clear that what is going on is a national scandal.

As you will remember, even a senior rehab consultant just a few months ago said that the only way for this scandal to end would be families “agitating”.

The 18th of June will be “An Saol” day when we will begin this process of agitation.

Please join us and be part of it: Help us to raise the awareness in Ireland that the needs of persons who survived a #sABI and their families are almost completely ignored by the health system. Help us to launch the An Saol Project that will demonstrate how to deliver long-term neurological rehabilitation to survivors of #sABI. Join international researchers, experts, practitioners and those affected on 18 June.

Note that date in your diary right now and get your (free) tickets. Don’t wait. Do it now🙂

This afternoon I went upstairs to have a 30 minutes quick nap. More than two hours later, someone woke me up to do something I just now can’t remember. You’d thought that this helped. I’d thought that this helped. But I’m still so tired that I can hardly keep my eyes open.

Since we came back, I wanted to put down some thoughts on the stay in Pforzheim, on the journey to Lourdes. I wanted to say how it was working with our new friend from ‘Hollywood’ interviewing people about their experience with and opinions about severe Acquired Brain Injury: a representative from the Neurological Alliance of Ireland, the CEO of Headway, the founders and owners of the therapy centre in Pforzheim, a consultant, a physio, and a team leader in Burgau, parents of four injured young people. Unfortunately, no-one from the NRH was available, nor from ABI Ireland – though ABI Ireland have said that fully support the An Saol Project and will be there for the movie an the launch on 18 June, and the NRH are still considering what they can do.

Here is something that you must do NOW (if you haven’t done so yet):

• Register for the movie and register for the launch right NOW (should you not have done so already)
• Ask your parents and children and friends to register today. Tomorrow, check with them whether they actually did register.

Remember – this launch will have to be our biggest show of strength and, at the same time, outrage about the way persons with a severe acquired brain injury are treated. We have to show our strength at the launch and our ability to deliver the three year pilot project demonstrating what neurological rehabilitation can achieve for #sABI survivors.

Today was the last day of many days of recording people who had to say something about how persons with a severe brain injury are being looked after and how they should be looked after. We interviewed those directly affected by sABI, families, those working in the voluntary sector, and those working in and researching neurological rehabilitation.

I have been completely exhausted by the whole exercise and am wondering how my (now:) friend filming the interviews is doing. My guess is that he is even more exhausted because for him, as all this is new to him: the topics, the people, the city, the institution and organisations, all of it.

Tomorrow afternoon the ‘film director from Hollywood’ (he doesn’t like me to introduce him like this) will be heading home. Imagine, this is the cousin of a friend who has just spent the best part of two weeks plus a long and costly flight from LA to Germany and Dublin in order to film material he will be using to produce (long and) short video clips to promote proper neuro rehabilitation for persons with a severe Acquired Brain Injury (#sABI) by An Saol, to fundraise for An Saol, and to promote the launch of the An Saol  Project. I, we, owe him an über-huge Thank you! Besos y abrazos.

Having just managed to get up this morning after a fantastic night out with KILA and Kaya in Vicar Street last night, Pádraig headed to his old school to say ‘thank you’ to the teachers, the students and the staff for their support, their help, their empathy and solidarity following his accident.

For me, it was one of the most moving and inspiring visits in a long time.

How would I have like to have gone to such a school!

Another night of complete exhaustion. Visit to and interview with Headway. Driving over to Pádraig’s former school. An Saol Board Meeting in the evening. I can’t keep my eye open and my hands freeze on the keyboard.

One of these days I will have slept enough to write something that makes a bit of sense.

Tonight is the night of “a picture says more than 100,000 words”.

Met someone working in the NRH who recognised Pádraig in Vicar Street. She came over to say ‘hello’ and ‘drop by to have a coffee one day’. How nice!

Good night!

Pádraig started to use his fancy new bed which had finally arrived a few days ago after a waiting time of untold length. It is really an incredible piece of ‘equipment’: so easy to use and so beneficial. Pádraig seems to like it too!

Today he stood in it having a drink of orange juice… holding his head up high without any support (except at the back). Gravity would have pushed it to the front but he held it up, for the first time! And what a first it was!

While he was standing he had an orange juice. Once I had put the cup in his hands, he moved it across the table and towards his chest, trying really hard to lift it up to his mouth. This last part didn’t work yet – but there is no doubt that it will some time soon.

Our friend working on An Saol the movie

My fancy new cycling “shorts”

A brilliant First: Pádraig holding his head up high!

Never thought this would fit:)

Earlier in the day, we went to see Ken, co-owner of the bike store Little Sports in Fairview who, together with Marin Cycles, are sponsoring the cycle to Cape Cod later in the month and a second cycle from Hollywood to Napa in October. Our camera man interviewed the owner of the shop who presented me with really ‘cool’ professional (and very tight fitting:) cycling shorts and ‘shirt’. There was a bit of a discussion whether this was going to fit me and, to be honest, I kept the shorts for a special fitting session:)

Thursday evening is a quiet time at Dublin airport. Hardly anyone to be seen when we left the plane and made our way to passport control. They just looked at us and asked “Everyone Irish?” I said “yes, just one is German” to which he answered “Not to worry, there’s always one” – and winked us through.

When we arrived home we saw that, finally, the standing bed.had arrived. I couldn’t belied my eyes. The therapist who checked the bed out this morning said to Pádraig that he was a trailblazer and that this bed was the first of many standing beds to come – and she was really really excited about the thought. This will really change a lot of people’s life. And she meant it.

Getting out of the train wasn’t easy this morning. Actually, getting all our stuff together to get out of the train was even more difficult. I was convinced that our bags, especially the small ones, had multiplied over night. There were just no more hooks anywhere to hang them, no more fingers to carry them.

Too many bags…

Arrival in Düsseldorf

The regional train to the Airport

On Pádraig’s first public transport trip

Yesterday evening was one of the nicest evenings for Pádraig, I think, when a couple of the young helpers spend a few hours with him talking and helping him with his food. Not everybody is religious, never mind up for a pilgrimage to Lourdes on a train with sick and injured people — they were and they really made such a difference not just to the trip but to how I see what’s going on in the world. Like Pádraig’s friends back home, these young people really make me feel good about things to come, because they are the future and they are going to make sure that it’s going to be good.

When we were standing on the platform and we said good-bye to all the people on the train, old and new friends, we really felt that this week was now over. It had been a very special week, pretty intense in many ways, loads of new unexpected and pleasant experiences, good conversations, tons of forward-looking positive thoughts.  This includes our really unexpected bath in Lourdes with one of our good friends, as well as the unexpected turning up of our broken bag for the third time (because some caring person had thought that we had ‘left it behind’ unintentionally – when we had tried to throw it out:).

We also realised that not only Pforzheim central rail station, but also its Dusseldorf sister station, don’t have trolleys anymore. We just about managed to carry everything from the platform where we had arrived to the platform from where the regional train was leaving for the airport. At the airport, we got a good day rate in a hotel and are just about getting ready to head for the check-in after a good rest.

There is a thoroughness and sense of duty here that doesn’t stop to amaze me. The ‘helpers’ had breakfast at 4 am this morning to allow them to have an early service at the Grotto before waking up those requiring their help at 5 am to have breakfast at 6.30 am followed by mass, shipping of all material and bags to the train, and making sure that all travellers would be on the train by 10:15 am. To everybody else, this would have been a full day’s work. For them it was just the start of the long journey back home.

A last look at the snow-capped Pyrenees

The Grotto this morning

The Basilica seen from the top floor of the Accueil

A last look back

Our ‘slow train’ at Lourdes’ TGV stop

Night on the train

Tonight, we’re on the train passing through France and Switzerland back to Germany, via Freiburg up along the Rhine Valley towards Cologne and Düsseldorf where we will catch a flight back home to Dublin tomorrow evening.

This time tomorrow night, we’ll be in Dublin after more than five weeks in Pforzheim and Lourdes. It’ll be different.