They are a bunch of lads from Swords who went to the Christian Brothers (except one of them) and started to form a band. They dreamt of playing the Point. Tonight they did. And they made sure Pádraig and his friends were looked after well. Really well.

Had I not been there today, I would not have believed it. The call. The text. The drive up to the Point, well the “Three Arena”, or the “Two Point Three” (for the insiders:). We were to go to the Rivergate on the North Quay.

If you’re ever feeling lonely
If you’re ever feeling down
You should know you’re not the only one ‘cause I feel it with you now
When the world is on your shoulders and you’re falling to your knees
Oh please
You know love will set you free

There were no uniforms. You just dress in black. It’ll do.

The gate opened, we were whisked in and parked beside cars that looked like they were owned and driven by stars. Turned out, the lad passing us on his scooter was a Kodaliner.

The doors were all opened widely and in we went into the empty Three Arena.

And then the band came out to say ‘hello’ to Pádraig.

When does stuff like this happen? – Love will set you free.

Then the sound check started.

It felt like a private concert by one of Ireland’s biggest bands, friends of Pádraig, in Ireland’s largest music venue.

The band and the promoter said it was the least they could do, Kodaline would always look after Pádraig and MCD Promotions said keep in touch, whatever we can do.

It was a very long day for Pádraig. And some incredible experience. The first of many concerts to come. One that neither Pádraig nor any of us will ever forget.

The energy, the love, the generosity, the believe in your dreams. There is nothing that will stop Pádraig living his life – it’s just too precious and too valuable, and fun!

Thank you to the band, MCD Promotions, and Pádraig’s friends who helped to make this happen and spent a fantastic night with him at his first concert!

Pádraig is home home tonight.

Having him here with us, being able to look after him, enjoying life together, is the happiest feeling I could imagine. There is no stress, no pressure, no fear.

And, just in case you were wondering: yes, MCD confirmed that he’ll be welcome to attend the soundcheck tomorrow afternoon, before the Kodaline concert. Isn’t that super cool?

Tonight, we also got a visit from Pádraig’s GP. She accompanied Pádraig from the day of his accident on his journey even when she was far away in Dublin, and Pádraig on Cape Cod or in Germany. It was amazing to see how well and immediately she connected to Pádraig, and he to her.

Also heard more on the progress of some of Pádraig’s equipment. Things are most definitely moving.

Life and what happens in it is always a matter of perspective. We look at the same world but we see it in completely different ways. Isn’t that amazing? Even more amazing is that most of the time, most of us don’t think about it – we just find it so strange that other people don’t get it, instead of trying to understand how their perspective changes their perception of the world. And ours ours.

The call came in today: the promoters (MCD) and the band will make sure that Pádraig will have the time of his life at the Kodaline concert on Saturday. Wow! How cool is that? Sound check! Concert! An evening of first class music! Brilliant!

Another first today. I received an email from an occasional reader who felt that I had misunderstood and subsequently misrepresented the situation about Pádraig’s home care package and asked me to correct this.

I had said that the application had not even been submitted to the corresponding HSE office – referring to the office that would take the final decision. While this is true, what I had not mentioned was the enormous and tireless effort by dozens of people who put an enormous amount of work and time into all the supporting paperwork for this application, the dozens of people who met us over the past 10+ weeks assessing Pádraig and preparing the paperwork. I also did not mention that, of course, most details of the application have been agreed by the NRH and our local HSE Home Care Manager.

So, it’s far more involved and complicated then I had described it: a home care package application has indeed been made to the Home Care Manager of our local HSE Area (this is not the person who will take the final decision). After this manager has approved it all, it will then be advanced to the Intensive Homecare Package Office for final approval by them. This is a lengthy process and involves a lot of checking on prices etc.

So, in case I made it sound as if no one had bothered to make the right application at all – that was never my intention. The process is well in hand, and we’re kept well informed of where it is at any given time.

It was a bit as if Santa had arrived early – or Nikolaus late: Pádraig got a brand new food mixer (haven’t unpacked and checked this yet for suitability) and a great invention called WendyLett. They are like satin-type bed covers and sheets that will allow us to position Pádraig in bed with much more ease. It’s also made of a material that looks great and protects the skin from sores much more effectively than ordinary sheets.

Pádraig also found a great new use for the buttons: I never knew when Pádraig was ready for the next spoon during eating time. Now, we are practising to push the button when he is ready. Not perfect yet, but it kinda works.

This morning, I looked up Tom Clonan and his campaign to get better services for home care. Tom is a well-know security analyst, journalist and campaigner in Ireland. He had been on the radio recently and left a really good impression. Then I thought: what if Tom was to be interested in getting involved in an An Saol meeting… So I emailed him. Then I thought about possible topics for this event, and here is what I could come up with, not necessarily in this order and not exclusively these:

• Treatment abroad: the practicalities of the EU’s Cross Border Directive
• Question the professionals: recurring topics in the acute hospital and in rehab
• Take charge: Legal issues around severe head injury
• Best Practice: Facilitating recovery long-term
• Reality Bites: The politics and practice of long-term care in Ireland
• Round table: The Family Perspective – followed by open mic

We would need a good venue and a really good MC, at least for the round table and open discussion.

What do you think?

I had heard that word before, resilience, but when I heard it mentioned today again I looked it up. It’s a great word to describe what defines a Dreamboater: you believe in yourself and your resources, you never give up, you’ll never allow anybody to drag you down, you take charge and show the way – even after a catastrophic accident.

Imagine.

Pat and I were in Salamanca in 1980, getting to know each other (at least that’s what I thought:), when we heard that John Lennon had been shot. None of us could believe it. I thought: if this peace-loving man managed to annoy someone so badly that he decided to shoot him, my chances of a long life weren’t great. What I didn’t understand then was that nobody would really care enough about what I’d be doing to ever bother killing me.

There are times when I wonder how I could change that (=making people really care).

Today, Pádraig is 10 weeks in the NRH for assessment that was required by the HSE to approve a care package.

As a German, I’m really concerned that the application for Pádraig’s home care package, including the care proposed and his equipment, has still not even been submitted to the corresponding HSE office – never mind been approved.

As an Irish person, I’m really delighted that his “PAs”, his  “personal assistants” (not: “carers”!) will be trained in the NRH next Monday and Tuesday – meaning that everybody feels really confident that the pieces of the puzzle will fall into place very soon.

I can’t but hope that it’ll be the Irish way that’ll work here.

Today is also the Day of the Immaculate Conception and the day that the people from the country, ‘culchies’, are coming to town to do their Christmas shopping. Christmas is near…

Imagine. A new year. An Saol. With a focus on what is possible. For support. Dignity. Autonomy.

Part two of EAT, electronic assistive technology, this time not in the EAT clinic but in a combined therapy session.

Here is the setup.

The switch (a different one) under Pádraig’s foot, with a wire coming out of it which is connected to a box that is connected to a wall plug and to a radio. When Pádraig presses the switch, the radio turns on; he presses it again, the radio turns off.

This is different from answering yes/no questions, or pressing the switch when he hears a certain letter he’s been given earlier, because this is initiating the action himself. He presses the switch when he wants to listen, and he presses it again when he had enough.

Back on the ward, we put the switch into his hand (the cables didn’t reach to his foot). And guess what? Right! Not a prob.

To finish off on another note: watch the videos, it’s important to watch them in sequence. And in case you haven’t been in Ireland, the wind and rain here, especially in the West, has been the worst ever.

Click here to watch the first video.

And then click here to watch the ‘pimped up’ version of it. No surprise, really, that this got almost 400,000 views in just two days.

Someone said, they could use this for the next sequel of Jurassic Parc.

 

Just realised that this is my second ‘Nikolaus’ post. But it’s the first from Dublin. On the way back to the NRH tonight, we took the scenic route through O’Connell Street and around Trinity College, passing Grafton Street to show Pádraig the Christmas Lights.

There were no lights in the trees anymore as there had been before we left – actually, I remember them never have been taken out during the year, and just not being switched on during the summer…

We had our Sunday routine today. Irish mass at 10 in Church Street with a priest on two crutches who could hardly make it around the altar – but with beautiful Irish, it sounded really nice and fluid, just causing myself some problems as I was trying to pick up some words from the missalette – a nearly impossible task.

I’ll have to check that out tomorrow again – but it seems like the brilliant Neurological Alliance and with it the hundreds and thousands of people that are served by them was cheated out of theirs moneys – by a minister that was just looking after his own interests – playing ‘Nikolaus’ for his constituents.

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Really important in Germany.

No-one knows about it in Ireland.

And if they do, it doesn’t matter to them (to say it politely). Except you’re called Patrick or Pádraig or Páraic or Patricia or something like that.

So tonight I’m quietly celebrating my saint’s day while the world around me couldn’t care less. So what!

Pádraig is good, happy to be home.

Quietly, to be honest, I’m reaching the threshold of what I’m able to take.

Quietly, I think I’ll need to raise €2m and build an alternative to this mess. Working with the good people (they are the majority), leaving the others where they are (that’s where they want to be). – The alternative would be to pack it all in to an RV and drive. Haven’t discarded that not yet altogether either:)

Today, I went to my first professional one-day conference, organised by Headway, entitled “Current Best Practice And Future Directions In Neuro-Rehabilitation After Acquired Brain Injury”. Fair play to Headway!

At the end of the event I had decided I would not become a professional.

There were lawyers, doctors, therapists, researchers, and myself. When the CEO of Headway opened the event in the morning, I even got a special mention.

In my mind, the best talk of the day described rehabilitation as working for a meaningful and satisfactory life – not a series of ‘score taking’. It was a very comprehensive presentation of a very complex topic covering statistics, HSE initiatives, and expressed the hope that change could be on the way. However, it also described the practice that the injured are being sent back to acute hospitals after rehab as ‘beyond belief’. It highlighted that the 1999 recommendations by the Royal College of Surgeons of England (which also covered Ireland) for post-neurosurgery had still not been implemented. It described the resources available in Ireland as insufficient and as “shame on our service” – and compared this to the 200 rehab consultants working in Slovenia (in case you didn’t know, Slovenia has half the population of Ireland). It described a pathway to rehabilitation with two important elements, i.e. specialist in-patient rehab and specialist community-based rehab, as – “to put it politely” – “not consistently available”. It remarked that the State was failing the need of patients with brain injuries. It asked for support for the public outrage at the lack of services. It posited that in order to bring change (more quickly) family members needed to agitate because politicians listen to the public more than to the professionals. In order to bring change we need catastrophes. – What a speech!

It was a very powerful speech given with conviction. Somehow, however, I don’t think some of the listeners felt or even understood the magnitude of what was said. There was no outrage there. There was no agitation. Because, well, there were no injured and none of their family members. These were professionals.

I don’t want to be unfair to professionals though. Some of them haven’t lost their heart and their convictions (the speaker I mentioned earlier is one of those).

A few things happened today in the NRH, including a text Pat received from another kind of professional. The lady we bought curtains (well, not really curtains but ‘stores’) from Hickey’s last Sunday. Her colleague had called in during the week to put up the rails. She said that the curtains were ready, that she had pressed them, and would bring them down to the house this evening. She arrived this evening, hung them, re-measured the new windows and explained to us what we needed to buy instead of custom-made curtains (costing a fortune). She said ‘hello’ to Pádraig and wished him and us well when she left. On her way back home she texted again, she’ll be working in Sunday and will look after us, making sure we’ll get the over-curtains before Christmas. A true professional.

Today was EAT-day.

No food. But great technology.

Well, we started with some good, basic, hands-on engineering.

There is a clinic for ‘electronic assistive technology’ (EAT) in the NRH for which Pádraig had an appointment today. The idea was that the specialists would explore in which way technology could help Pádraig communicate better and take more control over his environment.

Basically, if you can press a switch to answer yes/no questions, to indicate that you recognise and understand words, or to spell – then you can ‘tell’ the radio that you want to listen to Raidió na Gaeltachta or Raidió Rí Rá or, even Radio Two; or you could switch the lights off; or play your favourite songs from a playlist; or…

Today was the first step and contact in getting there. Pádraig got the switch mounted on his wheelchair so that we won’t have to hold this in our hands any longer. And it’ll be always in the same place.

He tried that out: long beeps, short beeps, really loooooong beeps. (You need to know that the pitch of this bleep is similar to what you would hear if you had a tinnitus; and that he was making deliberate use of the switch most of the afternoon on the ward.)

A technology firm, Tobii Dynavox, will visit the NRH later in the month and Pádraig got a special appointment with them. Can’t wait.

In the meantime, Pádraig is making huge progress not just using his ‘left foot’, but also his hand; with a much smaller and more complex switch. It’s a recordable switch: you press it once, it ‘says’ what was recorded, and you have to release it before you can press it again. In this short 1-minute video, I ask Pádraig to press the switch (it says ‘ja’ when he presses it) when he hears a certain number. (Sorry, it’s all in German:)

Pádraig is getting loads of visitors which is absolutely brilliant! Two last night, one in the morning and another two tonight. He must be absolutely thrilled to see how much people care about him!

The visitor this morning is also a nurse who will be helping us with An Saol. There is really quite a bit of momentum building up with many people not ‘just’ saying how appalled they are with the lack of timely, proper and sufficient help and services, but who are also prepared to do something about it. (I need to say here that what staff are doing for and with Pádraig in the NRH, given the resources at their disposal, is really good – but access to the NRH is, of course, very much limited as we know. So much more needs to happen.)

Other friends have been volunteering to start working on a bit of a PR campaign in Ireland and abroad to spread the word that An Saol’s first volunteer meeting is about to happen, that An Saol will be hiring therapists, and that there are two fundraising cycles being planned for next year in the US.

It has been a good day today. And I’ve got this feeling that there will be many more good days to come. (Never thought I would say this ever again.)