Pádraig’s got all the foot and legwork under control he’ll need when to walk: he can lift his foot up front and back, and he can move his legs forth and back – even against resistance which is, as we know, futile:)

Here are two really short clips recorded today. Looking at this out of context it’s not really that spectacular. Knowing the effort Pádraig put in to get to a point where he is in control of his feet and his legs, this is pretty extraordinary, in my mind.

First off: the footwork.

“The best ever” is what Pádraig’s physio remarked when he moved his leg back today when sitting in his wheelchair ‘swinging’ his legs.

His physio also asked him how many people were at his ‘party’ yesterday and he ‘bleeped’ 13 times – which is what I would have said. And I’m sure, as he was pressing that switch for each of his friends who had been with him, he was thinking of their names and seeing their faces in his mind.

All Dreamboaters.

It wasn’t really a party but it was a great get together of Pádraig’s friends who joined him to celebrate his upcoming birthday for which he won’t be in Ireland – but in Germany for another four weeks of intensive therapy. (Pity An Saol isn’t up and running yet.)

It was a really exceptional afternoon. In so many different ways. With so many really exceptional people. I think I mentioned before that Pádraig once wanted to set up a new country off the west coast of Ireland. His friends here today would have been the people to he would have loved to live with him in this country, full of fun, empathy, and love.

Connected Pádraig’s telly to chromecast (again!) so that we can now do stuff on the internet, watch movies, or play games on the ‘big screen’.

I never really had used Google Play to look up movies and was surprised to see some quite recent movies for not too much money. Just to see how it worked, I bought “My Scientology Movie”, describe by Rotten Tomatoes as “stranger than fiction” – because it looks like an interesting ‘documentary’ and because when some of Pádraig’s friends visited yesterday we were talking about their really expensive and luxurious looking Dublin Headquarters and the fact that I had heard that as Tom Cruise had reached the highest level of enlightenment, he can fly. Tom Cruise can fly. In fact, he is, as I was told, so enlightened, that he doesn’t even have to show the stuff he can do. He can just do it.

One of Pádraig’s therapists proposed a few things to him, things he should do while in Germany. Starting to write. Eventually a book (that therapist is very curious about finding out how Pádraig has perceived what is going on around him), but first a few practice runs at spelling sending text messages.

And if you want to text what do you need? – Right! A mobile phone. He should have a phone anyhow, said the therapist. He should also start using his Facebook account more frequently.

Someone else told us to buy this (Chinese) machine that stimulated muscles by sending very tiny electrical current through the muscles, and to use that for maybe 15 minutes everyday in order to ‘wake up’ muscles Pádraig hasn’t been using for some years now. Sounded like a really good idea. And so we did and started to use it. Pádraig says he likes it. I tried it myself and will try it again – it’s an interesting feeling.

Pádraig and I will be here on our own next week (until Thursday) and I have told him that we will go out and do something every afternoon. I’ve been thinking of going to a museum, watch a movie, go to a play (if there’s one on in the afternoon), or go to a concert (again, if there’s one on in the afternoon). He’s easy, he says, and doesn’t mind what we’ll be doing first, he’d be happy to do any of these things – which tells me that we should be doing ANY of these things much more frequently.

Finally, we’ll be having a get-together tomorrow afternoon to pre-celebrate (a little) his birthday as he won’t be here for it and to say ‘good-bye’ to friends for a while since we’ll be going to Germany this coming Friday. Feel free to join us!

Pádraig won’t fly – we’ll be taking the ferry to France:)

Pádraig won’t be in Ireland for his birthday So, we’ll have a ‘do’ on Sunday afternoon with anybody and everybody who’d like to be invited to join Pádraig and his friends at his home from about 2pm to 5pm.

There won’t be an An Saol Café tomorrow afternoon in Odin’s Wood.

I’m leaving many things behind, giving much of my life up – that’s what I’ve been thinking when I was looking at my life, my work of several decades. Up to today.

There is a man who has been supporting much of that work over the past years, a man who became a friend. He told me today that life is about changes. That there was a lot I had done, that a lot of that will live on, though certainly different from the way I might have envisaged and different from the way I would have continued that work.

But so what? he said. You’ve got so many more things to do, so many important things to look at. You have decided to spend more time then before with your family. And that’s what it is all about.

I walked out of that room where we had met feeling good about leaving my old life behind.

Because the life ahead is going to be all about looking after each other.

Which is what life really is all about.

Pádraig used his MOTOMed arm trainer today and started to work it himself. It was a huge effort for him, but he managed to do it. The same way, he managed to hold his head up high today, all by himself, when he stood up in his fully height in then standing frame. I know all those things are small and he is not yet able to do them over a longer period, but I can see he’ll be getting there.

This coming Saturday, at the An Saol Café, the last one before the summer, we’ll celebrate life. Tomorrow week, we’ll be on our way to Pforzheim, for another intensive therapy session.

PS: Have you been watching the Eurovision? – I really liked the programme they showed tonight about the Eurovision, just before the competition started. And I like the theme: Celebrate Diversity!

ClareFM yesterday, the BBC today. An Saol is still very much present on the air waves.

Yesterday, Gavin Grace interviewed me for his Morning Focus show on ClareFM. An interview that shows how things have moved on. The Focus now is really to get the An Saol Project on the road – a project very much present in the HSE 2017 service plan published in December of last year, announced by Simon Harris and approved by the HSE in February. Followed by a long silence.

Anocht ar Blas beidh @MBhreathnach ag caint le máthair & deirfiúr Pádraig Schaler @an_saol faoi ‘Action for Brain Injury Week’. Pat and Maria talk to Máire Bhreathnach, presenter of the BBC RadioUlster Blas Irish Language current affairs programme.

Today, for the first time, An Saol became one of two main topics (the ‘other’ topic was Trumps “you’re fired” of the FBI Director, James Comey) on BBC Raidio Ulsters Irish language current affair programme Blas, presented by Máire Bhreathnach. The first time on the BBC. Getting Health Minister Simon Harris onto the show did not work out, unfortunately, but his Department said that they are in close and constant contact with An Saol, developing the project. Mmmmhhhhh.

The more people and the more often we talk about the abandonment of sABI survivors, the better. However, we won’t forget to actually do something for them. First and foremost. Hopefully with the HSE.

I had taken a nap yesterday afternoon. For the first time in a while, I was not too tired in the evening. So I did what I used to do when? and read a bit of a book. Searched for music on youtube. That’s what Pádraig likes, amongst so many other things: Reading. Music.

So why, why is he not getting access to books. To good music.

Because part of his day is wasted by people not working efficiently with him. I think that will have to change. Because the mind needs to be stimulated, like the body.

Today I was also exploring my options in relation to my work at the University of Limerick following the end of carers’ leave at the end of August. It is strange to see that nothing of what I left behind almost two years ago still exists. Maybe, on second thoughts, that is a good thing.

Was interviewed on Clare fm today, will find the recording and put it up later. Also got a call from the BBC in the North who wanted to interview someone about Pádraig and An Saol, in Irish.

Pádraig is fine, continues to improve every day. Went swimming and did stuff with so much ease.

Two dates for your diary first: (1) This coming Saturday will be the last An Saol Café before the summer (HSE Day Centre, Odin’s Wood, 2-5pm). (2) The annual mass of the Society of St James (‘the camino people’) on 23 July in St James’ Church, Dublin.

We went into a Chines Health Centre and Shop on Parnell Square today and found an incredible selection of stuff, in a really old, unassuming building. We went there to buy a machine that issues small electrical stimulus to muscles, one that Pádraig’s physic has been using really successfully with him. The idea is that we’ll learn how to use it and that he can get the benefits of it every day, rather than just a few times a week. While we were there, we heard that they do acupuncture with people who’ve had a stroke – or a brain injury, something we’d heard about in Germany before. Thinking about it.

Also finally and officially booked and paid for Pádraig’s (and our) now annual pilgrimage to Lourdes. We’ll catch the train, again, from Karlsruhe, close to Pforzheim, for the week-long journey with this really incredible group of people who’d I consider friends by now to this place that must be unique in the world with its profound and deep spirituality along with the most tacky and over the top sense of ‘wonder’.

Pádraig’s diary is filling up!

What a privilege it is to have one, to be able to plan, to look ahead. Ahead!

Like nearly every other house in Dublin we had a barbecue this evening. In our case: small BBQ, big smoke.

I don’t think I’ve ever seen such a small BBQ producing so much smoke and so little heat. Truly amazing. We just about managed to get a burger and a sausage for each of us and it must have taken two hours. By the time we finally ate, the sun had disappeared behind the neighbour’s house and the wind had got chilly.

Like in life – timing is everything when you’re having a BBQ!

A week ago we’s just got back from the Camino. Completing that walk wasn’t easy but it was really enjoyable for so many different reasons. Back in the house it’s not easy either and to be frank: it’s not half as much fun.

The question is: is it ok to really enjoy doing something for a while and then go back to a not-so-enjoyable life? Or: would it be better trying to change something and make every-day life more enjoyable?

At times, i think some radical change is necessary. Just going on every day like the previous is not good enough.

Change is risky and it is difficult. Just like the Camino.

But – it can be fun.