Today, Pádraig’s “Power of Positivity” made it onto the title page of YOU Magazine, together with “mean girls” and “Netflix ruining our sex life”. A whole new different context to talk about the power of neuro rehabilitation. But – why not?

Back in Burgau —

Pádraig had an hour of therapy today – something that is not a given on a Saturday, even in a first class rehab centre like Burgau. Most of it was about positioning Pádraig in bed so that he is both ‘stable’ and feels safe but can, at the same time, move if he so likes. There is so much to learn from nearly every person we meet.

I was also invited to join some sessions of a multi-day course in F.O.T.T. (Facial-Oral Tract Therapy) the educational centre attached to the therapy centre is running these days. It was a true eye-opener in very many ways. Some of the trainers worked with the lady who developed F.O.T.T.,, Kay Coombes, and were an example not just of knowledge and experience but also brilliant in sharing it with and passing it on to the participants in the best, really the only way of doing this: through experiencing it themselves (as far as that is possible).

What became clear is that it has to be a pre-requisite for anybody ‘feeding’ someone with a severe acquired brain injury and especially someone who is non-verbal to have F.O.T.T. training. Anything else can be dangerous and damaging.

One function of the An Saol Project will be to organise that kind of training for all who need it. – The course will continue over that next few days and I’m looking forward to participate in more sessions.

So many things in life are touch’n go. Will it work. Won’t it.

Someone had the idea to bring a body deodorant for Pádraig. To be honest, I didn’t even know this stuff existed. But, there you are. I was about to say that Pádraig doesn’t take deodorant, never mind body deodorant when I realised that this was not about deodorant at all.

This was about touch’n go. It was about will it work or won’t it. It was about Pádraig taking the bottle into his hand. His hand feeling it. Guessing what it might be. The taking the top off. Feeling the top. It was about moving the bottle up to his body and pressing that button that released a spray. Ok, it was “fruchtig und süß”. Probably. One that Pádraig would not have touched with a goal pole. But that didn’t matter either. It was about doing something with his hands. About moving his arms. About realising that his body was able to do useful stuff. Never mind the smell.

I have been doing a few exercises myself – or: they were done on me. One was about positioning and the other was taking something into my hand with closed eyes and experiences that feeling of my hand trying to figure out what was going on. I am telling you there is nothing like experiencing even a tiny bit of what is Pádraig’s every day reality myself to just get a faint idea of what he is dealing with.

I thought I had come back to the apartment late last night. It was an hour later tonight. Pretty intense days.

Tomorrow and the following days, I will join a course on “Facio Orale Therapie” as there was  seat available and the organisers invited me to participate. It’ll be an interesting few days. Never a dull moment.

They say the days are getting shorter again. Not here in Burgau. I’m just back at the apartment after 14 hours at the Therapy Centre, helping Pádraig with his food, attending his therapies, learning more about LIN (positioning in bed), going for a walk with Pádraig, and many other things I don’t even remember anymore.

Pádraig had a session in the centre’s robotic walking machine, Geo. The idea of the Geo is similar to that of the Lokomat, though there are a few difference. The main difference to me seems to be that the Geo is less controlled – it does not fixate the hips as the Lokomat does, and it does not control the legs as much. I guess there are advantages and disadvantages with each of the two machines. Have a look at how Pádraig was doing.

My plans for our stay here are not working out (yet) the way I thought. I am way behind with work I brought with me. And there isn’t a hope that I might even just touch one of the four really interesting books I had planned to read while here.

I kept one of the best things that happened today for last.

I received an email with a transaction note showing that the HSE had transferred the first instalment of their grant to the An Saol Foundation.

The 12 of July will never be the same. Because today we have proof that at least some people in the ‘system’ or the ‘establishment’ have recognised that persons with a severe acquired brain injury should not be left behind. The An Saol Project is a very small first step to change the hearts and minds of people about sABI.

Dreamboaters. Ahoi!

We had, reluctantly, decided to back the English team tonight. Probably because we had heard a Frenchman saying that they would like to play England in the final and beat them.

with both eyes open this afternoon when we went for a walk

I stayed with Pádraig tonight to watch the match to full time and then went back to the apartment. Only to see England loose.

Pádraig had another busy day today with a few medical exams in the morning and then a few hours of therapy. One really interesting thing they have been trying here is to wrap his torso tight into bath towels and then support it with a wide special belt. That supports his whole upper body which, in turn, makes it easier for him to hold his head straight.

Wednesday is also the day of the “Visite”, the big “rounds”. Pádraig could be the only patient in the reha hospital not taking any medication. He could, in fact, be the only patient in a hospital in the whole of the country not taking any medication. Which makes it, I believe, even the more admirable that there are doctors here treating him in a very positive, proactive, and supportive way.

Pádraig also saw a senior doctor here today who has been here for decades, with a vast amount of experience. Watching him and listening to him as he connected with Pádraig trying to understand the reason behind some of his restrictions, for example in terms of opening both of his eyes, were a lesson in patient centred medical care. And so was the big round and the approach of the consultant. All pretty exemplary.

It is still strange to leave Pádraig behind in his room, although it’s really only to sleep. It is, though, also good to see that it is possible if necessary.

I brought some books with me to read and some work to catch up on. I’ve not been busier in a long time. Looks like the books, the work, and even ‘keeping in touch’ stuff will have to be if not postponed but then delayed….

Second day in Burgau and Pádraig had about six hours with therapists today. Ergo, physio, speech, a walking machine (different from the Lokomat), a neuropsychologist, and a visit by the consultant. There was hardly any time for eating, drinking, or taking. a rest. It’s also really busy for myself. Not much time, but great learning and great experiences. The enthusiasm and the experience the people working here is really something very special.

Check out Pádraig sitting in his chair. Almost straight. And no sign of a headband. He is getting there!

There were so many things happening today that I am still catching up with all of it in my head. All the different therapists were there to get to know Pádraig and I think he impressed every one of them. The speech therapist had organised a session to check out how well Pádraig could use a computer for communication.

And i must say, I have never ever seen him so alert, tuned in, and so well able to use the computer to select options, to pick up words, or to spell. I was over the moon and embarrassed and annoyed all at the same time.

It’s almost as if it was our expectations that limit Pádraig’s opportunities. He is able to do so much more than what we allow him or offer him in terms of help and support.

The limitations aren’t his. They’re ours!

This picture is of the least important thing that happened today. But it was something that has stayed me all day long. This is a coffee cup heater so that when you pour the coffee in to the cup it will stay warm. Isn’t that ingenious? Have you ever seen now before? – I’d never seen such a gadget in my life, up to this morning.

Last night we stayed with Pádraig in a guesthouse that couldn’t have been more German in many ways. The apartment we’ve rented for ourselves for the coming three weeks is in an attic and could not have been reached by Pádraig. The advantage was that we could stay right beside the Therapiezentrum Burgau – and that we had the best breakfast I’ve ever had, including piping hot coffee!!!

There was another note about Pádraig’s “Return to the Cape”:

We’ve been here in the Therapiezentrum Burgau a few times to meet and to talk to people and to look at how they do neurological rehabilitation here in the therapy centre, set up almost 30 years by Mr Schuster following an accident of one of his daughters.

The strangest thing of it all is that Pádraig will stay in the clinic and we don’t. For three weeks. This has never happened in the past five years. If it all works out well, Pádraig and us will have learned at least one new lesson: that he can be independent of us if he wants to or if he needed to be.

That can only be a good thing. (But is still weird…)

Felt like as if I hadn’t slept at all when I got up at 4 am this morning. A few hours later we got onto the DART-type S-Bahn to get us to the Hauptbahnhof. From there, it was a regional train to Burgau where, as you will remembers from our spring time journey, you cannot get off the train if you’re coming from Munich. So we had to continue a few stops down the line to Günsburg where I had to fix the lift to get us down from the our platform to a level where we could cross. Wait. And get another train back to Burgau and to a platform from where we could leave the station.

A few things happened to day that I might have missed just being busy… one thing was when we went out for dinner, just 100 metres down the road where we are staying in Burgau just for tonight (the apartment we rented for the coming three weeks in not wheelchair accessible and the Therapiezentrum cold not admit Pádraig today).. Burgau is a tiny town. The bar / restaurant we went to reflected that everybody knew everybody else.

Pádraig’s Schnitzel-Dinner tonight!

When we arrived at 7 pm to have a beer (we are in Bavaria after all) and a bite to eat, all tables were taken. But then this elderly couple got up from the nicest seats and tables in the restaurant and offered it to Pádraig – who duly went on to have a Bavarian beer with German Schnitzel!

TheJournal.ie continued with their reporting of Pádraig’s trip to Boston and put together a short video!

And so did a local Brewster website reporting on a long email they received from the Chief of Brewster Police, following Pádraig’s visit back to the Cape.

Head is hitting the keyboard. Good night!

Another day I’m getting to bed far too late, considering that we’ll have to get up at 4 am to make it to the airport in time.

I’ve been writing to a journalist on the Cape who published a follow-up article on Pádraig’s visit to Brewster last week, basically reporting on a long email the Chief of Brewster Police sent to him following Pádraig’s and his friends Walk for Life.

The article quotes the Chief as saying that

At the Schaler family’s request, we were contacted by the Attorney General’s Office in 2015 and all information related to the case, including depositions given during a civil proceeding, were turned over for review and we cooperated fully. There was no finding of impropriety.

It was us who took the depositions and forwarded them on to the Attorney General’s office. The police never ever even took as much as a written and signed statement from the driver. And the Attorney General’s office was not investigating “impropriety” but considered whether they could take a criminal case in the Courts against Brewster Police Department. In the end they decided that such a case would most likely not be successful. That was their finding.

The kind words the Chief finds for Pádraig and our family are very much appreciated. But they are not enough. As long as they publicly repeat that their investigation was proper – insult is added to Pádraig’s injuries.

What happened to Pádraig should never happen again.

An apology would be a first step in the right direction.

Why do people like Leonard Cohen songs?

They are depressing, sad, and full of heartbreak.

I think they are also funny and disarmingly honest.

“Everybody knows” is a perfect example for this.

Everybody knows that the boat is leaking
Everybody knows that the captain lied
Everybody got this broken feeling
Like their father or their dog just died

Everybody got this broken feeling… Isn’t that the perfect description of misery? I’ve got this broken feeling. My lightness of being is gone. My ‘Unbekümmertheit”, my carefreeness. I don’t think it’ll ever come back.

What I haven’t lost is my ability to laugh and joke about my misery, at least at times. And who would have thought that some researchers believe that laughter is the best medicine at least for some conditions. Apparently, we change physiologically when we laugh. We stretch muscles throughout our face and body, our pulse and blood pressure go up, and we breathe faster, sending more oxygen to our tissues, including to our brain. The opposite is true as well: no laughter, less oxygen, less chance of recovery.

So I’ll keep listening to Leonard Cohen’ songs. And looking for a stand up comedian who’d be prepared to tell Pádraig’s story, in a funny way. To keep the oxygen going into my brain – and otherwise get people to listen.

Pádraig will be going back to Germany on Sunday. This time to the Therapiezentrum Burgau. We visited there a few times but have never been there over a longer period. They are helping us with An Saol’s pilot project – so it’ll be good to see how they work.

Today, for the first time, Pádraig stuck his hand into a crisp bag to get himself a crisp. He didn’t manage to get his hand back out again, unfortunately. He’ll try that tomorrow and the day after until he’ll be able to do it all by himself.

He’ll just have to keep trying.

“Thursdays with Pádraig” is what his friends have agreed to do. They take turns and call in to see Pádraig, to update him on what is going on and to see how he is doing. Today, as t happened, two of his friends called in, at different times.

One of them told us that he was going to walk across Ireland. Why would he do this, I ask. Was his car broken? – Probably out of courtesy, he smiled. The rest of my family just looked at each other and blamed cultural differences. He is going to do this coast to coast walk with two of his (and Pádraig’s) friends. They hope to do it in nine days.

The other (slightly older) friend is seriously ill. He had been coming over to see Pádraig regularly over the years and had made friends even with some of Pádraig’s carers. For him, he said, everything was coming together. When he left, Pádraig had one of those moments when we all new and felt how sad he was. And there was nothing we could do about it.

This morning, before Pádraig had his first physio session following his return from the Cape, I went up to our local HSE office and collected the original of the signed (!) Service Agreement with the HSE. It was an almost unreal moment, holding this document in my hands that had taken close to a year to get together, and another six months to get counter-signed by the HSE. Now, we’re just waiting for the funding to get processed and then, there will be no way back!

After many ups and downs, today we decided to work on the refurbishment of ‘Creation House’, the FABrik, the old Smurfit factory. It will take up to nine months to get planning permission, the paperwork processed and the work done, I was told today. We will need to find interim premises to start getting on the tracks after the summer. It is amazing to see things changing and turning from ideas into reality!

So what kind of day was this today? A mixed bag day? Or just: a ‘normal’ day?

I think it was the closest thing you could get to a ‘normal’ day