Last Saturday week, my old school had a school reunion. I was looking forward to seeing some of my former school mates. There is about half a dozen of us of finished ‘Gymnasium’, our secondary school, together and who are still in touch. Apart from just a couple of friends from college and very few I got to know through work, these are my best and oldest friends here in Germany. As it turned out, I did not make it to the school reunion. We had an important, unforeseen, appointment here in Hamburg on the same day.

Even though I did not go, I realised that we are getting close, very close, to becoming the ancient guys in this group of former students. In 2017, it’ll be 40 years that we left secondary school, as the last class with what was called a “Humanistische Bildung”, at least that was the aim. For the most part, we did ‘stuff’ because we enjoyed it and we did not do ‘stuff’ that was boring. We certainly did not learn for money (or because we wanted to get a certain job) but because we wanted to know how things worked.

The trouble of that education is that we still keep asking. And you know how irritating questions can be that do not take ‘no’ for an answer.

Pádraig today had a high pulse, and high blood pressure, but no high temperature. We hope that all will be good by tomorrow, that it was just a short, temporary hiccup.

The highlight not just of the day, but of the week was Maitíu visiting today – and sharing with Pádraig and with us the magic that he manages to get out of his uileann pipes! He brought the house down and it was absolutely fantastic. It was his one day off, coming from Sweden to Düsseldorf, where he’ll be playing for a few nights.

I’ve mentioned that I feel so lost at times. Where do I belong? Germany, Ireland?

Tonight was not one of these nights. Tonight I knew that I will get an Irish passport and that I will learn Irish. I love my German family and my German friends, as always. But my heart is in Ireland. So much for today. Good night and sleep tight!

In Germany, the “Onkel aus Amerika” was always the big promise of new stuff. The Onkel was well travelled, had plenty of money, and, above all, was super cool. Today, Pádraig’s uncle from America arrived in Dublin. He’ll be with us on Monday.

We went out to the roof terrace, just in time for the rain. And just in time for a big party. A lady with iranian roots had her birthday, and her family, about a dozen really nice people had brought presents , coffee, tea, and home made cakes and biscuits. With a bit of combined iranian/german engineering ingenuity we managed to fix a huge sun umbrella that gave us all sufficient shelter from the rain to have a lovely time celebrating this lady’s birthday. It was so different from anything else we had seen before here: a big family getting together to celebrate with their really sick mother, cakes, candles, singing and all.

Yesterday, we had a meeting with a “Landesärztin”, a doctor of the Bundesland Hamburg, who explained to us the different options for further care for Pádraig, if and when he will be leaving the Schön-Klinik. There was nothing concrete, it was a first meeting we had with her after all, but we are beginning to learn what the German health system offers to people like Pádraig who are slowly recovering from a very severe brain injury and multiple operations. What was, perhaps, most surprising was how much the “Landesärztin” tried to convince us that we, too, had a life, and that we had to look after us, too, our life, our work, our well-being. Which lead to her strong suggestion to find a place for Pádraig where we would not be the main people responsible to look after him. Comparing the number of people who visit people in Germany in Ireland, this seems to be the manifestation of a big cultural difference between the two countries. Germans hand over the responsibility to the ‘professionals’, Irish people get involved and are very slow to hand over responsibility of care to others. Still not sure how to explain this, but this is another big cultural difference.

I missed it (no surprise there, unfortunately; wasn’t the first time) but when Pádraig’s uncle was on the phone to him today from Dublin, and when he told Pádraig that he had brought over ‘stuff’ for him –  there was the closest thing to a laugh and a big smile Pádraig has ever shown over the past year. Nothing like an uncle from America!

He would have smiled again, had we been able to show him tonight the brilliant pictures from today’s Swim for Pádraig, organised by Leinster Open Sea Swim. He’ll have to wait until tomorrow!

Here’s a short report from a good friend (who graciously ignored my distinguished record as a sea swimmer). Pádraig would have really really loved the day!

We had a great afternoon at the Swim for Padráig at Killiney today.  I came third (last).  Sean and Isaac swam really well.  Lynn provided the usual cake.  The only thing missing was you guys.  I am attaching some photos with this email.  Also going to send a second email with more photos from another devise.  Hopefully it will give you an idea of the lovely afternoon we had on the beach.

Thank you to Leinster Sea Swimming, especially our good friend Eoin Gaffney (who once took me under his wings for my second sea swim), and all who participated! – You made all the difference!!!

Someone told me some time ago that this is not a sprint, but a marathon. (Talking about marathons – are you on for 27 October, Merrion Square, Dublin?) We’re in this for the long run which will require an awful lot of preparation, support on the way, and a big pint of Guinness at the end. In a way, tough it definitely depends on how you look at it, in a way, we are still at the preparatory stage. Here’s an example from this morning, 8:45am.

Pádraig had a double physiotherapy session, with a super fit therapist practicing Vojta. At the end, I’m not sure who was more exhausted, Pádraig or the therapist. You wouldn’t do many of these sessions on one day – either as a patient or as a therapist. It was the first time I saw Pádraig lying on his front, supported by his hands and arms above his head, with his feet and legs positioned as if they were pushing him up the extra-wide therapy table. The therapist made Pádraig feel parts of his body I’m sure he had forgotten all about. It was wonderful – but I was in sweat just watching them. To me, this looked like physio for an athlete getting ready for the next Olympics. Wonderful.

A few weeks ago, a friend showed me a card Acquired Brain Injury (ABI) Ireland had distributed during this year’s elections. I had meant to share this with you for some time. So here it is. It’s one of the most ingenious ways I have seen to get people’s attention to the fact that many millions go into intensive care (quite profitable for the hospitals, the media here in Germany says), but very little is then spent on proper and timely rehabilitation which is very labour intensive and costly.

À propos Marathon – here is another first: a young person who doesn’t really know Pádraig that well and who, to be honest, looks a bit mad (in a nice way:) is going to run not just the Dublin Half Marathon later this month in the Phoenix Park for Pádraig – something he’s never done before. He is also going to run 42.194988km on the October Bank Holiday weekend: his first ever marathon. Please support his fundraising effort on iDonate.

I will have to get back to this one because – Donal will definitely not be on his own that day. I know a few people who will join him and, who knows, maybe we’ll have that point of Guinness at the end. Something that Pádraig, I know, has been looking forward to for more than a year now.

Remember: Vote for Hospi-tales on the Blog Awards Ireland 2014 every week – and get your family and friends to do so as well! Today, the blog was just a dozen votes away from going into second position which is crazy. Please keep voting and asking all your friends and family to vote vote vote! I’ll promise you anything you want if you give your vote to this blog!!!

Finally, there are only two days to go to the Big Sea Swim for Pádraig on 06 September.

Today’s German Music Tip
Adel Tawil, Weinen. A bit of a pop song from 2014 with a few lines that stuck with me, like “ich will dich einfach nur zurück”, “du bist der Beweis, dass es Liebe gibt”.
What’s hot
Vojta
What’s cold
Being stuck inside
The German word/phrase/verse of the day
Futschikato – look this one up in Google. Means: it’s gone, weg…

A few things first. News. Nothing dramatic, but worthwhile sharing. First, it turns out that Pádraig has a really great physio therapist. He is using something called Vojta Therapy which is working wonders on Pádraig apparently. We’ll join this therapist tomorrow morning at 8:45 for a session with Pádraig and I’m really curious to see how this works. Second, Pádraig has developed a great relationship with his music therapist. At the beginning we were not so sure about the benefits of music therapy – we were looking for ‘hard core’ physical therapy, the more the better – but have learned and observed the magic that is happening there between Pádraig and the therapist. It is really something else. To me, this man through his music and dedication has really found a door to communicate with Pádraig. Third, to us it seemed that Pádraig was doing better answering questions and eating than on other days. Not sure if this is the ‘drugs at work’ or whether it was just one of those good days. Finally, we had an ad hoc meeting today with Pádraig’s physio and OT, together with someone from what in Germany is called a ‘Sanitätshaus’, the suppliers of ‘gadgets’, wheelchairs, for example.

(As an aside, this meeting of about 45 minutes counted as a double therapy session. To explain: there are 300 minutes of ‘therapy’ Pádraig and other patients like him are entitled to per day. 180 minutes are for ‘Pflege’ (nursing and care), 120 minutes are for ‘proper’ therapy. Today’s meeting with the lady looking after the wheelchair, counted for 90 minutes (45 minutes x 2) – which left 30 minutes for music therapy.)

So what about the change?

I looked back today at the different situations we found ourselves in over the past 15 months or so. Coming to Germany, we were so full of hope and energy. We believed that access to first class therapy here in Hamburg would really turn things around for Pádraig. Looking back, he did get so much better, although he is really taking his time, so he is.

In the Schön-Klinik, doctors have started to mention that there isn’t really that much more they think they can do for Pádraig. Following our visits to several different rehab centres, we kind of agree with them. But then, we did not come here primarily for Pádraig to be looked after by doctors, but by therapists. And having quality time with quality therapists ain’t easy.

In addition, I have really got very tired of fighting the impossible fight in institutions. There will always be some really excellent people, but there are also some not to brilliant people. They all have different views and approaches, some really good and convincing, some not quite.

If you count the hours, I think Pat and I are delivering more ‘therapy’ to Pádraig than anyone else. There is no way we could do this at the level of his new brilliant Vojta specialist, or his magical music therapist, but we are certainly putting in the same if not more time.

And here is the change: I believe Pádraig will soon (within a few months) be leaving institutionalised care. And we will have to find the best way possible to look after him ourselves. So from now on, that’s what we’ll be doing: getting ready for the big day.

One stepping stone towards that day is getting him a new wheelchair – and there are amazing ones around that would really help him, literally, to get onto his feet. Check this out.

Loads of writing. Few pictures. Lots of thoughts.

Yesterday, 20 years ago, Pádraig went to school for the first time. It was a really big day for all of us. Like everybody else, we took pictures of him in his uniform in front of the house – him putting up a brave face. It was also the day, and that’s another reason why we will never forget the day, that the IRA announced their first seize fire, marking the beginning of peace in the North of Ireland. Nie Wieder Krieg.

75 years ago today, Germany attacked Poland and, with it, the Second World War. It’s ironic that, today, the German parliament discussed sending arms into a war zone for the first time, at least officially, in Germany’s post-war history. “Nie Wieder Krieg” was the conviction I grew up with, too many people had died, there had been too much suffering – for nothing, nothing at all. The house we live in here in Hamburg, all the houses in the street, and all the streets in this part of town were completely destroyed in a fire storm. (Most of) you would probably not believe me if I told you that, in Dortmund, I used to play in bomb craters, their conic shape was perfect for speed cycling around at an angle. It’s one of these stories that made Pádraig turn his eyes to heaven and sigh – come on, tell us again…!

We had a good meeting with his new Oberarzt this afternoon, joined for the last few minutes by the Chefarzt from the ‘old’ ward (we previously really had not talked to, in a sit-down-around-the-table-kind-of-way). It was a really good meeting. We felt we were listened to and were getting some answers to a page full of questions we had prepared. The plan is to try drugs to stimulate Pádraig’s brain. I didn’t say it, and, to be honest, it’s really far to serious to even think about it, but – to me it all sounded very 60s and 70s like. So, they’re going to give him a drug to see what happens over a period of about 2-3 weeks, and then re-assess. It’s all very structured and we already have another formal appointment for our next meeting in three weeks’ time.

I thought I’d never see this again: CONDENSATION! Nie Wieder…

Things are still sorting themselves out in my head, the things that happened over the past year, also things we saw last week, above all the magnitude of what happened with Padraig. Different doctors and different practitioners giving us slightly different views of what should be done, how it should be done, and when it should be done. Aspects of it begin to feel like what happens at work: I ask a lot of questions, listen to a lot of people, and as I do so, I form my own opinion, and then follow my informed instinct, if such a thing exists. Only, that in this case so much depends on it, the whole situation is so hard to take, that my ears never stop ringing, my vision is getting blurred, my hair (the little that is left of it) is turning grey.

Many things have happened, I’ve heard and seen so many incredible things, that I keep thinking ‘Nie Wieder’, don’t look back, look into the future and make the best out of whatever is awaiting me, us, there. Nothing sounds easier, nothing is going to be harder to do.

Question: What led to the devastating state of the Romanian ‘orphan’ babies and young children? (You will remember the world-wide scandal some years ago, when they were found in a very bad metal and physical shape in several orphanages around Romania.)

Answer: Almost complete neglect and lack of meaningful stimuli. There brains were never challenged. They were left in cods on their own, receiving nothing but the most basic care.

Now, remember the discussion about whether it’s worthwhile providing therapy and neuro-rehab to patients with severe brain injuries? The thing about the lack of ‘return-on-investment’, the idea that treatment would be ‘wasted’ on these patients because ‘the brain heals itself‘ and that there was nothing you can do to support this healing process?

Here is an idea. A very lay-person-kind-of-an-idea. An idea that medical consultants, health economists and politicians should therefore find very easy to understand. No scientific study needed, no professors required.

If you leave someone without stimuli; if you leave them on their own; without regular and meaningful physical or mental stimulation; looking at the ceiling above them for hours, days, weeks, months, or years; if you don’t get them onto their feet; if you don’t talk to them; if you leave them on their own – THEIR BRAIN WILL DIE, not heal itself. Whatever potential for healing there is will disappear, go to sleep forever, shut down and stay shut down. In the best of circumstances, I would call that neglect, especially if you knowingly permit those abandoned to get physically and mentally injured (think bed sores, think dropped feet, think dislocated shoulders, think acquired spasticity, think …).

Yesterday, they took out what is standard procedure in an ICU: an IV entry, just in case they needed it. It was always in the way if you wanted to move Pádraig, and it was just another one of these ‘entry point’ we wanted to get rid of. He is stable enough now so it is no longer required.

It is really great to see how the nurses we have met so far on the new ward deal with Pádraig as a person – someone who understands, has opinions (they don’t know half of it), can communicate.

Here’s is another first: Up to just a few days ago, Pádraig was on a constant water and “Sondennahrung” (liquid food) drip. Day and night, water and nutrition was dripping nonstop into his stomach. Can you imagine the feeling? Not only would you forget how to chew and swallow food (even if you, theoretically, could do it), but you would forget how it feels to be thirsty or hungry. So, after more than a year – MORE THAN A YEAR – they stopped the liquid food during the night and they are not giving him water via the drip anymore at all, at all (with few exceptions), but via the PEG in larger amounts directly into the stomach. Another big step towards a bit of normality.

Pádraig also got a new physio who is doing magic stuff with him. One nurse described Pádraig’s reaction to this treatments as ‘bombastisch’! Pat told me ‘you have to see what he is doing to believe it’ – I can’t wait!

Please: keep voting for Hospi-tales on http://www.blogawardsireland.com/best-blog-post-2014/ – it’s still in an amazing 4th place, but you have to keep voting as often as you can (and ask your family, friends, enemies, and colleagues to do so as well) to keep it there or even improve it’s position!

Finally – if you are into sea swimming, don’t forget the brilliant fundraiser, the Sea Swim for Pádraig on 06 September!

Today’s German Music Tip
Adel Tawil, Zuhause (July 2014). – Zuhaus ist da, wo Deine Freunde sind…
What’s hot
Getting rid of entry points
What’s cold
Smoke screens set by the ‘experts’
The German word/phrase/verse of the day
Bombastisch

I don’t know where to start…

When we arrived today to see Pádraig, we asked as we always do, how he was doing. The nurse said all was ok, fine, with one exception: they had given him some Ibuprofen as his knee had been hurting him. His knee. His knee? Yes, Pádraig had told a nurse that his knee was hurting. He had told. A nurse. His knee was hurting.

How had he managed? -> Apparently, and through a process of elimination, the nurse and Pádraig had managed to have some super close ‘conversation’, using a combination of tongue and feet movements, identifying the pain in his knee!

Here are another few ‘firsts’:

Since yesterday, Pádraig is no longer on any monitoring equipment! No ECG, no more oxygen saturation levels taken round the clock! It is so so strange to see Pádraig without cables hanging on to him around the clock!

We went out. Alone. What a feeling.

What a day!