After yesterday’s call for revolution, I thought it’d be nice to talk about peace. So I did a few searches, but, to be honest, I couldn’t find much, or at least not anything that was catching my attention. But then, as we were reading out news stories for Pádraig – there was a story about peace. Although, it was extraordinary, and very different from what one would have expected…

There were a few comments on yesterday’s blog, and the update on the caringforpadraig website: Rehabilitation Services in Ireland – Time for Change. With the help and some pointers from a friend, I put together some information on the outrageous lack of rehab services in Ireland. It turned out that what we experienced was something hundreds of people have experienced for many, many years. Specialist consultants are well aware of the situation, politicians are making declarations, the HSE and the Government are publishing a National Policy – but people suffering brain injuries continue to suffer a highly inadequate level of care in Ireland. As they have for decades.

I will start putting some information together on the services available in Germany. One of our ‘regulars’ has offered to do the same for Spain. Maybe we get friends from other countries contributing too? – Would it be a good idea to make friends, politicians, and the public more aware of how some of the most vulnerable patients are suffering and are, effectively, emigrated because of the shocking lack of resources afforded to them in their own country?

Pádraig was moving his head and legs today quite a bit. He had done this before, but I don’t remember having seen such movements so ‘concentrated’, so many all in one day, or rather afternoon. He still has a congested chest and a touch of pneumonia but seems to take it in his stride. Most of it has to do with the operations, it happens, the doctors say, but we hope, of course, that he will get over this ‘aftermath’ soon.

There was a story in the news today about the Pope releasing two ‘peace doves’ – and, as it happens in real life, they were immediately attacked by a seagull and crow. Pat was reading this story out loud to Pádraig and there was a clear reaction by him. I had to laugh out loud (politically incorrectly, I know, but I found it so funny at so many different levels that I just had to), and it felt almost like as if he was joining in. It would have been great if he really had. One day he will.

Today’s German Music Tip
Puhdys, Wenn ein Mensch lebt (1973). Probably the most famous band of the former German Democratic Republic – and their first appearance on West German TV. I had completely forgotten about the Puhdys (which should probably be called ‘Puhdies’?), but came across them again when look (desperately) for German music on youtube…
What’s hot
Peace doves
What’s cold
Hamburg: -11oC
The German word/phrase/verse of the day
Crash-Kurs (a note posted on a driving school advertising intensive 7-day driving courses)

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

“It is time for change. It is time for a revolution in rehabilitation.” Not our words but those of the person appointed by the Government of Ireland and the HSE as the National Director of Clinical Strategy and Programmes, Dr Áine Carroll. (Irish Examiner, 03.02.2011)

The National Rehabilitation Hospital (NRH), the only facility of its kind in the whole of Ireland,  has just 119 in-patient beds. “Ireland should have a minimum of 372 in-patient rehabilitation beds,” said Dr Carroll. The doctor stressed that rehabilitation following injury or disease was a basic human right. It was not a privilege and was supported by international legislation.

Dr Carroll states, “There are insufficient numbers of rehabilitation medicine consultants, insufficient access to specialist rehabilitation at a local level, lack of support for primary care teams in managing very challenging cases and lack of support for the patient and their families. Even if a patient has been through the services of the NRH, once they get discharged they’re very often left in a kind of limbo.” – Dr Carroll admits that the number of rehabilitation medicine consultants – six full-time and one temporary – is grossly inadequate for a country like Ireland, which has the lowest number of rehabilitation specialists in Europe per head of population.

“I do not enjoy the frustration of being embarrassed when we tell our European colleagues how little rehabilitation resources we have in our country,” Dr Mark Delargy, Medical Director of the Acquired Brain Injury Programme at the National Rehabilitation Hospital (NRH) remarked. “The challenge is getting patients without having to wait months and months and our challenge is to accept people with the most severe disability quicker than we are doing. “People with the most severe disability require the most intensive resources, but our capacity to admit patients with the most severe disability is limited so we have a bed quota for people in a vegetative state and with locked-in syndrome.”

All this is a bit long and maybe complex – if you feel like it: the full text and sources are here. Compare the above with the recent reports published in the context of Pádraig’s case. The situation is ’embarrassing’ (M. Delargy) and ‘grossly inadequate’ (A. Carroll).

Today, Pádraig had a bit of a lung congestion. Nothing serious, but he could do without it. We are discovering how nice it is to be able to close the door and to just be with him. No need to talk. No need to do things. Just be there. In between, we are telling him about what is going on back home: the concerts, the table quiz, the swim, preparations for a ‘mini’ marathon. He would probably be very embarrassed if he did grasp and understand what people are doing to help him. There are literally hundreds of people preparing concerts with more than 10 bands and musicians, quizzes, running and swimming events. I can only imagine how much he would like to be right in the middle of it all. – One day he will be!

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

I’ll keep it short tonight.

And I won’t say anything about German music.

Because there is nothing, nothing like the line up of bands and musicians playing for Pádraig over the coming two weeks (in addition to the most exciting and unusual of table quizzes.) Check all of this out here.

Please spread the word about these events and join them, if you can, with your friends, neighbors, acquaintances, and colleagues.

Over the past week or two, there has also been quite a bit of press coverage, which you can check out here.

The latest news from the man himself is good, and a bit different. His Oberärztin came in for a visit today to see him. She agreed that he had held up quite well since he arrived back at the Schön-Klinik. So, she said, we shouldn’t be surprised if we should find him in a different room next week, closer to the exit door – literally. It wouldn’t be very different, more a symbolic thing than anything else. But symbolic, nonetheless. And then, she said, if all goes well, they’d move him to ‘proper’ rehab. Which is why we came here. Fingers crossed.

So, join the events over the coming weeks, tell all your friends about them, and keep the good spirit going. It’ll make all the difference.

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

Wash Saloon á la Germany: with Miele washing machines, no staff, and page-long instructions on how to use the automated systems.

It was all good. The corn – of bio-dynamic origin. The mill – fixed to our kitchen table and operated by hand. The dough – kneaded by hand, connecting our energy with that of the dough, creating a synergy not just with our food, but with mother Earth. Well, let’s say it was all good for the first day, when the bread came straight out of the oven and on the table. We must have something missed in the ancient recipe we used for the bread, or, maybe, some energy flows didn’t work out in our apartment. Fact was that our bread got so hard after about 12 hours that we could only eat it because we were young. I am sure that – would I eat this bread today – all of my teeth would break after the first slice. But, this was my Wohngemeinschaft. And we all really believed in the goodness of the food prepared with our own hands. Until my Irish friend arrived. Who was not afraid to buy white (!) toast (!) “bread”. I still don’t know how she managed not to be shamed and blamed and marked as an outcast, but, instead, convinced everybody in my Wohngemeinschaft that, really, white (!) toast (!) “bread” was not just safer for your teeth, but actually tasted ok. This was Irish magic doing a disappearing act on some Germanic dogmatism, and it wasn’t even as hard as one might have expected.

If you ever watch The Mentalist, you’ll know who was here before us…

Pádraig was sitting up in his bed when we arrived today, and he looked good. It was amazing to see yesterday how much the short trip from the UKE to Eilbek had taken out of him; and today, how fast he had recovered. His heart, oxygen, blood pressure were all so much better. We spent some time talking to the Oberärztin on the ward who said that she had spent some time observing Pádraig from the door, and then again inside when she was talking to him. It was clear to her that Pádraig behaves and reacts very differently when he knows that there are people with him, interacting with him, talking to him. She said that she couldn’t say that the movements of his mouth were actual speech – of course, also being aware that Pádraig cannot speak because of the trachea, even if he wanted to – but it was not too far away from clear communication attempts. She said that we needed to keep up hope: young people’s brains can do amazing things. She repeated what she had said earlier: we have time, not days or weeks, but months. And the best thing we can do for Pádraig is to share with him our belief that he will get much better than he is today.

That’s what you are all doing.

Thank you again to all of you for staying with Pádraig, thinking of him, praying for him, sharing your energy with him.

Please support the following events, friends of Pádraig are organizing (they are all listed on http://www.caringforpadraig.org/events):

29 January 2014       The Workman’s Club. Ceolchoirm do Phádraig/Concert for Pádraig. WithSeo Linn, Members of Kíla, and the Trinitones. Check out the event’s Facebook page for details.

31 January 2014       Table Quiz in Na Fianna GAA Club (St. Mobhi Road, Glasnevin, Dublin 9) on Friday 31/01/2014 at 8pm. Entry €20.00 per table (team of 4). There will be prizes for the top three winning tables and a raffle. Click here for details.

05 February 2014    Concert in Coláiste Eoin

12-13 April 2014      Snámh Phádraig

Thank you to the organizers, supporters, and you for making all this happen! Your work, energy, and compassion are very very much appreciated!

Today’s German Music Tip
Udo Lindenberg, Hinterm Horizont (1981) and Hinterm Horizont (2012). Two live versions of the same great song – thirty years apart.
What’s hot
Consultants really looking after patients
What’s cold
Consultants nowhere to be seen
The German word/phrase/verse of the day
Bio-dynamisches Leben

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

This is what heaven must be like: shower heads with 7 (seven!) different settings, for less than 13 euro. Just imagine it: you’re getting up in the morning, it’s around 7.20, the door bell just rang 5 minutes ago, the Rauchmelderwartungsdienstgenossenschaftskontrolleur already checked the smoke

Which of the seven ‘Strahle’ would you choose at 7am?

alarms so you can feel safe again, and now you step into the shower. But – which of the 7 possible settings are you going to choose? Normalstrahl, Massagestrahl, Softstrahl, Saunastrahl, Normal- und Massagestrahl, Normal- und Softstrahl, or Normal- und Sanastrahl? Since there are seven possibilities, would you go for one “Strahl” a day? Normalstrahl on Mondays, Massagestrahl on Tuesdays etc.? But what if, on a Tuesday, you’d felt like having a Softstrahl? Would you stick with your original plan, or would you just pick the Strahl no matter what day of the week it was? Maybe, you would not bother changing the Strahl at all? Ever? Just choose the one you like best, and stick with it? But, then you should probably not have bothered at all getting this Multifunktions-Duschkopf at all? I can tell you, even being (half) German, life in Germany is complex. Having a shower in the morning is just the beginning of an endless array of options, choices, decisions, etc. By the way, having a shower before 6:30 is NOT a choice: it’s not allowed by the Hausordnung!

Every evening, I am sitting here and write. I have met a lot of the people I imagine are reading this, most of them I only really met since the end of June of last year, very brief encounters in Iona Rd not counting. It’s a bit like a public diary. It’s supposed to describe a journey, from the acute hospital to early neuro rehab. The thing is: this journey is so painfully slow, that I sometimes feel like going round’n-round’n-round… in a circle. Not even going, not even a circle, just getting stuck. Of course, in the grand scheme of things, that is not the case. Even with the operations over the New Year, Pádraig has made progress. But because it’s mostly happening in very small steps, it’s sometimes barely notable.

The posters are back up!

Today, Pádraig was almost sitting up with his bed. They had put him on a little bit of oxygen (but no machine), and he is still on an antibiotic. We played around with his TV sets (he has two in his room!) and are going to try and connect a laptop, internet, and Irish TV to it tomorrow. (Yes – we will have to check any device we’er going to use first with the Medizinisch-Technischer Geräteprüfungsdienst just to make sure it’s up to spec and won’t cause a short in the hospital’s electrical circuits! We have been told  that this is just routine and really uncomplicated.) He is looking fine, opening his eyes, and reacting (still in a quite limited way). Tomorrow, we’ll have a meeting with the consultant to find out what the plan is for the coming weeks.

Someone not too long ago told me that this is a marathon, not a sprint. Looks like it’s a marathon that I just about manage to run: painfully slow.

Check out the article in this week’s Irish Times Health Supplement on Pádraig.

Irish Times Health Supplement (Wed, Jan 22, 2014, 09:00)

Today’s German Music Tip
Franz Josef Degenhardt, Befragung eines Kriegsdienstverweigerers (1965) – “Dies ist die Befragung eines Kriegsdienstverweigerer durch den liberalen und zuvorkommenden Kammervorsitzenden.” Most people who listende to this song thought it was a parody of the hilarious process conscientious objectors had to go through in up until Germany scrapped the draft. My jaws fell down to my knees when the “Kammervorsitzender” really asked me these questions, and with a straight face! Degenhardt was a cousin of the archbishop of Paderborn (my dioceses when I grew up), and lived just outside of Hamburg in Quickborn until his death in 2011.

What’s hot
Beds like armchairs
What’s cold
Choice
The German word/phrase/verse of the day
Kammervorsitzender

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

Lost in a space where I am amongst people never found. In a time that does’t count, anymore. On a journey that lost its beginning and its end, I feel so sore. There are people coming in and out who I see like shadows passing by; who I feel like pressure soft on my hand, my arm, my face; who I hear speaking in tongues I treasure like gems from a distance place; I want to be, on my way home. To myself, the world, that has not stopped to my surprise, that keeps on turning, that keeps important people thinking they need to do important things to succeed. When all you need, is love.

On my way home. Da da da dada da dam. Da da da dadada dam. I watched it last night, Jon (of Yes fame) and Vangelis (the synthesizer wizard who was to but never did replace Rick Wakeman as keyboard player in Yes). I found them on Youtube, I watched them thinking of the year, 1981, this song came out and played all summer long. It’s a strange clip, the one lad very obviously doesn’t play the ‘guitar’, the other definitely not the piano. Somehow we’re going somewhere. No question, I’m not alone. Somehow I’ll find my way home.

We got a phone call just after 2pm this afternoon from the UKE that they had heard at very short notice that they had a bed there for Pádraig. A bit more than two hours later, Pádraig was back in the Schön-Klinik in Hamburg-Eilbek. It was like a home coming. There were smiles on nurses’ and doctors’ faces. The Oberärztin staid late to see him and to say ‘hello’ to us. Everybody so happy that they managed to get him a bigger room, with two TVs, a desk, and – wait – a bathroom! The change from the corporate UKE environment to the Schön-Klinik felt was amazing. There was relief, very warm and welcoming feelings, and a sense that Pádraig was getting back on track on his road to recovery. As we were swopping stories with the people about the New Year and all of what happened, it was almost like being amongst friends. Pádraig’s visitor this week explained to one of the nurses (who doesn’t speak English) all about the Irish language, and the nurse kept practicing his Irish trying to say ‘Pádraig’ the Irish way, until he gave up. I think we need more teachers over here, so we can start our own micro-community, Germany’s one and only micro-Gaeltacht.

There were a few ‘firsts’ today: Pádraig was breathing on the ‘feuchte Nase’ without any air or oxygen support. It snowed for the first time this winter. And, at 07:15 this morning, we thought there had been a ring on our door – but decided we must have dreamt. Until the door bell rang again. Willy.tel had arrived to check our smoke detectors. Rauchwarnmelderwartungsdienst. No joke. They had laminated company iDs. No, seriously. The Genossenschaft is paying a company to kick you into action at 07:15 in the morning (for those of us living on Irish time: 06:15am) to come into your apartment, with a ladder and a pretend-iPad, to climb up the ladder (not that the ceilings are particularly high here, to the contrary), to take down the smoke alarms, to press the button, listen to the terrible sound they make, put them back under the ceiling, climb down under the ladder – and move on to the next room. I had to think of Officer Obie in ‘Alice’s Restaurant’ (remember Alice?) who had found the envelope under this heap of garbage with Arlo Guthrie’s address on it… Before they left, I had to sign a form, with the tip of my finger, on their pretend-iPad, and was then handed over a two-sided multicolour brochure which contained loads of pictures essential fire-safety tips like: Each time the alarm sounds, check whether there is a fire. I got it laminated and nailed it on the wall in our hall way. Just in case.

YES.

Today’s German Music Tip
Scorpions, Winds of Change (performed in 1991). Never said it would be just music in German. Scorpions are probably one of Germany’s most successful international acts. Almost 68m hits for this song alone:
“The future’s in the air
I can feel it everywhere
Blowing with the wind of change”
What’s hot
On my way home
What’s cold
UKE
The German word/phrase/verse of the day
Rauchwarnmelderwartungsdienst

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

There was a smell of breakfast coming up from the kitchen. You know what it is like: mouth watering. By the sound of things, it was going to be a hot breakfast. Pots and frying pans were involved. Definitely. When I went down, Pádraig was cooking. I said ‘hello’, and ‘how was it? Everything ok?’ to him on the way out to early morning swimming. We didn’t have time for more conversation, and I certainly had no time for breakfast. I was a bit late trying to get to the pool for 5am. Pádraig had just got back home after Tuesday night at the Condrah. Wednesday mornings became one of those regular occasions that we met. You could say it was a bit unusual, but then – Pádraig enjoyed going out, being with friends, and going to bed early in the morning after a great night out. And you could see and feel it watching him preparing his early morning breakfast how happy he was in himself. There was the odd morning I was wondering whether I should swap the early morning swim session with a late night out myself… Nights seem to be so much more fun.

With all these scares and operations over the past weeks, I didn’t have much opportunity to think about the early neuro rehab programme that we came here for. I have just been concerned about Pádraig being able to get over these lung troubles. His overall condition, his level of alertness has not changed much over the past weeks. I think I mentioned that he moved his arm across from the left to the right hand side of his body and turned his head around when a doctor said she was going to check the drainages a few days ago – a first! He still opens his eyes most of the time when people arrive to be with him. He squeezes your hand when you hold it and talk to him. It is really hard to tell how much he hears and sees and understands of what is going on around him. It seems that this also changes during the day, and from day to day. What is clear is that he has made tremendous progress since the accident. Although progress has been very, very and sometimes painfully slow, with loads of setbacks, he is clearly moving in the right direction. There have been no dramatic changes though, he cannot move by himself, he still has the tracheostomy, and he is still getting food using a PEG. Over the past days, he has been breathing mostly by himself using a T-piece through which humidified, warm air (with some minimal O2 content) is being blown by his trach. This is another first: no additional oxygen at all.

The nurse looking after him this afternoon had offered last night to cut his hair – she had studied the pictures of him and found that his hair was getting quite long, compared to the way he looks on the pictures. She also said that shorter hair was better as he is sweating quite a bit. We said we’d look for scissors – but, as it was the weekend, we arrived empty-handed. So she took matters into her own hands, located really sharp surgical scissors and cut his hair in style – like a professional barber would have done. Brilliant.

Tomorrow: they will place phone calls to Eilbek to see when he will be able to move back.

Today’s German Music Tip
Rio Reiser, Für immer und Dich (1994?) – Lead singer of Ton, Steine, Scherben, performing solo.
What’s hot
Haircuts with surgical scissors
What’s cold
Routine
The German word/phrase/verse of the day
Hintern Horizont geht’s weiter

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

She was so helpful! And I couldn’t believe all the money I was going to save by getting not just the internet, but also online TV, an iPad, and the family extra sims. How lucky I was to get all this before Christmas when they were just making all these savings available to a few select customers! I had spent two hours in the telekom shop, my head was spinning, and I was frantically calculating the exact amount of all the money I was going to save buying all this stuff. – Then, I don’t know whether it was exhaustion or suspicion or a combination of both, I decided I was just going to get the internet for our new home in the Forbacher Strasse and that was that. I decided not to save all these hundreds of euro by spending money on purchasing stuff we didn’t need, didn’t want, and could’t afford.

Durchzug

Why did this story come back to me, almost a month after it happened? Why tonight? Well, I just listened to the RTE news reporting that the CRC saved 1.4m euro by spending a quarter of a million on a retirement package, according to a former chief of the CRC. Amazing. – Although, I knew that something like this was coming. Because: the true scandal about the sad CRC saga is not that 233,333 santa bears had to be sold to pay for the 740k retirement package, but that nobody on the CRC board apparently thought that any of this going on was shameful. They thought they were saving money!

They live in the same world as James O’Reilly who says, and what is worth: probably believes, that you can cut out almost a billion euro from the health budget without this having any impact on the health services being delivered. – It’s breath-taking. Infuriating.

Pádraig is getting better and is well on the road to Eilbek. The nurse today remarked on “Was ist das bloß für ein langer Lulatsch!” – she had seen him for the first time and was trying to come to terms with his length. And I had a flashback to a time almost 40 years ago, when someone had called me for the last time “ein langer Lulatsch”. Words, like smells, music, or pictures can bring back memories you didn’t even know you still had them in a flash. We didn’t manage to talk to an Arzt today, they were all busy, but everything looked almost perfect: he opened his eyes when we arrived and seemed to take in at least some of what was going on around him. We left him with a friend reading (old) Irish poetry to him. When we came back he was at his most relaxed for a long long time. Incredible what old Irish poetry, read out by a nice, sympathetic voice can do to you! Forget about acupuncture or traditional medicine! No contest!

Unpaved food paths to make room for trees.

I went for another walk around the ‘barrio’ and took a few pictures: people doing ‘Durchlüften’ and ‘Durchzug machen’, ‘wie es sich gehört’; foot paths kept without proper pavement to make room for the trees; and adds for neighbourhood  social schemes. Germany the way the Germans don’t even see it anymore because they are so used to seeing it every day.

And then, tonight, again, ‘rush hour’ in the UKE at the end of the visiting time. If you ever were in Beaumont at 8pm, at the end of visiting time, you’ll remember the queues of people trying to pay for their parking tickets, trying to get on the bus, trying to get past all the other hundreds of people trying to get home. Germany is different.

Today’s German Music Tip
Hamburg, Atlantic, Alster, Udo, Die Bühne ist angerichtet, MTV Unplugged 2011. Egal – I like Udo Lindenberg.
What’s hot
Zen
What’s cold
Perfektion
The German word/phrase/verse of the day
Glückspilz, Lulatsch

Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

Your first name doesn’t match the ticket, Sir. The nice lady at Dublin airport told me when I was trying to check in for my flight to Sanya via Copenhagen and Beijing. I said that couldn’t be and asked her to double-check. There was little time left to check in. I had just made it to the airport. And I had to be in Beijing the next day to make it to the opera. She insisted. The ticket showed ‘Reinhard’ as my first name, whereas my passport showed ‘Pádraig’. She said I had to get a new ticket or try and change the name on the ticket I had. In any case, I could not fly.

I had been in a hurry to get my stuff together at home for my big trip to China, and I had taken Pádraig’s passport instead of my own. Rather than wondering why a person like I was trying to travel on the passport of a 23 year old, they just noted the different name. And – what about the picture in the passport? I decided that this wasn’t the time to go there. I rang Pat to go home, get my own passport, and try to get back to the airport.

There were a few more twists and turns, but eventually, I made it. I got to Beijing to the opera. I made it to Sanya. I gave my talk about Skyfall. Together with Chris, I won the quiz. Just after 1am I got the call that no parent ever expects to get, the call about the accident that changed our lives.

Tonight, I met Chris again for the first time since I left Sanya.

Pádraig was good today, they had removed the second drainage, taken the x-ray, done a bronchoscopy, and all looked ok – some effusions on the lung, some infected-looking secretions in his bronchi, but nothing to worry about. A dentist had been with him to organize a replacement ‘bite bar’ for his lower jaw they had lost during one of the too many operations. And they will ring Eilbek on Monday to see would they have a suitable bed to take Pádraig back.

The story about the passport remembered my of Pádraig always being worried about loosing or forgetting something. He was paranoid about it, and he had reason to be paranoid: stuff just kept getting lost.