Category Archives: EarlyNeuroRehab

Turner

11 Thursday Dec 2014

Posted by in EarlyNeuroRehab, Hamburg, North Sea

≈ 4 Comments

Tags

, ,

Loads of meetings and talks over the past two days. It is good to do ‘normal’ things though I wonder… For example, this morning I bought a coffee in the cafeteria in UL where my office is. It was €1.85. Going up to our meeting, I bought another coffee in the same cafeteria and I paid €1.65. The first was a ‘sit-down’, the other was a ‘take-away’ coffee. No other difference. Then I looked at the prices of stuff on offer. Remember, this is the university, most clients are students.

In case you can’t read it: Can of Coke €1.20; Smoothie €3.45; 7up €1.70; and – talking about water charges – a bottle of water for €1.70. The coke is cheaper in a corner shop, and the water is cheaper in the airport.

Then I bought the paper and got a brilliant Martyn Turner’s 2015 calendar with it for free. For each month, there is a cartoon, with a bit of an explanation underneath.

FullSizeRender

Underneath the cartoon, he writes that he was asked once to draw a cartoon for Christian Aid. Apparently, if all the multinational companies operating in Africa were made to pay their taxes their, there would be no need to pay rent. Turner connects this to Apple in Ireland…

Pádraig was good when Pat got back this evening. She told him a few funny stories, things that had happened here in Ireland. And for each of the four stories, she got a gerat smile. So, not only did he understand what Pat was telling him, he also still has his sense of humour.

It is great to be here, to see (or at least speak with:) our daughters, and just to be at home. But it’s also as sad as it can get. There is Pádraig’s room with is stuff. When I was cooking for us tonight, I could here the door to the kitchen being pushed open and a big guy coming in asking what was for dinner and when would it, eventually, be ready… How can he be in Hamburg, in a hospital, in a bed?

Nikolaus

06 Saturday Dec 2014

Posted by in ABI and early intensive neuro rehab, EarlyNeuroRehab, Hamburg, Uncategorized

≈ 2 Comments

Tags

, , , , ,

It’s all Martin Luther’s fault. Really. He decided that we should live without saints. Imagine. So he decided to move away from the Heiliger Nikolaus as the one that brought the presents and make that the job of the “Christkind”, baby Jesus, instead. And, apparently, when the Dutch went to the newly discovered continent across the big water, they brought Sinterklaas with them. After a while, he became Santa Claus. And we all know how Coca-Cola transformed him into this big guy in a ridiculous red dress and a white beard.

Today, we used the ‘blue cap’ to close Pádraig’s tracheostomy/cannula completely. He managed really well over several hours. We only put the ‘speech valve’-type top back on before we left in the evening. The fact that he can breath sufficiently well despite the cannula in his trachea, when the cannula is closed off, in my mind doesn’t leave any doubt that he could breath without it in his throat – and probably much better, because he would not have this constant irritation and, in effect, narrowing of his respiratory tract. We’ll keep at it. At least it would be worthwhile to try and see how he would manage without the tracheostomy.

And, with the ‘blue cap’, he finished a full yoghurt.

In the spirit of Advent and Sant Claus, multi-culturalism, and the idea of ‘otherness’, here is an ad from a Hamburg mainstream newspaper advertising the “Große Adventsaktion” during the weekends in Advent.

FullSizeRender

 

 

 

 

 

 

 

 

Whatever it is, it’s not an add for your traditional German “Weihnachtsmarkt”!

Today’s German Music Tip
G. F. Händel, Tochter Zion – if you want to practice German Christmas songs, here is one, with subtitles:)
What’s hot
Nikolaus
What’s cold
Coca Cola’s Santa Claus
The German word/phrase/verse of the day
Wer gutes tun will, muss es verschwenderisch tun. (Martin Luther)

TheGoodNews

18 Tuesday Nov 2014

Posted by in ABI and early intensive neuro rehab, EarlyNeuroRehab, Hamburg

≈ Leave a comment

You know, sometimes someone asks me ‘what did you write about last night?’ The truth is, in most cases, that I don’t remember. I don’t think it’s old age, but can’t exactly say why it is that almost the moment I finish writing this, it’s gone, disappeared from my memory. It’s like a half dream (remember the early morning half dream?), but a late night half dream. They are even more difficult to hang on to and to remember.

A few things happened today. We got the papers ready to register An Saol as a nonprofit charity. With a bit of luck, the paperwork should be filed with the CRO this Friday. Didn’t hear about the apartment yet.

On the corridor today, Pádraig’s doctor told me that he will be transferred tomorrow week to the UKE and be operated on Thursday. It’s good to have a bit of notice. It’s also good to get this done before December. Hopefully, this will be his last big operation, and the New Year will truly be a year of new beginnings.

Just thought about the idea of ‘good news’. Although sometimes I wonder whether the world isn’t just one big disaster with seriously limited people on the helm – by how many trillion did the G20 announce will they grow the world economy, already functioning mostly on loans and borrowing? – I have realised that every day, there are good news all around us. It’s the stuff that those songs are all about, trying to give you hope, trying to keep you upbeat, trying to make you see the ordinary things every day that are so incredibly beautiful: nature, the sun and the moon, and, first and foremost, people.

And it does not matter whether they are healthy or whether they are sick. Whether they are independent or wether they need our help.

http://www.amhrandophadraig.com

Lost

31 Friday Oct 2014

Posted by in EarlyNeuroRehab, Hamburg

≈ 2 Comments

images1Sometimes. Sometimes the days are so full that at the end of the day I wonder, in all honesty, whether it was just one, or whether it was two days that just past. There are so many people, so many places, so many things, that I wonder, sometimes, how they all could have possibly fit in to the one 24 hours that just past.

Pádraig was almost back to where he had been before the infection. Heartbeat, temperature, oxygen, all back to (almost) normal level. It’s really reassuring that the nurse who is looking after him these days really knows him well and knows us. Life could be much easier if we could rely on everybody as well as we can rely on her.

We had two visits today. One from a residence who wanted to see whether Pádraig could be admitted. He could. The other visit was from a Carer who wanted to see whether he could take Pádraig on when he leaves the hospital in January and moves in with us. He could. Now we just have to see how things are going to work out.

Pat got back today. How brilliant is that!? It’s when she is away that I realise how much I want to tell her every day, ask her, get her opinion, share with her what is going on. There’ll be another few weeks and then the travel back and forth will slow down a little.

imagesIt’s Halloween night today. In Hamburg. Talk about globalisation. It’s also Friday night. Maria was on her way to the Oireachtas tonight when I talked to her. Life goes on. Although I still wonder how this is possible.

I remember when I heard of Pádraig’s accident, when the reality slowly sunk in, I thought of Auden’s poem “Stop all the clocks, cut off the telephone…’ the world had just stopped turning, for me. For me. For the rest of the world not much had changed.

There are friends and family for whom the world hasn’t stopped. They deal with the reality of what has happened much better. And they take me along.

“So many people live within unhappy circumstances and yet will not take the initiative to change their situation because they are conditioned to a life of security, conformity, and conservation, all of which may appear to give one peace of mind, but in reality nothing is more damaging to the adventurous spirit within a man than a secure future.”

The reality is: there is no secure future. Never. The reality is: we all walk Into the Wild.

Fair

27 Saturday Sep 2014

Posted by in ABI and early intensive neuro rehab, EarlyNeuroRehab, Hamburg, Uncategorized

≈ Leave a comment

Yesterday at lunch time, I thought I wouldn’t go. Last night I still had my doubts. But then, late at night, we decided that I would get up at 4:45 and get that train to Düsseldorf to visit REHAB-CARE, according to the organisers the world’s largest fair on rehabilitation. So I went, a bit reluctantly.

German trains being what they are, fast and reliable (mostly), I got there so early that the fair was still closed. You could see what was going on even at the central station, and certainly on the tram going out to the congress center where the fair was taking place. I had not see as many wheelchairs in one place in my life.

There were long queues at the entrance and when the gates opened hundreds of people poured into the six huge exhibition halls. It was incredible. Everything from electronic eye trackers to bathroom equipment, from architects and specialised builders, to car conversion engineers, from accounting software to rehab furniture, from facilities to interest groups, stand-up beds, stand-up wheelchairs, racing wheelchairs, holiday homes and boats for people who need special furniture and access – you name it.

Here is a short video of just one corner of one hall to give you an idea of what I am talking about.

In between, I was talking to Pat who had staid back with Pádraig. He has been doing ok and has almost recovered from whatever happened to him yesterday. He is still in the hospital’s main ICU, most likely because they don’t move people around the hospital over the weekend, unless they really have to. He’s ok in the ICU but it’s deja vu all over again. Staff don’t know him (so they suction him for no reason, just because they do), they don’t know us so some are quite officious, play it all by the book, don’t account for the fact that we have been there for the best part of a year. What can you do? – Hopefully, it’ll be back to 2L on Monday morning.

I’ve put together a few pictures from today. The first one has nothing got to do with the fair, it’s of the main door of Starbuck’s in Düsseldorf’s Central Train Station. It’s really funny: they don’t really open, except for one day a week (!) – but then really long hours, as one coffee-seeking by-passer remarked.

photo 1

Here is a small selection of the incredible amount and variety of stuff available. Cars, wheelchairs, gadgets. There doesn’t seem to be anything, good German engineering wouldn’t be able to make.

Getting home really late. Tired. Loads of ideas and impressions. An Saol, here we come! Can’t wait to see Pádraig tomorrow!

Adiós

25 Monday Aug 2014

Posted by in EarlyNeuroRehab, Uncategorized

≈ 3 Comments

It’s almost midnight in Hamburg. One hour earlier in Dublin. One of our busiest days is coming to an end. We have not managed to take it all in, process it all, understand what it all means.

What a world it is that we live in… Not sure how you see things, but think about Ebola, hundreds of Palestinian children killed for nothing, ‘religious’ armies torturing and slaughtering thousands of innocent people, aid convoys invading a sovereign country. – Then I heard on the Irish news today that some people in government are thinking of bringing down taxes – while celebrities are poring ice buckets over each other’s heads in order to raise money to treat motor neurone disease. Motor Neurone Disease – you would have expected to be able to get adequate treatment for this. As we thought that people with acquired brain injury would have had a right to receive adequate treatment.

When Pat came in to the hospital this morning she found that Pádraig had been moved to a different room. She asked a few people why that had been done  – but she didn’t really get an answer. She was worried that it had to do something with his illness, but everybody said it hadn’t. And then, well, then, someone decided to tell us the truth: Pádraig had spent the last couple of days in a ‘private’ room, on the wing with the private room  – and the lounge! And now, it was time to leave and get back to the ‘normal’ room. It had been nice – but now it was a definite ‘Adiós’, and back into the public wing (of the same ward). Good thing he had at least a chance to experience how the other half is living,

We also had, for the first time, a conversation with the Chefarzt (of the station Pádraig has just left…)…

Viele Grüße, and good night!

 

Trust

09 Thursday Jan 2014

Posted by in EarlyNeuroRehab, Hamburg, Uncategorized

≈ 7 Comments

How easy life would be, if everybody was just like me. – Sounds like the first line of a poem, or, maybe, a song, right? I said that once to a colleague after a long and stressful conversation at work. Second line: If everybody was just like me there would be – no nasty discussions, or surprises, no cold aggression, in disguise. Life would be easy. For me. Then I said: on second thought, better leave things as they are and get on with people. They add colour to life and to the world with all their different moods, characters, and whatever else. It’s a little bit harder, and sometimes you have to bite your tongue, but: that’s life.

TrustI’ve been thinking about this conversation (and the first lines of this song) because never in my life before have I been so dependent on so many different people in such a short space of time. Literally putting my son’s life into their hands. I question what friends are doing, how colleagues react, and wonder whether I can depend on what they are telling me – usually about some really inconsequential nonsense. And here we are trusting complete strangers with our child’s life.

trust meTomorrow will be another one of these days of utter and complete trust as Pádraig will have yet another operation on his chest and lung. The third within the space of a little more than one week. Again, all routine stuff. They are going to remove encapsulated fluids and other ‘stuff’ from his lung that doesn’t belong there, and then, as a precaution and preventative measure, they are going to perform a pleurodesis, carrying out a thoractomy (opening the chest), followed by a pleurectomy (taking out outer pleural lining), so that the lung will adhere to the chest wall during healing.

All a bit complicated. If it works out as planned, it’ll help Pádraig to concentrate again on early rehab activities. We all hope, pray, and think that it will.

Today’s German Music Tip
Die Ärzte, Männer sind Schweine (1998). This is not the UKE Männergesangsverein, but what the Germans call a ‘Punk’ Band…
What’s hot
Visit to Pádraig – a nurse today said that she had not experienced anything like it in her whole long career.
What’s cold
Care-less-ness
The German word/phrase/verse of the day
Blind vertrauen
 

Trapped

21 Thursday Nov 2013

Posted by in EarlyNeuroRehab, Uncategorized

≈ 1 Comment

Tags

,

Cairde a chara

Last night, I collected Pat from the train station in Heide (yes, this is the city with Germany’s largest market square!). You’ll remember that we gave the little red Kia

Trapped and ready to ring 110

Trapped and ready to ring 110

Ferrari a break, as Pat went straight from the airport to see Pádraig and then took the train towards Dithmarschen. For a change, I was on time. And waited. Until Pat rang and asked me where I was. Turned out we were on opposite sides of the quite small railway station, me in the car and Pat – trapped in the Deutsche Bahn waiting room, having escaped from the arctic temperatures outside. When my engineering skills failed to open the automatic door, Pat and I decided we were not going to smash the glass but to ring 110 instead (that is 911 for the Americans amongst you). 10 minutes later, security arrived and opened the door. When we pointed out that this was something quite dangerous: a door that allows people in but then leaves them with no way out, the security man said: “Well, she shouldn’t have gone in there in the first place”. Right, we thought. In our innocent minds, we had expected an apology but now were getting a whole new perspective on things. You might find that doors open on the way in but are firmly shut close when you are trying to get out.

Today, Pádraig took a small step back. The microbiologists discovered traces of a bacteria or germ which required Pádraig to get back into isolation, and us to get back into our beloved blue gowns and mouth protectors. There is no clinical evidence of the bacteria, i.e., they don’t do any active damage at the moment, but the hospital is über-careful to contain any possible threats. It was easy for Pádraig to get into his bright new high-tech room – I hope we won’t have to call Deutsche Bahn security to get him back out, one day soon.

We are trying to tell the nurses and doctors what Pádraig can and what he cannot do, what he needs and what he doesn’t need. They haven’t figured out yet how Irish families work and still live under the illusion that they could fob us off telling us ‘stories’ when we represent a collective year of ICU experience by now. For example, there is no-one better than Pat to know when Pádraig needs to be suctioned, the nurse who didn’t believe this learned about it tonight. We give them another week or so, by then everybody will know much better where they stand.

This morning, we heard on RTE that the European Commission is bringing Ireland to the  European Court of Justice because it failed to implement the European Directive of the 48-hour-per-week maximum working time. The EC felt that this was not just unfair to doctors but that the practice was also putting patients at risk. Apparently, Minister O’Reilly, himself a doctor, didn’t understand what the fuss was all about as he had already clarified that the 2003/88/EC directive would be implemented in late 2014 – just 11 (eleven) years after it was published. – You wonder whether O’Reilly is capable of getting out of the trap of his protected life as a minister. Should we ring 110?

Le meas,
Reinhard

Today’s German Music Tip
Udo Lindenberg, Highlights of MTV Unplugged (2011) (Don’t be mislead by the ‘2011’, Udo is Germany’s oldest and original Rock Musiker who teamed up with some younger German colleagues to play some of his best music in the Hotel Atlantic in Hamburg just two years ago. I know all the lyrics off by heart:)
What’s hot
The no-Stau Autobahn
<6l/100km
LTE
Kilometres we have driven to-date (since Wed., 13 Nov): 2,074
What’s cold
Isolation
The weather
The German word/phrase of the day
Die wolln mir erzählen von Hamburg bis Laos, wo’s hier langgeht in diesem Chaos. (Udo Lindenberg in: Der König von Scheissegalien)