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~ Acquired Brain Injury (ABI): from the acute hospital to early rehabilitation – more on: www.CaringforPadraig.org and www.ansaol.ie

Hospi-Tales

Author Archives: ReinhardSchaler

Clock

07 Friday Nov 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

imagesKeep winding the clock. For tomorrow will be another day.

The day that is just about to finish has been good. Pat, Maria, and I were in the room with Pádraig, chatting away, having our talks, annoying each other, being normal, with Pádraig in the middle of it all.

This morning, I rang my ‘Genossen’ and while they couldn’t give me a definite answer, they were hopeful that this coming Tuesday they will be able to tell me whether we got the bigger apartment we applied for. For the time being, things look good.

This afternoon, we had another visit from the man in charge of the carers’ service who will most likely help us to look after Pádraig on a 24 hour a day basis once Pádraig leaves the hospital, probably early in the coming year.

Things are moving ahead nicely. By this coming Tuesday, we should have a good idea whether we will get this other appartment

There has been an interesting story reported in thejournal.ie on how the ‘system’ in Ireland caters for people with Acquired Brain Injury. It’s yet another story of pure tragedy. Check it out!

Vojta

06 Thursday Nov 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Pádraig had a double physio session today with a qualified Vojta therapist. At the end, the therapist was at least as exhausted as Pádraig. I went up early to the hospital to help (as much as I could) but mostly to watch.

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Not Pádraig and not the Schön-Klinik but a group of therapists during a Vojta workshop.

It is amazing how it works. He puts Pádraig on his chest with the right arm and the left foot up. He stimulates the foot and the arm begins to move. There is a point in his back that he presses and Pádraig begins to move his body.

I asked the therapist whether he himself had been at the receiving end of that kind of therapy and he said they practice on each other during tutoring sessions. He says that he jumps straight up into the air as those pressure points stimulates muscles you didn’t even knew that you had them. And that he gets ‘Muskelkater’ for days afterwards. But any back pain he might have had would completely disappear.

So Pádraig must be put under some pressure during those hour-long sessions. And what makes other people jump, gets him moving just about, just a little. But it gets him moving, makes him aware that he can move his arms, his legs, his body.

Later on today, we went out onto the roof terrace. It was ‘fresh’ but nice to be outside, breathe the air, listen to the trains in the distance (not too many today, the Deutsche Bahn is on strike, again;), hear dogs bark, feel the wind in your hair.

He had a nice vegetable-based (!) vanilla  yoghurt. Then a good old friend rang, we did the ‘Mundpflege’, the nurse positioned him nicely on his side, his heart went down to under 60 (not seen often!) and his oxygen levels better than mine.

Physically, he is getting better and stronger.

He just needs to improve a bit on his communication. And more of this Vojta stuff!

Eye

05 Wednesday Nov 2014

Posted by ReinhardSchaler in Uncategorized

≈ 1 Comment

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Last night ended with a long review of how our event had worked out and a dinner with some friends and colleagues. By the time I got to the hostel and had sorted everything out, like where to get the 4h28am bus to Trafalgar Square, it was almost 1h30am. I was so worked up still that I couldn’t sleep. I also had the room by myself (had been sharing the two previous nights), so there was no need to be concerned about leaving the lights on and tinkering about.

From Trafalgar Square, it was down to the Thames and as Big Ben struck 5, I was crossing the Jubilee foot bridge with a fabulous view across the river towards Big Ben and the London Eye. Coffee on the go, bus to Gatwick, EasyJet to Hamburg, S1 to Friedrichsberg and back to Pádraig.

I had been missing him and while Pat had been telling me how he was doing, that he had been coughing quite a bit, but had been very much awake with not just his right eye, but also his left one, open for very long periods, I needed to get back. The last few days felt much longer, there was so much going on, so many people, new ideas, plans, plans, how can I still believe in plans?

Today, Pádraig was sneezing, not coughing. As it was also a cold and wet day, we didn’t go out onto the roof terrace but staid in the room. He was moving his feet quite a bit today, his tongue, and he kept trying to make more controlled sounds. There are concrete plans for tomorrow, I believe, to change the catheter for one less intrusive and to lower the doses of anti-seizure medication. All good.

Tried to listen to Amhrán do Phádraig again but couldn’t anymore. Maybe it was just a dream last night that I managed to listen to the songs without having bought them?

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Wouldn’t this be the ideal, most beautiful and rewarding Christmas present ever?

Listen

04 Tuesday Nov 2014

Posted by ReinhardSchaler in Uncategorized

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Screen Shot 2014-11-05 at 00.30.06Our conference finished tonight and the anticlimax I always feel at days like this is taking over. Back at the hostel, I am finally listening to the tracks posted on the Dreamboat website – and what a web site it is! How beautiful, brilliant and full of energy and life the songs and poem are!

I must have been listening to it now for a dozen times or more.

It’s long after midnight. Listen.

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17

03 Monday Nov 2014

Posted by ReinhardSchaler in Uncategorized

≈ 9 Comments

Days merge into each other, there is no beginning, there is no end, it’s a continuum, when I let go it’s hard to tell what is real, what is important, there is no sense of space or belonging, just the need to go on, to not let go. There is no way to bring together and make sense of these days, to see or to explain what binds them together.

There is our event in London with lots of really interested and enthusiastic, but also slightly cynical with the I’ve seen all this before and I already know what’s going to happen next attitude who are in several places all at the same time on their phones, emails, social networks, and in this physical space and reality that becomes less and less important.

Combine all this with a lack of sleep, the phone call to Hamburg and the daily news about how Pádraig is doing, the occasional laissez-faire-overworked-I-can’t-do-more-than-I’m-doing-and-how-would-I-know attitude of people looking after Pádraig, the desperate hope for a miracle, the deep sadness, the realisation that the world keeps spinning ’round, man keeps making plans, God keeps smiling, while you walk down right deep deep down into the centre of the earth on Euston’s Northern Line, one set of steps after another, until you hit rock bottom, literally, then you think you are living the song you’re listening to about feeling like a rolling stone, ready to make a deal.

Pádraig had a good day today and was visibly delighted to see Maria coming over for a week to visit him. His doctor is going to decrease the medication he’s getting to lower the probability of seizures tomorrow. Once he’s sure that Pádraig’s infection is completely gone he’ll also change the catheter again and see whether a less invasive method can be used, hopefully lowering the possibility of infections.

imagesThere must have been something in the 1960s in Germany that made people think that 17 was the magic age. I’ve no idea why 17… but there is no doubt that these songs today would border on committing a criminal offence. Here is a selection. The set is worth watching as are the songs worth listening – if for no other reason as for the memories long gone or, if not because of the memories, then just out of curiosity for the unbelievable music of those years…

Udo Jürgens, 17 Jahr blondes Haar
Chris Roberts, Du kannst nicht immer 17 sein
Ivo Robin, Mit 17 fängt das Leben erst an (1961)

LonDon

02 Sunday Nov 2014

Posted by ReinhardSchaler in Hamburg, Uncategorized

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In London, for a second time this year.

This time it’s our annual conference which we are holding for the first time outside of Ireland, at University College London. It’s a bit of an adventure.

Internet connections are, again, pretty basic and it’s difficult to write this – not only because it is very late, but also because of the internet. It comes and goes. The event will go over two days and it’ll be off and back to Hamburg very early on Wednesday morning.

Briefly: Pádraig is doing fine. He was awake today for a long time, sitting outside, using the ‘bike’ – the works. I am sure he is, as we are, anxiously awaiting news from our ‘Genossen’ who will tell us this coming week whether we were the lucky ones to get one of the new apartments or not.

Tonight, I had a conversation with one of the people attending who told me about ‘the secret’, a book that apparently has changed many people’s lives for the better. I haven’t heard about it, but will check it out. Who knows…

Here are two German songs I came across over the past few days. In today’s world, they are almost racist. In the 50s and 60s that thought would never have crossed anybody’s mind.

Vico Torriani – Du Schwarzer Zigeuner (1953)

Conny Froboess – Zwei kleine Italiener (1962)
Großer Streit um ‘Zwei kleine Italiener’ wrote the German paper Das Handelsblatt in April – this song was the 1962 German entry to the Eurovision Song Contest and now GEMA, in an attempt to protect the rights of the singer and writer and publisher, was trying to get YouTube to remove it from their site. Luckily (for us) they failed. But it gave the song a whole new life and great publicity! It was the first time that the topic of “Gastarbeiter” was raised as a social issue.

Good night!

Amhrán do Phádraig / Song for Pádraig

01 Saturday Nov 2014

Posted by ReinhardSchaler in Uncategorized

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The Dreamboat floats!

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How much would Pádraig have wished to be there at the Oireachtas! Can’t wait to hear the poems, songs, and music. We were looking down the Alster, the Elbe, the Wandse – but there was non sign yet of the Dreamboat. It must still be on its way!

Today, it was 19o celsius in Hamburg and a fine day on the roof terrace. We’re sure Pádraig moved his head to say ‘no’ to a question today, another first.

If we count them all up, those firsts, they must fill a mountain of hope, they must weigh so heavily that one day they will have to push open that door that is still closed most of the time.

I’ll be getting up tomorrow at 4h45 to catch an early flight to London for our annual conference (work). Still a lot of work to do to have everything ready for Monday and Tuesday. Back on Wednesday.

Still thinking of the Midnight train to Georgia.

Lost

31 Friday Oct 2014

Posted by ReinhardSchaler 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.

Storm

30 Thursday Oct 2014

Posted by ReinhardSchaler in Uncategorized

≈ 6 Comments

Screen Shot 2014-10-30 at 17.26.00‘Gonzalo’ sounds mediterranean, or at least Spanish-speaking and from the Caribbean, maybe. Warm, anyway. Well, this Gonzalo was a storm which hit Europe and caused the first snow fall in the south of Germany.

Who would ever have thought last year that Pádraig would still be in hospital today? When snow starts falling? Who would ever have thought that there would be another cycle, that we would start doing again what we did last year? Looking for carers and therapists (outside of the hospital setting this time), and looking for a place to live (this time with Pádraig). If all works according to plan, there might even be another few trips to IKEA on the cards. In the “it-couldn’t-be-a-smaller-car-than-this” Picanto.

Pádraig’s doctor and then his senior doctor both talked to me about Pádraig’s slight setback of yesterday today, which coincided with yet another doctor going ahead with a scheduled procedure (changing the catheter) while the one of the former was planning to try out a less invasive method again as we had agreed. My father would have said “wenn man nicht alles selbst macht…” – you really have to do it all yourself if you want to be sure that things are done as they should. Why, why can we not did it all ourselves?

The truth is – we can’t.

So Pádraig is on an antibiotic, the first time in three and a half months. He is on a higher dose of an anti-seizure drug again (as one of the side effects of the antibiotic is an increased risk of seizure). He got a fever (which has thankfully come back down today). His heart rate went up considerably (also down again). And his oxygen levels went down to a point were he needed additional oxygen for the first time in a long time, if only for short periods.

Wenn man nicht alles selbst macht.

If you’re living near Rhode, Co. Killeens Fancy Dress (2) copyOffaly, and want your kids to have a great fun-filled Halloween afternoon, please support the Kiddies Disco organised in support of Pádraig for tomorrow afternoon by Andrea Stone and her family and friends.

They are doing an unbelievable job for someone who shared a hospital stay with their son and nephew last year. We are so happy that Arthur has fully recovered in the meantime and is back in college in his final year, and also out and about again with his fabulous band Ruaile Buaile. Listen to them playing This is the Life.

And you’re singing the songs
Thinking this is the life
And you wake up in the morning and your head feels twice the size
Where you gonna go? Where you gonna go?
Where you gonna sleep tonight?

You’re singing the songs thinking this is the life. This is the life… Thinking… Singing the song…

Screen Shot 2014-10-30 at 17.51.55This coming weekend is the weekend of the Oireachtas, probably the biggest and most important date in the Irish language calendar. This year, there will be a table where Pádraig’s friends will pre-launch (and sell) the Dreamboat CD with music, songs, and poetry they recorded over long days, nights, weeks, and months for him. I haven’t heard it yet, but I’m sure it will become Christmas No. 1. It’ll take over the charts in a storm as Gonzalo took over the South of Germany. I know that because we will make it happen! We will.

Today’s German Music Tip
Heintje, Ich bau Dir ein Schloss (1969) – How could I have forgotten about Heintje? He was my mother’s superstar and I (like many other boys of my age) were just going to turn out as ‘lieb’ as he did. Watch the ‘Kleinbahn’ – it could be the one in the Westfalenpark in Dortmund that we were allowed to board on really really special occasions. It was an expensive special treat. Can you imagine?
What’s hot
Taking life by storm
What’s cold
Trying to do it by yourself
The German word/phrase/verse of the day
Mensch, haste noch alle Tassen im Schrank?

Bahnsteigkarte

29 Wednesday Oct 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Not taken by me this picture of an authentic Hamburger Bahnsteigkarte!

Not taken by me this picture of an authentic Hamburger Bahnsteigkarte!

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Tonight, at S1 Friedrichsberg: “Entry only with a valid ticket or Bahnsteigkarte!”

I thought they didn’t exist anymore because I had not seen them for a long term. They became famous internationally when Lenin (remember him – he Germans send him to Russia on one of their fancy trains to start a revolution) said many years ago that the first thing German would do if they planned to start a revolution in a train station was to buy one. I am talking, of course, about the Bahnsteigkarte. It doesn’t entitle you to travel anywhere, but you are allowed to enter the train station and the platforms in that train station.

Without one, you’re not allowed even to enter the station.

Where but in Germany?

Today was a good day, because Pádraig had two visitors on the one day. I am sure he was delighted to hear some other voices, and see and feel their presence. The two previous days, he had had another visitor. It really is unbelievable to see how after such a long time, his friends remain loyal to him, visit him, tell him what’s going on back in Ireland, keep him in the loop. This is really really special and something I admire immensely.

Today was a bad day, because it turned out that he has an infection which has to be treated with an antibiotic, most likely an infection of the urinary track, to do with the catheter which still has not been removed. We thought it would be and when I asked whether there had be a change of plan no-one knew. I’ll find out tomorrow, I hope. Pádraig also coughed up some green stuff which had to be suctioned orally, irritated him, and make him throw up a bit. He’s also getting an increased dose of anti-seizure medication again and a lot of water. It sounds and feels like a deja vu. Why is all this happening, again?

Checked out a new building project which my ‘Genossen’ in the ‘Genossenschaft’ are finalising. We’ll apply for one of their new apartments with a balcony and a slightly bigger layout in general. We should know in a week or two whether we were successful. Fingers crossed.

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