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

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Tag Archives: padraig

Island

14 Sunday Dec 2014

Posted by ReinhardSchaler in Uncategorized

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John Donne, Kieran Hanrahan, No man is an island, padraig

photoTwo eyes open and a big smile. Pádraig enjoyed that phone call from his aunt and sister today. The bit with the second eye open doesn’t happen that often; it hadn’t happen for a while…

I suppose John Donne wrote ‘No man is an island’ because, at least at some stage, that’s what he felt like. It became such a famous poem and even a saying because there are so many people who can identify with it. Have you ever felt like an island, entire of yourself, and not part of a continent?

Life is such a strange thing. On one hand: at the end of the day, it’s always just you. On the other hand: we only exist in community. And we swing back and forth between these two extremes. Love is like that. Family is like that. Friends are like that.

Pádraig had a good day today. We started to try out lunch. Ok, it was vegetables and a bit of chicken, pureed, though not like mash, with small bits and pieces. I was worried because when we had tried that before, some weeks ago, it didn’t really worked. Today, Pádraig almost finished the content of a small jar. It was really, really good. He was eating it well, ‘chewing’ it a bit, and swallowing really well. We went out onto the roof terrace. Twelve steps. In each direction. Up and down. Today, with a bit of day light, as the sun was disappearing on the horizon. You can see the horizon from the 5th floor. You can hear the train in the distance. A dog barking somewhere down below, amongst the trees.

Not that I knew, but this must be like what prison feels. Twelve steps up. Twelve steps down. For about 30 minutes. Listening to sounds somewhere in the distance that, for whatever reason, you can’t get closer to you. When was the last time that he was close to a dog, a train, a child, …?

No man is an island.

I hope you were listening to Céili House on RTÉ Radio 1 last night, with Kieran Hanrahan! It was listeners’ choice last night and Kieran played ‘Dreamboat’ from ‘Amhrán do Pádraig’, reminding his listeners that ‘Schaler’ had been on the programme some years ago. (They actually found that programme in the archives and are sending it over to us! – Thank you so much!)

We have been listening to Céili House for years on Saturday nights in a small cottage in Leitrim, in what Pádraig called ‘the middle of nowhere’. It’s the kind of programme that really and absolutely completely relaxes you, makes you feel at home straight away, and requires an open fireplace, with wood and turf glowing and slowly burning away.

No man is an island.

In case you missed it last night, here is the link to the full programme. And here is the link, if you just wanted to listen to Kieran’s lovely introduction at the beginning, the song itself, and then Kieran’s really nice remarks after he had played the song.

https://hospi-tales.com/wp-content/uploads/2014/12/audio-10.wav

In the end, we’re all involved in mankind. We are in this together. Which is what gives us the strength to get through the difficult times. Which is what gives us this immense happiness in good times. Whatever happens, and no matter to whom it happens, it always happens to us. That is why we care. No playing politics. No return on investment. No profits. No country for profit. No giant tax free zone for multinationals. No tax cuts to buy votes. No man is an island.

We care. Because we never send to know for whom the bell tolls; it tolls for me, for you, for your brother and for your sister, for your mother and for your father, for your partner and for your friend. Dreamboaters. Together. For each other.

Separation

09 Tuesday Dec 2014

Posted by ReinhardSchaler in Uncategorized

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Hamburg, padraig

We separate for you! (So you don’t have to do it yourself.)

I am on my last trip away from Hamburg and Pádraig before Christmas. There will be a family visit tonight (probably over by the time I manage to send this), a very very very early drive across Ireland to the West, over to Limerick at lunch time, overnight stay there, back to Dublin in the evening, and back to Hamburg on Friday. (Just took a deep breadth when I finished writing this list. It’s longer than I had thought.)

We went to see Pádraig this morning before we left for the airport. He had been with a couple of therapists and they could not get over how alert he had been: movements and reactions all as per their requests. It was one of his really good days.

Handy: The Germans separate for you - at Bremen airport.

Handy: The Germans separate for you – at Bremen airport.

Tomorrow will be one of the very rare days when neither Pat nor I will be with Pádraig. We’ll be separated, in a way. But one of his sisters will be with him, and Pat will be back a day ahead of me.

It’s just after midnight now, time to go to bed. But before I go, I wanted to just mention that in between a hectic, long day, tonight I met with one of Pádraig’s great friends from whom I collected some of the CDs. When I write from Hamburg, I think about and feel the friendship and energy, and I know Pádraig does. However, being in the company of his friends is a completely different kind of thing. And I can probably not even just imagine, how that would be for Pádraig.

And two very last notes on what has been on the RTE +1 channel – we missed most of the report from that ‘home’ for people with disabilities, but watched the discussion. What the RTE investigative unit discovered was called by the reporters assault. – What would you call ‘treatment’ that leads to dislocated shoulders, haematoma, dropped feet, and spasms? I’ll stop here and go to sleep. It’ll be another day tomorrow.

Head(s)Up

05 Friday Dec 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

Tags

Hamburg, padraig

I visited my mother this morning. She didn’t stop asking for Pádraig. How he is, whether he understood what we are saying to him, whether he can move, how strong his voice is… She stopped every nurse passing by (and there were a few of them) to tell them that I was her son and that my son was very sick in a hospital in Hamburg. We spent a few hours together and we talked about Pádraig. Going over the same questions again and again. Memory doesn’t get better with age.

Seeing your parents get old and fragile, not being able to help themselves anymore, when they had, all their lives, helped you with anything you had ever asked them for (and sometimes with things you hadn’t ask them for:), seeing your parents in such a situation is terribly sad and breaks your heart.

When I had to leave her to drive back up to Hamburg, I wasn’t myself. I couldn’t be because I would have been too upset. I switched off. For self-protection.

Back in Hamburg, Pádraig was doing well.

I know, I know, you have been waiting for this for a long time: there was another “first” today. During the physio session he managed to hold his head up for a minute or two, without any support. He was sitting in the bed, with a physio supporting his back, and another moving his legs when, all of a sudden, they noticed his head – and almost couldn’t believe what they saw!

A bit like Santa coming early this year. In fact, there were a few of them on their motorbikes coming down from the North pole riding South, with Mrs Santa on the back seat. I’d say they’ll take the ferry to Ireland from France, so they should be there in time for Christmas!

Sailing

03 Wednesday Dec 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

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Dreamboat, padraig

Let’s sail and have some fun!

As the Dreamboat is being launched tonight, Pádraig is listening to the incredibly beautiful songs, the music, and the poetry his friends put together for him.

Tonight, he is back on the ‘old’ canula (so that we can hear his voice), he doesn’t need any more oxygen, tomorrow they’re going to take him off the antibiotics he got after the operation (just in case), the swelling on his skull is receding, and on Monday they’re going to remove the stitches.

Over the past days, there have been uncountable tweets about the #dreamboat and #AmhrándoPhádraig, song for Pádraig. People have been traveling from Europe and all over Ireland (even from Dublin’s South Side, I heard!) to get to the Grand Social on the River Liffey’s north bank for the mother of all album launches this side of Christmas.

The Irish Times reported about it.

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The Herald reported about it.

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It made it to the front page of Seachtain

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And Newstalk had a special feature on it.

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And there have been tweets, re-tweets, FBs, LinkedIns in their hundreds from people and friends from around the world who are with you, the Dreamboaters, tonight in the Grand Social.

To be honest, I have no idea what is going on here. Ich passe. Whatever it is, I’ve never seen anything like it ever before, even in my wildest dreams. (Maybe it’s because I doubt, even when I’m dreaming:)

Lights! Action! – Get onto the Dreamboat. We’re all Dreamboaters. We’ll keep going. And on the way, we will always care for each other, no-one will ever be on their own no matter what and no matter where, and – we will have some fun. Mar an fear a bheadh féin a bhí. Dreamboaters, ahoi!

Amhrán do Phádraig / Song for Pádraig

01 Saturday Nov 2014

Posted by ReinhardSchaler in Uncategorized

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padraig

The Dreamboat floats!

Screen Shot 2014-11-01 at 11.18.12

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.

Sore

28 Tuesday Oct 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Tags

HSE, padraig

This morning, Pat and I met with a physio working in our local HSE clinic. She told us about the physio that would be available to Pádraig in the community services in Dublin. Pádraig would get a few physio sessions, about 15-20 minutes each, and then they would coach the carers in some physio routines. The carers that would come about 3, maybe 4, times a day to our house. When we asked her, she told us that there is not one physio in the HSE community services specialised in neurology. Not one. Ni uno. Nil. We also asked about equipment such as the viva el MOTOMed. The HSE has them. And there is a chance we would get it. For about three months. Then it would have to be passed on to other people. We didn’t ask how long it would take for it to ‘circle’ back to Pádraig.

Later in the morning, we met an architect to discuss what would have to be done to our house to accommodate Pádraig’s need in relation to a bath and bedroom facility; how to go about to build it. It’s going to be expensive. And it’s going to take time. Nothing decided. Just exploring.

After a rush to the airport, the tram, the train, the S1, I was back with Pádraig who had a friend visiting him from Dublin, which was really nice. I know and understand by now that it must be difficult at times for old friends who see Pádraig only from time to time to deal with the new situation. That’s why I, and I am sure Pádraig, appreciate it so so much that they all keep visiting, that they stay in touch, that they are with him, telling him about what they are doing, what has been happening in their lives. It must be so encouraging for Pádraig to here these familiar voices and see those familiar faces!

His nurse was so nice to offer her help to sit him into the wheelchair; he then also had some time for the MOTOMed – not that much altogether, but sufficient to get a break from the bed.

When we were leaving the nurse that had talked to Pat about the cap for Pádraig’s speech valve came over and said she hope that Pat had not taken it in a bad way. Of course she had not. It’s just the stress of having to deal with such situation that are, of course, not and never intended to be that way. It was such a nice and genuine gesture to come over and talk in such a nice way about such a difficult situation. Fair play.

I am still so sore, tired, and exhausted. I put the marathon medal (yes, I got a medal:) over Pádraig’s bed and repeated to him that we had a deal going on here.

My and our thanks again to all who raised funding for Pádraig via their participation in the marathon! You did well (Ciara ran under 4 hours!) and raised hundreds of euro – so did Donal! Well done to the two of you!

I thought that I should set up a sponsorship to my run : one euro for every minute I ran  – the only way to outperform, maybe, Ciara and Donal.

Scratch

19 Sunday Oct 2014

Posted by ReinhardSchaler in Uncategorized

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Ford Anglia, padraig, yellow moon

In the middle of nowhere…

Leaving behind us the alien, foreign city of Dublin
My father drove through the night in an old Ford Anglia,
His five-year-old son in the seat beside him,
The rexine seat of red leatherette,
And a yellow moon peered in through the windscreen.

UnknownThis is the beginning of the Irish poet’s Paul Durcan poem “Going Home to Mayo, Winter, 1949“. Pat heard it this morning, or a reference to it, on the radio. She told me about it and how it reminded her of me about to bring builder’s supplies, cement, tiles, to this really really really run down stone cottage we had bought (after Pádraig had spotted it in ‘Buy and Sell’ pre-internet time, remember pre-internet time?), lost on a bit of soaking wet land in the middle of lovely Leitrim. It was after work, in the winter, it was raining and dark, and Pádraig decided that he wanted to come with me. When we had passed all the towns and villages, Mullingar, Edgeworthtown, Drumlish, and Lake Keeldra (affectionately known as Cloone Swimming Pool), when there were no more villages left, just a very bad, very narrow, very dark, and very wet country road, when the bottom of the completely overloaded car hit the road hard each time I had missed to spot a pothole (and there seemed to be millions of them), I remember that I heard this voice of young Pádraig beside me, asking:

“Papa, is this the middle of nowhere?”

It was.

Today, his nurse told us that his colleague had told him that Pádraig during the morning being-washed-routine had lifted his right arm over to the left arm, had scratched himself, and had moved the right arm back to its original position beside his body in the bed. Had we seen this before? – No, we had not. But here is to another first!

How good it is to hear about good, exciting progress like that. Not to hear about, for a change, another step back, being put on panic station, making you feel like as if you were, right in the middle of the city of Hamburg, moving through the middle of nowhere, with just a yellow moon peering through the window.

Conformance

29 Monday Sep 2014

Posted by ReinhardSchaler in Uncategorized

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essential services, Henry Ford, ireland, Irish government, padraig

imagesSystems work best if they are standardised, processes are predictable and can be planned, if there is nothing out of the ordinary. Henry Ford said that his customers could have their car in the colour of their choice, as long as that was black. Take it or leave it. Most systems don’t tolerate divergence very well – whatever doesn’t fit in is rejected and disposed of. This is true for industrial systems like conveyor belts, it’s also true for many social systems.

Today, the Financial Times reports that Apple will be accused of prospering from illegal tax deals with the Irish government for more than two decades when Brussels this week unveils details of a probe that could leave the iPhone maker with a record fine of as much as several billions of euros.

Preliminary findings from the European Commission’s investigation into Apple’s tax affairs in Ireland, where it has had a rate of less than 2 per cent, claim the Silicon Valley company benefited from illicit state aid after striking backroom deals with Ireland’s authorities, according to people involved in the case.

I wonder – will there be a fine imposed on the Irish Government too who allowed the world’s richest company to pay less than 2 per cent tax, when, at the same time, the health services budget was cut by hundreds of millions of euro to a point where some essential services could not be delivered anymore? When health officials justify non-delivery of essential services, like neuro-rehabiliation, by saying it offered a bad “return-on-investment”?

photoToday, a prime example of non-conformance arrived in the post. It came with a recommendation. Pádraig would love it. Stuff about his city. Dublin. Real, true Dublin. It also came with a health warning. There would be the occasional non-printable word. The CD, the letter, both nicely wrapped in a padded envelope wasn’t the first package that arrived from this friend of Pádraig’s who is making sure that he won’t get bored but will be able to listen to first-class music, and now stories from his town, his country.

Back on the ward. It’s strange to feel almost ‘at home’ in a hospital room. Though – the ‘almost’ is important here and it makes a big difference. I learnt a lot about what the concept of being institutionalised means in practice and I know that it’s not something to aspire too. It’s probably easy to agree to this but one thing is to think about it or to imagine it, the other is to experience it. Institutions have this tendency to suck up anything that has got to do with the individual, digest it, and spit out conformant and standardised people, attitudes, and practices. ‘Take it or leave it’ is another aspect of institutions, because, although you hope at times, you will never be able to change them (easily).

Pádraig is still receiving high doses of medication to prevent a re-occurrence of what the doctors called seizures from last Friday. He also seems to have the symptoms of a light cold. So today, we didn’t go out onto the roof terrace, though it was a lovely day. Tomorrow, I hope to hear from his doctor what his strategy in relation to the medication is. Pádraig never took any medication, apart from Lemsip Max. The stuff he’s getting now is ok to deal with what happened, but, I imagine, wouldn’t be anything one would like to consider over a prolonged period of time.

At the fair on Saturday, I made a lot of contacts with companies who said they’d be delighted to send a rep along to check whether their stuff fits Pádraig. Some of them were almost as interested as we are to find out whether a 2.04m person can use their things. Hopefully, they’ll start making contact later in the week, and we’ll be able to arrange something for the coming week. Even if we won’t be able to buy some of the aids straight away, to have it all tried here is a great opportunity.

Today’s German Music Tip
Desiree Klaeukens, Kompliziert.
Der Mond glüht
als würde er gleich explodieren…
Ich sag dir was falsch ist
sag mir
ob es stimmt.

What’s hot
Yourself
What’s cold
Conformance
The German word/phrase/verse of the day
Schlawiner

Action

23 Tuesday Sep 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

Tags

padraig, Reeperbahn, Weihnachtsmarkt

photoThey have arrived. And they will be playing the Schön-Klinik Veranstaltungshalle the day after tomorrow.

I’m talking about the Irish band Pickville. Haven’t heard of them? Neither have I:) – But: I found a clip on youtube (597 views) from their gig on the St. Pauli (that’s where the Reeperbahn is) Weihnachtsmarkt three years ago. It’s not bad but it’s not really so Irish, I would say – with all due respect:)

I think I mentioned that we had a meeting with Pádraig’s doctor yesterday. Well, he didn’t loose any time. Real German efficiency. This morning, the dentist apparently called in to take an impression for a new tooth guard (the old one is broken). The urologist called in to change the type of catheter Pádraig has from the ‘standard’ one (quite intrusive and prone to cause infections) to another one which will also allow his bladder to function in a more normal fashion again, we hope. And if that wasn’t enough, he started him on an additional, new drug to see whether that will make a difference in Pádraig’s responsiveness. Apparently, it’s a kind of drug that can show good results in the early days after a brain injury. It’ll be gradually increased over the next 3 weeks. We’ll see how that will work.

There must have been quite some action in Pádraig’s room today, because all these doctors also had to work around quite a bit of therapy that was going on at the same time.

Screen Shot 2014-09-23 at 19.34.27Talking about action: I got some pictures from my ‘run’. Everybody gets these. They want you to buy the high-res versions. Looking at them, I wonder what on earth I’m doing wrong? You know, I’m doing this, I’m doing these runs to have fun, yes! To challenge myself, to push myself beyond my normal limits, to keep fit – all those things and more. Here on the left is what I would consider the ‘best’ of the pictures they sent me: does that look like as if I was having fun? And you don’t really want to see the other pictures. They should give them to me for free because – who in the world would ever even dream of *buying* such images of misery?

Today’s German Music Tip
257ERS: HIP-HOP AUS DEM POTT Three rappers from Essen-Kupferdreh in the “Kohlenpott” (another word for Ruhr Valley) performing at the 9th Reeperbahnfestival last weekend, with their one and only ‘musician’ who, as they say in the intro, doesn’t do much more than pressing a button. The by-text says that their texts are full of humour. Maybe I wasn’t listening closely enough:)? You can listen back at some of the other concerts from the weekend here.
What’s hot
Reeperbahn
What’s cold
Essen-Kupferdreh
The German word/phrase/verse of the day
Wat is!?

No. 10

07 Sunday Sep 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Tags

Eoin Gaffney, Leinster Open Sea Committee, padraig

UnknownA number of nurses told us over the past weeks that in their many years of work, some of them have been doing this job for over 20 year, have never experienced the level of visitors and care from family and friends as they have seen it in Pádraig’s case. The incredible part of that is that they only know half of it. Even more incredible is that there is so much more on its way: some we know about, other things we don’t know about yet and would not even expect. There is a spirit of love all around Pádraig that has carried him across the abyss and that is keeping him going.

imagesJust realised that Pádraig is now residing in No. 10 (the room number) – the irony will not be lost on anyone who knows about Pádraig’s love for the Irish language and culture. Maybe there is some magic going on here, some kind of a power deal?

He was well today, and while there are no dramatic signs of the effect of the drugs (!), we believe that he seems to be a little bit more awake. His eye is open for longer, even when we go out onto the roof garden, and he seems to be slightly more alert than he was before. We heard the same from one of his nurses today, though I think it’s still early days.

Tonight, we received the following email from Eoin Gaffney of the Leinster Open Sea Committee – a really moving example of what I meant when I said that the nurses really have seen not even half of what is going on, how Pádraig has been moving people:

cropped-hs58Good Evening All at Caring for Padraig

We got the sea swim off yesterday and we had about 85 swimmers or so.

Because the Ladies’ harbour was on today the number of ladies was down however many people who did not swim have made a contribution

I do not know exactly at this stage how much we made but hopefully we will have a final tally later on in the week.

I would greatly appreciate if you could send me on a JPEG (picture of Padraig) that we could post on our facebook page.

Many people have heard Padraig’s story and were trying to place him.

I hope everything is going well for you and again if there is anything we can do we would be delighted to help.

Mary Drumm copied in on this email must be mentioned as she was very much a big supporter of this cause.

Kind Regards

Eoin Gaffney

On Behalf of the Open Sea Committee

Thank you Eoin, thank you Mary, thank you all of you who were on Killiney Beach yesterday! How much we would have like to be there with you!


PS: Please keep voting for Hospi-tales! http://www.blogawardsireland.com/best-blog-post-2014/


 

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