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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

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Blogawards

12 Tuesday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

An SaolAbout eight years ago, Pádraig started An Saol, a blog and podcast using the amazing possibilities of the internet to enter into a conversation with the rest of the world, in Irish. He made friends through his blog and got in touch with people in places he hadn’t even heard of before. He got a logo designed, for half nothing, by an internet logo design discounter, and he put that logo on t-shirts, fridge magnets, and mugs.

And then, someone nominated his blog for the Blog Awards.

What had been a passion became an obsession. He really could not believe what was happening. To him! There were people out there, people he had never met, people who spoke Irish, people in all sorts of different corners of the world, who were interested what he was writing and talking about, who thought that An Saol was great, who had nominated him for the Best Blog Award in the Irish Language category. He got everybody to vote for him, checked out the competition, bought a ticket for the award ceremony, but then didn’t win a prize. He thought that he was probably too young, that they hadn’t taken him serious enough.

Padraig RTEFor Pádraig, this was the beginning of a ‘career’ in broadcasting in the Irish language. He moved on from the ‘studio’ in his bedroom to real studios in Raidió na Gaeltachta, Raidió Rí-Rá, and Raidió na Life. I started to listen to Irish Language radio, though I didn’t understand a word. Then I began to recognise some words, eventually I could guess what he was talking about. His excitement was contagious. And the highlights were interviews. Imagine, he was interviewing people live on the radio – and they took the time to talk to him! It was pure magic!

Pádraig today was grand. It was a bit of an ordinary day. For the first time in ages it was raining outside, so there was no question of him going out. He continues to eat ok (a few spoons of finely pureed hospital food and yoghourts), we lift him out into the wheelchair for a few hours, do some exercises, and block his tracheostomy for a while to get him used to breathing in and out through his mouth and nose. He is receiving extra therapies to try and strengthen muscles in his core and neck. The idea is to get him to a point where the tracheostomy can be removed for good. What a day that will be!

Today, I got almost carried away myself with the Blog Awards. Hospi-tales is now at number eight. It it stays amongst the top ten, it’ll be short-listed and judged by a panel. The voting will go on for several weeks and you can vote every week. So – please keep up your support and, as importantly, keep asking your friends to give us a vote every week, and get your friends’ friends to mobilise their social networks!

Wouldn’t it be great if Pádraig’s blog got the prize this time around?

Finally, remember to keep the date for the poker night for Pádraig (23 August) and, if you like swimming in the open sea, the date for the Sea Swim for Pádraig (06 September)!

Rumpelstilzchen

11 Monday Aug 2014

Posted by ReinhardSchaler in Uncategorized

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imagesThis morning, I spent a bit of time writing up some thoughts about the accident. Doing what I do (or should be doing:), I did a bit of research and found this book about “City Cycling”. It’s a book of edited articles, one about “Cycling Safety”. For various reasons, it’s a really interesting article that says, amongst other things, about cycling accidents: The language of injury causation is often distorted, with a tendency to blame the victim. They say that what could be considered ‘normal behaviour’ becomes ‘irresponsible’ (especially when children are involved) whereas the real causes, dangerous neighbourhood and roadway design and dangerous driver behaviour are usually not addressed.

Think about it: it happens regularly. Stuff is turned upside down. Victims become perpetrators. Dictators and mass murderers become heroes. Terrorists become freedom fighters. Torture becomes an acceptable interrogation technique. Innocent children become ‘collateral’.

This is when you need a clear head. When you have goal posts that don’t shift. When you know where you stand. When you stand firm and name what is bad: quite often, like Rumpelstilzchen, it stumps with its feed, gets really angry, and then – disappears.

Another day in the room. Pádraig is now getting physiotherapy to strengthen his core which will allow him to breathe better, which, in turn, will make it easier to take out the tracheostomy, eventually. That would really be another big step forward: being able to manage without this tube stuck in his neck. He is well able now to breathe, even with the tracheostomy completely closed – which is what we are practising once or twice a day. The problem is that he can do this only when his head is in a good position. What he needs to work on is to develop the muscles and strength to keep the airwaves open, even when his head is not in the ideal position.

He needs to stump his feet, not just tap:), and the tracheostomy will disappear – just like Rumpelstilzchen!!!

Don’t forget to sign up for the poker night of the year: 23 August, 19:30–01:00
Wishing Well, Newtown Park, Blackrock, Dublin Co. Dublin.

And – vote for hospi-tales and get this blog into the Top 10 for the Irish Blog Awards.

Perfect

10 Sunday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

Tags

Leonard Cohen, Perfect, Perfection, Ready Brek

nobody2We all agree about some things. For example, we’d probably agree that every day is different (unless you’re celebrating Groundhog Day in Pennsylvania:). We all disagree about other things. For example, we’d probably disagree about who is the most perfect person on the planet – or even in our lives.

I’ve thought about what would be a perfect life. And what would make a life a perfect life? Is ‘perfection’ dependent on ‘duration’? Or has it got to do with ‘impact’ or with ’emotion’ or with ‘memory’? Would you’ve had a perfect life if you had loads of adventures; made loads of experiences; really deeply touched others so they’d never forget you and would even tell their children and grandchildren about you; inspired others so that they did things they never even dreamt about before, they never thought they were crazy enough even to try, they never believed they would be capable of? – I know one thing: a perfect life hasn’t got to do with how much money you made, what kind of car you’re driving, what kind of important job you are doing or how much money you could sell your house for.

Then I thought: perfection probably doesn’t exist in people. I think even Jesus had moments where he really annoyed others and didn’t quite do the ‘right’ thing.

And then I remembered Leonard Cohen’s song/poem which really sums it all up for me.

Ring the bells that still can ring
Forget your perfect offering.
There is a crack in everything,
That’s how the light gets in.

Forget perfection. Look out for the crack. That’s where you’ll find true friends. They’re never perfect. But they’re there for you when you need them.

Pádraig didn’t manage to get out today, the ward was too busy to allow a nurse to be freed up for the ‘walk on the wild side’. We’ll be working on getting clearance to take him out on our own; from our point of view, he should be stable enough, and we’d be happy to take the risk. That mightn’t be enough to swing the doctor’s opinion, but we’ll give it a go, who knows! We also realised that the hospital food is not so great: too sticky in the mouth. He still needs something that goes down really easy – like ice-cream, or at least yoghurt or Ready Brek. Otherwise, a perfect day – as much as a day can be ‘perfect’. These days.

Nearly forgot: Check this out:

http://www.blogawardsireland.com/best-blog-post-2014/

Not quite sure how it works, but I think it needs your vote:)

Tap

09 Saturday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

UnknownSaturday should be the night fever. It’s when young people go out. There is no ‘going out’ here, not even on a Saturday night. I promised myself not to think anymore about what could have been, what should have been. Because it doesn’t make any difference. Things are as they are. In a way, it’s good that there isn’t any Saturday night ‘fever’, that all is good.

I spent some time on my own with Pádraig and played him some of my music. Streets of London, for example – so how can you say that the sun don’t shine for you anymore? Or: Stairway to heaven…

And then, I played ‘A song for Ireland’ by Mary Black.

Pat asked whether he could tap his feet along. And yes, you guessed it – he did it!!! For the first time ever in more than a year: he tapped his feet along a ‘song for Ireland’!

Second

08 Friday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 1 Comment

Strange things happen.

I remember one night at a friend’s apartment in Cologne where we talked about García Marquez’ Cien años de Soledad, with some fellow students, a professor, and Pat (from Ireland:). We concluded that the only deficiency of that book was that it hadn’t been written by an Irish person. Ok, it was early in the morning, after a long day and a nice meal… but the point we agreed on was that there was at least as much ‘magic realism’ in Ireland as there was in Aracataca, Colombia.

Here is an example of both: a bit of realism and a bit of magic – from Germany, the place you’d expect to find a lot of ‘realism’, a bit less of magic, but where, surprise surprise, you’ll find both!

Realism – This is the first page of our 20 page ‘Jahresabrechnung’ for our apartment. Check out all the items: For the last 16 days of December ’13, we have to pay for, among other items, street cleaning (0.55 euro), the gardener (1.55 euro), and – avid readers will remember these, because they were checked one morning in December at 07:15 – the smoke alarms in our apartment (0.34 euro).

photo

 

 

 

 

 

 

I call the above an example of ‘realism’ – although in Ireland, you’d probably use it as an example of ‘magic’ because no one but a wizard could come up with such a bill.

Magic – Here comes the magic. The clock in Pádraig’s room this afternoon.

IMG_8582

IMG_8582

Watch it. Again. And a third time! This is not made up. This really happened! And it went on for much longer than this clip!

The other thing that really happened was that we went out a second time ‘into the wild’ of the rose garden and the grounds of the Schön-Klinik with Pádraig! (Thank you Untitledto the nurse who made this happen.) I still don’t know whether this was real or whether it was magic. Whatever it was, I am sure it happened!

To be honest, I can’t get enough of it. And I’m sure, Pádraig can’t get enough of it either! There is life out there. And he is part of it, again! – A sign of things to come! – Anything is possible!

 

About

07 Thursday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

UnknownOut and about. I was thinking about the big event yesterday. Getting out for the first time in more than a year, not in an ambulance, or on a plane, but in a wheel chair, for a stroll. To the famous rose garden. There must have been a million things that Pádraig saw, felt, smelt, touched, tasted that he would have almost forgotten about.

imagesWhat do you do when you get overwhelmed by your senses? What I do (though it doesn’t happen that often anymore:) is: I just give up or give in – whatever. ‘Resistance is futile’ in these instances. I suppose this is what happened to Pádraig yesterday: a big big bucket load of stuff thrown at him with no place to go. I got the feeling that the real effect of that ‘out and about’ excursion only started when he got back into his ‘own’ four walls. When he realised that the world outside actually did still exist and is just waiting for him to dive in and then get on top of it again.

If we forget for a moment about how Pádraig might have managed to deal with all of this and how he will deal with it over the next days, what was probably as important, if not even more important, as the excursion itself it was the fact that he could embark on it at all. Today, I had to go over some notes from the year just past. When I read about and then remembered how he was doing just some months ago, and compare that with him moving around the grounds of the hospital yesterday in his smart yellow (!) trousers and his even smarter blue vans (remember the pictures of the vans?), the magnitude of what happened yesterday became as clear as mud: whereas we all would have been really afraid of something happening to Pádraig getting out ‘into the wild’ then, yesterday no one was afraid. Yes, very very very nervous, but no afraid. It was, literally, a walk in the park.

Sebastian Hackel, Warum sie lacht (2011). Ich hab’ Hasen geseh’n, mitten in der Stadt…

Today’s Music Tip
Sebastian Hackel, Warum sie lacht (2011). Ich hab’ Hasen geseh’n, mitten in der Stadt…
What’s hot
Being completely overwhelmed by your senses
What’s cold
Not feeling. Anything.
The German word/phrase/verse of the day
Mensch, das kannste dir wirklich nich’ vorstellen! Der glatte Wahn!

Cool

06 Wednesday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 24 Comments

We still can’t believe it. But, after more than a year, Pádraig was outside, in the fresh air, in the sunshine, amongst people, rabbits running across the grass, children playing at the water fountain in the rose garden – and himself right bang in the middle!

After that outing and all the fresh air, he was really hungry and ate more and better than ever before. He was also really awake and responsive, communicating no problem with the yes/no answers.

Brilliant.

 

Maulwurf

05 Tuesday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 9 Comments

Signs to the S1 in Berlin

Signs to the S1 in Berlin

Changing moving stairs at a station

Changing moving stairs at a station

“Die Bahn”, the German Railways, are not really known for their sense of humour. They are trying to become more international having announcements on their trains in German and English (“Sänk yu four träwelling wis Deutsche Bahn”), where it is not always immediately evident whether what they are announcing is being announced in German or English. Their attempts to be funny remained ‘bodenständig’ German. “Max der Maulwurf” is their character in charge of communicating difficult and annoying news to their customers. He even got his own website. Not sure what to think of this, but I have the feeling that if station entrances are closed and it’s difficult to find your way around, or if moving stairs don’t work, Max der Maulwurf doesn’t give me the impression of being taken seriously as a customer. To me, it looks like as if, in addition of annoying delays and inconveniences, the Deutsche Bahn was making fun of their customers… Humour. Doesn’t always work.

Today, the head of the physio team in the Schön Klinik visited Pádraig together with his speech therapist. No news of that visit and examination, but tomorrow is the day we get to meet the therapists and, who knows, there might be some news.

Pádraig continues with his meals and, no surprise here, continues to like the deserts much much more than the spinach (who likes spinach?) and really finely minced meat or fish with mashed potatoes. The new tube he got last week seems to work fine, it is shorter and looks much neater. We continue to block it altogether every day, just for a very short time, to get him used to breathing in and out through his mouth and nose. As long as his head is positioned well, he manages this brilliantly.  The transfer from bed to wheelchair and back is going smoother every day. You wouldn’t believe the amount of details to look out for, tubes, cushions, sensors, positioning, supports – it’s an endless list of things. But we are getting better at it.

photo 1Today, we got to know a new gadget: it looks like a shower cap. It comes in a bag like a shower cap. You can put it on like a shower cap. But it has exactly the opposite effect than that of a shower cap. Instead of keeping water out, it keeps moisture (and whatever else) inside: you put it on (having heated it up slightly in the microwave if you prefer) and you massage whatever is inside of the cap onto your head. We’ll see tomorrow how well it worked, but today his hair looked great and, more importantly, he really liked the clean feeling!

Don’t forget:

Screen Shot 2014-08-05 at 22.09.51

Today’s German Music Tip
Fard, Reich und Schön (2011). Not really my style of music, but it’s one of the better known newer German stars. Fard is a German rapper with Iranian roots from Gladbeck, with 16+ million clicks on youtube…
What’s hot
Washing Hair
What’s cold
Washing Hair with water:)
The German word/phrase/verse of the day
Das kommt gar nicht in die Tüte!

Push

04 Monday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ Leave a comment

Tags

Camino, Camino de Santiago, I'll push you

photoWe believe in some way, all of us have limitations. We can be limited by ailments (like mine), circumstances, perceptions, or resources. At worst, these limitations can invite despair, stagnation, or aggression. They can make us stop in our tracks if we let them.

camino-de-santiago-by-wheelchair-caminoways-300x225This is a quote by Justin Skeesuck who, together with his friend Patrick Gray, went to walk the Camino de Santiago. Justin is disabled and can only move in a wheelchair. This year, over six weeks, his friend Patrick pushed him and his wheelchair, a load of 120 pounds, the 800 km of the ‘French Way’, with the occasional help of other pilgrims when he couldn’t manage just by himself. At times, he carried Justin on his back, pushing the wheelchair through the mud. He developed chronic cramps in his legs, and now has muscles in his chest that he didn’t even know existed. But they made it. “I’ll push you“. What an inspiration!

imagesWe recently heard some news about the water charges in Ireland… It’ll be a bit like Germany, it seems. As you know, we have a small apartment here in Hamburg in a house with about a dozen others. And we have a water meter. Not for the house. For our apartment. In the bathroom. After each flush, each shower, and each hand wash, we can check how much water we have used. How incredible is that? – We heard that people are being warned in Ireland to check out visitors to their house – in case they bring their tooth brushes. They are also being advised to give the bathroom door a knock – if guests overstay – in case someone is trying to have a hair wash or, even worse, a full shower. No doubt, people will try everything to bring down those charges!

We did not manage to go out today, but we will keep at it. It’ll happen one day… In the meantime, Pádraig continues to be sitting out in his wheel chair, having a (bit of a) warm dinner and (most of the) desert. Today was tilt table day; great to see how the physios continue to be working with Pádraig. Over the past days, we have been blocking the tracheostomy altogether for a few minutes to see how well he manages to breath not just out, but both in and out using the “normal” airways. We extended these periods slightly and it seems that he is getting better at it. Looks like we’re on the right track.

Just learned that there was an article about Pádraig in the Boston Irish Reporter.

Screen Shot 2014-08-04 at 17.29.50

 

 

 

 

 

 

 

Finally: Don’t forget to sign up for the poker night of the year, and spread the word to your friends: 23 August 2014, 19:30 – 01:00, Wishing Well, Newtown Park, Blackrock, Dublin Co. Dublin. You’ll find all the details here.

Remember: you don’t have to be a professional (or even a good) poker player. The rules are easy, you just have to keep a straight face!

OUT

03 Sunday Aug 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

We hit a humongous traffic jam today when coming back from Tating, driving out from Wacken onto the motorway towards Hamburg. Some heavy metal fans had decided to hit the road early to avoid the annual traffic jam on the A23 going South. The variety of ‘vehicles’ was incredible. What they all had in common was that they were driven by people wearing black t-shirts with tattoos up to their necks! Here is a small selection….

Did he deliver petrol, water, or beer to WOA?
Wohnwacken!
The ‘Classic’

Sunday on a German Autobahn: car spotting!
He had the cash for the official merchandise!

So we arrived a bit later than planned, but still at around 2pm at the hospital. Pádraig’s nurse had stopped his ‘Sondennahrung’ an hour earlier to try and make him feel a bit hungry. By the time we had moved him into the wheelchair, she had heated up his dinner and brought it in together with a really nice looking yoghourt. He had some of the dinner but, needless to say, he like the yoghourt so much more that he almost finished it up.

outThen, and here is the highlight of the day, the nurse mentioned in passing that a doctor had enquired about the possibility of us taking Pádraig out, I mean OUT, out into the fresh air, the sun, the wind, the grass, the trees, the birds singing, people messing, …. The answer he got was: yes, no problem – as long as there is a nurse with him and his has a mobile oxygen monitor gadget attached. Isn’t this GREAT? (The doctor himself came in later and confirmed it with us!) Now, all we need is a nurse that has an hour or so to spare to accompany us outside, a day with not-so-much heat, and OUT we go! It would be really nice to organise the date in the rose garden now, to have a little get-together with all the great people who have worked so hard and helped so much to get Pádraig to this point! Can’t wait for the day!

Today marks the beginning of WW1. I just checked how many people died. For nothing. The number is 37. Million.

MessInstead of the usual German phrase or word, tonight here is a picture from an item that is so common in every hospital that I won’t give away what it is. It has some writing on it which really struck me, looking at German writing, but reading it in English – all of a sudden it sounded very much un-German!

And finally, a word about the Poker Night: the Facebook page for the event can now be accessed. Check it out: https://www.facebook.com/events/478688752267844/?ref=2&ref_dashboard_filter=hosting

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