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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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Trophy

13 Sunday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ Leave a comment

imagesTonight’s the night. The streets will be empty, Deutschland will not except anything but this trophy tonight.

Pádraig will be asleep and we’ll tell him tomorrow how it all turned out. It was a real quiet day today – but we managed again (like yesterday) to lift Pádraig into his wheelchair with the help of his nurse. Tomorrow will be the first of a three-day ‘course’ in moving Pádraig out of his bed into the wheelchair (and back) which his therapists have organised for us. What we hope for is that we will be able to help with the ‘routine’ work so that the therapists can concentrate on the advanced work.

Last week, when I was in Ireland, I had a meeting with the Neurological Alliance of Ireland (NAI) and Headway. I also tried to meet up with ABI Ireland again but that did not work out this time. I presented the idea of An Saol to them, asked them whether they felt it was necessary to establish it as a facility for young people with severe brain injuries, where they could receive appropriate care and therapy – instead of being ‘kept’ in an acute hospital or a nursing home. They all enthusiastically agreed that An Saol is necessary and they all promised their enthusiastic support.

I think that even Enda Kenny, our Taoiseach (prime minister) will agree. I just double-checked the letter he sent us earlier this year. There, he said that,

“The anger, dissatisfaction and frustration that you feel are clear and understood. You are right that Pádraig should be able to receive care here in his own country, the place where his parents and friends live. But, as your experiences show, the health system that we have here at the moment is unsatisfactory; it is not able to provide health care for its patients when they need it most.

Leo Varadkar (@campaignforleo) is the new Minister of Health, since late last week. He might not yet be aware of the appalling state of neurological rehabilitation in Ireland, and especially the lack of appropriate care and therapy for young survivors of severe ABI. So, we started to day with some messages on Twitter…

If you want to help, send the new Minister of Health a message and ask him wether he is aware of Pádraig’s situation, via Twitter, email, post, telephone, whatever: @campaignforleo (Twitter), minister’s_office@health.irlgov.ie (email),44 Kildare Street, Dublin 2, Tel: 01-6041062.

UnknownThe new Minister of Health has a unique opportunity to win himself a trophy so much bigger and so much brighter than any trophy FIFA has to offer. He has the unique opportunity to do something that will very fundamentally change the life of young people with ABI, that will allow them to live in dignity and with the hope of recovering as much of their abilities lost in an accident as possible.

The Evening Herald had a short article on Pádraig on 11 July 2014

Screen Shot 2014-07-13 at 18.42.13

 

 

TrafficLights

12 Saturday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

imagesWeltmeisterschaft, WM: The second last day. The second last match. What really counts, however, is not today – it’s tomorrow. Right?

I really had missed Pádraig over the past few days. And he had too. There was a bit of a smile on his face when I went back into his room and said ‘hello’. I had missed the chocolate pudding, the ice-cream and the sitting up on the bed-side (helped by his therapists and nurses). I wished he could have told me how that went for him, what it felt like having these explosions of taste in his mouth. What it felt like to sit when he was still not able to control his body. What does it feel like when people go away, come back, tell him that his friends were sending their love, that Dublin hasn’t really changed that much, the town and its people he loves so much.

images1I am exhausted and tired and disoriented. I had bought noodles in Dublin that I was looking for in Hamburg today, that I wanted to prepare for lunch when I realised that I was in Hamburg, the noodles in Dublin. I opened the Ferrari-red-Picanto and was looking for the steering wheel on the right hand side, and – having found the steering wheel on the left – I drove on the left out of our little street.

I am missing the view down from Mountjoy Square onto the Talbot Street junction, the green light for cars, and hundreds of people crossing the street despite of the little red man telling people that it’s the cars turn. So what!? My Irish heart was jumping for joy at this little sign of insubordination, my German head was asking whether this was a collective suicide attempt by the Irish!!??

WillPower

11 Friday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

WillPowerLast day in Dublin. Early start tomorrow morning. I missed all the excitement: the chocolate pudding, the ice-cream, the sitting on the side of the bed. I am telling myself that I can live with that, because this is still just the beginning. On a good day, when Pádraig has the speech valve on, he checks out his vocal chords – probably wondering about where they had been over the past year. It’s not speech, far from it still, but sounds he is experimenting with. He is also repeating sounds, or rather still trying to repeats sounds like an ‘ah’, not always very clear, but clearly as a reaction of a request. Think back a few months – all of the things, the ‘first’, that have been happening we were, in the best of cases, dreaming of. And now they are a reality.

I am sure that Pádraig will be developing all of his new found skills to a much higher level. What he needs is the right support in the right atmosphere, and lots of will-power.

Timagesoday, he had one of his self-determined resting days. He was a bit tired and slept a lot. And just as I am writing it: think about it, Pádraig slept! Well, he slept because he can also be wide awake. Also something we needed a lot of faith to believe in it ever happening again.

Wo ein Wille ist, da ist auch ein Weg!

Can’t wait to get back to see him.

Bettkante

10 Thursday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 6 Comments

puddingYou all knew about today’s ice-cream. So, what’s new? – There was something. Something happened. But – I’m going to keep you in suspense. Yes, I know it’s not fair, but then – what’s fair in life?

This being summer and Hamburg being really hot these days, Pádraig got lucky and the speech therapists kept their word (got that? speech… word…:). They started a little ice-cream parlour in his room and spoon-fed Pádraig green ice-cream: as green as the shamrocks on his window, still hanging in there from Patrick’s Day. And he loved it!

imagesThen came the real surprise (you’ll remember, we knew since yesterday that today was going to be ice-cream day, so no surprises here)! When Pat came back into his room, she found four really exhausted-looking people. Pádraig and three therapists/nurses. They had actually got Pádraig to sit on the side of his bed, with his feet pressed against the floor! Another first (has anyone counted the amount of stuff Pádraig has started to do for the first time again?) Think about it: he had not sat (without support) for more than a year

This afternoon, i met with the NAI and with Headway – both promised their help, anything they could do, for An Saol. It is slowly but surely gaining momentum!!!

 

Schokoladenpudding

09 Wednesday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 5 Comments

It was too much to expect, I guess, to have two good matches on two consecutive nights. This doesn’t look like soccer to me, there is no elegance, no genius, but a lot of really hard body work, very hard tackles. And no scores. In 90 minutes!

puddingPádraig had his total of six hours on the speech valve and he managing that superbly. Who would have thought this just a month or two ago! And today, he did much better than that: today, he had eight or nine spoon full of chocolate pudding.

eis srgAnd, as it is terribly hot in Hamburg, the plan is to continue with ice-cream tomorrow. There won’t be a choice of flavours, they’ll be pre-determined to stay in the whole frame-of-mind of winning:)

Can you imagine that: from nothing for a year, to semolina, followed by chocolate pudding, and then ice-cream – all within just about a week! I know, eating a pudding or even an ice-cream… what’s the big deal? But – if you haven’t eaten a thing, nothing at all at all at all, for more than a year, to be able to get all these sensation into your mouth must be tremendous.

Went out into the back garden this afternoon, back in Dublin. The hammocks are still hanging there, and Pádraig was ‘hanging out’ there, planning his next adventure, chilling. His favourite place in the garden. He was there, because without him none of this makes any sense. Whatsoever.

Off to Limerick in the morning, meeting with the NAI later on to plan An Saol.

Anything

08 Tuesday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

fanWhoever was walking the streets with a German flag on their shoulders, never mind one painted on their cheek, was definitely and without a doubt a neo-nazi. Who, in their right mind, would ever be proud again to be a German and wave the German flag to show it? “Die Ewig Gestrigen” we called them. People who were still dreaming of the big Germany, the one that had sent most of Europe and a good part of the rest of the world into the abyss. When I went on what would nowadays be called an ‘Erasmus’ to Spain, and my Spanish friends were telling me how organised and disciplined (in a good way) Germans were, I always said that it only appeared like that from the outside and that every country and every culture had their strengths and weaknesses. (It was still a ‘funny’ feeling to be caught up one day in Madrid in a huge demonstration commemorating the death of the Caudillo, driving this German registered VW beetle, and all the fascists ‘welcoming’ their German ‘supporters’ by beeping their horns and waving us on.)

marxBut – things change, a new generation has a different view of history, and being proud of being German with flags on your windows, your car mirrors, your t-shirt, and – yes – on your cheek, is creating, again, this sense of belonging, and a sense of being proud of your country, even if it is Germany.

Today is a big day in Germany. There won’t be night shifts in many factories as people will get together and watch the match of all matches, the real word cup final, the epic between the host country Brazil and the all-time favourites Germany. It doesn’t really matter who is going to loose – it’s going to be a major disaster anyways.

In Dublin, we hear that people are really really really excited about these concerts – some saying that they want them all, some saying they want none of them. They don’t know that the real, the authentic, the biggest hit this summer will not be one about “If Tomorrow LyricsNever Comes” – to the contrary: it’ll be one about the power of dreams, about believe in yourself and what you can achieve, about a sign of things to come, with loads of people, loads of them, having some ‘serious’ fun!

The Dream Boat is getting ready. No official recording available yet, but a bit of the ‘Making of…’, a sneak preview of the song in the Conradh, can be watched on youtube already.

When we arrived at the hospital today, Pádraig was sitting in his wheelchair and the occupational therapist and physio were just about to leave. Everybody is really happy with the progress Pádraig is making. He has no problem using the speech valve for up to six hours now, three in the morning and three in the afternoon. He manages without a problem to sit for about four hours a day in the wheelchair. And he managed to cycle so fast on the MOTOMed-Viva2 on one of his Tour d’Schön races that it blew a fuse and had to be withdrawn from any races until further notice.

Tonight, we’re getting ready to take down the German flags in Pádraig’s room. But, ‘der Ball ist rund’ and anything can happen! Sure, we all know this – anything!

 

 

 

LegWork

07 Monday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 5 Comments

Hamburg. There is no city I’ve been in where there’re more really expensive cars driven by people who obviously never earned enough money to imagesbuy those cars. Maybe it’s all legit, but those guys are in their twenties, wear dark glassed and dark suits, and they’re just to über-cool to have earned their money in an office job. U just couldn’t picture them in an ordinary 9-5. And even if you could, those jobs would not pay for them cars! So, what’s the secret?

We continued to lend a helping hand to the carers: over time, I could see us getting really well accustomed and able to make Pádraig comfortable.

There was another first today: we first thought it might be a “Krampf”. Then, Pat asked him to relax, and he did. We asked him three times if he wanted to do it again, and he did. What was it? Simple, easy – for any of us. For Pádraig a huge, huge effort: he moved his whole right leg up, and – when we asked him – down again. Up. And back down. And a third time. Wahnsinn! A sign of things to come!

What’s the secret!?

Sunday

06 Sunday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Under different circumstances you’d call this an ordinary day. Wheelchair, speech valve (x2), all going well. Nothing really that special. Just another day. Sun-day. Literally. 28 degrees. Africa in the North of Germany. Pádraig is doing photo 1ok, he’s hanging in there. Great to know that the weekend is over, without an incident. Really nice nurses supervising and encouraging us to get involved in Pádraig’s care. We managed to lift him out of and into his bed, and working with the speech valve.

Started to write up a plan for An Saol. Also talked to and exchanged emails with a number of people who are really enthusiastic of the idea. There has been some response to the call to support #AnSaol, and some of Pádraig’s great friends have started to lobby politicians. To make An Saol a reality, it will need supporters, many, people who can make photo 2things happen: people like you, who will not accept things as they are. People like Pádraig.

After having been with Pádraig, we went out to see Eamonn in his Irish Pub in Hamburg – no, it’s not called Eamonn’s but (for some reason:) Paddy’s Bar. We were told he’s there every night, except tonight;) Tough luck, we thought, we’ll have to go again!

Before I finish tonight, I wanted to ask you what you think would be the most important things to take into account when thinking about and planning An Saol?

Any ideas?

And – would you like to get involved in one way or another?

[Comment – or send an email to caringforpadraig@gmail.com.]

Aware

05 Saturday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

Tags

#AmhránDoPhádraig, ABI, An Saol, Dream Boat

imagesToday we had an experience that proved again, if that was necessary, that Pádraig is very much aware about what is going on around him. We told him a story and he very clearly and without any doubt reacted to it, having the speech valve, not just with an expression on his face, but also with his voice. It made me more determined than ever to make sure that we keep sharing with him how happy we all are with his incredible progress, and how many of his family and friends around the world, but especially in Dublin, are keeping him so close to their heart that they are doing whatever it takes to help.

Imagine: yesterdays blog had more than 1,500 views!!! There are so many people around the world following Pádraig’s story and the inspirational efforts his friends are making, it’s mind blowing! – Whatever happens, to Pádraig, to us, to his friends and family, none of us will ever, in their whole life, forget what has been going on over the past year. When has a young man in a coma moved so many people?

photo1He knows that and he knows that he can make it.

There is a picture in his room here in Hamburg that his friends brought into Cape Cod Hospital a year ago.

It has travelled a long way, across the big water, and between different countries.

He will, he will, he will get better soon!

Soon, the Dream Boat will rock Dublin and sail the crest of the waves! An Saol will become more concrete. It will gather strength. It will turn from an idea into something much more tangible. It will, with Pádraig’s magical inspiration, change the way the we’ll think about neurological rehabilitation and care for those with very severe brain injuries in Ireland. We need your help making this happen. Spread the word about #AnSoal and get politicians, funders, musicians, writers, gardeners, carers and consultants to support it. We are preparing a website and some initial discussion forum and will launch it before the end of the summer. Watch this space!

In the meantime, rock on Dream Boat!!!

TakeFive

04 Friday Jul 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

It must have been another long night in the recording studio judging be the tweets coming in at all hours of the morning. Looks like Smithfield became to small and the gang had to move to Bow Lane. There has been a constant stream of pictures taken and distributed by Caoimhe, Jen, Rónán, and others on Twitter (see a collection of them below). There were also some sneak previews of the making of Dublins 2014 Summer Hit on #AmhránDoPhádraig.

In the meantime, Pádraig managed to Take Five spoons of the green stuff – a sure sign of things to come. He also managed to stay on the speech valve for approximately 6 hours today, which must have been a record. The past few days have felt like as if some pieces begun to fall into place, loads of progress, loads of really good music being played in a Hamburg hospital, and yes, it definitely floated like a dream. He believes and he is making the effort, he knows that he can make it and he is determined to float that boat.

This is not the first time over the past few months that I thought there are things happening here that come what may none of us will ever forget. We will tell our grandchildren and they will tell the story to theirs. We are having, in a transcendent kind of a way, the time of our lives. I include Pádraig in this – what is happening here is pure magic. And we need to keep it going because he won’t give ever give in or give up either.

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