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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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Drive

04 Wednesday Jun 2014

Posted by ReinhardSchaler in Uncategorized

≈ 10 Comments

drive“My hands are a little dirty,” says the ‘driver’ (Ryan Gosling) to the ‘business’ man (Albert Brooks). – “So are mine!” is his answer. – It’s a brilliant movie from 2011: very cool, violent, black, lonely. But ‘Drive’ is not just a movie. There is also a book. It’s by Daniel Pink, and its about motivation. In a way, it’s about An Saol.

Daniel H. Pink  was a speechwriter for Vice President Al Gore from 1995 to 1997. In 2010 he published “Drive – The Surprising Truth about what motivates us”. It’s a short, easy read. Not subtle at all. Kind of in your face. It’s full of really great quotes, punch lines. Here are some.

An Saol“The capacity for logical thought is one of the things that makes us human. But in a world of ubiquitous information and advanced analytical tools, logic alone won’t do. What will distinguish those who thrive will be their ability to understand what makes their fellow woman or man tick, to forge relationships, and to care for others.”
― Daniel H. Pink

“Greatness and nearsightedness are incompatible. Meaningful achievement depends on lifting one’s sights and pushing toward the horizon.”
― Daniel H. Pink, Drive: The Surprising Truth About What Motivates Us

I went on my own, long drive down to the ‘south’ (“südlich der Elbe fängt der Balkan an”), just for the night, to visit my mother and, at the same time, fix a few things with our Ferrari-red Kia Picanto. You wouldn’t believe it (that is: unless you are German), but you have to switch your tyres between winter and summer, by law. Tyre manufacturers must have a pretty good lobby here. Every German car now has at least two sets of tyres. And unless you have your own garage (which most Germans haven’t got) you have to ‘einlagern’ the set you are not using with your friendly Kia (or whatever different brand) garage. I am also going to visit the grave of my grandparents, which brings me to another German ‘custom’. You will only ever be able to ‘rent’ a grave site. And: you have to look after it or the City Council will remove it! Since my grandparents have been dead for many years, the initial rent is up and I now have to pay a yearly ‘lease’ if I want to keep the grave site. I also have to make sure that it looks respectable. No rent, no care will lead to the removal of the grave site. The gravestones of my grandparents would disappear and with them any physical evidence of their earthly existence. Germans!

Pádraig had another good day today. The speech therapist was so happy with his progress that she proposed to stimulate his taste buds with – well, with what? So she asked him: “Patrick, do you like chocolate?” And guess what? Up went his right foot! And then the left for ‘no’ and so on. His new ability to communicate spread and when his senior doctor today tried, she also got a ‘foot’-driven yes/no response. Again, he was sitting in the wheelchair for a few hours. And he was on the speech valve. Without additional oxygen for most of the day. Looks like there is something going on here!!!

Today’s German Music Tip
Beginner, City Blues. “Südlich von der Elbe da ist das Leben nicht dasselbe. Rot-weiß die Pommessoße. Alternativ die Flora. Hamburg!”
What’s hot
Hamburg
What’s cold
Südlich der Elbe
The German word/phrase/verse of the day
Freie Fahrt für freie Bürger.

Tatort

03 Tuesday Jun 2014

Posted by ReinhardSchaler in Uncategorized

≈ 2 Comments

Screen Shot 2014-06-03 at 20.36.50Klaus Doldinger, one of Germany’s really great musicians, wrote the title track to the longest running TV crime series in 1970 when it was first broadcast. Guess who played the drums? Yes, it was Udo Lindenberg (the one who lives in the Hotel Atlantic here in Hamburg and one of my favourite musicians).

This week, Der Spiegel featured a title story on the phenomenon that almost disappeared as antiquated and something from tester-years. Because nobody really knows how this series is attracting 10 million users every Sunday!!!

Screen Shot 2014-06-03 at 20.38.42Each Sunday, Tatort ‘travels’ to a different Bundesland with a different Kommissar. And they could not be more different. My favourite one was Schimansky in Düsseldorf. It felt so much like home, so normal, watching this. Like one of us. There is a new Kommissar around in Hamburg now, who is even a tick more extreme: Tschiller (Til Schweiger), who is working with Gümer, mainly on drugs-related cases. Willkommen in Hamburg is a classic (the link brings you to the trailer).

Pádraig seems to be entering a new routine: no additional oxygen during the day, and little during the night. It’s really great how he is coping. He wasn’t quite alert as yesterday, at least not in the afternoon, but he was still sitting outside in his wheelchair, looking relaxed. Like a Couch-Kommissar himself!

Scan sp1Remember the declaration I had to sign about ‘lüften’, opening the windows, ‘Durchzug’, and the nice gentleman from the Wohnungsgenossenschaft calling in because he had noticed some condensation on the windows?

Today, we received another letter in the postbox, also very different and strange. It seems to be a letter distributed from a private person in a street nearby to all the neighbours. I recounts a ‘Tatort’ in and around our streets about a ‘Spanner’, a man who gets close to your window and peeps in, hoping to see and/or hear private and personal ‘stuff’. The letter says that it’s someone from the neighbourhood, apparently well known, someone that goes out in the mornings and evenings to collect bottles (to get the deposit from the shop). The letter writer asks all who see him getting close to ground level windows to stop this ‘unsittliche Verhalten’. – We read the letter a couple of times with all sorts of different thoughts coming up. Who was the person who wrote it and went to the bother to distribute it to dozens of postboxes in the neighbourhood. Perhaps more importantly, who is the poor man who is so poor that he collect empty bottles, and who is so lonely that he goes out in the evening to watch into strangers’ windows?

Today’s German Music Tip
Klaus Doldinger, Tatort (1970). This is the original version – it was modified only twice (and only slightly) over its 44 year history.
What’s hot
Tatort
What’s cold
Sunday evenings without it’d
The German word/phrase/verse of the day
Couch-Kommissare

Yes/No

02 Monday Jun 2014

Posted by ReinhardSchaler in Uncategorized

≈ 6 Comments

Yes / No.

Early this afternoon, I mentioned to Pádraig’s senior doctor that he had to make a double extra effort to achieve two things: (1) to get rid of the tracheotomy and (2) to try really hard and ‘answer’ YES or NO when we ask him – because it would life for him so much easier. Imagine: Are you comfortable? Are you too warm? Does this hurt? Do you like this music? Have I told you this joke before (I know I did!)?

Pat and I practiced with him this afternoon. Lift your right foot for ‘yes’. Lift your left foot for ‘no’.

We asked simple, obvious questions: do you have a brother? do you have sisters? … We asked five questions and he answered five times correctly. When he did, he had the speech valve on, no additional oxygen, and was sitting in his wheel chair. – This could just have been an extra-ordinary day. But I think we’re on to something. Just think back a couple of months – none of the above would have happened.

We were also following the Dublin Women’s Mini Marathon today. Great runners. Great walkers. Great achievements. And thank you to Eileen and all who helped to organise the event, set up the Facebook site, got the t-shirts, prepared food and drinks for the Conradh, and organised the hugely successful fundraising!

An ‘old’ friend (by both meanings of the word) send a message about ‘post-mortem’, buns & sangers, pints, and some undercover ‘girls’ (self-censorship kicked in here:). – In any case: they were the beautiful people today, sheer brilliant! We have been telling Pádraig about the race and showing him the pictures. He must have felt the fun and the energy today. YES!




MiniMarathon

01 Sunday Jun 2014

Posted by ReinhardSchaler in Uncategorized

≈ 10 Comments

Screen Shot 2014-05-31 at 23.20.34

#RithPhádraig

Some of you will meet up in the Conradh tomorrow just after noon (from 12:15) to run/walk the Mini Marathon for Padraig. You’ll pick up a special t-shirt there that Eileen has organised for you and you’ll get ready for the start at 2pm. You’ll start at Bagoot Street, just off Fitzwilliam St, and return back via Nutley Lane and the Stillorgan Rd to Fitzwilliam St Upper. After the race, back to the Conradh – and some refreshments to look forward to!

We’ll make this the first truly Pan-national Euro Dublin-Hamburg Flora Women’s Marathon and join you, a thousand miles away, walking and running the distance, with you in spirit!

Pádraig was good today, almost three hours on the Speech Valve without any trouble whatsoever, and almost 40 minutes on the MOTOMed2. Great oxygen saturation, without any additional oxygen in all of the afternoon. Great swallowing too. If he continues this way, he should be able to get on without additional oxygen help some day, and without the tracheostomy. And with the physical well-being will come a continued recovery of his level of alertness. No doubt.

I just checked the Facebook page Run the Mini Marathon For Pádraig where Carmel left a really important comment: Don’t forget suncream! – which reminded me of Baz Luhrmann’s song, in which he agrees, addressing the class of ’99:

Wear sunscreen
If I could offer you only one tip for the future, sunscreen would be it
The long-term benefits of sunscreen have been proved by scientists

He continues:

Don’t worry about the future
Or know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum
The real troubles in your life are apt to be things that never crossed your worried mind

Enjoy your body, use it every way you can
Don’t be afraid of it or what other people think of it
It’s the greatest instrument you’ll ever own

Dance

Even if you have nowhere to do it but your own living room

He doesn’t say anything about running of walking – but I am sure he’d agree that it is a great way to keep fit and enjoy life, as long as you don’t forget the sunscreen! 🙂 And, I am also sure, there’ll be an opportunity to dance, you won’t have to do it in your own living room, there’ll be plenty of space in the Conradh!

I’d like to thank all who organised the ‘run for Pádraig’ event and all who participate; and I’d like to join Eileen Kennedy when she says on the FB page for the event: “I hope you all enjoy the Day!”

Today’s German Music Tip
Achim Reichel – Aloha Heja He (1991). Achim Reichel is a singer/songwriter from Hamburg and played with “The Rattles” who were opening for The Beatles on their last European Tour in 1966. When I found the song, I kind of liked it until I saw a live version of it (starts at around 2:05m)… “Hab die ganze Welt gesehn von Singapur bis Aberdeen” – that only rhymes in German.
What’s hot
Running and Dancing
What’s cold
Sunburn
The German word/phrase/verse of the day
Mukke

Past

31 Saturday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 9 Comments

Martin Niemöller (1892-1984) was a protestant pastor and social activist. In a speech/poem from 1946, he points out that when you see injustice done you better do something – even if that injustice does not affect you (yet). Because if you don’t, there will be nobody left to help you when you need help. Fighting injustice is a moral and ethical obligation.  (See below for the full quote by Niemöller.)

“We can’t judge the past” said the speaker for the dioceses yesterday when he was interviewed by RTÉ News just beside the field in Tuam where two boys, playing, had lifted the slab covering a disused septic tank. What they discovered was horrific: the tiny bones and skulls of nearly 800 infants between 2 days and 4 years old, stacked up 9 feet deep in the tank.

140530 RTE Tuam

140530 RTE Tuam

Donal O’Keeffe reports in today’s thejournal.ie how Father Flanagan – yes, THE Father Flanagan – told a public meeting in Cork’s Savoy Cinema in 1946 (the same year Niemöller wrote his speech/poem): “You are the people who permit your children and the children of your communities to go into these institutions of punishment. You can do something about it”; he called Ireland’s institutions “a disgrace to the nation”. O’Keeffe also reports how the then Minister of Justice, Gerald Boland, reacted in the Dail to Father Flanagan’s call for action. The Minister said, “I was not disposed to take any notice of what Monsignor Flanagan said while he was in this country, because his statements were so exaggerated that I did not think people would attach any importance to them.”

I do think (and maybe it’s the German in me) that we can judge the past.

Forógra na Poblachta, the Proclamation of the Irish Republic from 1916, gave a promise to cherish “all the children of the nation equally”.

When our sons and daughters look back and ask us what we did to afford the right to proper and timely health care to people with severe acquired brain injury, what we did to assure that they were equally cherished and treated with dignity – we should be able to say “all that we could”.

Pádraig was well today. He cycled his 3km Giro d’Schön and was in good form, considering the circumstances.

His story seems to get quite a bit of visibility on Facebook. One of his friends in Kentucky, USA, sent us an email to say that a friend of hers, interested in Ireland and stories from Ireland, had received a FB recommendation to read this blog… Another person who became really interested is the owner of an Irish Pub in Hamburg, Paddy’s, who we look forward to meet some day soon. He is organising a fundraiser for Caring for Padraig.

Which brings me to next Monday and Saturday: Monday will see a large number of women, ‘drag queens’ and other ‘shady characters’ running what’s called, completely inappropriately – I’m sure you’d agree, a “marathon”. I ask you, who’d ever heard of a ‘women’s marathon’, and one of 10km??? The poor auld Greeks who ran the ‘marathon’ must turn in their graves!!! I would have love to be there, just for the fun of it! – PLEASE support the runners! Never mind whether it’s runners, walkers, women, or wanna-bees!  They’re all great! Check it out here.

Screen Shot 2014-05-31 at 23.20.34

Finally, also check out the Mountain Flag Challenge! If you never put your flag up on top of a mountain – this is your chance!!! This day week, friends or mine will face the Mountain Flag Challenge for Pádraig. Join them and check out the details here.

Screen Shot 2014-05-31 at 23.22.51

By Martin Niemöller
Als die Nazis die Kommunisten holten,
habe ich geschwiegen;
ich war ja kein Kommunist.

Als sie die Sozialdemokraten einsperrten,
habe ich geschwiegen;
ich war ja kein Sozialdemokrat.

Als sie die Gewerkschafter holten,
habe ich nicht protestiert;
ich war ja kein Gewerkschafter.

Als sie die Juden holten,
habe ich geschwiegen;
ich war ja kein Jude.

Als sie mich holten,
gab es keinen mehr,
der protestieren konnte.

When the Nazis came for the communists,
I remained silent;
I was not a communist.

When they locked up the social democrats,
I remained silent;
I was not a social democrat.

When they came for the trade unionists,
I did not speak out;
I was not a trade unionist.

When they came for the Jews,
I remained silent;
I wasn’t a Jew.

When they came for me,
there was no one left to speak out.

Future

30 Friday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 8 Comments

At times the future disappears.

Future: something to look forward to, some plan, can’t wait for it to happen. Drive, School, College, Travel, Friends, Dance, Songs.

Suddenly, without a warning, the future disappears into a big black hole.

Where is it gone? What will happen to us without it? Will it come back? How can the future come back?

Is it all like what it feels? Could it be that the future never disappears, but that I, at times, just shine the dark light of grief and desperation on it?

photoThe future is the prayers and thoughts, the closeness, the love and the compassion of friends, the energy in this big, loud, LOUD shout across the land and the sea to Hamburg for Pádraig: Happy Birthday! Lá Breithe Sona! This year will be yours!

The incredible presents, birthday cards, text messages, good wishes on the blog, emails,… it’s OBVIOUS how much love there is for Pádraig and that this love, some day soon in the future, will lift him out of the place where he is now. An Saol! It’s Pádraig’s!

Today’s German Music Tip
DIE APOKALYPTISCHEN REITER – Freiheit Gleichheit Brüderlichkeit. Slightly disturbing German Heavy Metal on eternal current affairs.
What’s hot
Future
What’s cold
Black holes
The German word/phrase/verse of the day
Echtzeit

24

29 Thursday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 19 Comments

photo 2The happiest day of my life.

24 years ago.

When you were born.

A happy day.

A year ago.

When we exchanged hugs and kisses.

On Parnell Square. North.

Finished College. Sad to leave.

On your way to Boston. Can’t wait. Never could.

Next time I saw you, you did not see me.

30 hours East of China. They were so kind I was frightened.

A happy sad day.

Today. 24. Can’t stay forever young.

We are lost in time. Worried about our dreams. Praying for our future.

Seagulls. On Parnell Square. North. In Hyannis. Harbour at the break of down. In Beaumont. Always. Flying over Hamburg. Calling you to come back. Soon.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Light

28 Wednesday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 11 Comments

Unknown“The light at the end of the tunnel is the light of an oncoming train.” One of my favourite cynical jokes.

Here is some real light at the end of the tunnel. Here is what I am planning to send to people to see the light at the end of the tunnel, the light that means life. Let me know what you think.


An Saol

Our son Pádraig had just turned 23 and finished college, when he was hit by a 4.3 ton van on 27 June 2013 as he cycled to work on Cape Cod, where he had planned to spend the summer on a J1 visa.

He acquired a very severe brain injury and has been in a coma ever since. From one second to the next, his life and ours had changed dramatically.

When we brought him home from the US to Ireland, we discovered that there was no place where he could receive adequate and timely neurological rehabilitation care and therapy. We were told that caring for patients with severe brain injuries is a costly long-term commitment, and one that was not provided by the Irish Health Care system. We learned that patients like Pádraig were kept in inadequate acute hospital wards or in nursing homes for the elderly, where this stay was normally interrupted only by a once-off and short-term care and therapy stay in the National Rehabilitation Hospital (NRH) in Dun Laoghaire.

In desperation, we moved Pádraig to Germany where we found a working and established system that was responsive and supportive. We learned that patients such as Pádraig and their families can be offered the care, the therapies, and the support they need in a dignified and respectful environment. We learned that it is possible and necessary to provide adequate and timely support for patients such as Pádraig. We became acutely aware that all societies have a duty of care and an obligation to look after their most vulnerable members; because a devastating brain injury does not change or lessen the value and the rights of that person.

This is why we have decided to establish An Saol, a house where young people with severe and very severe acquired brain injuries can be cared for and receive all adequate and reasonable care and therapies they require. These patients will not have to be in an acute hospital for prolonged periods of time when that is not necessary, and they will not have to be moved to nursing homes mainly catering for the elderly.

An Saol will offer, in addition to a small, possibly 6-10-bed facility for in-patients, day-care and out-patient neurological rehabilitation and care, especially for younger patients with severe brain injuries. We will prepare a viable business plan for An Saol, try to get the support of all relevant government offices and agencies, as well as the relevant interest groups. Our aim is to open An Saol on 01 January 2016.


Pádraig was fine today, some visitors from my German family came up from a small village near Münster. It was really nice to see how he connected with them, how he visibly and undoubtedly communicated with them. So present, so alert. While he was not in the wheelchair, he was sitting up in his bed, almost like in an armchair. Most of the day, from 9am to around 7pm, he managed without additional oxygen.

Tomorrow is, of course, his birthday. It’s also Father’s Day in Germany. And it’s Ascension Thursday (Ascension Sunday in a few days in Ireland:). Even in thoroughly protestant Hamburg it’s a public holiday, with all shops closed, and a day off for most.

Today’s German Music Tip
Revolverheld, Ich lass für Dich das Licht an – the song all radio stations play all day long in Hamburg. Tonight, I watched the video for the first time. Wenn wir nachts nach Hause gehen, die Lippen rot vom Rotwein… youth, love, future. Sadness.
What’s hot
Light
What’s cold
Darkness
The German word/phrase/verse of the day
Mensch, mir ist ein Licht aufgegangen!

Kisses

27 Tuesday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 4 Comments

Hugs yesterday, a good-bye kiss today – what an effort! Besos y abrazos.

A nurse who had not seen Pádraig for a couple of weeks was back today and said she couldn’t believe how well he looked, sitting imagesin his ‘new’ wheelchair, without extra oxygen. He also moved his feet, a number of times, for the senior doctor; and the music therapist. Now that he can move his left foot and his right foot when asked, we were thinking whether we should try left foot for ‘yes’, right foot for ‘no’ – but this might still be a bit much to expect. He hasn’t used the speech valve for a number of days, not exactly sure why, but I guess they’re taking it easy after the stomach upset last Saturday – it would be dangerous to get food from an upset stomach into the lungs for risk of infections.

It’s eleven months since the accident today. At this time eleven months ago, I was frantically booking tickets, hiring a car on the other side of the world, packing my bags, in a haze, checking out of a hotel on a South China Sea island at 5am, with everyone else being fast asleep, except a young receptionist who told me about her small seagullreligious community who, she said, would pray for my son, my family, and myself, she said that it all would turn out well, it was the beginning of an out-of-body experience, of no sleep, of no food, of life in a daze, a trip around the world in 30 hours, the flushing of whatever was left in my body when I saw Pádraig in the ICU for the first time, everybody being so kind I knew Pádraig was not well, not well, not well at all, then waiting and hoping, then praying and pleading for him to wake up in the next hour, the next day, the next, and the next. Waiting. Panicking. Despairing. Hours, days, nights, all merged into one. Walks to Hyannis Harbour just before the break of dawn with Pat, when the nurses turned Pádraig around, not being able to talk to each other about what was going on, not being able to grasp reality. Seagulls. What will we do. We can’t stay here. – Can’t believe that it will just be another months and we’ll be starting to count the time after year one.

Hugs

26 Monday May 2014

Posted by ReinhardSchaler in Uncategorized

≈ 10 Comments

Have you ever taught a language with native speakers in your class? Or any other subject, and noticed that there was one or expert several people in the class who knew more about some of the stuff you were going to teach than yourself? Or students who were several decades older than yourself, like the age of your parents, with tons of life experience you were afraid they wanted to share? It’s every teacher’s and professional’s nightmare, coming in as the ‘expert’ only to find that there are people who at least look like they might be contesting your role. When that first happened to me, I was terrified. I tried double-hard to show that *I* was the expert, that *I* knew everything worth knowing, I filled the powerpoint slides with (mostly useless) facts, and tried to show off so that immediately see that they could only loose should they even dream of taking me on in my role as the expert teacher or professional. – Now, today, being older and wiser, I enjoy teaching people who know a lot, because I see it as an opportunity to learn more myself. What surprised me a lot was how much the ‘expert’ students enjoyed sharing their experience and knowledge with their fellow-students and with myself. They never thought about challenging me as the ‘teacher’. Over the past (almost) eleven months, I have practically lived in ICUs and in hospitals, four of them, in three different countries and on two continents. And after all that time, and all these places, I feel that I know a bit about Pádraig’s care. Above all, I know the patient, Pádraig, better than any nurse, therapist or doctor. Today was one of these days, when I realised that even when you know a lot, you can always learn more. imagesWhen we left last night, we were worried. Pádraig’s ‘Werte’ were not so good, his heartbeat up high, his temperature had gone up, and he was struggling with the oxygen supply – could have been signs of an imminent infection. Today, when we arrived, everything had returned to ‘normal’. Even better, he was breathing by himself, no extra oxygen supply. And then his nurse asked whether we wanted to hug Pádraig, giving him abrazos fuertes – instead of faking this feeling with soft (but essentially ‘dead’) constructions of cushions and blankets around him. The idea was to make him feel really comfortable and protected. You would not believe the effect this had on Pádraig. He completely relaxed, his heart beat went really low, he managed to breathe without added oxygen all afternoon, and he looked like he was really enjoying this feeling of closeness. I very much doubt that this ‘therapy’ is part of ‘what the doctor ordered’. But it worked wonders. As does the ‘Blasentee’ which they give him instead of water, to keep his bladder working ok. – Just two examples of real good care. Much beyond, I would suspect, of what traditional doctors would proscribe and what streamlined healthcare systems would recommend. A good day all around. Today’s German Music TipMax Herre feat. Philipp Poisel, Wolke 7What’s hot Abrazos fuertes What’s cold Abstand The German word/phrase/verse of the day Drei Dinge helfen, die Mühseligkeiten des Lebens zu tragen: Die Hoffnung, der Schlaf und das Lachen. (I. Kant)

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