Amazed

Still amazed by the trip yesterday and how well Pádraig managed it. At the end of the day he must have been so exhausted. Being in the wheelchair for 7-8 hours by itself was an achievement. Traveling 4-5 hours altogether in the car must have been really tough for him.

imagesBut he enjoyed it. Being out by the see. Walking that mile over the bridge out to the restaurant he wanted me to buy so badly. Sitting out in the sun, on top of the most fabulous beach was brilliant. An Saol, so it was. Sailing down the stream in the Dreamboat. Who would have thought! A few months ago, the chief doctor didn’t even allow us to take him for a walk in the park of the hospital. I was thinking, maybe next time we go we’d invite him along to show him what life, An Saol, with a serious brain injury is all about.

There we were, the tree of us. And so happy. All of us.

After a hectic day yesterday, Pádraig took it easy today. Slow, easy-going in the morning, an easy breakfast and lunch, and I long, but relaxed, almost two hours’ walk along the Wandse stream on one of the most beautiful lazy Sunday afternoons you could imagine.

Today, I read the articles that were published in the Irish Times over the weekend. It’s heartbreaking. And it brings back memories of not just the heartbreak, but also the never-ending problems that shouldn’t have been problems at all. One article reported how friends standing in for what were supposed to be multi-million euro insurance policies covering every eventuality: “Confusion at times about who was going to foot the bill for medical expenses and rehabilitation was one reason why family, friends and students organised the fundraisers at home.” Insurers making sure they weren’t loosing any of their precious money to parents in horrendous circumstances: “There is a separate battle on the insurance front. Although the students were covered by J-1 travel insurance, some families say they are under pressure to relocate the students to Ireland to continue recovery.” And then, the hope to get appropriate treatment when they get back home to Ireland: “When they get home to Ireland the students will go initially to an acute-care hospital, then move on to the National Rehabilitation Hospital in Dún Laoghaire, Co Dublin, or a similar medical centre to continue their recovery.”

Not even the author of the Irish Times article, the paper’s Washington Correspondent Simon Carswell, seems to know that there are *no* medical centres “similar” to the National Rehabilitation Hospital in Ireland… that you have to wait a year to get into it with a severe brain injury and that treatment is limited to three months…

Oh, before I forget: I believe this mad man is still planning to run the five maratóns in five days next week. Have you tried to stop him? Click here to do what you can!

An  Saol  Living your life with a severe acquired brain injuryAn Saol

Tating

What a brilliant day it was! We hadn’t planned anything. But then, the weather looked good, it was Saturday – no Pflegedienst, no therapists. So at lunch time, off we went!

First of all: a BIG thank you to all of you who have been trying so so hard to stop this man Ronan from doing the craziest thing anyone could ever do: running 5 marathons in 5 days! To all the others: go to here and donate, donate, donate, Ronan needs to be stopped!

A year ago we went up to the North Sea, Tating (remember Tating?) and St. Peter-Ording. We, that was Pat, a good friend now living in California, and myself. It was a gorgeous day. We went up to the Arche Noah, the restaurant on stilts Pádraig wanted us to buy, when it was sold by the people who had inherited it from my sister and her husband, had a great glass of white wine and a break, before heading back up to Hamburg and the Schön-Klinik where Pádraig was waiting for us.

So when we were sitting on the same terrace of the Arch Noah today, sipping on our white wine and Pádraig eating a lovely ice-cream, we rang our friend in California who couldn’t believe that today, just a year after she had visited him, today Pádraig was FullSizeRenderenjoying the fine weather with us on the terrace of the Arche Noah.

Sadly, we did not make it to WACKEN – but we passed close by, seeing loads of cars on the motorway. – One year, we’ll make it to WACKEN!

Maratón

He needs to be stopped! Right here and now!

I mean, is heScreen Shot 2015-07-31 at 18.21.51 mad? Does he understand what he is trying to do?

If we gave him lots of money for his fundraising campaign, could we persuade him not do embark on this crazy, crazy week of running five (!) marathons in just five days (!)

So, stop whatever you’re doing and click here to send Ronan as much as you can. Stop him! Nobody can run five marathons in five days!!!

This morning (I’m so sorry I missed that) Padraig’s carer and Pat were about to dress Pádraig. They had an ordinary, one that is not open on the back, t-shirt for him. The carer explained how she had done a special Bobath on how to dress persons like Padraig. So they put his arms in and then were about to pull it over his head. The carer said to Pat how well this other person she is looking after is co-operating and how she is able to lift up her head. It took 5 seconds and there was Pádraig lifting up his head, all by himself, to help – as well if not more as this lady that he heard the carer talk about. What she was able to do, he was. As well, if not better!

Thursday (yesterday) afternoon was “traveling down memory lane” – time. I walked through the city centre and the pedestrian zones there. Had coffee and cake in our favourite café (still the best in Dortmund). And went to Hombruch where I had rented my second apartment which was a serious move up the property ladder – it had central heating and a full bath, costing just 45 euro.

I also visited two good friends, on of whom I had not seen for many years, the other celebrating his birthday.

My sister and brother-in-law drove up to Hamburg this morning to visit Pádraig, so I got a lift which was really nice – and Pádraig was delighted to see them.

Pádraig had a good day, between physio in the morning, the visitors, a few good wholesome meals, a walk in the park and listening to a new CD I got. It’s called “Fliegt, Gedanken fliegt” by Manderley, one if not the most famous folk groups from Dortmund in the late 70s. The only CD they ever made was re-launched a few years back.

It’s Friday. Another week is almost over. Can’t believe how fast time passes by.

Wall

I think we just got our first readers in Central and South America! It is really mind-blowing what the internet and the web have done. Here I am sitting in a dark and very quiet kitchen in Dublin, writing about Pádraig in Hamburg, and people reading about it almost immediately all over the world. I remember (oh, stop, Papa!) when I was in South America (here it goes again…) I had to book calls to let my parents know how I was (and so what???).

Anyhow. Pádraig’s OT got really excited today, and so did Pat and I. The OT gave him some simple sums, 2*4=8, 3+8=4, …. and asked Pádraig whether they were correct. And Pádraig indicated ‘yes’ (like for the first sum) and ‘no’ (like for the second). Sure, they weren’t very complicated, but, hey, here is someone with a ‘low level of consciousness’ doing sums!!! How cool is that?

The building work is progressing well: blocks and bricks should all be finished within the next few days. The roof comes next. You can recognise the wall of Pádraig’s new rooms.

Met with a few different people today to discuss An Saol, even looked at an office. Will work on action plan, organise meeting for the week of 14 September, and then start doing. With your help!

Today’s German Music Tip
BAP, Du kanns zaubere. Den Typ, den kriegst wirklich nicht mehr hin… Das es jetzt oder nie mit uns zwei passiert… For me, it’s the best love song ever. 33 years old.
What’s hot
Sums
What’s cold
Ignorance
The German word/phrase/verse of the day
Ich mag Wolfgang. (Varoufakis about Schäuble in Der Spiegel)

An  Saol  Living your life with a severe acquired brain injuryAn Saol

Odyssey

25 years ago, we were the happiest family in the world.

It was a freewheelin’ feeling’, things were just right.

25 months ago, we had all arrived on Cape Cod.

It was then that we embarked on our Odyssee, with Pádraig at the helm.

Right from the beginning, we were never alone. The crew actually grew over time, and it is still growing.

IMG_5860When we thought, we had lost our boat and were about to sink, his friends started to swim around the entire coast of Ireland, they were true heroes full of energy, enthusiasm, and solidarity. They were carrying our hopes. They met at huge concerts, table quizzes, special events, cake sales and races. They built a Dreamboat that is now carrying all of us along when we are tired and about to drown. They wrote, recited, and recorded poems and songs for Pádraig, we are all singing at the top of our voices as well as in our minds and in our hearts to fight the sirens.

The Odyssee is continuing but we are looking at the last legs of this journey that will bring Pádraig back home to where we started almost two years ago.

Today, Pádraig and his OT had another brilliant day together. She could not believe how well he managed to move individual fingers. – That is what is needed, a contagious enthusiasm that carries everybody along. A belief and an energy where standards don’t matter because standards are just accepted average, text book stuff. What Pádraig has achieved and is doing is way beyond that.

Tuesdays have been travel days for the past few weeks. In the pre-Ryanair age – though who remembers that, honestly? – I would have felt like a jet-setter. There would have been sufficient legroom, some nice drinks, and the most exquisite food, served by stewardesses who would have done their utmost to make this a  real pleasant experience.

Today, flights are more like bus trips in South America: squashed, hot, overcrowded, and affordable. Travelling through the night and arriving when everybody else has been asleep for hours.

 

Months

imagesIt’s a special day.

25 months to the day since Pádraig was struck by Mr Couto’s van.

One month for each year of his life.

And you’ll say, tomorrow will be another day, not doubt. Better, I hope. Don’t be sad and if you are, don’t show it.

There are days like these. For me, it wasn’t a good day. It’ll pass like all days. That’s the good thing, even about bad days. They’ll all pass.

For Pádraig, I think it wasn’t too bad a day. He is beginning to warm up to his new speech therapist (or is it the other way round?) – they seem to be getting on much better with each other. During his physio, we tried out the Vojta table again which is working out really well. Having a firm base, rather than working on the bed, which is quite soft, make a huge difference, both for Pádraig, and for the person working with him. Pádraig’s physio is teaching me some exercises to do with Pádraig – and it is really ‘with’, it’s like doing them together.

25 months. One month for each of his year of his life.

Today’s German Music Tip
KC Rebell feat. Summer Cem, ► AUGENBLICK ◄. A bit on the violent side for my taste, but there you are… 
What’s hot
Stories
What’s cold
Silence
The German word/phrase/verse of the day
Das hat alles seine Ordnung so.

An  Saol  Live your Life , An Saol eileAn Saol

Old

Imagine there was as much outrage about the treatment of old people in our society as there is about the abuse of young children. After all, both are dependent and often equally helpless.

Imagine there was as much outrage about the treatment, about the abuse of persons with severe acquired brain injury. Because leaving someone lying in a bed without the appropriate care, without badly needed therapies, allowing them to acquire additional injuries, is abuse.

It was a woman on RTÉ this morning who made the first point about old people. The second point follows on logically, doesn’t it?

You already know that we did not make it to Tating this weekend. There were weather warnings being published every other hour. So today, we went again for a walk around the block. Only on the other side of the street.

I had seen the shop before but had never been close enough to actually see the exhibits in the store window. It’s a shop selling ‘fun t-shirts’.

So here are some funny Germans t-shirts.

It’s difficult to translate jokes, if not impossible, and won’t try it here. My two favourites were the one about being overweight (Ich bin dick. Du bist hässlich. Ich kann abnehmen. Was machst du?) and the one about know-alls (Wenn man keine Ahnung hat, einfach mal die Fresse halten). They both made me laugh, for different reasons.

It’s good to have a routine. It re-assures, it’s predictable. That’s why I like it. But where is the fun in that? So, next time, I’ll walk a different way again, and if it’s just on the other side of the street. Who knows, I might discover more fun things.

This afternoon Pádraig did what we had been doing every year, except for the last two years: we watched the really exciting, beautiful final of the Tour de France. A nice, relaxing end of a good day.

Lastly, and I almost forgot to mention it, today is Mick Jagger’s 72nd birthday (check out Wild Horses)  and the second anniversary of J. J. Cale’s fatal plane accident (check out this long and brilliant video recording with Leon Russel)

Today’s German Music Tip
Max Mutzke, Welt hinter Glas. This song was posted just over a month ago. Though it didn’t become an instant hit, the Germans commenting on it think it’s an “Ohrwurm”. It’s not bad, neither the typical, unbearable, mainstream German Schlager, nor rap.
What’s hot
Wild Horses
What’s cold
No music
The German word/phrase/verse of the day
Selten so gelacht!

An  Saol  Live your Life , An Saol eileAn Saol

UpSideDown

IMG_1452In Germany, there is one way of doing things. A right way. And a wrong way. There are loads of laws and regulations, contracts, signs, warnings, police, bureaucrats, and little green and red men in traffic lights to help you find out what is right and what is wrong. That’s why life in Germany is so easy. And that’s why the country is so well off.

That is also why I screwed the handle of our pot back on the right way, the way it was when we got it. It was easy. And pretty obvious the way the handle had to go on.

Unfortunately, the handle always became loose again after a day or two, no matter how hard I tried.

Then, just a few days ago, Pádraig’s helper, who is from Poland and who has thick glasses, decided to do some good. He organised himself a screwdriver and screwed the handle back on to the pot.

Only that he did it upside down..

I was going to talk to him about this – I like things being done properly. The way they are supposed to be done. And there is only one way of doing things right, which is easy in the case of handles to be screwed on to a pot – unless you have thick glasses,  I thought.

Then I noticed that, for a few days now, the handle didn’t get loose anymore. Upside Down works!

I’ll leave it up to you to get the lesson….

Last night, Pádraig had a few uninvited visitors: almost a dozen wasps had somehow ‘invaded’ his room. Pat managed to get most of them during the night and I got the remainder in the morning. Really strange, this wasp business. Pádraig himself was well today. He continued to make sounds when he wanted to – for example when his uncle from America rang. He’s also doing really well with his three meals a day.

We had planned to go up to Tating either today or tomorrow, just for the day and with Pádraig, but the weather is incredible with loads of wind and more rain, as well as thunder. So we took a walk around the block instead…

Today’s German Music Tip
Deichkind, So`ne Musik. Wirklich – so’ne Musik!!!
What’s hot
Up
What’s cold
Down
The German word/phrase/verse of the day
Na hörnsema, wenn das jeeda machen wüade – wokämenwadahinn?

An  Saol  Live your Life , An Saol eileAn Saol

Sounds

Well, talk about stuff happening.

imagesLast night, Pat had a bad night, because it was her turn with Pádraig and, no matter what she tried, he didn’t sleep and, “worse”, he didn’t keep quiet. I put “worse” within quotes because Pádraig making all those sounds on one hand prevented Pat from having a quiet night’s sleep; on the other hand, well on the other hand, we would give a kingdom if Pádraig started to use his voice again.

That’s what he did today. He is, clearly, becoming more aware of his voice, and he is learning how to use it.

Then, and we “blame” his OT for this one, he is now clearly helping when we put a cup into his hand and support him bringing it up to his mouth. Even better, because he is bringing the cup up to his mouth himself, he is more aware that liquid is about to enter his mouth, which in turn makes it much easier for him to swallow.

If proof was needed that therapy is more than just an expensive largely useless maintenance programme, here is (yet another) proof to the contrary.

Here is to progress!

Dreamboaters never give up because they know that even little signs are signs of things to come as long as you believe in your own strength!

1Today’s German Music Tip
Roland Kaiser, Warum hast du nicht nein gesagt (feat. Maite Kelly). In case you ever wondered why rap is so popular in Germany, listen to this more ‘traditional’ German “Schlager”. Oh mein Gott! They are blaming each other for not having said ‘no’ to you-know-what.
What’s hot
Voice
What’s cold
Silence
The German word/phrase/verse of the day
I thought, a “Bild” says more than a thousand words. Here is the first of a few pictures from Germany’s worst, but most widely read newspaper, the “Bild-Zeitung” on what is “typisch Deutsch”

 

An  Saol  Live your Life , An Saol eileAn Saol

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