Tech

In parallel with all this other stuff going on and an extremely busy day packed with therapies, we have been working with Pádraig using his new amazing tech gear. Pádraig’s therapist had given us some exercises to do, really a therapy plan for the four weeks. Pádraig flew through the week 1 tasks: selecting areas of communication and then selecting the pre-set communication segment he wanted to use.

So he did some ‘fun’ things, using the device – watching back on some of the coverage yesterday and listening to one of his most favourite groups, Bell X1.

 

He couldn’t believe what was going on! It was just pure magic simply watching his joy and amazement at the tech he was using.

 

 

Basta

Never has this message be broadcast to the nation about severe acquired brain injury: the families are abandoned, the injured neglected. It’s time for change.

We really would need our heads examined if we allowed the current situation to continue.

This week, the private suffering and misery was converted into a public outrage. Today alone on TodayFM, Newstalk, Raidio na Gaeltachta, Primetime, the Irish Independent and other media outlets, the message was sent to the politicians: Basta. No more.

With a bit of luck, there will be more coverage tomorrow on Morning Ireland.

We’re just warming up:)

Pádraig went to a park today and two young boys started to talk to him and to us – a Syrian and a Lebanese. They wanted to know what “that” was in his neck. Pat explained to them that it was from a tracheostomy and why he had had one. They felt sorry for Pádraig when they heard about the accident, and the Syrian boy asked whether Pádraig had died? – Even Pádraig had to smile at the innocence of that question!

Competition

Today demonstrated how news stories can change really fast depending on what is seen as important. The report on Shane Grogan and his journey and that of his family was scheduled for Morning Ireland today, and confirmed last night. And changed later in the night. I’d say for bad Apples. There is a plan to have the report on tomorrow morning, but who knows. We’ll see tomorrow, or rather: hear.

>>> NEWS JUST IN: UNLESS SOMETHING BIG HAPPENS, THE FIRST OF TWO REPORTS WILL BE ON MORNING IRELAND BETWEEN 8:00 AND 8:30 TOMORROW MORNING AND ALL MORNING NEWS BULLETINS WILL CARRY A SHORTER NEWS REPORT! <<<

Pádraig is doing well with his therapy. The plan for tomorrow is to climb stairs. When I heard that, I was wondering whether this was something real or more an expression of ambition. In the end, I decided to look at it like I’m looking at the Morning Ireland situation. It’ll all be revealed. Tomorrow.

Today, I got a bit of competition. Chris (remember, Chris is one of those three auld folks attempting to cycle from Hollywood to Napa next month) started what he calls a ‘blog’, and Facebook calls ‘Notes’. Have a look at it!

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MorningIreland #1

Listen to RTÉ Morning Ireland tomorrow morning between 8:30 and 9:00 with a report on the severe acquired brain injury suffered by Shane Grogan four years ago as the result of a vicious assault in Tuam, Co. Galway – his journey to various hospitals, the need to go abroad for neuro rehab, his care in a nursing home and the wish of his parents to bring him home.

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There will be a second programme around the same time tomorrow on Morning Ireland about Pádraig.

Verhandlungsbasis

Germany is full of surprises. As you would expect, it’s not necessarily a “fun”-kind of surprises. This is not a “fun” country. Its more a solid, established, a ‘we-all-know-how-this-is-done-and-we-won’t-do-it-any-other-way’ place. Everything has its place. And that includes the seasons. These days it’s all about Herbst: autumn recipes, autumn drinks, autumn decorations, autumn colours for your wallpaper,

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Could you imagine Irish people asking whether you are already in autumn mood, suggesting a few decorations for your home? What’s next? Christmas?

Pforzheim today brought memories of home. This morning, Carol Moran sent greetings to Pádraig and myself at around 7:45 which was really nice! This afternoon it started to rain all of a sudden, after a week of temperatures in the low 30s.

It stopped me from going out ‘training’ for the Great American Cycle #2 on my new bike that I bought yesterday, on what the Germans call “Verhandlungsbasis”, like the asking price. The person selling it via a bike shop was looking for a massive 60 euro but came down to 50, which left me 10 euro for a pump and a spare tube. It’s a German made bike, it has a brilliant Shimano set, and look at these tyres: just perfect!

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Aldi

You think, I thought – they must have sense. The Germans. The must have thought about this.IMG_5257

But they obviously didn’t. Who in their right mind would even think about selling, never mind buying, never mind giving as a present a “Romantisches Bastelsortiment”? (I don’t think there is a word in the English language that would appropriately translate “Bastelsortiment”:)

We went down to the Oechsle – Fest for the second consecutive day – and I still cannot grasp the germanic side of it all. It’s awesomely awful!

 

The weekend is almost over – long live the weekend!!!

Pforzheim

One week gone, three weeks to go. This evening we were looking for Pforzheim. I had bought a real cheap Lenovo dual sim phone on eBay and tried to set it up, starting with my location for the weather report. There was a whole long list of cities, none of them, apparently, matched Pforzheim.

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So we forgot about the phone and the weather forecast and went to look for the real Pforzheim, the home of the annual Oechsle Fest, remembering one of Pforzheim’s most famous sons after whom the famous “Oechsle” scale for wine was named. (Now don’t tell me you’ve never heard of it!)

Pádraig really enjoyed the outing, the people, the smells, the sounds, the music, the old and the young, the rich and the poor, the mix of everybody and everything. Tonight, he is as tired as we are at the end of the first week here in Pforzheim.

We decided that by the time we’ll leave here, Pádraig will be able to walk, assisted by Pat and myself, and to go up the stairs. To make sure that that will happen, we are practising ir every day! And what are physics laws in comparison tight the human stirig.

KeepGoin

Loads of conversations with other families and people looking after survivors of sABI. The amount of things you can learn from others who are in the same situation as ourselves is incredible. Of course, every family, every survivor, they are all different and they all deal in different ways with the situation, but there is still a huge common ground.

At the same time, my head is spinning. We are doing so much work here with Pádraig and we know, it’s still not enough and we could do so much more. There are so many aspects to what he needs and is longing for, from challenging therapy sessions, to days out with friends and good company.

i am trying to book flights back to Ireland to meet with the Minister of Health and Fianna Fail’s spokesperson for health so that we get their commitment to support An Saol’s pilot project. In parallel, we are trying to get the 1,000 km fundraising bike tour on the road. While all the time dealing with everyday stuff that would need a personal secretary to do all this properly.

Inside, I’m crying and in despair much more often then I would like to. There are doubts and feelings of inadequateness, loneliness, utter helplessness and raw outrage all mixed up with mental and physical exhaustion.

I guess the trick is to keep going’ –  no matter what. If it was easy, it would all have been done before! And we know that we’ll get there!

Walking

Here is a bit of German humour – a therapist here in Pforzheim put on this t-shirt especially for us!

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Here are, finally, a few pictures from our trip last Sunday. It was Pádraig’s second regular airline flight since the accident and his first regular train ride, including a change of train in Karlsruhe on our way from Frankfurt Airport to Pforzheim. It’s so much more comfortable for him on the train than it is traveling in the car, it’s so much smoother and he can sit right beside us.

And here is one of the amazing things Pádraig is doing here: walking!

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Positive

Good friends of Pádraig’s got together for the mother of all coffee mornings yesterday to meet old and new friends, neighbours and colleagues, eat sumptuous  home-made cakes, drink delicious coffee and tea, try their luck on a raffle with incredibly attractive prizes and spend some time on this nice summer Sunday in great company – all for “Caring for Pádraig”. And, from what I’ve heard, everybody had a brilliant time.

Pádraig could not join, unfortunately – his got up at 4am yesterday morning to get to the airport and travel to Pforzheim in Germany to one (if not the) most advanced neuro rehab centres around. It’s a centre that is pushing the treatment of its clients to the limits, going with them to “places” they never thought they’d be able to go to ever again –

He would not have been able to do this, had it not been for the humbling generosity of his friends and family, like those who organised, contributed to and attended yesterday’s coffee morning, those who work tirelessly to fundraise for Pádraig’s care, so his stay and treatment in Pforzheim can be paid for (amongst other things). Thank you!

Here, the diagnosis is: positive. Pádraig has much more control of his legs, hips and lower upper body than before. He is, literally, working his way up – so shoulders, neck and head will be next. This means that he’ll need to concentrate on this part of his body and exercise loads. As much as possible. Work out. Push himself as much as he can. It’s common sense: if you want to improve physically and mentally, exercise is your only man. Wer rasted, der roster. The body, someone who knows told me once, is lazy by nature – if you don’t use it, it’ll shut down eventually.

Another article about An Saol was published today in the North (of Dublin:) –

Dublin People – COMMENT: An open letter to Minister for Health Simon Harris

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