You know that there are a few things I have promised (myself) to do. Delivering An Saol services to persons with severe ABI – and change the minds and hearts of people in relation to severe ABI. Travelling with Pádraig and a friend to Alaska. Getting Irish citizenship. Learning Irish. – Hard to say what’s the most challenging of these…

This morning, I had a chance to work on my Irish. One of Pádraig’s (literally:) older friends visited him. We had been in touch via email but never actually met. The time he visited just flew by. Great company! He brought with him a few presents, one  was the just published Irish language homophone dictionary by his brother Rossa, in which “words which sound the same yet have different meanings are brought crashing together to create wonderfully silly sentences”. Here’s an example (if you are a non-irish speaker get an Irish-speaking friend to read this out to you!).

Thabair cuid dí Dee d'aoi dAoidh ar d'i.
Give Dee's share of the drink to your Hugh's guest on your island.

I’ll have to find another funny sentence for tomorrow. I reckon if I did one sentence a day, I’ll have a few definite conversation stoppers by Christmas:)

Seriously, I still feel so privileged each time I meet or get to know one of Pádraig’s friends. They are truly exceptional. They are the people he was probably thinking of when he was planning his Island Republic off the West Coast.

Pádraig had one hour of music therapy today. He managed to play a few chords on an electric guitar – with a little help from his friends! They try to find music that he really likes (difficult to find music he wouldn’t like, apart from Udo Lindenberg:). His favourite at the moment seems to be Wagon Wheel.

Oh, north country winters keep a-getting me down
Lost my money playing poker so I had to leave town…

I think there is quite a bit of thinking going on here on how Pádraig’s spectacular spelling and cognitive progress can be developed even further. Can’t stop thinking about it.

Still amazed by yesterday’s spectacular ‘switching’ exercises by Pádraig. Just thinking what if a computer read out the individual letters, put them together and did some predictive composition of words – like what any phone would do?

Today, there was some checking, ultrascans, just to make sure all organs are in order. They are. (I didn’t want to, but had to, think of the proposed donation in the US.)

Wheelchair – minor but important checks. It’s great to have a specialised clinic for this kind of stuff, with an experienced physio looking after it.

Music therapy in the afternoon. Great singing, rhythm, music.

Talking about music – a good friend, musician and prospective film maker asked Pádraig yesterday would he be ok if he made a film about how he has been recovering from his accident – and Pádraig, very clearly, said yes. So watch this space.

Talking about music – I just realised, when checking out the statistics for the blog, that some of the people who have been looking up the blog daily, are people who googled “verdamp lang her auf Englisch”, finding the *only* link to the lyrics, in English, of “Verdamp lang her” by BAP on the web. – But, how did they find it?

Talking about translation – there is a film, made by the German ZDF channel, called “Wärst Du lieber tot?” I’d really like to subtitle. I will email the ZDF and then see if anyone out there has the time, skill, and passion to help.

And then we’ll just have to make people – and I mean health care workers, doctors, therapists, politicians, journalists and many others; those who believe that ‘management’ of persons with a severe brain injury is sufficient – make watch it. Because in this film, they’ll hear from the people concerned, that they want to live, to be alive, that they want to participate in live, that they enjoy company, outings, movies, concerts, food, drink and whatever any of us would enjoy.

Maybe then they’ll get that what’s going on at the moment is outrageous: “managing” young people in nursing homes with drugs, PEGs, and catheters.

We did try this at home. – Watch the video. It’s brilliant. Really brilliant. It’s only a short clip from a longer video that recorded a wide range of games Pádraig played all involving the switch, including memory games and spelling games.

During today’s yes/no switch-tapping exercise Pádraig remembered who visited him yesterday (and who was not there) out of a list of about four different people. Not only did this show that he was able to answer yes/no questions correctly. It also showed that his short-time memory is working absolutely perfectly.

He also brilliantly spelled the name of one of his sisters.

And then we started with the ‘press-the-switch-when-you-hear-the-letter’ exercise.

These are the letters of the alphabet, not from A-Z but in order of frequency. And we and Pádraig are about to learn them that way. So we started with the first line and asked Pádraig to hit the switch when he heard a particular letter in that line.

What I couldn’t believe is that not only did he recognised the letters when they came up, but he recognised them with lightening speed. When we started with this type of exercise in the NRH, we gave Pádraig up to 5 seconds between letters, today he managed to immediately recognise letters without any time delay. Watch this: my hand, Pat’s voice, Pádraig’s left foot – and be amazed. (It’s just a short clip from a longer video.)

 

We knew for some time that Pádraig’s brain is working much better than it seems from the outside. That his main problem is to get his body to do what he wants it to do. But today, he has shown us that he cannot only understand the questions, but that he can react appropriately to them, take decisions, remember what happened yesterday, spell words, and get his left foot to engage the switch within less than a second when he wants that to happen.

Now. What’s next, I ask you?

We’re trying to get the house going again.

After two years of having been away and after months of building work.

It’s funny what you find when you clean up your kitchen.

Like vanilla stems – we once bought because that’s what the recipe told us to use – about 10 years ago…

Or how inventive you have to get when moving a sofa down the stairs in a very narrow hall: using a wheelchair platform lift – because there was no way to move it in any other way.

Pádraig is home again for the weekend and, if all goes according to plan, we’ll go to Irish mass in Church Street again tomorrow at 10.

Quite a few visitors today, and there’ll be more tomorrow, friends and family. Love is all around!

P.S.: Since Pádraig’s accident and the trauma that followed, I find it so much more difficult to deal with tragedies near and far. What happened last night in Paris was beyond what I can deal with in any sensible way. How can anybody do such a thing?

I missed it.

Because I was in lovely Limerick today. Still a bit of ‘real’ work to do. And it was really nice to meet friends and colleagues and students. It was sad at the same time. Terribly sad. But tonight is not about ‘sad’.

Maybe sad because I missed it. Because it’s so brilliant. More brillianter than the fada-spelling-thing.

Another day. Another therapist. Another attempt at spelling.

Only that today the therapist decided to change things a bit.

So she asked Pádraig to spell “Patrick” – that’s what is on his birth cert and was on his passport, until he got it changed.

She had brought the “Diving Bell and the Butterfly” table, the one that is not following the alphabet but lists the letters in order of frequency.

She gave the table to Pat to read it out to Pádraig while she was going to keep the “score”. (No fada this time, they had decided:)

Pádraig was great. As always. Foot down onto the switch for the letter “P”.

Next one worked out brilliant too. Foot down onto the switch for “A”.

And then —- HE MISSED THE “T” !!! —- How disappointing was that! But it can happen. Everybody can make a mistake from time to time. So Pat continued reading out the letters anyway.

When she got to the letter “D”, guess what? Down went the foot onto the switch!

And he continued to very clearly and successfully spell out his name, the full name, the one he had chosen, not the one we had given to him, nor the one the therapist wanted him to spell out.

P-A-D-R-A-I-G

I laughed out loud and didn’t stop for a good while.

PS: Just watching Kodaline on the Late Late Show and remember their offer to meet and have a beer or something with Pádraig…

You’ll remember the P-A-T spelling exercise Pádraig did some days ago.

I thought it would be logical to try R-E-I-N-H-A-R-D today, but during his therapy session it became clear I had no friends here who’d support me. They recommended to wait until next week with my name and try “Pádraig” instead today.

When I asked about the fada (the Irish acute accent) on the first “a”, the therapist had to think for a while and then said she’d put it at the end of the alphabet.

The idea was, again, to go through the alphabet (a,b,c,d,…) with Pádraig pressing the switch each time he heard the next letter of his name.

a,b,c,d,e,f,g,h,i,j,k,l,m,n,o,p – and he pressed the switch. Brilliant!

a – again, he pressed the switch. Really fast. I couldn’t believe it! So we had P-A

a,b,c,d,e,f,g,h,i,j,k, – no switch, he had missed the “D”. Oh no, I thought. He had missed the “D”. The therapist continued nonetheless – l,m,n,o,p,q,r,,t,u,v,w,x,y,z,fada – and off went the switch!!!

I had concentrated so much on the next letter “d” that I had completely forgotten not only about the fada, but also about the agreement we had made at the beginning that the fada would go at the end of the alphabet!

The whole session was really amazing. Really.

It was an amazing day, actually – earlier in the morning, therapists tried an EasyStand (a gadget that helps people without the necessary body control to stand up). Yes, you are right – the stand was too small for Pádraig. Everything is too small for Pádraig. But the good news is that they will ask a supplier to source a bigger stand.

But the highlight of the day were the visits in the evening. To see Pádraig smiling and interacting with such a delight is just incredibly. An Saol.

Here is a P.S.: you might have heard that ex-German chancellor Helmut Schmidt died recently. This is the title, in his honour, of the current Der Spiegel magazine.

Here’s something I wrote earlier, in fact last night, as the time of our departure today two years ago was approaching.

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I can’t sleep.

Today, exactly two years ago, I couldn’t sleep either. Because Pádraig and I were going to leave Dublin in an air ambulance really early in the morning to get treatment for him in Germany. Treatment Pádraig could not get in Dublin within a reasonable time.

There was a therapist in Beaumont Hospital who had got up in the middle of the night to get Pádraig ready for the trip. There were nurses saying goodbye. Holy Water was shared and prayers said.

Today, we’re back in Ireland, knowing that if we want to stay here it’ll be us who will have to organise the therapies Pádraig and so many other persons with severe ABI who want to live at home so desperately need.

We will have to be the change we’ve been waiting for.

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Two years on, the pain is still there and I have this feeling that it will never go away.

But two years on, Pádraig is with us, he has decided to live, he is taking part in life. He enjoys food, company, humour, and music. He has touched hundreds if not thousands of people around the world and is our inspiration. He is at the helm of the Dreamboat.

 

x-g-v-p “ja”

u-d-q-d-w-a “ja”

e-r-t “ja”

This is what the day was about.

Pádraig used his right hand to hold a switch. When he pressed the switch a pre-recorded voice said “ja”. So when I asked him to spell “Pat” (I didn’t want to start him off with “Reinhard”:) by pressing the button each time he heard the correct, next letter of that name – he did.

Isn’t that absolutely fantastic?!

We’ll keep practicing (inspired by the incredible “C” foot switch exercise) and the first attempts of spelling made in Pforzheim.

There was also a big meeting between HSE nurses, managers, and therapists, and the NRH specialists looking after Pádraig. We were invited to join this meeting for its second part. In essence, an application for a home care package is about to be completed and considered. This package, if approved, will provide for a certain number of hours of care per week for Pádraig. They are also considering to provide equipment. This is the good news.

Can’t wait to practice a new word with Pádraig tomorrow.

The funny highlight of Pádraig’s day – he had a huge huge smile on his face – was when an OT asked him whether he was having her on. When she wanted to find out from him what was going on!

She had spent quite some time with a switch under “his left foot” asking him to press it once for ‘yes’ and twice for ‘no’ which worked out quite well until Pádraig decided not to lift his foot up from the switch anymore.

He thought that was hilarious. What a laugh!

It all happened during his music therapy session when a number of therapists, supported by quite a few student therapists, tried to engage Pádraig with songs and talk. It worked but parts of it were so staged that Pádraig didn’t do much more than playing along without great enthusiasm.

Until he had some unrehearsed, pure fun. An Saol!

Church in Church Street.

We used to go there with Pádraig years ago to Irish Mass. Today we went back and I guess we’ll be going there on as many Sunday’s as possible.

An elderly lady with a shopping trolley squeezed in to sit beside Pat – though the church was almost empty.

When mass was over, she asked what had happen to Pádraig, how old he was, where it had happened, where did he live, and that it was a terrible day, a terrible day, outside, and that he was lucky to be alive.

She asked and said all this a few times, accompanying us back to the car, through the wind and the rain, with her shopping trolley. You probably know her.

If you don’t, you’ll recognise her next time to go to church in Church Street. Sundays, 10am, Irish Mass. She’ll be sitting there, squeezed in, beside Pat.