Headway Ireland, one of the long established organisations working with and for persons with acquired brain injuries today agreed to support the An Saol Project, our proposal to run a three year pilot to connect the practice of long-term neuro rehabilitation of survivors of severe ABI with current research showing that only intensive mental and physical exercise promises improvement of function. They will also contribute to the discussions on 18 June (Film and Launch events). This is really brilliant news.

More – we also heard from the HSE, the Irish Health Service Executive, that An Saol can use their premises at Odins Wood in North Dublin as a place for weekly Saturday meetings and networking with the survivors of sABI and their families. This is really really positive news and shows that things are moving!

Back in Pforzheim…

Pádraig is not just doing very intensive physical work, he is also doing an hour of cognitive therapy, using different programmes to train and develop different aspects of cognition.

One of the exercises he did today was to put numbers into the correct order.

The numbers in the first row were in random order and had to be put into ascending order in the second row. These are really interesting programmes offering different types of challenges. To put it into perspective: this exercise was level 16 of counting exercises. To be honest, I was a little concerned whether we should move on to level 30:) I’ll check with the therapist tomorrow! Whatever the level – it is so great to see that Pádraig is able to do so many different types of cognitive tasks and complete them perfectly – especially if I compare that to where he was when we were here last time, less than a year ago.

PS: Just realised that I hadn’t put up the blog post for 22 April which I had written but not published – I must have fallen asleep before I had a chance to hit the ‘publish’ button:(

Don Quijote has joined the Dreamboaters. Why? – He had to. Because it’s the right thing to do. (Thank you, Ana, for pointing that out to me:)

No pictures nor videos of Pádraig today. The one I could have taken was that of the snow shower at around lunch time – but that was too depressing. “Der April, der April, der macht, was er will” said one of our German friends with a resigned tone in his voice looking out the big window where we should have been able to see the Black Forest.

I’ve been thinking about two question two different people asked me recently. One person asked “Why are you working on An Saol instead of just concentrating on helping Pádraig?”, the other one asked “What are the parents and friends of the other survivors of sABI contributing?”. These are valid question and ones that are hard to answer.

I suppose, if all of those affected by sABI were united, able, and capable of shouting from the roof tops “Stop this violation of the human rights of our sons and daughters!” – that would make a big difference. The reality is that we all are so exhausted and  tired fighting for our own sons and daughters that we find it difficult to do much more – which is the most likely, though not the complete, answer to the second question.

In our case too, our son is our first priority. But I know that by helping others in a similar situation we will also help him, as well as us. The injustice, the lack of integration and inclusion, the denial of some of the most basic and fundamental rights as a human being to those who are literally voiceless, is not an individual matter – it’s something that we need to deal with as a society. While it is not a quantitative matter: there isn’t a large number of survivors of a severe ABI (sABI), though the numbers are growing -, it is a qualitative matter: the way they and their families are being treated, to me has a distincti feel of being medieval and has no place in a modern, inclusive society that values human life and equality of human life.

For a doctor to say: persons with sABI do not merit treatment because they will not get better is not only factually wrong (as recent research has clearly and unequivocally demonstrated), it is also outrageously discriminatory, biased, and bigoted. For a health professional to say “It would have been better had he died”, is equally shocking.

As a society we must ensure that these views are not tolerated. As a society we must ensure that survivors of sABI are treated with respect, dignity, and equality. Which is the answer to the second question, I suppose. And the answer to the question why this is an issue not ‘just’ for the survivors and their families, but one for society itself.

We have an obligation to fight injustice whenever we see it, even if it doesn’t affect us directly. Because if we don’t, no one will fight for us when it does.

PS: RTÉ played a request for Pádraig on The Weekend on One this morning, a brilliant song by Simon and Garfunkel, but covered here by Aretha Franklin. What a brilliant choice:

The broadcaster, Carol Moran, playing the song also mentioned that there is a joke you can only tell once every few years in Ireland: “You fill up my census” and then she played Annie’s Song on Ireland’s census day. We are getting the forms for the whole family in Irish – thanks to Pádraig:)

One doctor treating Pádraig once told me that Pádraig would not recover and asked me whether I thought that for someone as beautiful, bright, and intelligent, a life with such a severe injury would be meaningful. (From his point of view, this was, of course, a rhetorical question.)

Today, I went with Pádraig to a supermarket and walked along an aisle with I’d say a good 10 metres of yoghurt of all sorts of different makes, colours and flavours.

Nobody needs this kind of variety. It gives the word ‘meaningful’ a whole new meaning.

This blog is a kind of a journal of Pádraig’s journey. But it’s more than that: it is about his “Lebensfreude”, about his “joie de vivre”, about something that the English language doesn’t seem to have an appropriate word to describe.

Pádraig’s story has a universal message for us all, for all of us who at times feel beaten, not being able to get back up again.

I am beginning to think It’s about the essence of life, about life stripped of all these things we think we need. It’s about life life. Us not chasing things and people and influence and power and bigger, better, brighter, faster, more expensive, more exclusive, more exotic ‘stuff’. Because none of this we need. Instead, it’s about friendship, compassion, big hearts, and tons of love – because this is what is life and what keeps us alive.

It’s a lesson for life you can tell people who feel life has treated them badly; who feel there’s no way out; who feel that another person’s life is a commodity one can put a price on, one can buy, pay for, or put aside, maintain or even let go –  when it suits you or the ‘system’.

Think about it. Life and it being meaningful.

We started with the ‘routine’, built up to a deafening crescendo, and ended the day with a robotics session, as usual. Usual?

The ‘routine’ was speech therapy, followed by cognitive therapy. I’ll write about that some other day because today, I want to focus on something I felt was sensational. Look at this picture:

And now look at it again. I am supporting Pádraig’s head. Daniela is holding his arm. BUT – no-one is holding his upper body except the man himself. He has his left arm on the red cube, but he is not leaning agains the cube. And look at the gap between his stomach and the standing table with the black padding. He is not leaning against the table either. This is the very first time he is standing whilst maintaining his upper body himself. – This is a ‘selfie’ I took. I am sure someone not checking on Pádraig at the same time and looking at us from a bit of a distance would have done a better job taking a picture of this than I did. (And look at Daniela: how proud and happy she is! She wouldn’t dream about complaining of me taking a picture of this brilliant moment, and of sharing it with you here. To the contrary!)

And this is someone who, according to consultants, is not worth ‘investing’ in because there is not ROI, no return in investment – given our health system with limited resources that cannot be wasted on such cases, according to the same consultants. If you took away our accommodation and food costs here in Pforzheim, and just looked at the cost of the treatment, that cost of therapy is not significantly higher (if it is higher at all) than the cost of the care at home. And if you asked me, I would prefer intensive therapy any day over intensive care hours for Pádraig. The reason why intensive, ongoing, and sustainable therapy is not available in Ireland, has nothing got to do with resources. It has everything to do with a health system that is not geared up to deliver what research has demonstrated to be the best, if not the only, appropriate treatment for a severe brain injury.

The standing bit wasn’t all. Pádraig also walked across the room with the help of two therapists and myself. – No mechanical aid. No risk assessment for the therapists. We walked him across the room, turned him around, and walked him back. In Ireland, they do not even allow injured like Pádraig to use the one and only Lokomat in the NRH, because that is reserved for those who can already stand by themselves. Never mind ‘walking’ him across any kind of distance. At home, we were told that three carers were needed to transfer Pádraig from his bed to the wheelchair using a hoist – here, three people walked him across a room and back without any mechanical aids.

In between, I practiced with Pádraig an exercise one of his therapists in Dublin had shown to us. While sitting in the wheelchair, Pádraig lifts up both of his legs, and then lowers one after the other.

He did this four times today and I only managed to get the camera out for the last time…

And, finally, here’s the straw – not the one that broke the camel’s neck, but one that prevents the fluid from running back down when you let it go; it has a little valve on the bottom. Again, look at the picture. You can see that Pádraig managed to pull up some of the drink almost to his mouth.

There is still a bit missing but this was the first time he pulled up that much using a straw. What is so easy for us, closing our lips around a straw and pulling up the air and with it a drink, is still tremendously difficult for him – but he is getting there. It’s a really good exercise for his lip closure and breathing.

He’ll keep going, and he’ll be getting there. With the help of all of you! Go Dreamboaters. This ain’t no dream. This is real life. This is nothing, but absolutely nothing else but an ROI, a return on investment. Because: Pádraig wouldn’t have got anywhere without it, without the ‘investment’. He could have but never did give up. He kept investing and he is still putting all his energy, all his will power, and all his defiance of logic, physics, medical knowledge, and predicted outcome onto the table. And you know what? He has started to cash in. And I know as well as you do that there’s more where this is coming from! Watch this space!

What would have been nicer than to finish the day with a BBQ?

People in wheelchairs, therapists, carers (PAs:), families, all sitting outside together, having a chat, getting to know each other a little bit better, learning from each other, cracking a few jokes, having a bit of fun… And Germans must be the Weltmeister in BBQs. They even have vegan grill ‘stuff’ that looks like meat. And, of course, there was non-alcoholic beer (before you ask: …and no other beer;). I wanted to tell everybody about Sir Roger Casement and how the German U-Boot had brought him and loads of guns to Ireland a hundred years ago supporting the Irish rebels against the British – but never managed to do so. There was too much going on, and my little story would not have fitted in at all. Even without ‘my’ story (which Pádraig would not have liked me to tell anyway;) it was a perfect evening and end to a long and very busy day. One more day and the first week will be over. Can’t believe it.

I think we almost got sun burned today. After another early start, a long day of therapies, and lunch, we sat out on the centre’s famous balcony looking out over the Schwarzwald (where did it get its name – there ain’t anything ‘black’ about this glorious forest). It’s all about Vitamin D, we had been told. But – as Baz Luhrmann had told the ladies and gentlemen of the class of ’99 – “wear sunscreen” is what you do, whatever else you might be up to. Well, we didn’t and we just escaped a little red faced but without a burn…. pphhh!

To give you an idea of the day.

I get up and get ready myself. Then I do the same with Pádraig. I help him with breakfast in the centre’s Bistro.

This may sound like nothing, but, just to put it into perspective: at home, we have two PAs (carers) arriving at 7am. One leaves at 9, the other at 10.30. There have been days, when they finished washing him and giving him breakfast by 9.45.

Therapies start at 8am. Let’s say we start with speech therapy, followed by cognitive therapy at 9.30, followed by three hours of physio at 11, followed by an hour in the Lokomat at 2pm, and a very late dinner/lunch at 3pm, finishing that at around 4pm. They told us we could use the MOTOMed with arm trainer in the afternoon – just before  Abendbrot (evening meal) starting at 5.30. During the day, I’m the assistant therapist and make sure Pádraig gets enough drink/water and food. I also look after whatever else he might need. At the end of the day, it’s bed time, time to get undressed and go to sleep.

Apart from the help in the morning (5 1/2 person hours), Pádraig get’s another 2 hours at lunch time (should be two but is one PA at present) and a further hour (by two PAs) in the evening.

In terms of therapy, he gets a visit once a week from his community physio and from his community speech and language therapist. The sessions when they work directly with Pádraig are rarely longer than 30 minutes, often shorter. Once a week.

What I find amazing is that I can do all this. I can’t do much more than this because there isn’t enough time, but I can do this. In other words: one person can do all of this. And, apart from the therapy, it’s not only not exhausting, it’s actually the most rewarding thing I can imagine to be doing. It’s stress free and there is no hassle. I feel I am doing the right thing.

And this is what life is all about. Isn’t it?

PS: Just in case – what they do here in Pforzheim with their intensive therapy is a ‘booster’, it cannot be and should not be done over prolonged periods. What does need to be done over a prolonged period and in between these ‘booster’ sessions is regular, meaningful and sustained neuro rehabilitation of about 15 weekly sessions – something along the lines of what An Saol is proposing with its pilot project.

Following an amazing day of therapy with a tiny baby duck, today it was high tech computer EEG-led therapy that doesn’t do magic but, apparently has helped people with different kinds of brain-related illnesses and injuries.

I’d heard about it. I’d talked about it to some people. I’d read a little about what it does. – But I’d never seen it in action. Today was Pádraig’s first neuro-feedback day. The idea of neuro-feedback is that a computer programme can train self-regulation of brain function at an unconscious level using sound and video feedback in relation to your brain’s activity.

Whether it’ll help or not we don’t know – to me it’s worth a try.

From this afternoon, Pádraig and I will be on our own until Thursday next week. I just thought that I’ll be doing the job of six carers and that I’ve been doing all along. Over the 4-5 weeks that will save the HSE thousands of euro. You wonder what’ll happen to that money… And I wonder whether the HSE should have assessed the risk to me as they had to with the carers who had to hold Pádraig’s head in the tilt table – they now won’t because of the risks to their arm. And just in case you wondered – this is *not* a joke.

Everything is possible. If you want to.

Pádraig can travel in a commercial aircraft. So what?

Nonetheless, it was a big day today.

And the run up to it was almost as exciting as the day itself.

It felt like as if I had slept about five minutes when I got up really early to pack the car with too many bags, get Pádraig ready, and head for the airport. Aer Lingus were really nice and allowed us to check in our hand luggage for free – which was a life saver because our ‘hand’ luggage was, in fact, three cases of exactly the maximum size of that they allow you to take with you on board.

The following are snaps chronicling what happened today: in Dublin airport at the crack o’dawn out onto the runaway because the bridge had decided to brake down on a weekend when not mechanics are nowhere to be found; “head up” on the plane wasn’t easy when his long legs were pushing against the seat in front; out special service bus waiting beside the plane on the runaway in Frankfurt; the special container-type lift taking us down from the plane and opening up directly into the bus; arrival at our wonderful apartamento, with a balcony and a nice sofa, and a view of the brilliant sensory garden below.

Despite being absolutely exhausted, Pádraig managed to eat for the first time ever since his accident, a full Bratwurst, and drink a glass of orange lemonade. It’s a sign of things to come… in the true dreamboater spirit!

We’re going to bed eearly-ish as we’ll start the programme tomorrow morning at 8am.

What a day! Everything is possible!

We’ll be going to Pforzheim tomorrow and we’ll have to get up at a time that gives the word “early” a whole new meaning to get the Aer Lingus flight to Frankfurt. Pádraig’s first scheduled flight since his accident.

Keep your fingers crossed for us (or do what you do to wish someone luck:).

I’ll let you know how it all went tomorrow night. Can you feel the suspense?