I started to read a book.

(It’s not by and not about Leo Varadkar, the Irish Minister for Health. There’s more about him further on:).

What’s so special about reading a book you might ask. The thing is that I don’t even manage to read the paper anymore (although I still buy them from time to time, being the eternal optimist I am).

But I had 30 minutes between trains in Hamburg Hauptbahnhof and there was this bookshop. I decided I would buy “Irre – Wir behandeln die Falschen” by Manfred Lütz, the man I heard the other day on the radio. They had one copy left. If that wasn’t a sign of something!

Unfortunately, the trip wasn’t long enough for me to finish it (and now I fear that life might take over again before I do), but what I read so far was really good.

There is one thought he presents that he feels really uncomfortable with, and so do  I. It’s not his thought.

It’s one by psychiatrists Hoche and Binding from the 1920s who supported euthanasia so that society would not have to carry the burden of (mentally) sick people. – A thought not just taken up, but put into practice by the nazis.

It’s one introduced by Nobel Prize winner Watson. Watson proposed that parents of lower intelligence should pay a higher tax if they had children since these children would put a higher burden on society.

The idea is that not all people are equal. The idea is that people have no equal rights. The idea is that not all people should have appropriate access to (health) care. The idea is that not all people should be integrated equally in society. The idea is that not all people should have a “life”.

Sounds familiar? Sounds familiar.

Can’t wait to get really going on An Saol. But we have to get that apartment in Hamburg sorted first and also get Pádraig home. It doesn’t sound like much, but it is *really* complicated.

I am so happy to be back. Hamburg and the apartment were too unreal without Pádraig. It was an empty, deserted place.

Pat has been telling me about the visits he had, about the progress on the plan to get him home, on the therapies he’s getting, on the daily struggle looking after him in a place where he shouldn’t really be anymore.

This morning, I listened to a report on Morning Ireland, RTÉ Radio One, just before the 08:30 news, about the Cross Border Directive.

Nothing got to do with the “North” this time, but with a European Directive that was implemented recently in Ireland which allows you to choose where you are going to be treated within the European Union – including dental treatment, including hip replacements, AND including physio, OT, and speech & language therapy. The HSE will pay for it as long as you are a public patient and as long as the treatment is (at least in theory) available in Ireland.

They interviewed Leo Varadkar, the Irish Minister for Health, who said that he whole-heartedly supported the scheme because it would allow not just for people to get the treatment they needed when they needed it, but it would also allow him to make a case for an increase in the health budget so that people would be able to get the treatment they needed in Ireland, rather than having to travel abroad. – It doesn’t make sense to say there is no money available to spend on treatment here, and then give the money to people for treatment to spend it abroad, he said.

He’s got a point.

Sounds like we got ourselves a new supporter for An Saol!

It feels like I didn’t get anywhere.

Two days of getting two years of ‘stuff’ organised and to me it looks like the day I arrived. Nix changed, nothing.

In the meantime, I’m wondering how Pádraig is doing. Waiting for the phone calls to find out what is going on at home. It must feel a bit like what the rest of the family were experiencing, what his friends must have felt a little like when Pádraig was away from them.

At least I have a plan. (I really like plans. Seriously.)

I’ll be coming back here after the marathon. I’ll drive over, hopefully with Pat. We’ll do another two days of packing. I’ll put stuff on eBay small ads and I’ll ask a second hand shop to take some other stuff away. We’ll then rent a big van and bring stuff we want to keep to Tating and pack the Doblo.

What got me through the day today was the offer of a really nice Irish/German couple here in Hamburg who offered their help to pack the van and to unpack it in Tating.

I feel like I should go on packing. But I can’t face anymore of ‘stuff’. There’s ‘stuff’ everywhere and I have no idea where it came from. Who brought it here? Who got all this? Who thought that we would ever going to use even half of this? Nix da.

Nixt week this day, a few of Pádraig’s friends, as well as myself, will ask ourselves what possessed us that we decided to run this marathon? We won’t be able to walk properly. Our legs will hurt like mad. And we’ll be completely exhausted. (Or am I just talking about myself?:)

There’s something you can do to help Pádraig’s friends: support them. Check out Cliodhna’s  and Emily’s marathon sites. And then, next week, watch them doing the race of their lives!

Because it’s not a sprint. It’s a marathon!

PS 1: Today is the first anniversary of Pegida. It was ‘celebrated’ by a demonstration in Leipzig. 15,000 people participated. 15,000 people participated in a counter-demonstration.

PS 2: The independent candidate for mayor of Cologne who got knifed down by a right wing ‘activist’ and who is now in an artificially induced coma got elected by an absolute majority yesterday.

PS 3: Watching a late night documentary on ZDF, “Wärst Du limber tot?” following the life of six people with disabilities who live in the Senator Neumann House of Behindertenhilfe Hamburg (BHH) – which we visited some time ago and who were about to help us to care for Pádraig in our Hamburg apartment.

I’m always looking for a word as a title for the blog entry. This one was going to be ‘mad’. On second thoughts, I went for ‘far’. Both would have been good. One a bit funnier, the other a bit more positive.

Mad – We’re treating the wrong people. Our problem are the normal! (Irre – Wir behandeln die Falschen. Unser Problem sind die Normalen.) – That’s the title of a best selling book in Germany by doctor, (catholic) theologian, and writer Manfred Lütz.

As I was been listening to German radio today trying to organise the content of our apartment in Hamburg and getting it ready for moving, Lütz was interviewed on radio at the Frankfurt Book Fair. He says that a psychiatric illness manifests itself by a person not being able to change perspective. He says that patients can be helped by focusing on their abilities not on a collection of symptoms. He says, that therapy is all about opening doors and that it is up to the patient to choose the direction of their movement.

He says, that it is the ‘normal’ people who usually cause the trouble. He mentioned economic/corporate criminals, I would add bankers, speculators, politicians, regulators, and car manufacturers. – And while we are at it: there’s plenty of people in and responsible for the health system who find it very difficult to change their perspective…

Trying to get ready to empty the apartment is almost impossible. Where on earth is it all going to go? And while I thought I was looking forward, rather than back, this here is a journey through the last two years. There is peg food, water bottles for the drip, suctioning equipment, oximetres, oxygen equipment, catheter changing gear…. there’s no end to stuff Pádraig doesn’t need anymore because he is now so much better.

How far Pádraig has come since we arrived here almost two years ago! How encouraging is that! What a reason never to give up!

Germany ain’t what it used to be.

The trains are running late, the clocks aren’t showing the right time, and last night, when I was trying to get from the Hauptbahnhof to the hotel, I couldn’t even get out of the main station because police had blocked the exit. Why? – Because Pegida has decided to stage a protest in the Düsseldorf’s city centre every Saturday and every Monday. So this huge police presence was not a once of, it now happens twice a week in Düsseldorf. My guess is that there are probably more police than Pegida “protesters”.

The second day at REHACare was really interesting. Asian participants are not just taking pictures anymore, they are exhibiting and have a really big, visible presence.

And look at this.

Yes: it’s a wheelchair mounted on skies! The second person can stand on the back of the skies and, by pushing down his heels, apply the breaks. If you look closely, there is a line hanging from the back of the seat. This is connected to the ‘driver’ and when he either falls of or pulls it, the emergency breaks go off. – There is a requirement though to do a course over a few days (in an indoor arena in Holland!) to learn how to handle this gadget…

It’s just one example of really brilliant ideas around mobility. There are other engineers who have applied the same idea to bicycles and scooters. Check out this video.

Isn’t it amazing? There is a version of this where a ‘driver’ can stand behind the person sitting and by using a joystick-type of remote control, drive the scooter/wheelchair. This thing is as fast as a small moped!

Over the past two days, and again in the train when someone saw me with all my bags from REHACare, when people asked me what i was doing professionally, I said, for the first time, that I was working with young people with severe acquired brain injury. – First, I thought it was strange. But, really, that’s what I’m doing.

For some reason, I’ve been talking recently to people about what we heard from health officials and senior medics over the past years in relation to the treatment of persons with severe acquired brain injuries, in the USA, Ireland, and Germany. And I think it’s worth looking at them again. Because now, we know much more. We know how Pádraig is doing after two years of good care and therapy.

What we heard and read includes published remarks by the National Clinical Lead for the HSE’s rehabilitation medicine programme in Ireland and former Chair of the Medical Board at the NRH in Dun Laoghaire, in relation to the treatment of patients with a disorder of consciousness, referring to the fact that there are only three beds for these patients in the whole country, leading to a waiting time of a year – when it is widely recognised that immediate intervention and early neuro rehab is necessary:

“It is very labour intensive because we have such a shortage of beds. We can’t justify anymore beds because you can make the argument that it is a much better investment of resources to invest that time and effort into individuals who are going to increase their functionality, reduce care costs, hopefully get them home, get them back to work. These are individuals who will never get to that point, so we have to limit the number of beds for that service to three.”

Note: Just read the above again. Slowly.

It includes remarks by another senior health official who said the following on Irish National Radio, following a prompt from myself (The Late Debate, starting at around 34:30, the health official’s remarks start at 37:00):

“This is about how we use our resources and are we using our resources in the best possible way. Our resources are limited. We are a small country. There are things we’ll never be able to do well. And at what level will we set the point that we say…”

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There are two really remarkable points about the above.

(1) Even people in the Irish health sector working with persons with disorder of consciousness do not believe me when I tell them that this is the view of some leading consultants and health officials in the country.

(2) Although Pádraig *is* one of the people who, according to this view, does *not* offer a good return of investment because he is one of “These are individuals who will never get to that point” of increasing their functionality or going home or have their care costs reduced — he *has* increased his functionality (e.g. only eating orally), he *has* gone home, and he *has* decreased care costs by at least 18,000 euro a month (“just” by the removal of his tracheostomy because of our ongoing insistence and care; and there is more). He  has done all this because he had huge support and got good care: he is not on any medication, does not have dropped feet, takes food only orally, has no catheter (and no urinary infections), has great skin and no bed sores (apart from those he got in Beaumont), and he has no other injuries or bugs. It looks like he defied all medical knowledge, judgement and expertise.

And to me, it looks like as if Pádraig’s live will fundamentally change the way the experts think about persons with severe acquired brain injury. It will fundamentally change the way they think, they talk, and they treat persons with severe ABI.

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Back in Germany and at REHACare for a few days.

People in wheelchairs pulling themselves and their wheelchair up to the top of the exhibition hall. Lifts lifting people up to any height desired. Thousands of people talking and living integration. Every imaginable help and support for any imaginable need.

And another fresh look at the German media, reporting on hundreds and thousands of refugees moving across the Austrian border into Germany via a small country road and Mr Putin literally going on the attack.

I met our friends from Pforzheim who introduced me to some of their contacts running different kind of care houses for persons with severe acquired brain injuries, leading to extremely interesting conversations and allowing me to continue my amazing learning experience about all the things that are possible!

One of the people I talked to said: “The question of whether to provide adequate support to persons with a severe acquired brain injury or not does not arise. They are alive because they decided to live. Had they not decided to live, they would have died, probably a few times, along the way. And because they have decided to live, they have a right to receive, and we have an obligation to provide any possible support we can that will enable them to live their life to the fullest extend possible.”

And that’s the way it is. Amen.

Check this out – a brilliant account of what got Pádraig to where he is today: Pádraig le Marcus Mac Conghail by IMLÉ.

Playing music to breathing. Slow. Fast. Soothing. Loud.

Playing music to communicate, to connect.

The music therapist is looking for music that Pádraig definitely doesn’t like. My first thought was: anything I like will do in this case.

What do you think? Any suggestions?

Home from the NRH. 8km fast run. Checking into flight. Booking hotel in Düsseldorf. Booking train to Hamburg. No packing bags. Getting up at 5am tomorrow. Like back in the auld days.

This morning I went with an OT from the NRH to our house to meet the Community OT and together we had a look at the doors, the passageways, the lifts, the hoist, the bath, the shower, everything.

They liked what they saw.

The plan now is to finish the big jobs this week. The smaller jobs next week. And get Pádraig home for a night to see how this works out.

In two week’s time the NRH OT wants to organise a bit visit and meeting with Pádraig at our house to make sure everything is in place before the discharge.

There is a huge waiting list for the NRH. We’ll have a home for Pádraig and want to get him out.

It’s a no brainer.

Does it wash?

The question can have all sorts of meanings. Depending on whether it has got to do with dirty business or dirty clothes.

In our case, it was dirty clothes.

Because yesterday was the day – wait! – that we were able, for the first time in many weeks, to use our washing machine! For me, this was a sign that things are slowly but surely starting to normalise in the house. It was a very necessary event, that wash, not just because I was running out of socks and other things, but because I need to believe that this dust bowl is going to settle some day soon.

The NRH thing is almost becoming a routine. Going there in the morning. Coming back in the evening. In between asking to be let in and asking to be let out. Asking for someone to take out things from the fridge, asking someone to bring Pádraig’s breakfast, asking why he is only allowed to have half a portion of his dinner. Anyhow, what is ‘half’ a portion? Is that ‘half’ a portion of a meal for an average sized person? Or for a very tall person? As it happens, it is half of what the company preparing the meals decided to shrink wrap.

I really do not want to sound cranky. Really. People working in the NRH are the kindest and most caring people you could come across. When you ask for something, you hardly have to wait. In many cases, you don’t even have to ask. But from where I stand it is difficult. Telling me how much Pádraig is allowed to eat does not make sense. Because…

There are days, when he eats more. There are days when he eats less. For breakfast. For lunch. For dinner. And whether it is more or less does not depend on the opinion of anyone, it depends on his form, on his appetite, and, yes, on the food. He eats more and faster and with more interest if he likes the food.

As it would be in your case, in my case, and, I suspect, in anyone’s case.

Pádraig has a brain injury. But he has been eating for months. More or less. As he prefers. That’s what I call progress!

Finally, this day in two weeks time there will be a few people who will not be able to walk. That is because the will be in the process of recovering from the marathon. Two friends of Pádraig’s, Emily and Cliodhna, have a fundraising site up and “running” – it would be great if you could support them!

PS1: Pádraig still really likes pasta and chocolate and ice-cream and beer.

PS2: Pasta on Sunday. Tortilla Española on Monday. Apple tart tonight and microwave meals. Friends! Wonderful!

“Julian Spain for you”, said Pat to me, “Maria, go on” and caused the biggest smile on Pádraig’s face for some time! – He thought it was so incredibly funny because I had asked at least three times who on earth the two of them were talking about. Julian de Spáinn? Julian who?? – Of course, EVERYBODY knows Julian de Spáinn! That is: except me poor eejit! (Well, he *is* the Secretary General of Conradh na Gaeilge after all. I had to google him though.)

That was a really great moment. Because that was him there.

Another great moment (which I missed) was when his physio asked him to lift his arm twice. She asked him just once. And he lifted him twice. You might think its not a big deal, but think about it! – Definitely another first!

So, what’s our day like?

I try to leave the house at 9am to get to the NRH for around 10am by which time Pádraig has been washed and dressed. I give him his breakfast, then there are therapies or just time to talk, lunch just after noon, more therapies or time to go for a short walk and get a bit of fresh air. Pat arrives in the afternoon and the idea is that I make my way home then and do a bit of work here (‘dust bowl attack’).

Sounds good.

In theory.

In practice it hasn’t worked like this yet. Not one day. Yet.

You will have noticed that I haven’t posted any more pictures of the extension and our kitchen. I also haven’t posted any more links to German songs. And, I haven’t highlighted any strange things I came across in hospitals or on my way to one.

The main reason for this is that the past few weeks have been very tiring. It’s funny: each time I think it couldn’t get any worse in terms of running out of time or of getting tired – someone somewhere turn it up a notch. Just to teach me a lesson.

Although – I am convinced that uncertainty, improvisation, lack of routine, all of this is coming to an end. A few more weeks, and Pádraig will be with us in Iona Road.

That day will just be unbelievable. I know that arriving in Rosslare just about two weeks ago was incredible. Coming back to the house to stay with us will be at least equally fantastic.

I don’t want to exaggerate but the last two years of Pádraig’s life have been and incredible demonstration of persistence, proof that you can achieve almost anything if you put your mind to it, and a source of love so great that it swept away any obstacles put in his way.

And this is true also for the NRH. We are just learning about and finding out how much people are prepared to go out of their way to help Pádraig and us to make our new life together possible. An Saol. Dream boaters.

I have the feeling this will be the most unspectacular post of posts.

Weekends are so quiet in the NRH. What if – An Saol organised seminars and workshops, together with the NRH, in the NRH, using facilities that are second to none in the country but unused over the weekend? Do you think the NRH might be interested?

Weekends are time for visits and easy going. Two good friends came out today. Pádraig had met them first in Beaumont where they were visiting their daughter. It was really good to see them again and it was so nice of them to come in and visit.

Pádraig is back eating almost as before, with two warm meals during the day and a good cereal-based breakfast. The only thing that is missing is the ‘pushing out the boat’ a bit food. What he is getting is all pureed and I’m sure he could do ‘better’ than that. Maybe that will change next week.

One constant we had heard about the NRH was that families were always pushing for more time. They wanted their son or daughter to stay here for longer than the allocated three months – which does make sense in many ways. In our case, I cannot wait for the discharge day to arrive. To get Pádraig home home with the support and therapies he will need.

We’ve been here for almost two weeks and I suppose that all the information that had to be compiled will have been compiled and passed on the HSE by now.

Next week, I’ll go to RehaCare in Düsseldorf where I hope to meet our friends from Pforzheim and where I will check out ‘stuff’ for Pádraig and for An Saol. I’ll also spend a few days in Hamburg starting to clean out the apartment…