There is a slow but steady increase in the duration of the exercises Pádraig is going through. Today it was not 20, nor 30, it was 40 minutes in the Lokomat, the robotic-type ‘suit’ that simulates walking with him. He was also standing up again for at least an hour, stretching his arms up to the ceiling in intervals. The therapists stand on two high-up chairs beside him, he has his feet firmly on the ground, and they lift his arms up towards the ceiling that is not really high enough for him to fully stretch out his arms.

It’s the third day that he is on this 3l-of-water and no-Sondenkost-but-pureed-‘normal’-food diet. He is still doing well.

I feel this is all a bit of a mad-person’s-mission, but in a very strange way, it also feels so much more ‘normal’ than doing those very gentle, careful and cautious controlled exercises. Pádraig’s efforts in Hamburg, the ‘Standing-up-bed’, the three-meals-a-day-diet, the long walks along the Wandse, the therapies at home, the trip to Lourdes are all paying off. They have prepared him for this training camp which he would not have been able to take in his stride just a few months ago.

The big big question will be how to come up with a way to sustain all the progress he is making here, at home. There is another young Irishman here we knew from Dublinwith a severe acquired brain injury  . And, I think, the same question arises for him and his family.

What’s becoming clearer as well is that even the German system, with so much more money and access to so much more resources than the Irish, has its limits and limitations. Even here, while there is no problem if you have cancer and need access to drugs that might cost 10 or 20,000 euro a month, there is a problem if you need access to therapies over a long period that cost a fraction of this amount. Therapists don’t have a strong enough lobby group. A full time therapist in Germany earns between 1,700 and 3,000 euro a month before tax when working in an employment situation. Compare this to the cost of drugs.

It’s becomes clearer by the day, how badly An Saol is needed. And it is coming together. We are working on the website (it’s up and running on http://www.ansaol.ie – but not with the correct content yet) and soon, the An Saol’ers will have their own email addresses. Our first application for funding went in to the Department of Justice and Equality and we’ve got our first significant donation. – Strangely enough, we are still struggling with getting a bank account because of the bank looking for all sorts of additional information. Banks. You’d never have thought how closely they follow regulations.

Can’t believe it was just the second day of our stay in Pforzheim today. It feels so much longer.

Pádraig broke a few of his own personal records today.

He stood up for an hour in a standing frame, the ‘Stehpult’, and he ‘walked’ for half an hour in the Lokomat.

His ‘logo’ was scheduled for late in the day, after 4 hours of hard exercise.

What a waste, we all thought. What will Pádraig be able to do in logo therapy after all this hard work?

Well, he surprised us all. He did really really well.

Someone even managed to get him one of his favourite drinks, which we managed to share between the three of us, celebrating the birthday of our favourite person (don’t tell anyone, it’s a secret).

There was no coughing, no verschlucken, no problem whatsoever. He washed that down without a bother in the world.

We were told, Pádraig needs to drink 3 litres of water every day.

Today we were thinking ( as a joke), that if it didn’t work out with he water, we could substitute it with the ‘good stuff’.

It was also Pádraig’s second day without the auld peg feet, or ‘Sondenkost’. Instead, it was again ‘normal’ food, turned into liquid via the PEG. What a difference that will make to so many things, not least his digestive system.

The nicest surprise for Pádraig today was, however, the visit by his younger sister who came back from Spain for a visit. We’ll all be back together, the whole family, with himself, his two sisters, and ourselves.

It’s like the start of a new year. Pulling off the first page of the calendar of a new year. Still struggling with the idea of being here at all, there were a few impossible things that happened today, all in one go.

They happened, because there is a bunch of people here who believe that things are possible.

Rather than the many people we’ve met who’d tell us about all the reasons why this that or the other will not be possible or won’t work.

In a way, though they don’t know this yet, they are Dreamboaters.

They are completely unconventional, they are really difficult people to deal with (because they know it all), they are chaotic, creative, driven, and convinced.

Patrick stood in a ‘Stehpult’, a kind of standing device, he got his limbs moved into all sorts of impossible directions, it’s no-more-peg-food-day (but real food through the peg), it’s three-litres-of-water-a-day-day from-now-on-day (I’m going to try that myself), and it’s Lokomat-Day.

And it’s just the beginning.

We’ve been thinking about Sara since we arrived here. She will always be with us. Always.

Some people say that following the death of a family member and divorce, moving is the third most stressful life event.

We tried to keep stress to a minimum.

First, we didn’t make much fuss about packing. We left it until last night. Then, we decided to get up early, I got up at 4:45 hrs, pack the car, and then just drive down to our now home for the next six weeks, in one go. 658 km. Eventually, we left at 6:30 hrs., a bit laster than planned, but

It took us slightly longer than the 6:35 hrs. predicted by Google. For the first stretch, we stoppe a few times to adjust Pádraig’s position in the car to make sure he was as comfortable as possible. Then we gave him a brake and tried to give him something to eat and drink. And lastly, from Frankfurt onwards, there was one traffic jam after the other. We made it. In 10 hrs.

The amazing thing was how Pádraig managed the journey. For him, it was a very bumpy ride with the car shaking up his wheelchair and he wheelchair moving him nonstop. But even towards the end we could see how he was trying to keep his head up high.

We are all exhausted. But Pádraig managed to put a big smile on his face, when the manager here told us about ans Irish family who came to check out the centre. They spent an hour in the centre, asked about the nearest pub, and then enjoyed company in that pub… in any case: here are some pictures from today.

Today is an important day.

So, I’ll keep it short.

We’re packing and will get up very early tomorrow morning to drive to Pforzheim.

Another step.

If you think research is complex, try to build an extension to your house.

Anybody completing one should be awarded a PhD. It’s incredible. So complex. I think I tried to make a list of all the different professions involved in Pádraig’s little apartment before. I am sure it was incomplete. Then there is the timing of jobs. The material to be available when they’re needed. Changes made to plans as the job goes on. Unforeseen delays and problems. And all of this with a lot of the people involved doing it for Pádraig. It’s unbelievable.

We are still aiming for the end of September as the completion date. And at the moment it looks like that was achievable.

The roof is up. The zinc (“don’t mention the ‘z’-word” is a running joke in our house these days) is going to be put up tomorrow or Monday, and then the inside plasterwork can start. A lot of the wires have been put in and soon it’ll all be about little details such as the colour and shape of tiles.

View from the top

The Spark has been here!

Steel Girder for Ceiling Hoist

Skylights over P’s room

This morning, I went out for a run along the seafront in Clontarf to clear the head. Checking in with Ryanair. Packing the bag. After that a meeting with builders. And then the wonderful offer of a friend to drive me not just to the airport but to a few places I had to go before that. I had thought I could do this on my own, I know now that had he not been there, it would have turned out a disaster.

Now, I am on the train from Cologne to Hamburg. Cologne because that was the only affordable Ryanair flight to and from Dublin this week. Imagine. It’s a swiss train on German tracks – and still running half an hour late. Whatever happened to the Swiss and their attention to ‘being on time’? Never mind the German obsession with “Pünktlichkeit”! When I get back to Hamburg tonight, after almost 10 hours of traveling, there will only be a couple of days left before we leave for Pforzheim. Hard to imagine.

All of this is hard to imagine. Sometimes I wonder whether what is going on is for real. Or imagined. I guess, I’ll never find out.

Today was another busy day in Dublin for me while Pádraig was enjoying one of the last days he has left in Hamburg for the time being.

The building work here is making good progress. Today, the roof got more or less covered, with just the final metal cover missing. Roof lights have been installed and the electricians have started their magic. They are actually getting closer to our kitchen now which will have to be shut down for the best part of a month some time soon.

I’ve also written the first grant application for An Saol to the Department of Justice and Equality. Although I only heard about this grant being available very recently and did not really that much time to write the application, I gave it a go – and if it was just to put the name of An Saol officially on the map. Submission date: tomorrow.

So much and not more for tonight. Dinner, and then bed time to get up early tomorrow morning to pack up, get ready for the 8 o’clock meeting with the builders, submit the application in town and get to the airport. Days in Dublin are too short.

Although you probably won’t believe me, but growing up in Dortmund in the 60s and 70s was fun. We had no car, we had no telephone, we had no bathroom, we had not washing machine. But I had a bicycle. My mother made Apfelkuchen. My father smoked cigars non-stop, all given to him by grateful patients. He enjoyed them a lot. My mother didn’t – not just because the intense smok interfered with the Apfelkuchen (mit Sahne), but, more importantly, with here “Stores”. “Store” being the German (!) word for a white, long, heavy-ish, semi-transparent curtain (https://de.wikipedia.org/wiki/Store). Not only do ‘Stores’ no longer exist, I think, but even the word itself has been purged from the German language and I had forgotten about it altogether until today. Must have been the Thank-you-for-travellling-with-Deutsche-Bahn-coffee on my way from Hamburg to Cologne on a train that is an unheard-of 32 (not 32 or 33, but 32!) minutes late. I guess that his what privatisation does!

But back to my father’s cigars.

He sent me cuttings from the Ruhr-Nachrichten, our local Dortmund newspaper, to Salamanca in 1980/81 where I spent what probably was the best year of my life (not least because I met Pat there). They came in A5 brown envelopes and brought not just  the news from my home town but also the smell from our house to Salamanca, the smell of cigar smoke.

Many years later, when I went through old papers and when my father had long passed away, the envelopes and the cuttings still carried the smoke with them. And the memories.

There are many triggers to bring back the past. Music. Place. Taste. Smell. Sound. You’re minding your business, go along with your daily life, do what you’re doing. Then something happens and it throws you off.

You start dancing thinking you’re still 18 – and don’t worry about anyone watching. You  sing at the top of your voice that song you always sang when you were happy – and never mind that you’re a few half-tones off. You close your eyes and breathe in deep, and again – and people long gone come back to life. You eat ‘pulpo’ in a Hamburg Tapas Bar and remember that day you bought this (then) insanely expensive specialist Gallego dish in a bar in Madrid, thinking this would be far to strange for any kid to enjoy – and then watch young Pádraig enjoying it with immense gusto, not really being interested in sharing this délicatesse with anyone.

There are constant reminders and memories of the other life being triggered by uncontrollable circumstances. It triggers a strong very physical reaction and feels as if my body was flushed, being drained from head to the toes in one big wave. The mind wonders off. Tears appear. Until rationale takes over again and tells me that memories don’t have to be sad. That they are good to have and to treasure. And that every second of our life we make new memories. Memories we don’t realise today we will treasure so much in the future.

We’ve been telling Pádraig about going to Pforzheim next Sunday. That we will be there for six weeks. And that it’ll be a big change from our routine in Hamburg. There will be different people. A very different atmosphere with not just us, but loads of others being around. The main therapy room there is like a gym with loads of activity. There will be very regular meals and a time table that will be close to that of a real training camp.

We will take with us memories from Hamburg. And there will be new memories.

I tried to empty the garage in Tating today so that we could actually use it – to store things we might want to bring there from Hamburg. There was loads and it took three car loads to get rid of old, dusty, semi-destroyed stuff. Pat nearly lost it when I came back after one of these runs to the dump with a school desk in a perfect condition, and a really neat armchair also in perfect condition. It’s just unbelievable what some people throw away!

On the way back over the autobahn, we saw a really interesting road sign telling tank drivers what the maximum speed for their ‘vehicles’ was – last time I had consciously seen one of those was long before anyone even thought that the wall would come down.

There was also a brilliant view from the bridge across the Kiel Canal .looking at an old-time three-master! Traffic almost came to a stand still.

Pádraig was with a carer and Pat’s sister today, while we were out emptying the garage in Tating. It all worked out really well.

We weren’t out for a long time, but we were out. And we were not afraid to be away. It sounds like nothing, but in comparison to some months ago, or even the time he was still in hospital, this is a huge change.

What hasn’t changed is this insane feeling of being tired. The sitting in front of a computer screen an my eyes closing, of nodding off in between sentences or even words. Of taking half an hour to write a few sentences and hoping they make some kind of sense. Of wanting to write more, to describe the day in more details, to describe how Pádraig is doing in more details. But just falling asleep during the attempt.

Back in Dublin tomorrow to check on the extension.