Sky over Iona on Fire tonight

Sedentary behaviour that sees us spending hours of our day sat in front of a computer or television is damaging our health, writes  Miranda Prynne in an article in The Telegraph, reporting on research by a leading sport medicine consultant.

Dr Mike Loosemore says people should be encouraged to do more low level exercise and make minor lifestyle changes such as standing up more often.

They must have heard about this in Pforzheim.

If standing is good for healthy people, it must even be better for persons with severe ai. Everybody with some common sense would agree, right?

So, what did the magic of Pforzheim do for Pádraig after a week of training there?

What was the magic of Pforzheim?

Well, there is no magic. Just this:

• He stood up for an hour. On his own feet. Each day.
• Therapists lifted his arms up above his head onto a construction involving an ironing board. Which, in turn, encouraged Pádraig to lift up his head. As much as he could.
• He ‘walked’ in the Lokomat, suspended in a kind-of-a-parashute-suit, for about half an hour. Each day.
• He received cooked and pureed food through his PEG. No more engineered PEG-food.
• He had an hour of speech therapy. Each day.

Did this make a difference to his health and recovery?

After just five days:

• He had significantly more head control.
• I opened not just his left eye, but increasingly also his right eye – not all the time, but notably more often
• His circulation, digestion, and fitness improved.

What is important is that NONE of this is magic.

What it is is perseverance, Dickköpfigkeit. To a point of annoyance.

Today, the first Dublin visitors arrived to Pforzheim, two good young friends of Pádraig’s. Unfortunately, I’m not there to meet them, but I’m sure they’ll have a great time visiting Pádraig. And: I’m sure Pádraig will be absolutely delighted to see that his friends are sticking with him, they stay by his side, they keep him up-to-date on what is happening in their world.

“Straight” Hospi-tales can be a bit taste-less, grey, limiting.

Here is what’s happening to the extension work, which, it seems, has to get worse before it’ll get better. There’s dust everywhere and it seems that the kitchen ceiling had to come down…;)

Kitchen: no ceiling no more

Storing: no dinner no more

Zinc’s going up the roof

Which bedroom floor?

Which tile(s) for Bathroom?

When you think things are kinda quiet, stuff happens.

To an extend that it’s hard to keep up with them.

The ‘Black’ Forest

Sitting on the train to Dusseldorf, the German departure airport for low-cost flights to Dublin this week (why do those airports have to be always that far away?) the phone rang with a +1 prefix. As the train was passing some of the most beautiful German countryside along the Rhine-Valley, a very friendly lady from the Attorney General’s Civil Rights Office told me that a former District Attorney in the Criminal Bureau is reviewing the Brewster Police material in an investigation lead by the Public Integrity Bureau.

Have I lost you? – Doesn’t surprise me.

We’ll be staying at the back of this apartment building for the next 5-6 weeks.

Imagine hearing all this on a mobile phone line that’s coming in and going out on a fast moving train along the river Rhine. This was a scene straight out of a movie. With the best intentions in the world communication was challenging. Eventually, the line dropped completely.So I will be calling this lady back tomorrow to fill in the gaps left by bad mobile phone coverage.

Earlier in the day, someone in TG4 rung to say that she’d be interested to do a programme on Pádraig returning home. Wouldn’t that be nice?

Then an email arrived outlining the procedures for his return to Dublin, with dates! Can you believe it?

The http://www.ansaol.ie website and email are up and running. No ‘proper’ content yet, but it’s there. We are planning the review of an action plan for the short- and medium-term at some time in September.

Schwarzwälderkirschtorte

And, last but not least, Pádraig is already showing some definite improvements.

His head control has very notably improved. Today, for the first time since the accident, he was able to sit almost straight in the wheelchair, with his head up. He can’t yet do this for a long time, but he can do it now, while before he was not able to do this at all. It was so good to see him managing.

After an hour of speech therapy at 8am, physio/OT from 11 to 14, and more than 30 minutes in the Lokomat, he finished his exercise regime at around 3pm to have some lunch.

But today’s highlight was, without a doubt, the “Kaffeetrinken” in the afternoon: he had a go at this Black Forest Gateau. With immense pleasure! While looking from up there on a balcony down towards the Black Forest! Magic. His first piece of gateau. It had to be Schwarzwälderkirschtorte!

The only thing missing in the picture was the stream with the Dreamboat sailing down towards the sea. It was there in our minds. As was Sara who blazed the way for Pádraig, not just once. A Dreamboater who’ll always be with us, never forgotten.

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.