Again, it’s much later than I wanted it to be. It’s not really a good time to write. But the days are so busy that I feel very much like as if I was running out of time. It’s Vatertag (father’s day) today which is the day when males, fathers or not, take out a ‘Bollerwagen’ and several crates of beer and head for the parks or woods to have a good time! What could be better than spending a long afternoon in male companionship and beer somewhere in the middle of nature? – At least that’s what I thought when I was around twenty.

No ‘Bollerwagen’ nor beer for me today – but a wonderful afternoon out in the most amazing home of the couple running the therapy centre here for ‘Kaffeetrinken’ with Pádraig who had a great time eating ice-cream in the sun. I don’t think we had spent as much time out doors as today. It was a brilliant day and it felt like a short holiday. A completely different world, just 3km up the road.

Pádraig’s ankle is still swollen but it’s looking better. We toned down the therapy today a bit to give the ankle a chance to recover.

Our new friend I so far only met over ‘hangout’ has booked his flights from Los Angeles to Germany and Ireland. He’ll be filming and interviewing here in Pforzheim and hopefully in Burgau, and then in Dublin, putting together material that will promote the An Saol Project. I still don’t believe that this will be happening. What a difference visual material will make to our efforts!

Another good bit of news is that both Headway and ABI Ireland will participate and contribute to our events on 18 June. Check out the ticket information here and pass it on to all you know. Get your tickets as soon as possible – there is only a limited number of them available!

It’s such an old, 20th century concept. Which makes me feel even older than I really am. Imagine – I remember the day we got our very first telephone and a line we shared with a neighbour. It was either us or them – never at the same time. Today, although theoretically I still have a telephone, it is not connected to any wire and I mostly use is for apps, browsing the web, and to take pictures – not to make phone calls.

Over the last couple of days, I ‘hang out’ (the Google word for Skype), on my “phone”, with the cousin of a very close friend of mine. This cousin is a film and film music maker. Myself trying to stay awake in the evening, him ‘hanging out’ in sunny California. The result of all this is that he will be coming to Pforzheim on Monday or Tuesday to shoot some footage of the centre here and of Pádraig. With a bit of luck, we’ll also be able to interview some of our German supporters of the An Saol project. And a week later, we’ll be doing some filming in Dublin trying to interview others affected by sABI. The idea is to create a video to promote the An Saol Project and our fundraising efforts on the web. – My head is spinning.

Seems like Pádraig twisted his ankle in the bootcamp. It’s swollen and sore. I tried ice today and an anti-inflammatory but this hasn’t shown any relief yet. Hopefully, after a good night’s rest it’ll all be better in the morning.

18 June 2016 will be An Saol – Day. We’ve organised the Irish premiere of the German award-winning documentary “What you rather be dead?” in Dublin’s Lighthouse Cinema in the morning and launch “The An Saol Project” in the afternoon in the Distillery Building (Bar Council) in the afternoon. Read on…

At 10:30, the Lighthouse Cinema in Dublin will be the venue for the Irish premiere of the German award-winning movie “Would you rather be dead?“, organised by An Saol, following the life of six severely disabled people who have lived for many years in a care home in Hamburg. They give surprising answers to sometimes unanswerable questions. An endearing, humorous film debut that does not sugar coat, but lets the true beauty of life shine through. The screening will be followed by a discussion.

Get your movie ticket today online here.  Pass on the link, http://bit.ly/AnSaolFilm, to your family and friends. We want to fill this cinema!!!

After lunch, at 14:30, we will launch the An Saol Project in the Distillery Building (Bar Council), Dublin, connecting the practice of neurological rehabilitation with recent research. We will be joined by international experts on neurological rehabilitation and representatives of national and international institutions and organisations working with survivors of severe acquired brain injury (sABI), as well a by survivors of sABI and their families. We will invite Irish politicians to express their support for the project.

Too tired to write… Padraig has a visitor, a good ole friend who came over from France for the weekend. More about this and some exciting other news tomorrow…

This afternoon two really good friends came to visit us, and they brought along their 6 week old son. We hadn’t seen a baby for a long long time and especially not such a gorgeous young boy. Neither had Pádraig.

The two of them got on really well together. Pádraig was absolutely delighted to meet his youngest new friend and couldn’t believe how small, lovely, and cute the little boy was (neither could I:). Look at his face! No sure what the little boy was thinking, but they seemed to like each other:)

Back in Germany, it’s tempting to compare how neuro rehab works in Germany and in Ireland. Is it tempting to say all is great in Germany, all is bad in Ireland? Well…

There are aspects that are definitely more up-to-date in Germany. For example, Germany has signed the UN Declaration of the Rights of Persons with Disability. There are no lunacy acts from the 19th century still in place. I haven’t found a therapy centre like the one in Pforzheim in Ireland. – At the same time, I haven’t found a therapy centre like the one in Pforzheim in other parts of Germany….

And thinking about Ireland… there are loads of aspects that could be improved, to put it mildly, but there are also professionals in Ireland who have contributed very, very significantly to Pádraig’s recovery. Take the therapist who got Pádraig to use the switch. Take the professionals who prepared the meals for Pádraig really consolidating his oral food intake. Or the professionals working now on his communications using technology, or even music. These are just examples of help that enabled Pádraig to make huge progress. And they happened in Ireland.

At the end of the day there are ‘systems’ – for which we are responsible collectively. And there are people who we will not change. Some are enthusiastic, full of energy, extremely professional, completely trustworthy and transparent – others are ‘just’ doing their jobs. People are people and there are brilliant people and average people in any country. What is important is that the right people are put into the right position, and removed from positions that do not suit them.

So, although it might be tempting, painting the world in black and white doesn’t work. It’s more complicated than that.

Here in Pforzheim, Pádraig had an hour of speech and language therapy, followed by cognitive therapy, followed by three hours of physio, followed by an hour in the robotic walking machine. — At home, there was a meeting with the family, the HSE and the provider of Pádraig’s home care package. Apparently, the famous standing bed has not arrived yet, and there were some discussions about what carers (PAs) can and cannot do, and what is and what is not part of the service agreement. There seems to be a believe that instead of using common sense, each and every detail has to be written down.

There are a few controversial details – one being that carers can call an ambulance or a doctor when they feel this warranted, and without our consent. This is in line with the believe by doctors that it is them who (should) decide how persons should be treated who cannot make that decision themselves. It is in line with the unbelievable case of Ashya King and her parents for whom British Police issued an international arrest warrant after the NHS refused to treat her cancer with Proton treatment requested by her parents, and after the parents had brought her to Spain to receive this treatment.

In Ireland, the same situation could happen — backed by legislation from the 19th century, including the Marriage of Lunatics Act 1811 and the Lunacy Regulation (Ireland) Act 1871. This by itself is nothing short of lunacy, in my opinion.

Now – one of the barriers to allow Ireland to ratify the UN Convention of the Rights of Persons with Disabilities (CRPD) are those two pieces of lunacy legislation. This is where new legislation around consent and capacity, The Assisted Decision Making (Capacity) Act 2015 (http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/pdf) comes in, which was approved by the Dail last year, but which has not yet been signed into law. A sure sign of lunacy itself if you ask me.

There is plenty of information on this act by the Citizens information Board, the Department of Justice and Equality, and Inclusion Ireland — showing that it includes the matter of decision making in relation to medical treatment, getting rid of the assumption that docs know best and will always act in the best interest of their patients — we know better!

In the meantime, the HSE is trying to do their best supporting Pádraig and ourselves — within the boundaries of lunacy legislation that is almost 200 years old!