The duck came back today. Amazing how she had changed in just over a week! And amazing how Pádraig connected with the duck. Again.
This is just a very short, but very nice video featuring the duck and Pádraig! Watch it.
Much more serious stuff went on as well, for example the exercises with the cubes (are they cubes or what would you call them?): stacking and un-stacking them. It’s really interesting to see how something that has some purpose generates interest and justifies an effort. Have a look:
On a different note: we sold our first tickets for both the film, “Would you rather be dead”, and the launch of the An Saol Project with our national and international experts. Please tell all your family and friends to book their tickets soon to avoid disappointment – the number of ticket is limited and we want you all to be there!!! Tweet, email, Facebook, talk, ring, visit – and tell everybody you know about the exciting stuff that’ll happen on 18 June in Dublin. Tell them that they will have to be there, no matter what!
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.
The An Saol Project will work with a small number of survivors of sABI and their families, initially over a period of 3 years, to demonstrate how intensive mental and physical activity, as demonstrated by recent research, can significantly improve social integration and quality of life, as well as an improvement in function. The project will be guided by a panel of international experts who will monitor and document progress. International collaborators will ensure that the project will be informed by current best international practice in neurological rehabilitation.
We have invited politicians so that they can hear first hand about the project and express their support. The current list of speakers and participating organisations include:
Professor Andreas Bender, University of Munich and Therapiezentrum Burgau
Lebenszentrum Königsborn, Germany
Headway Ireland
Families of survivors of sABI
This is also a ticketed event and a limited number of tickets are available here with a donation requested in support of the An Saol Project. Pass on the link, http://bit.ly/AnSaolProject, to your family and friends!
One of my favourite Mayday videos is actually a commercial featuring the German coast guard.
When I was Pádraig’s age, Mayday, was the day I went to the Westfalenpark, Dortmund’s nudge to the workers in the steel factories and coal mines, a big, beautiful, out-of-this-world park. In the afternoon, when the demonstrations and ‘Kundgebungen’ were finished, the unions and cultural groups set up stands with food and music. It always was the first day to spend outdoors – no matter the weather.
Today, we borrowed the car of the Centre and went to Maulbronn, the best-preserved medieval Cistercian monastery complex in Europe and a UNESCO world-heritage site. Though Cistercian historically, it’s now mostly a museum site and used as a protestant secondary school (Gymnasium) and seminary.
It was a really nice afternoon out and about with Pádraig’s friend who had come over from France for the weekend. We walked around the site, discovered that the Cistercians has not anticipated visitors in wheelchairs (neither had UNESCO:), and sat down for a few beers, Weißwurst, Flammkuchen, Maultaschen and all sorts of other ‘strange’ food. A few things caught our attention, like the ashtrays on the tables (don’t think you’d see that in Ireland); a plaque saying that this ancient part of the complex was built in the 19th century (which is when the legislation was enacted in Ireland that regulates decision-making for persons with an injury like Pádraig’s – putting it all into perspective); and the lovely white and brown beer mats for ‘white’ and ‘brown’ beers: only in Germany:)
It was a really great Mayday – no demonstrations, no music, but great ‘ethnic’ food!
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.
“Zen emphasizes rigorous meditation-practice, insight into Buddha-nature, and the personal expression of this insight in daily life, especially for the benefit of others.” says Wikipedia. Makes a lot of sense to me. No reason to get angry. No reason to worry. No reason to be stressed out. Much better to take things as they are and to ‘be good’ rather than to fight. People are people.
Talking about people.
Pat met some on the train today on her way from Frankfurt Airport to Pforzheim and took a picture of them, complete with table cloth, salt and pepper cellar, and a large selection of home-made food.
They were Zen. Oblivious of time passed, coffee trolleys and WhatsUp. You live your life. Whatever.
Last night some of Pádraig’s friends had invited us to a big night out in the UCD Smurfit Business School to present us with a cheque for Pádraig. It was amazing: one of Pádraig’s old friends from school, but also new friends from the US, Vietnam and China. Wonderful people, dreamboaters!
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!
Ok, it wasn’t a huge snowman. But size didn’t matter in this case, as in many others. What is important is that you do whatever you have to do. This morning, it was building a snowman.
We sat outside for a little bit, before going for the early morning therapy sessions.
It was magic. Really incredible. More snow than we had seen in some years, at the end of April. Magic.
This afternoon, a friend came to visit to plan the Hollywood to Napa cycle in the autumn. One aspect where we could do with some help is the ‘Hollywood Connection’. We are working on the wineries in Napa, but are having a bit of trouble getting the Hollywood celebrities (or at least one) to support our ‘cycle for life’. So, get your connections going and help us to make it big when we set off in Hollywood to cycle to Napa in the autumn!
Our friend in Madrid posted a link to yesterday’s blog showing Plácido Domingo singing the song “The Impossible Dream” form “The Man of La Mancha”. I’m sure you know the song but I wonder whether you ever listened closely to the lyrics. I knew the song but never really did listen much to the lyrics. This evening I did. And then I looked up the original with Peter O’Toole, Sophia Loren, and James Coco. You could say it’s a bit “schmalzig”, a bit of a tear jerker — but lines like these are brilliant, aren’t they?
To fight for the right Without question or pause To be willing to march into Hell For a heavenly cause
This sounds more like an anthem then a song to me, one we could sing together on the Dreamboat, together with Don Quijote, Sancho Panza, and Dulcinea.
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:)
Hospi-Tales 