Loads of people went out to Dublin Castle today to watch the count, apparently. One women was handing out After Eights. You have to give it to her. No matter what side of that referendum you were on. That was a really good idea. You wonder why it took someone so long to come up with it.

Pat and I went out with a friend to have dinner and a drink by the river. We had a great night out, with someone staying with Pádraig. To talk, listen, get feed-back is a welcome break from the routine.

And before we went out this evening, we had a brilliant afternoon with two other friends and their three children. We even met three really nice Christian evangelists in the street who asked whether they could pray for Pádraig. They said that they had just prayed for a lady with back-aches. They repeated their prayer three and the aches and pains had disappeared completely. I must say that a lot of this is about expectation management. When they asked Pádraig whether he had noticed a change after the prayer, he very clear said ‘No’. An honest answer. But not the one expected!

We were walking back to the apartment just after lunch, the time when many people at the therapy centre were getting ready to go home for the weekend. There is one young person who has the coolest car I have ever seen. It’s black, it’s snazzy, it’s really shiny, it looks like a perfect drive for the no-speed-limit German autobahn, and it has a build-in robot that opens the door of the boot, reaches out to pick up the wheelchair standing beside the car where it was left by the driver, and softly deposits it into the boot, before closing it again. It’s almost unreal. And the best thing: just looking at the car, you wouldn’t have a clue of its sophistication – something the driver pointed out was really important. It was just a ‘normal’ car, an eye-turner only because it looked really really cool.

But it’s not. Unreal.

It has given back to this young person their independence to go out to visit friends, go swimming, or horse-riding or whatever. Despite a spinal injury that confines them to a (also pretty snazzy) wheelchair. It has given this young person independence from their family, carers and helpers. It’s, of course, not just the robot that makes this car so different, it’s also the way it can be driven: with a second ring behind the steering wheel instead of the usual accelerator pedal and a stick beside the steering wheel instead of the pedal-operated brakes. And some other gadgets, I’m sure we didn’t see or paid attention to because we were in such awe!

This is all truly impressive stuff. Demonstrating that there are no limits to what can be done by clever engineers who understand their clients needs.

I came across this really incredible live version of Learning to Fly by Tom Petty (with Stevie Nicks as backing singer!!) and a fantastic interaction with the audience. While Tom Petty once explained that he got the idea to the song from listening to a pilot saying that flying was really not that difficult, but coming down was — in my mind, the song turned into something slightly more transcendental, for lack of a better word.

It’s, at least in my mind, about life and its limits and the determination not to let that interfere with our aspirations and dreams.

I am learning to fly. But I ain’t got wings.

How cool is that!

Take a walk on the wild side. Sure, why not?

This song is from 1972. Incredible 46 years old. And it sounds as fresh as ever. When it came out it was more than controversial. Except in Germany, Germans don’t listen to – and if they do, they mostly don’t understand – the lyrics. Just remember Zappa’s Harry Brown, number one in the German charts for months. Maybe that’s the reason why it’s easy to take that walk, on the wild side, in Germany?

Earlier in the week Pádraig took a walk, with a little help from his friends.

This is stuff he has done before here in Germany. (At a time when one of Ireland’s leading neuro physios wouldn’t even sit him up. When a private company distributing exercise equipment in Ireland was stopped by a physio and a physio manager selling that equipment to us. It would have been too dangerous for Pádraig, they told us.)

But he had never walked with such fluency, with so much ease, and with so little support.

Today, Pádraig did one better than earlier in the week (but today no-one took a video…). He did what he has been doing in the pool for some time now: he lifted up his legs and moved them forward himself. Slowly, a bit awkwardly, with interruptions, with me holding him and the therapist checking his feet and legs, and over just a short distance. But he did it.

I had to think about that “Walk on the wild side”. He was doing things nobody is supposed to do, according to the establishment. It was like shaving your legs, plucking your eyebrows and going: “Doo do doo, doo do doo, doo do doo”.

It’s such great fun and so enjoyable: doing your thing, because that’s what you want to do and that’s what you need to do, and you don’t really care about what you’re supposed to do doo do doo, doo do doc, doo do doo.

What a perfect day!

If you want muscles or nerves to react you have to stimulate them. If all is well that stimulation mostly originates in your brain, or is at least processed there. If all is not that well, then you can use ice sticks, right? Ice sticks. What else would you use?

This is what one of Pádraig’s SLT here asked. What else would you use? Is anyone stimulating those muscles in his face to get them back to work? The muscles you use to turn up your nose at something, the ones you use to smile, use to frown or to press your lips against each other. (You will notice that I pressed the wrong button when I tried to capture what she did today;)

The good thing about ice sticks is that you can prepare them yourself at almost no cost: just fill a syringe with water and put it into the freezer.

The treatment is called PNF or: Propriozeptive Neuromuskuläre Facilitation, and is explained (for those who speak German:) in: die Behandlung von Fazialisparesen: Stimulation der orofazialen Muskulatur durch PNF.

Here is what the therapist does, using stimuli in a specific order: (1) thee strokes using ice across the muscles; (2) “tapping” to dry the skin using gauze (or pulp cloth); (3) “stretch” the muscles; (4) pull/push muscles against resistance.

It’s that easy. And effective. I learned something new today (and will try to record it again tomorrow, hopefully pressing the correct button).

What would you prefer listening to when going for a walk: music or a podcast? — I’ll come back to that in a minute.

For the next three days, Pádraig and I will be on our own here in Pforzheim. It’ll be a lot of work and less time off for both of us, but it’s also an opportunity. Because of the intensity of the support Pádraig requires there are alway people around. There will, of course, still be the daily therapy and routine, but there will also be time for just sitting down and connect, I hope.

It’s our third week in Pforzheim and there are now less than two weeks to go. Next week, we’ll be thinking about packing our bags, planning the trip to the railway station and on to the airport. If all goes according to plan, the flight back home willl be Pádraig’s (and mine) first flight without Pat (and another helper instead).

When Pádraig is doing his daily hour in the Lokomat, I’m trying to make that hour a little less boring by playing something on the phone for him using his headphones. The biggest challenge for me, I had thought, was to find music he would like. To be fair, he has a very varied taste and is generous when listening to music, but I didn’t want to bombard him with stuff I thought would be nice to listen to while ‘walking’ for an hour. – That is until I saw, by accident, that spotify also offers podcasts that look really interesting. So I asked him. And guess what — for the past week Pádraig decided to listed to podcasts rather than music. Real ‘heavy’ stuff like new cultural developments, Brexit, gender issues, history. In my simple mind and, to be honest, not really thinking about it too much, I had assumed music would be the thing, because it’s relaxing, distracting, and, in most cases, just nice to listen to. But he prefers to keep his mind busy during that hour of his ‘walk’.

The president of the University of Limerick today circulated and email:

Dear Colleagues

I am delighted to announce that the winner of the 2018 Award for Excellence in Service to the Community is Reinhard Schäler.

Reinhard, a Lecturer in the CSIS Department, was nominated for his work with the Rosetta Foundation and An Saol.  Reinhard is founder and former CEO of the Rosetta Foundation, a charitable organisation whose mission is to relieve poverty and to develop healthcare and education through equal access to information and knowledge across the languages of the world. It helps not-for-profit organisations by connecting them with a worldwide network of volunteer translators.

Reinhard is also the CEO and co-founder of An Saol , an organisation which raises awareness of the challenges facing survivors and families of severe Acquired Brain Injury.  He is currently leading a pilot project to establish a day-care centre which will offer an intensive neurological rehabilitation programme to survivors.

I know that you will join me in congratulating Reinhard on this outstanding achievement which recognises the depth, breadth and impact of his work in our local and global communities.

Kind regards

Des

Not sure what to think or to say.

One of Pádraig’s really good friends came over to Pforzheim for a visit. We met at the railway station and went for a walk down to Pforzheim’s Opera House (yes: all German cities have an opera house!) and stopped by the Opera Café’s outside terrace to have a bit of cake and a drink. Pádraig then spend some time beside the river together with his friend, while Pat and I went for a walk along the rivers of Pforzheim – there are at least two of them (Enz and Nagold). We must have crossed half a dozen bridges within 20 minutes and then we crossed the bridge with the locks – used by Pforzheim’s loving couples to firm up their friendship.

If you look closely, some of these expressions of friendship show the names, one is in the shape of a heart, and then… there are some where the couples opted for the “sparsam”-option. They went for simple cable ties to knot the tie – although one couple went for the simple and, at the same time, extravagant green option. I think we all have seen those looks on romantic bridges — but cable ties?? Mmmmhhhh….

It’s the last day of the long weekend — which Pádraig enjoyed tremendously. Back to normal tomorrow. Whatever that is.

"Jeder hat das Recht auf Leben und körperliche Unversehrtheit."

(Grundgesetz, Artikel 2)

"Everyone has the right to life and physical integrity."

(Basic Law, Article 2)

It doesn’t happen that often anymore, but today I cried — for quite a while — as we were walking through Pforzheim’s cemetery. Nothing special, that’s what most people do when they are alive and in a cemetery, you’ll think. But this was special.

It was like a walk through my fatherlands’s history. And my present. At a level I had never expected.

It had rained all morning and we only went out when there was a break in the clouds and we were getting desperate for a breath of fresh air. Everything in Pforzheim is either up a hill or down a hill (and then up on the way home). We opted to go up the hill first and entered Pforzheim’s main cemetery. Many seasoned travellers will tell you that if you want to get to know a country, see how its people bury their dead.

First impression: this place is at least as beautiful as Dublin’s Botanic Gardens. Unbelievable. It took a few steps into the place for us to start our journey through history. There were monuments erected by the Butcher’s Association, and a few steps down one lane another by the Bakers’ Association remembering their dead during World War II, and especially those who had died in Pforzheim on 23 February 1945. There was a Jewish plot for those people of Pforzheim whose graves had been destroyed in the late 1930s by the Nazis.

Then we saw this gigantic cross behind the trees overlooking a huge field. This must be where those who lost their lives as soldiers during the world wars must be buried, I thought. And that is exactly what it looked like until we saw this date again: 23 February 1945. I jumped down the wall into the field with a huge number of small grave stones, each showing the names of dozens of people. And then, looking back up towards the huge cross, it said:

Den siebzehntausend Opfern des 23 Februar 1945.
In Memory of the seventeen thousand victims of 23 February 1945.

This is what wikipedia says about the attack:

“One of the most devastating area bombardments of the war was carried out by the Royal Air Force (RAF) on the evening of February 23, 1945. As many as 17,600 people, representing 31.4% of the town’s population, were killed in the air raid. About 83% of the town’s buildings were destroyed, two-thirds of the complete area of Pforzheim and between 80 and 100% of the inner city.”

The attack lasted for just 22 minutes.

I walked around the field with all those gravestones. At the end, there was a white wall with three bronze plaques. And what I read there, was what made me physically almost disintegrate.

The plaques remembered (“In Memoriam and Commitment”) the old, disabled and sick people, and listed their names, who had been killed by the Nazis.

The last sentence on the last plaque read:

Everybody has the right to life and physical integrity. (Basic Law. Article 2)

A statement to show that the Germans have learned from history. (This is also what a German judge told us during a formal hearing at Pádraig’s bedside in a Hamburg hospital – and the reason why doctors are *never* allowed to treat people without their consent or that of their appointed guardians, usually family members.)

There is scientific evidence suggesting that 60% of those diagnosed as being in a permanent vegetative state in Ireland are, in fact, conscious. There is very strong scientific evidence suggesting that once someone is in, even, a minimally conscious state it is almost impossible to predict to which level they will recover. There is overwhelming scientific evidence suggesting that the only proven approach to recovery is intensive physical and mental exercise. Scientific research has produced lists as long as my arm with diseases and illnesses caused by ‘just’ lying in bed and lack of exercise. A lot of them ultimately causing the death of the person in question. Most of them causing untold mental and physical suffering. Untold because most of these incredibly vulnerable people we are talking about are non-verbal and cannot speak up to defend themselves.

What is the difference between actively killing someone who has a very severe disability and abandoning them in a bed in a nursing home (or their own home) without the appropriate support? Cost? Time? Suffering?

We know what needs to be done. The Irish health system knows what needs to be done. It has agreed, in late 2016, to take one first very small step and support the An Saol Foundation’s pilot project. It has taken more than a year to sign a service agreement. More than four months have passed since I signed this service agreement.

And what has followed since is: silence.

None of this is easy or straight forward. Comparisons never hold. But this silence today during our walk, these monuments, the experience of the silence we have experienced, deeply touched me. Very deeply. In many cases it is the deafening silence from those who know that makes atrocities, injustice, crimes and human rights violations possible. Our case is just one of many. But it is ours and, whatever happens, we will take care of it. Never again. In Memoriam and Commitment.

There are three hugely challenging situations for live commentators: the visit of the Pope (when people are gathering and waiting for his appearance); cricket matches (nothing happens for days); and the run up to royal weddings (when they have to pull out all the stops for an essentially mundane affair). Live broadcast of that weeding in Windsor today started in Germany at 11am on (almost) all channels. And there were hours to be covered with live commentary when nothing whatsoever was happening, apart from people piling up in front of Windsor Castle and celebrities walking towards the venue. The most unimportant ‘facts‘ became a headline, like the letter Meghan had written at the tender age of 11 to the then First Lady, Hillary Clinton, to complain about a sexist TV advert. I switched off before they had a chance to discuss what it meant that she is Shakespeare’s fifth cousin 13 times removed, and a close relative of Churchill, his sixth cousin five times removed.

The world has gone mad. Definitely.

After our slow, late, and leisurely breakfast, Pádraig had a go on the MOTOMed (again at 60+ rounds per minute beating all his previous PBs), followed by lunch and then a trip to the shops. We can borrow a wheelchair-enabled car here which gives us a bit of mobility. It was hell. First, Google sent us up the hill on a road that couldn’t have been narrower and bumpier passing by each and every one of Pforzheim’s “Schrebergarten”, plots rented by the good people of Pforzheim to plant their own fruit and vegetables. Then, there was no parking and not even an entrance to be seen for Media Markt. When we made it to the alternative Saturn superstore, it was packed with people who had decided to buy supplies to keep them going for two days of closed shops. We didn’t even all get into the shop and decided to head home, passing by a real German ALDI where we discovered a machine that was dispensing bread the same way machines have been dispensing packets of cigarettes for decades. That way, you can be sure that the bread you’re getting hasn’t been handled by a dozen other customers before you put it into your shopping basked.

I am thinking about how to kick-start the Day Centre for people with very severe acquired brain injuries in Ireland upon our return, with or without the money from the HSE. Some interesting stuff came up, for example: if we had the funding allocated to two families for intensive home care, we could employ three therapists (at German rates) and three carers, and rent basic premises. If we had access to the funding of more families, we could add transport, robotic walking equipment, transport and additional staff (co-ordinators, drivers, kitchen staff, more therapists etc.). Currently, we don’t have access to that funding, but in my mind, there will come a time when we will have to claim it with the support of as many families as possible.

In a very radical way, if needs be.

This morning on the news they asked young people if they knew why they’ll have this coming Monday off. Most didn’t have a clue. Some knew that it was Pfingsten, or Pentecost, but most of those who knew didn’t know what ‘Pfingsten’ was all about. Germany keeps its christian holidays – nobody would dream of introducing ‘bank’ holidays, or moving christian feasts like ascension or corpus christi from Thursdays to Sundays (as Ireland did some years ago). Nobody would dream about going shopping or demanding that stores should be open on Sundays. There are large companies whose policy is not to send emails no weekends – doing so would be considered harassment.

10-12 years ago an auctioneer we were friendly with told us about his Irish estate agency’s problems with the German auctioneering business they had just bought out. These Germans, he said, will never get anywhere with their ultra-conservative, never-changing, antiquated approach to business. For him, the proof was that Ireland was booming, while Germany’s economy was growing in low single-digit figures – completely unexciting.

It only took a year and he had lost his job. And the German banks were bailing out Ireland, charging punishing interests rates.

What all of this tells me is that we all need time off from work, at the same time and with businesses and shops closed – and who cares whether the reason for this at some stage was Christian (and for some people still is). And: business has to be done in a socially responsible, controlled, and regulated way – otherwise it’s reckless and will lead to disaster. Cashing in the quick buck, betting on short-term gains, an I-don’t-care-what-happens-after-I’ve-cashed-in-my-fortune attitude creates havoc.

Thinking and planning from just one election to the next, in four year-cycles (if you’re lucky) doesn’t work. Blaming predecessors for chaos shouldn’t be allowed. Solving individual problems on-the-spot through the intervention of Ministers or, more likely, Primetime, will remove ‘trouble-makers’ from the public airwaves for a while, but will not help to solve the underlying structural problem and will not address the systemic failures of the systems.

Patrick started a slightly different routine during his physio around the middle of the week. And for all of these exercises, he is standing, supported, if needed, by therapists and myself. The amazing aspect of this is that we all feel that while he still requires support, he is doing more and more himself. He is back walking and it just took two people (myself at his back and another person in the front) to help him walk the full length of the room.

We’ll have three days off after today – three days we will, I am sure, readily enjoy; three days that will help us rest and prepare ourselves for another week of a really intensive, really demanding, pushing to the limits, exciting exercise regime.

There was Pádraig today with his two eyes wide open smiling at his SLT today who had used ice-sticks to stimulate his nerves and muscles around his eyes and mouth. Ice sticks. When googles this I found out that there are many celebrities who are using ice therapy for beauty treatment as well – not that Pádraig needed it:)

I talked to a few people about shifting emphasis from care (the very early days) to therapy (2nd phase focus) to living a life (3rd and ongoing). Incredibly, all agreed that there is a point when living a life has to become the central focus of all efforts. It doesn’t mean that care and therapy become obsolete. What it means is that they should not become, or stay, at the centre of it all.

If there hadn’t been a strike on the French railways, we would have been sleeping on the train to Lourdes tonight. Instead, our thoughts are with our friends who are making their way to Lourdes this year, by other means.