Pity I wasn’t there.

Someone passed by and, Simsalabim, put the laser torch on Pádraig’s head.

Three times, he pointed the laser at the points on the opposite wall that the therapist had requested him to point it at. Now, it could all be coincidence, it could all be wishful thinking. It could also be that Pádraig heard the request, understood it, identified the objects on the opposite wall, saw the point of the laser, realised that his head movement could influence the position of the spot, managed to move his head, and, finally, pointed the laser right on to that object. Quite a complex operation and quite astonishing if he managed to do all this with purpose.

At the same time, it was good that I was in Dublin.

Because we got the go ahead to turn up at the National Rehabilitation Hospital on Tuesday week.

Time to get the ticket for the Dreamboat!

There is a chance that Pádraig will not get one of the highly sought after beds for patients with minimal conscience, meaning he might get a lower level of therapy, but what exactly will happen when we arrive there will all depend. What is for sure is that he will be admitted.

To be honest, I cannot believe that this is all happening. Next week today, we’ll be getting ready to leave Pforzheim heading for the Dreamboat.

There was a meeting tonight discussing an action plan for An Saol. In addition to the development of the website, easy information exchange, and educational events there were three item high up on the list:

1. An event highlighting the right to a life, An Saol, for persons with a severe brain injuries.
2. Organisation of a voluntary support service.
3. Employment of a senior physio therapist specialised in working with persons with severe acquired brain injuries.

Do you want to get involved? – How can you help? – Email info@ansaol.ie

Let’s try something different. – Simsalabim!

No walking today, but standing on one leg while the other was moved in circles on a board with wheels underneath. First the left. Than the right. Now, take his right hand and, while standing, touch you knee, your hip, your nose, your ears. First with the left hand. Than with the right. – Sounds easy. But it ain’t.

When we start physio I don’t think anyone ever knows how it going to end, what we’ll do, which ideas the therapist will come up with, how Pádraig will be challenged that day. To move his arms. To hold on with his hands. To straighten his legs. To lift his head. Constantly. It’s active. Pádraig knows that this will only work if he tries as hard as the people around him.

What we know when we get up in the morning is that at the end of the day we’ll all be exhausted. Completely.

The thing is there are people like Pádraig who not just like but actually enjoy challenges. And there is no better motivation than seeing everyone around you trying as hard as you are.

We have often said this to people, nurses, doctors, carers, therapists – that we would not be happy with a job “that’ll do”. That the average would not be good enough. That what we were doing was so hard that we would not be happy unless they gave their best too. There were some people who were exceptional. The therapy Pádraig is getting in Pforzheim is.

I’m sitting on a plane to Dublin, on what is going to be the last visit to Dublin on my own. If everything is going to go according to plans, next time we’ll be bringing Pádraig home to Dublin. Even the thought is exciting. And it’s frightening. The past (nearly) two years have been so exceptional that I wonder how it will be when back in Dublin.

An indication of how things are is that we still do not have a confirmed admission date for the NRH because of some information missing from the HSE – although it was the HSE who insisted Pádraig would have to go to a hospital on arrival.

To me it all sounds like as if we might have to try something different. Simsalabim!

We’ve been talking.

And my head is spinning.

There are many parents here with their sons and daughters. There are some sons and daughters here without their parents. Over the past weeks, we’ve been talking to most if not all of them. There are incredible personal tragedies. There are even more incredible stories here of not just survival but of recovery.

Parents who were told that there kids were not going to survive, that they would never be able to walk, that they would be blind, that they would be deaf. There are young people here who were told the same by their doctors. There are stories of patients who were not just given a wrong diagnosis but whose injuries were caused by ‘treatment’ that was meant to help them.

There is one patient being treated whose condition was caused by an infection he got when spinal fluid was drained – a procedure we were told (by a German doctor) was as risk free as taking a blood sample.

The thing is: talking to other people in a similar situation does not change the situation we are in. However, it does change our perspective. Dramatically. There is so much encouragement. So much support. So much proof that the right therapy makes a huge difference. Even after many years people are getting better, becoming more aware, becoming more independent, taking more charge of their lives.

There is a building full of heroes here.

Inclusion Ireland protested over the past couple of days and nights in Dublin and met Taoiseach Enda Kenny today. Protesters are calling on the Government to take action in the following areas:

• Restore funding in disability supports
• Introduce direct payments for persons with disabilities
• Protect Personal Assistant (PA) supports
• Ratify the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

Not sure whether you heard of the death of a young woman, Lauren (Rosy) Johnson, on 7 September. A family member at her funeral said that she went to Beaumont Hospital to seek help. 12 hours later she was dead. Beaumont have questions to answer, he said.

It sounds like a contradiction in terms to say that today was a routine-kind-of day. There is no routine here in this Centre. Things change all the time. That is because both of the owners are deeply involved. This is Pádraig’s third week with one of the owners who is not just working as an excellent therapist, but who is keeping a close eye on everything else that is going on. The energy they are burning here is something else.

Poor Pádraig and myself are completely exhausted in the evening. We have to get up early to be ready for speech therapy at eight. The two hours between nine and eleven, when physio starts, we spent having our breakfast, and me checking on emails and making some phone calls.

Pádraig is up for the best part of 10 hours now, every day. Doesn’t sound that much, but it’s huge, because a lot of this time is spent of really intensive training. The main therapy rooms are filled with people in the mornings. It’s like working in a packed gym with everybody having their personal coaches.

You have to have been here to appreciate how this works. There are more people with brain injuries here than I have seen anywhere else in one place. They all are different, at different stages of recovery, with different abilities. And all working on all sorts of really sophisticated and, sometimes, really basic equipment bought in a DIY market and re-purposed with incredible imagination.

One of the most incredible and amazing pictures is the following:

This is Pádraig ‘walking’ in the Lokomat, a ‘gadget’ that costs around 200,000 euro. Now, while this is quite a sophisticated piece of equipment Made in Switzerland the engineers who put it together never anticipated that someone taller than 2m walking in shoes size 50 would ever use it. If you look very closely at Pádraig’s shoes (at the right edge of the right-most stripe on his runners), you’ll see a purple peg that holds some of the straps holding his feet together. A cloth peg. So, here is a simple cloth peg making a 200k machine work. It couldn’t get much better than this.

The comparison may sound weird, but this is a bit like going to Lourdes on this train from the 1960s with all those wonderful people, wanting to make a difference, wanting to help, wanting to live their lives.

There are miracles everywhere.

Something is going to happen that is going to make Pádraig really really happy.

But, for the time being, Pádraig and I are on our own which is kind of strange after the summer, a time of less travel, of spending a lot of time together. But Pat has to go back to work, the weekly trips have started again. It’s another sign of live continuing.

I started to think about my plans again. I know it sounds a little bit crazy thinking, even more talking about big trips. Thinking about going to Alaska. Alaska.

The time here in Pforzheim has been really great so far. There is plenty of stuff I’d do differently (that’s only to be expected:) but there is also plenty of stuff I’ve learned. And it’s not over yet. We have another two weeks to go.

And they are so so aware of that is what I want to get out of it that they are helping me to get there. To get to a point where I will be able to do a lot of what they have been doing here with Pádraig back in Ireland not on my own, but with one or two helpers.

The other great experience here is getting to know the other patients and their families. Most of them are young people. Many of them had motorcycle or car accidents. They and their families have been living a similar life to ours and talking to them not just creates a sense of community, it also teaches me a lot of how families can pull through what must be one of the most devastating experience anyone can go through.

But at the same time, I want us and Pádraig to be part of life, street live, road trip life, concert life, having a pint life, singing, dancing, and hugging life.

I want us to go to Spain and buy Boots of Spanish Leather. I want us to go to Alaska and experience nature at its best. I want us to go live life to the full. To have fun and see things. To go to festivals and to concerts.

A propos concerts: his sisters bought him his first concert tickets to see one of his favourite groups who about two years ago sent him this message:

Can someone tell the lads that Pádraig will be at their concert in Dublin??!! To have that beer with them, they’re talking about? Tell them that nothing is impossible with the help and support of friends? Tell them how much we appreciate that they reserve space at their concerts for people in wheelchairs? Tell them how much Pádraig will enjoy his first concert and their music!!!???

 

This morning, we had a long, lazy Sunday breakfast and then took out the Doblo to go to go to the Landesgartenschau in Mühlacker, about half an hours’ drive from Pforzheim. The garden show is supposed to give you ideas for developing your own gardens and highlight different aspects in gardens such as colour, smell, texture, and architecture.

Pádraig’s friend insisted to get him a stamp on his hand, in case we were going out again – standard procedure in any club, I suppose. And then he wondered if they were selling beer, not just the local wine. They did. And he shared it with Pádraig. Check out the cool t-shirt he had brought for Pádraig!

With the stamp and the drink there was live Blasmusikspielkapellenmusiktherapie. That’s what you get on a Sunday morning in Mühlacker!

As we were walking through the Landesgartenschau, there were strange things at every corner, much more interesting then the flower bed of which there were few anyways.

People walking around in strange costumes; runners and shoes hanging from a tree (we all know what that means in Dublin); and what the Germans call an Insektenhotel, i.e. specially prepared wood to house all sorts of insects. In your house or your garden. Mmmmhhhh. Makes you wonder.

Pádraig’s friend left late afternoon, saying that he saw great improvements in Pádraig since his last visit. That it must be more difficult for us to see his progress as we are with him every day. How encouraging!

We’ll start the second last week in Pforzheim tomorrow. It’ll be a time of learning so that we’ll be able to continue doing at least some of the exercises Pádraig has been doing here when we get back to Dublin.

One of Pádraig’s really good friends came up from France (!) last night for a visit. We decided to do the tourist thing. After all, it was Saturday, rest day.

Though it didn’t started like that.

I went for a short run (you know, the marathon is getting closer;) and almost arrived late for Pádraig’s shower. The nurse on duty came in and showed us how to use the ‘new’ shower chair they had left in the bathroom for Pádraig yesterday. It went really well and Pádraig had a great shower.

After breakfast, we got the Centre’s Caddy to try it on a drive. Where else could we have gone but deep into the Schwarzwald? And where in the Schwarzwald but to the famous Tree Top Walk in Bad Wildbad? I had never heard of it, maybe because it really is out of this world. What a piece of engineering and sheer brilliance. After a long walk at the level of tree tops, the highlight appears from between the trees: a kind of free-standing tower with a 600+m walk up into the sky.

Tonight, we’re all so tired, we can hardly keep our eyes open.

It was a good day!

Tomorrow, we’re planning to see a garden show close to Pforzheim. (But only after a longer Sunday run;)

I was on a bus trying to catch the 17:45 train to Dublin. I was sweating because the bus from the university was always late. Even the thought of me having to run up to the station from O’Connell street in Limerick made me feel exhausted.

The driver had the radio on and the whole bus was listening to live reports from New York. It sounded all very much like the 1938 Orson Welles’ famous ‘War of the Worlds‘ radio broadcast.

Luckily, I made it to the Dublin train on time. By the time it arrived in Heuston Station, it really seemed as if the end of the world was near.

There are days everybody remembers. You know what you were doing. The 9th of September 2001 is a universal one. Then, we all have our personal ones we’ll never ever forget.

Over the past few days, Pádraig has been doing some more exciting things. Stuff, you’d never had thought were possible or existed.

One of the things you’d never thought would be possible was me holding him from the back and two people on each of his sides moving his legs forward. By the time Pádraig had crossed the room ‘walking’ I was “fix und ferrite”, meaning I was sweating like a pig, my heart beat was at a level only known to sprinters, and my legs were shaking as if I had just finished climbing Croagh Patrick. But I was *so* proud. – It’s amazing what you can do with the right encouragement, support, and guidance.

The idea is the same as the one of the fish and the fishermen. It’s the story of teaching people how to fish rather than giving them fish to eat – if you want them to survive long term.

One thing we’d never thought existed is a whole new approach to Music Therapy. In Hamburg, Pádraig had two really nice music therapists with whom he got on very well. They sang songs with him, played music, connected.

Yesterday and today, Pádraig went into a whole new therapy room here in the Rehab Centre in Pforzheim which brings a whole new meaning to ‘music therapy’.

Have a look.

It’s what I’d call a disco, or what you’d probably call a ‘club’-type setup: lights and dance music, with deep, deep basses that go through your stomach and your whole body. Especially if the bass booster sits on your stomach, under your wheelchair or underneath a bean bag.

Pádraig’s reaction to it was great and surprising: he was absolutely relaxed and obviously completely and utterly enjoyed the ‘noise’!

To enhance the experience, there is a several kilo heavy special blanket we placed on top of Pádraig. He looked even more relaxed.

In a way its simple. What an experience: great music, literally going through your stomach, stimulating senses, provoking reactions, kick-starting action.

Just another example of a really unconventional approach to therapy. But isn’t it amazing?

Von wegen: fix und fertig. This is not the end. This is all just the beginning. Watch him!

 

 

I thought I had gotten over the tears-stuff until I read the notes Cliodhna wrote on her fundraising page for the the marathon she’ll be running in Dublin on 26 October, together with Andrew King, Cian Waters, Ronan Mistéil, Ciara Heneghan, Donal Earls, and, hopefully, myself.

“Cracked”, “shtone mad” and “off your rocker” are only some of the terms I would have associated with marathon runners in the past. If you’d told me three years ago that by the age of 27 I’d swim in every coastal county in Ireland and have a marathon under my belt, I would have laughed in your face but alas these are some of the amazing challenges that have taken place to raise money for Pádraig ever since his accident.

When Cliodhna was here with another friend almost two weeks ago, they got Pádraig to repeat sounds, they got him ‘talk’ in a way. It is really amazing to see how Pádraig reacts to familiar voices. The father of another young man from Dublin with an acquired brain injury was over here and Pádraig reacted with a big smile when he talked to him. This father also offered to come over to Pforzheim with his car to help us move to Dublin. How generous!

I’m also getting loads of reading and, yesterday, a special light to shine accross Pádraig’s to support his efforts to adjust the focus of his eye.

Just back from visiting good old friends who live about half an hour from Pforzheim – on of the things we discovered that one of them is working across the road.

 

Pádraig is continuing his intensive training. The yes/no button business is working ok, though it needs a bit more practice. The walk-across-the-room trick is now a daily routine. Lifting his arms to ‘paint’ the ceiling is still amazing anybody passing by for the first time. Eating works out better every day.

He is completely exhausted when we make it back to our rooms in the late afternoon. We have to wake him up for dinner. We’d prefer not having to do this, but on the other hand it’s good that he is being challenged and that he more than managing.

This afternoon, I looked at our bathroom here and had to take a picture. I had to think of what the electrician working on Pádraig’s extension told me about building regulations!

The place here is filling up with Irish people tonight. There are parents of three young Irishmen with acquired brain injuries here. It’s hard to believe that all of them feel they have to go abroad to get the therapies their sons need. It’s really unacceptable that this should be so.

Imagine: the journey – and this is not a car trip down the road or across the country; the language – Germans like to believe their English is really good but here nuances are important for all, including the therapists, the parents, and the patients; the loneliness – this is a thousand miles from home, literally. The cost – everybody is financing this in different ways.

And this is only part of the picture because we are looking at a relatively short period of intensive therapy here in Pforzheim which is great and provides a big boost. But it does not resolve the problem of long-term care and therapy.

Plans for An Saol are progressing. It’s a registered nonprofit, it’s in the process of getting an office in Ireland’s most prominent nonprofit centre (Carmichael Centre in Dublin), and it’s in the process of putting an action plan together for the coming year. One of the central services we’ll be looking at is the provision of affordable and sustainable therapies. – If you know of people who could help getting this going, please let me know!