I ran into the Neuropsychologist in the Cafeteria today where he was buying a cold drink and I was looking for a euro coin I needed for the washing machine in the basement. I asked him could I swap he euro coin for two fifties. Both the woman at the counter and the neuropsychologist were laughing at me because of my one-euro-coin-for-the-washing-machine. So much so they were looking for the ‘hidden camera’. – I must be loosing my German sense of humour, I thought.

Her accident happened about 10 years ago. Today she can walk (with help and support), she travels with her therapist, she drinks, she smokes, she has a tattoo on her arms, she comes into the therapy centre once a week, and she came over to see Pádraig.

Anyway, it was a conversation starter that led to the neuropsychologist bringing me down the stairs into the basement and into a lab I’d never been to before. It was occupied by a researcher working with high-density EEGs, as well as with other sophisticated gadgets used to detect or stimulate brain activity.

We have a family PIN number. Today, out of the blue, we asked Pádraig for this four digit number. Now, this was not rehearsed, it wasn’t prompted, and it was the first time since the accident that we asked Pádraig for that number. He also remembered the very special date we use as a security combination to unlock our voicemail. He bleeped it for us. – None of this we had rehearsed before. He just remembered these numbers, recalled them, and shared them with us. Incredible.

The project the researcher is working on currently aims to diagnose severely brain-injured persons, to bring down the terrible raingte of mis-diagnosis that allows doctors to ship-off patients into a low maintenance programme where they ‘live’ on nutrition, hydration and medicine – when it is well known that 40% to 60% of those diagnosed as being in a vegetative state are, in fact, conscious.

His HD EEG has 256 contact points (when a ‘normal’ EEG has, in contrast, just 20-30 electrodes). Remember, the NRH does not have an EEG but has to book patients into other hospitals in case an EEG is needed.

Today was the last day of the F.O.T.T. course I partially attended and Pádraig was participating in as a patient. I think Pádraig enjoyed the ‘craic’ of a multi-disciplinary team of four working with him on his position, his swallowing, and his mouth and tongue movements.

As a small ‘thank you’, they gave him a beautiful flower.

Flower Power.

Today, I attended another part of a course running these days in the Therapy Centre’s educational centre. It was about breathing and eating. What they are teaching to the professionals here is what we have learned in a very unstructured non-scientific way over the past five years. And there are parts I wasn’t aware of. Breathing for Pádraig, and others in his situation, is way more complex than it is for us. Eating even more. How is it than that anybody can be employed by a care agency in Ireland to help persons with severe problems around eating and drinking to eat and to drink? Isn’t that negligent?

The Burgau Therapy Centre is getting ready for their huge “Sommerfest” taking place this coming Friday.

In the afternoon, I had an hour-long meeting with a neuropsychologist working in the therapy centre part-time. The rest of his time he works at the University of Munich on Project HOPE concerned with outcome prediction in hypoxia. I had never spent that much time with a neuropsychologist and while I had been ‘kinda’ aware ot their work and its importance, this hour nearly blew my mind. This is about bringing the brain functions and training into the rehabilitation process that are not covered by goals in physio, OT or speech and language therapies. It’s about ‘brain training’ which is at least as important as the physical training, but is often completely ignored.

In the early evening, Pádraig and I went shopping. Stuff for us, and stuff for Pat who will be coming back to Burgau late this evening with a good old friend of ours. I’m sure, Pádraig can’t wait to see some other familiar faces than mine. I can’t wait for them to arrive here either. But, over the past week or so, I spent tons of time with Pádraig, time often occupied by things that need to be done. Time to listen to music, the news, and ‘Into the Wild’. Time to talk without anybody interrupting. It was tiring on one hand to look after Pádraig’s personal care, helping him to eat and drink, and trying to do some of my own stuff too. But these were some of the nicest days we’ve had with each other. In this ‘in the middle of nowhere’ town Burgau and its truly outstanding therapy centre.

A nurse had to tell me. I hadn’t even noticed. The good news.

If you look closely, you’ll see that the ‘green card’ is green on just one side, and red on the other. It hangs right beside his bed. They had shown the red side until yesterday. Until the hospital had received the results of several tests they had carried out on Pádraig to make sure he didn’t have any infections (including any of these not so peasant hospital bugs).

The good news is: he doesn’t have any. Hence the green card.

Like everywhere else, like in any other place, it takes a little time to settle and to get to know the neighbours and the shops. We are slowly getting the hang of it. Finding our way around the therapy centre/hospital. Organising showers, food, some kind of daily routine.

Pádraig took part today again in the course for therapists in F.O.T.T., and there will be a third day. We walked through the therapy centre to the training unit, passing by other wards, across a beautiful inside bridge and into the room where the training is taking place.

All of a sudden, I had a flashback from the time we were in the Schön-Klinik when Pádraig was not allowed to go for a walk in the hospital grounds or take part in any communal activities because he did have hospital bugs and because the senior doctor didn’t want him to leave the ward because he didn’t want any “dead bodies in the hospital grounds”. It was four years ago, around this time of the year when Pádraig would have loved so much to smell different smells, here different voices, hear dogs barking and kids screaming.

How things have changed.

Pádraig was on the phone today. Whatever whoever said. It must have been something really nice. Or funny. Maybe both?

I had decided to go early to the rehab centre. And I did. But still arrived too late for a very busy morning. There was just about time to get Pádraig ready (without breakfast) and off we went to get a control CT, followed by an eye test, followed by a session with therapists from all over Germany and Switzerland attending specialised training here.

Breakfast became a starter followed by lunch as the main course. Followed by a session in a standing frame. Followed by conversation with a doctor who confirmed that all the tests they had carried out so far were all clear.

In the afternoon we went out to listen to “Into the Wild”. I found talking book website and decided to download it, guessing that the professional reader would do a much better job than I ever could. (And remembering how much Pádraig dislikes me trying to speak English:)

“make a radical change in your lifestyle and begin to boldly do things which you may previously never have thought of doing, or been too hesitant to attempt. So many people live within unhappy circumstances and yet will not take the initiative to change their situation because they are conditioned to a life of security, conformity, and conservation, all of which may appear to give one peace of mind, but in reality nothing is more damaging to the adventurous spirit within a man than a secure future. The very basic core of a man’s living spirit is his passion for adventure. The joy of life comes from our encounters with new experiences, and hence there is no greater joy than to have an endlessly changing horizon, for each day to have a new and different sun. If you want to get more out of life, you must lose your inclination for monotonous security and adopt a helter-skelter style of life that will at first appear to you to be crazy. But once you become accustomed to such a life you will see its full meaning and its incredible beauty.”
― Jon Krakauer, Into the Wild

There was a huge buzz around this house when I passed it this morning on my way to the Therapy Centre. People were putting out the flags, all were dressed in the official Croatian gear, they were getting drinks and food and a big screen set up. – When I walked back to the apartment this evening, it was really quiet.

Same stuff on the TV. The French burning fireworks. The Croatians with tears in their eyes. I mean – they should have won, the Croatians. The first two goals by the French were just bad refereeing and bad luck. The Croatians were the ones with the enthusiasm, the real determination to make it to the end, the believe that they could make the impossible possible. They came second. In the world!

What’s wrong with that? Anybody. Tell me! It’s the Croatians who should have the fireworks burning and who should be celebrating through the night. Instead, they are sad, because they just came second. In the world! – Unreal.

And. Putin should have shared that umbrella. No. Being a gentleman and the host, he should have passed it on personally to the Croatian Prime Minister whose hair-do got really close to a complete melt down. And you can say about Putin what you want: he has more to worry about than his hair (or what little of it is left).

When I participated in the F.O.T.T. training yesterday, one of the instructor recommended to contact the ‘grande dame’ and original developer of this therapy, Kay Coombe, to tell her about our project. So I sent her an email which she almost immediately answered. An hour later, we had the most inspiring phone conversation making plans about her and her organisation’s involvement in the An Saol Project.

Pádraig had a quiet day today. We went out for a walk and then watched the match while having his dinner. We will need to spend more time together exploring how he perceives his stay in the Therapy Centre. It’s a great place and he is really well looked after by great staff. But it’s still a hospital-type environment with all that comes with it. There are some really good, excellent people here with brilliant ideas we are exploring and which are really promising.

Bring on week 2!

And remember: sometimes, being no. 2 ain’t that bad.

Today, Pádraig’s “Power of Positivity” made it onto the title page of YOU Magazine, together with “mean girls” and “Netflix ruining our sex life”. A whole new different context to talk about the power of neuro rehabilitation. But – why not?

Back in Burgau —

Pádraig had an hour of therapy today – something that is not a given on a Saturday, even in a first class rehab centre like Burgau. Most of it was about positioning Pádraig in bed so that he is both ‘stable’ and feels safe but can, at the same time, move if he so likes. There is so much to learn from nearly every person we meet.

I was also invited to join some sessions of a multi-day course in F.O.T.T. (Facial-Oral Tract Therapy) the educational centre attached to the therapy centre is running these days. It was a true eye-opener in very many ways. Some of the trainers worked with the lady who developed F.O.T.T.,, Kay Coombes, and were an example not just of knowledge and experience but also brilliant in sharing it with and passing it on to the participants in the best, really the only way of doing this: through experiencing it themselves (as far as that is possible).

What became clear is that it has to be a pre-requisite for anybody ‘feeding’ someone with a severe acquired brain injury and especially someone who is non-verbal to have F.O.T.T. training. Anything else can be dangerous and damaging.

One function of the An Saol Project will be to organise that kind of training for all who need it. – The course will continue over that next few days and I’m looking forward to participate in more sessions.

So many things in life are touch’n go. Will it work. Won’t it.

Someone had the idea to bring a body deodorant for Pádraig. To be honest, I didn’t even know this stuff existed. But, there you are. I was about to say that Pádraig doesn’t take deodorant, never mind body deodorant when I realised that this was not about deodorant at all.

This was about touch’n go. It was about will it work or won’t it. It was about Pádraig taking the bottle into his hand. His hand feeling it. Guessing what it might be. The taking the top off. Feeling the top. It was about moving the bottle up to his body and pressing that button that released a spray. Ok, it was “fruchtig und süß”. Probably. One that Pádraig would not have touched with a goal pole. But that didn’t matter either. It was about doing something with his hands. About moving his arms. About realising that his body was able to do useful stuff. Never mind the smell.

I have been doing a few exercises myself – or: they were done on me. One was about positioning and the other was taking something into my hand with closed eyes and experiences that feeling of my hand trying to figure out what was going on. I am telling you there is nothing like experiencing even a tiny bit of what is Pádraig’s every day reality myself to just get a faint idea of what he is dealing with.

I thought I had come back to the apartment late last night. It was an hour later tonight. Pretty intense days.

Tomorrow and the following days, I will join a course on “Facio Orale Therapie” as there was  seat available and the organisers invited me to participate. It’ll be an interesting few days. Never a dull moment.

They say the days are getting shorter again. Not here in Burgau. I’m just back at the apartment after 14 hours at the Therapy Centre, helping Pádraig with his food, attending his therapies, learning more about LIN (positioning in bed), going for a walk with Pádraig, and many other things I don’t even remember anymore.

Pádraig had a session in the centre’s robotic walking machine, Geo. The idea of the Geo is similar to that of the Lokomat, though there are a few difference. The main difference to me seems to be that the Geo is less controlled – it does not fixate the hips as the Lokomat does, and it does not control the legs as much. I guess there are advantages and disadvantages with each of the two machines. Have a look at how Pádraig was doing.

My plans for our stay here are not working out (yet) the way I thought. I am way behind with work I brought with me. And there isn’t a hope that I might even just touch one of the four really interesting books I had planned to read while here.

I kept one of the best things that happened today for last.

I received an email with a transaction note showing that the HSE had transferred the first instalment of their grant to the An Saol Foundation.

The 12 of July will never be the same. Because today we have proof that at least some people in the ‘system’ or the ‘establishment’ have recognised that persons with a severe acquired brain injury should not be left behind. The An Saol Project is a very small first step to change the hearts and minds of people about sABI.

Dreamboaters. Ahoi!

We had, reluctantly, decided to back the English team tonight. Probably because we had heard a Frenchman saying that they would like to play England in the final and beat them.

with both eyes open this afternoon when we went for a walk

I stayed with Pádraig tonight to watch the match to full time and then went back to the apartment. Only to see England loose.

Pádraig had another busy day today with a few medical exams in the morning and then a few hours of therapy. One really interesting thing they have been trying here is to wrap his torso tight into bath towels and then support it with a wide special belt. That supports his whole upper body which, in turn, makes it easier for him to hold his head straight.

Wednesday is also the day of the “Visite”, the big “rounds”. Pádraig could be the only patient in the reha hospital not taking any medication. He could, in fact, be the only patient in a hospital in the whole of the country not taking any medication. Which makes it, I believe, even the more admirable that there are doctors here treating him in a very positive, proactive, and supportive way.

Pádraig also saw a senior doctor here today who has been here for decades, with a vast amount of experience. Watching him and listening to him as he connected with Pádraig trying to understand the reason behind some of his restrictions, for example in terms of opening both of his eyes, were a lesson in patient centred medical care. And so was the big round and the approach of the consultant. All pretty exemplary.

It is still strange to leave Pádraig behind in his room, although it’s really only to sleep. It is, though, also good to see that it is possible if necessary.

I brought some books with me to read and some work to catch up on. I’ve not been busier in a long time. Looks like the books, the work, and even ‘keeping in touch’ stuff will have to be if not postponed but then delayed….

Second day in Burgau and Pádraig had about six hours with therapists today. Ergo, physio, speech, a walking machine (different from the Lokomat), a neuropsychologist, and a visit by the consultant. There was hardly any time for eating, drinking, or taking. a rest. It’s also really busy for myself. Not much time, but great learning and great experiences. The enthusiasm and the experience the people working here is really something very special.

Check out Pádraig sitting in his chair. Almost straight. And no sign of a headband. He is getting there!

There were so many things happening today that I am still catching up with all of it in my head. All the different therapists were there to get to know Pádraig and I think he impressed every one of them. The speech therapist had organised a session to check out how well Pádraig could use a computer for communication.

And i must say, I have never ever seen him so alert, tuned in, and so well able to use the computer to select options, to pick up words, or to spell. I was over the moon and embarrassed and annoyed all at the same time.

It’s almost as if it was our expectations that limit Pádraig’s opportunities. He is able to do so much more than what we allow him or offer him in terms of help and support.

The limitations aren’t his. They’re ours!