What a difference a cup makes!

It’s the Karen Coombes Cup, designed by the ‘mother’ of the F.O.T.T. It couldn’t be simpler and more effective. The cup itself is transparent and has measuring units so you know exactly how much liquid it holds. The top fits neatly into the cup and has a wide rim which makes it easy for the lips to close around it. A narrow ‘cut’ allows small-ish, manageable portions of water to get out, and a hole on the opposite side makes sure that as water comes out air flows into the cup, avoiding a vacuum that would hold the water back.

It makes drinking water much much easier for Pádraig, and it takes him less time to drink, too.

Its a design that proves that small details can have a big impact.

It’s an electric wheelchair. But it doesn’t just drive you wherever you want to go.

It also puts you into a standing position.

And then it drives you around standing up.

Wherever you want.

Check it out.

 

It was one of these moments when I felt a knot in my stomach thinking what a difference it would make to Pádraig not just in very basic physical terms but mentally. Meeting people on his feet. It was truly unbelievable seeing him moving up and down the corridor on his feet. If there was one piece of equipment that would really change his life right now. This would be it.

We’ll have to figure out how to get one of these wheels for him…

In other news today: it started off with a second session with the eye therapist. Then there was a session with someone trying out a specially designed cup for drinking (really simple but ingenious), and there was another session with a neuropsychologist.

My head is still spinning.

What do we need to do to make these kind of services available to those who need them and who are prepared to take maximum advantage of them?

What do we need to do to convince people and society that someone who suffered a catastrophic accident deserves all the support they can get?

It looked like one of those big three-wheeled motorbikes at first.

When I got closer, it was indeed one of those big three-wheeled motorbikes. But – it was  carrying a wheel chair. You might have to zoom in to the pictures to see the wheelchair, its, so neat. You might remember that cool, snazzy black merc one of the young spinal injury clients in Pforzheim had (which automatically collected her wheelchair from beside the drivers seat and stored it safely in the boot). But this bike, and more than the bike, the two people on it, impressed me even more. Wow.

I left Burgau on Saturday late afternoon to get to Stuttgart airport, flew back to Dublin, grabbed a few backs we hadn’t been able to take with us on the plane, put them into the car and got the ferry in Dublin Port at 2am. Drove to Folkestone to get onto the train to ‘cross’ the Channel, drove through France, and arrived safely an hour or two after midnight. – And the only real traffic jam happened about 100 km before my destination at midnight. 12km of stop and go. What do all them Germans do on a Sunday night on the motorway?

Anyhow, I made it. We now have Pádraig’s car here, so we’ll be able to move around easier.

I forgot to take a picture of the original fork, so you’ll just have to trust me that is was a perfectly straight, normal fork before Uri Geller got his hands on it – if you’re my age you’ll know who I’m talking about.

To be completely honest, it wasn’t Uri, it was an OT who produced this fork. And she didn’t do it just to show that she could, she did it as a demonstration of how everyday utensils can easily be adapted to suit different needs. And it doesn’t need to cost the earth.

On Monday, Pádraig will be trying out a slightly more sophisticated piece of equipment, and I can’t wait to see whether it will work for him. Each time I went to those fairs where they show off those electric wheelchairs that allow you to stand up and move while you are standing, there was a question about his height. Like the Lokomat or the Geo, they are not made for people who are taller than 2m. In the meantime, we’ve found out that both the Lokomat and the Geo do work. Hoping that on Monday we’ll discover the same for one of these wheelchairs or  wheel-stands.

Wouldn’t it be amazing if it did?

“Blasmusik” is the right answer to the question “which kind of music would you associate with Bavaria?”.

Every year, the Therapy Centre in Burgau invites their staff and present and former clients to its “Sommerfest”. There is plenty of food and drink, together with music and craic. There are people coming from near and far who spent some time here in Burgau following an illness or accident. It’s a brilliant way to get everybody together for a day, to stay in touch with old friends and to make new ones. Organising this must be an enormous effort, but it’s certainly worthwhile.

Pádraig skipped some of his usual hospital-type meals and had a feast of Bratwurst, Radler and Kuchen and Torte.

He also went on the Geo robotic walking machine to beat his own personal record with 1868 steps, I’d say way above what most of us here would have been able to do.

Earlier, I had prepared Pádraig for the day.

I talked to him about what was going to happen and not only did he seem to be very happy about it, he also opened both of his eyes and smiled while listening to the plan for the day.

Finally, and for the record, another first: I place towels beside Pádraig to wash him and position them underneath his arms and shoulders, pushing them slightly underneath his body. When I was about to do this today, he lifted up his left arm to allow me to do this. Another first.

All in all a great day in Burgau!

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?

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.