Following up on yesterday’s ‘swinging’ theme – here is a selection of swings and harnesses suspended from the ceiling of a couple of OT practices Pádraig and us visited. It all looks pretty simple but there are literally decades of experience in the constructs.

Some are more for fun, stimulation or relaxation (does that sound contradictory?), some are more for support and safety, for example when walking.

There were other things we discovered: for example, that you can build your own drum using a flower pot cover by a towel drenched in gelatine (which will get hard when it dries) and  secured with a simple string. Isn’t that ingenious? Although we didn’t check that I believe what we were told: if you take a flower pot with a hole in the bottom you can ‘blow’ out a candle by holding that hole close to it and beating the drum!

Something else I learned today is how closely connected our ability to ‘feel’ is to our ability to ‘move’. And how closely connected the feeling in our fingertips is to feelings and senses in our mouth.

In the end, everything seems to be connected!

The Sultans of Swing in Garding, wait for my daddy-oh, knock knock knocking on heaven’s door – is it superstition?

Not a bad night out in Garding, Germany’s second smallest city, with an amazing line-up of 7-8 live acts every Tuesday night in July and August. If you ever make it here, be prepared for the most unpretentious, ordinary looking, down to earth crowd. None of the ‘glamour’ of St. Peter Ording Sylt-wannabes.

For Pádraig it meant a swinging night out in Garding, with a bit of Dithmarscher beer, washing down a ‘bratwurst’, followed by a crêpes with Nutella. Who would ever have thought?

Here are two videos of Pádraig. Both absolutely spectacular. Think back or read the first year of this blog as a reminder and compare.

Even last year, when we tried to walk with Pádraig in Pforzheim, he (or was it us?) needed four people to do what we did this year with just two of us: I supported Pádraig from the back, and a lead therapist helped him to move his feet forward.

 

Pádraig has been using his arm, hands and fingers purposefully before. But today, he found a different purpose. He checked out the controls for a remote control car his therapist here in Garding gave him (just the remote, not the car:).

As we watched him using the controls, we thought that there are wheelchairs, not just toy cars, that can be controlled by joy sticks.

This week, our last week in Tating, Pádraig has a full diary. Dentist in Meldorf, assistive technology in Kiel, ‘swinging seat’ specialist in Büsum, as well as two hours of occupational therapy.

We’ll also have a meeting with builders who will adapt the place while we are away to make it easier for Pádraig to move between the rooms and to use the bathroom.

While all of this is happening, we are in the process of starting a partnership with one of Germany’s biggest and oldest charities supporting sick, disabled and socially disadvantaged persons, bethel.de.

Exciting times! Absolutely!

Truth be told, I was a bit distracted. We were talking just a bit too much to each other to be able to fully appreciate the commentary now being played back to us as we were driven on a guided hop-on-hop-off tour through the city of Dortmund, the city we all grew up in (if we ever did). Ten old class mates who had finished school 40 years ago and who met for the day to catch up with each others’ lives and to relive the past for a few hours.

Had we not looked out from our roofless double-decker bus at the city being described to us, we might have thought that the city we were ‘introduced’ to was a city as ‘beautiful’, ‘innovative’, ‘vibrant’, ‘full of history’, and ‘dynamic’ as Berlin, Munich or Hamburg. The story of Dortmund someone had prepared for the city tour was impressive: century-old history, kings and kaisers, the heart of the Ruhr-Valley and Germany’s industrial centre for decades, a few years of ‘confusion’ (“Wirren”) during  thirties and early forties followed by extremely successful economic re-structuring by the establishment of high-tech innovation parks and a world-leading service sector. The story wasn’t wrong, but it clearly didn’t match what we were seeing. However, someone clearly believed that this story truthfully represented the story of our city.

I’m writing this on my way back to Tating, on the train that is just passing through the city of Hamburg, crossing the Alster, passing by the hotels Merkel, Putin and Trump stayed in over the past couple of days, along the “Messe” where all the meetings took place, passing through Schanzenviertel Station that was closed off during the disturbances and protests with barbed wire.

Different people with different backgrounds and interests will tell you different stories about what happened in Hamburg over the past few days, why it happened, and what was achieved.

Why is the ‘truth’ so complicated? Is it not straight forward and simple?

I don’t think the truth is ‘straight forward’ and it’s not ‘simple’ even for ourselves, never mind when we want to share ‘it’ with others, never mind when it is being prepared for public consumption, like in the case of a simple city tour or a more complex G20 meeting.

Not being an expert in psychology (or anything else for that matter), but reflecting on my own experience, especially over the past few years, I think the ‘truth’ is so complex that I wouldn’t be able to deal with it in all its complexity. It has to do with self-protection and self-preservation, an instinct to survive. It’s an attempt to stay healthy (physically and mentally) and to survive by focusing on those aspects of the truth and the reality around me and inside myself that allow me to be at least ok, and happy at times.

Writing here is part of my life, a daily routine. It’s part of what I am doing to survive. It’s about aspects of what is going on inside and around me. It’s about how Pádraig is getting better, about his incredible determination, his smiles and his humour. What I write here is not the ‘full story’, it can’t be. It’s not ‘complete’, it doesn’t represent the ‘full truth’, but it is truthful. I want to write a more complete story one day but it will require a different approach.

Pádraig’s therapist near Tating suggested to list all the things he is able to do. It’s such an obvious suggestion and, like many obvious thoughts this one never really occurred to me.

Maybe it’s because we know what he can do. But then, most of the therapist (and really most of the people) seeing Pádraig don’t. They know part of what he can do, usually the part they are working on with him: physios know physio things, speech and language therapists know about SLT stuff he can do, and so on. It would also help us and himself to see how he has been improving over time.

I’m in Dortmund to meet old friends. Part of the reason is that 40 years ago we got our Abitur, our leaving certificate, Some of us haven’t met for many decades, with some I meet every few years. They are strange those meetings because on one hand, so many things have happened to each of us, On the other hand, some of us have such strong common memories that we can just continue were we left the last time we met. Be it as it will,

There are scandals so familiar to us that no one really gets excited about them anymore.

As a reminder: there is a child dying of hunger every ten seconds (remember Bono clicking his fingers every ten seconds during a concert to highlight this scandal) – although there is food for 10-12 billion people on our planet that his home to just 7.5 billion.

Almost 800 million live in extreme poverty – although there has never been as much money around as today.

We produce 81% of our energy burning coal, gas, and oil – although this is causing dangerous climate changes when we have alternative sources of energy available, such as solar and wind power.

There are many many people on earth for whom opening a tap to get water, and clean water, still sounds like fantasy.

According to Oxfam, eight men, amongst them Microsoft founder Bill Gates, textile entrepreneur Amancio Ortega of Zara, and investor Warren Buffett, together own wealth worth 426 billion dollar – more than half of the wealth owned by the poorer half of the earth’s population.

Today, none of the above really affects those of us living in the ‘developed’ world. We take food for granted. In fact, many of us find it difficult not to over-eat. While we might not feel rich in comparison to people richer than us, we are super rich from a ‘global’ perspective. We mostly don’t do much about climate issues, as they ‘don’t affect us’ (yet). We take clean water for granted. Gates, Ortega, and Buffett are people we treat like royalty used to be treated up to the French revolution.

I read about most of the above in a recent article in the SPIEGEL magazine. When I did, other concerns, scandals faded into nothingness.

It’s a little restaurant/snack bar right beside this amazing structure that regulates the effect of the tide at the entry of the Eider into the North Sea. These days, they are famous for their ‘cheap’ Krabbenbrötchen, bread rolls with North Sea Shrimps, costing less than half the 11.50 euro they charge in Hamburg. We had another of these really brilliant afternoons there, out of this world, away from worry, Pádraig eating a piece of cake and drinking a hot chocolate, us sharing a small bottle of white wine and having a bread role.

I’m writing this while I’m listening to the Global Citizens Event and Concert from Hamburg. Hamburg is the place to be these days. Whether you are a plane spotter (Airforce One is there along with he jets of President Xi of China and that of the Japanese President), an activist, journalist, or anarchist – they all gather in Hamburg for a few days.

And guess what? Angela Merkel is staying in the Atlantic Hotel where we spent several Christmases when Pádraig was in the Schön-Klinik, and where Udo Lindenberg occupies a permanent top floor flat.

In a place, not too far away from here, 200 police men from Berlin, ready to protect the G-20 Summit next weekend were sent back home. Because they did what every 20 something year old does: they party-ed. OK. It apparently was quite a wild party.

The whole episode has now generated some funny comments on Twitter and on t-shirts: “Keinen Bock auf Zoff. Wir machen lieber einen drauf.” Impossible for me to translate this, but it basically means “we’ve no interest in beating people up, we prefer to party”. Anti G-20 protesters have decided to leave crates of beer at the police camps, instead of preparing Molotov-Cocktails.

 

I thought today that I’ll never forget these days in my life. They are incredibly special. It’s like as if nothing could do us any harm, as if the world was perfect, idyllic.

 

We asked Pádraig to spell what he wanted to order for desert today. And thought “fingers crossed”. First letter that got a ‘bleep’ was the “A”. Since we had expected an “I” we double-checked twice. An “A” it was. Next letter was a “P”.

Was it “apple”? Yes, it was!

Was it “apple” “something”? Yes, it was.

First letter of that ‘something’ was a “T”. Was it “apple tart”? Yes, it was.

There was a huge grin on his face as he spelled out his order for desert – check out the picture below. And check out the butterfly that kept him company! There was a grin because he knew as well as we did that the chances of finding an apple pie in Germany, never mind in Tating, were pretty slim.

Generous as he is though, Pádraig settled for “Apfelkuchen”. With “I”cecream!

Now it was up to me to get the Apfelkuchen.

The Bäckerei didn’t have it. Apparently, Tuesday is their cheese cake day. I walked across the whole of Tating trying to get a slice of Apfelkuchen in the village’s famous coffee and cake house.

Luckily, they had a slice left. One!

Before all this happened at lunch time, Pádraig had a therapy session. And for the first time since his accident, he got on a kind of a swing. He really enjoyed it and I thought that we need to get his hammock back up and working in some way.

If not in the garden then maybe in his room, involving the ceiling hoist in some way.

It’s so interesting to see how different therapists have different approaches and are trying different ways of working with Pádraig.

There is a light at the end of this road. Standing tall. Helping the Dreamboat to navigate choppy waters.

The Westerhever Lighthouse is one of our favourite spots on the north coast. It’s wild, beautiful, and really in the middle of nowhere. We went there for a walk today when it was so windy that the whole area around the lighthouse was deserted, apart from a few sheep who didn’t have anywhere else to go. Spreading my arms and walking against the wind, I almost felt like flying.

Some ‘good’ news: The Irish Times today published a letter by the Neurological Alliance Ireland, signed by An Saol and many other organisations, calling on the Government to implement adequate neuro-rehabilitation services.

Sir, – As the representatives of national charities representing people with neurological conditions, we are writing to express our extreme concern at the lack of action on tackling the “silent crisis” in neuro-rehabilitation in this country.
What we are calling for is a commitment from this Government to multiannual investment across hospital and community to deliver the neuro-rehabilitation services that are taken for granted across the rest of Europe.
Ireland is a European blackspot when it comes to neuro-rehabilitation services at every stage of the pathway from hospital to home.
Many are losing a vital window of recovery as they wait months for a neuro-rehab bed or appropriate services in the community.
The National Neuro-rehabilitation Strategy was published in 2011 with an implementation plan expected within six months.
We are still waiting for that plan over six years later.
Minister for Health Simon Harris committed to publishing the plan by June this year in line with the commitment in the programme for government. We now understand that deadline will not be met and no timeline has been given for when the plan will be delivered.
It is one year since we launched our “We Need Our Heads Examined” campaign for action on neuro-rehabilitation.
Since then, we have had more empty promises, following on from more than a decade of failure by successive ministers to address this health crisis, which is leaving thousands of Irish people each year experiencing the unnecessary burden of disability, unable to leave hospital or living in inappropriate settings and with families struggling to cope. – Yours, etc,
MAGDALEN ROGERS, Executive Director, Neurological Alliance of Ireland;
KIERAN LOUGHRAN, Chief Executive, Headway;
THOMAS LILLIS, Chairman, Huntingtons Disease Association of Ireland;
PAULA GILMORE, Chief Executive, Parkinsons Association of Ireland;
BARBARA O’CONNELL, Chief Executive, Acquired Brain Injury Ireland;
CHRIS MACEY, Head of Advocacy, Irish Heart Foundation;
RICHARD LODGE, Chief Executive, Muscular Dystrophy Ireland;
REINHARD SCHALER, Chief Executive, An Saol;
TINA LEONARD, Head of Advocacy and Public Affairs, Alzheimer Society of Ireland;
AVA BATTLES, Chief Executive, Multiple Sclerosis Society of Ireland;
KATHLEEN O’MEARA, Director of Communications, Public Affairs and Fundraising Rehab Group;
NATASHA SMITH, Chairwoman, Brain Tumour Ireland;
JAMES McCARTHY, Chairman, Spinal Injuries Ireland.

I know, it’s not really good news that a letter like this has to be written. But at least there are people who recognise that the lack of a cohesive policy and approach to neuro-rehabilitation cannot be allowed to be continued.