Today, Pádraig stood up – for his rights.

This is a slightly long story. About just one issue. But, I think, worthwhile telling. And thinking about. And wondering: how is this possible in a civilised society?

Last summer, and you’ll probably remember me writing about this, I sent all the details about Pádraig’s care at home in Hamburg to the relevant people in Dublin, so that they would know what would be required for Pádraig in Dublin.

Pádraig had been assessed by doctors. We had lived with him almost nine months. I forwarded the specs and the prices for his equipment. This was going to be easy.

Just over two weeks ago (i.e. 5 months after Pádraig’s arrival in Ireland), a rep with a therapist measured (again!) the height of Pádraig’s room to make sure the standing bed would fit in.

Last Wednesday, at a meeting, we heard that Pádraig’s standing bed could still not be ordered because the right mattress had not yet been sourced (the rep had suggested a 2.1m mattress for the 2.3m standing bed – remember, I had forwarded the spec. for the right mattress and the details of the company selling it last summer).

Here now starts an even more amazing part of the story.

Last Friday, a therapist (without clearly communicating this to us) called Pádraig’s GP practice because they had become worried about Pádraig’s oxygen levels after a visit to see him the previous afternoon. Yesterday, both Pat (at home) and I (in Berlin) were surprised to get phone calls from the practice and then a visit by doctors – out of the blue. But – as we all know, lack of oxygen can be very serious.

There was a problem with Pádraig’s oxygen levels, sadly but not so surprising — as it was almost going to be expected: anybody not standing and not being mobilised for months will develop these problems. First year medical student knowledge.

This is why we had taken the initiative about a week or two ago and ordered a tilt table ourselves – basically, a therapy table that can ‘stand up’. We were not prepared to put Pádraig’s health at serious risk any longer.

After a bit of research, we ordered it from Poland where it was tailor-made for Pádraig and shipped to our home for less than half the price and in a quarter of the time it would have taken had we ordered it from a supplier in Ireland. (I hear you all asking: what???)

When Padraig stood up this morning, for the first time in months, in his brand new table, his lungs cleared, his oxygen levels went back to normal.

Having stood up, finally, in the standing-table, having felt his body on his feet again, this afternoon, he achieved another few PBs when cycling the MOTOMed. He cycled 2.5km at 42rpm – on his own.

I am tempted, but won’t, list all the things that went wrong here and won’t point out where it all went wrong and who was involved. Even as a non-expert, you’ll see that by yourself.

Not standing up for such a prolonged period of time significantly increases the very serious risks for your well-being, if not your life. For anybody – and far more so for someone with such serious injuries as Pádraig’s.

In my opinion, denying him, for months, the possibility to stand up is a violation of a long list of Pádraig’s rights – patients’ rights and basic universal human rights.

Someone said to me recently: in years to come, there will be an enquiry into how persons with severe acquired brain injury were treated in Ireland. And there will be an outcry and people will ask: how could we have allowed this happen?

We have the opportunity now to stand up, with Pádraig and others, for their rights.

Collectively, we can stop this injustice, the ill-treatment of the most vulnerable.

Run. I’ll sing it one last time for you, then we really have to go. You’ve been the only thing that’s right In all I’ve done. And I can barely look at you, but every single time I do I know we’ll make it anywhere, away from here. Light up, as if you have a choice even if you cannot hear my voice. I’ll be right beside you dear. Louder. louder! And we’ll run for our lives. I can hardly speak I understand why you can’t raise your voice to say. To think I might not see those eyes makes it so hard not to cry and as we say our long goodbye I nearly do.

Everybody has a choice. In elections (like today). In life (like every day).

Isn’t that absolutely fabulous? Taking charge. Pádraig making his choices. Like them or not. Isn’t this what it is all about?

Not about meetings. Not about people covering their backs. Not about people worried about what’s not theirs. Not about reports. Phone calls. Patronising decisions. Making decisions on behalf of others. – It’s about Pádraig making his choices. For candidates and parties. For life.

P H A N T A S T I C.

And you know what? – I bet his vote will make all the difference. I mean that. In so many different ways.

Back to Berlin. Or is it ‘from’?

Made some great contacts at the Hannelore-Kohl Stiftung’s “Nachsorgekongress” (Conference on After Care) and learned a lot about how the support for survivors of ABI is constantly evolving in Germany. I have discussed some initial easy-to-realise collaboration with the Hannelore-Kohl Stiftung and with the Selbsthilfeverband Forum Gehirn (Self-help Group Brain Forum) for persons with an ABI and their families. Also learned a new acronym: MeH, Menschen mit erworbener Hirnschädigung (People with ABI). As there was also a French group of people affected by ABI, to me it looks like as if there was good chance of a European Initiative in the making for some time in the future.

It is strange phoning home to find out how Pádraig and everyone is doing. Can’t wait to get back. — There was a lot of reassurance from people here in Berlin that what we are doing is the right thing. Life continues, maybe life is different, maybe it’s a different life (on person affected said that this is his ‘second’ life). They all highlighted how important mobility and inclusion is. One incredible (but perfectly logical) point various DOCTORS made was that every opportunity for ABI survivors to move and to feel their bodies was crucial AND that transfer in a lifter was absolutely ***inappropriate*** in this context. I wonder if that figures in the education of physios and OTs.

I mentioned in a previous post that I wrote up a draft proposal for “Teach An Saol”. Here are the links:

• Proposal
• Costing

I also mentioned that I was going to share some quotes from draft reports prepared by Irish Experts on neuro rehabilitation. Note that this is not final and not signed off. It’s a bit long, but worthwhile reading it.

There is a significant body of international evidence to support the benefit and cost effectiveness of specialist rehabilitation services within a modern health service. In Ireland there are profound resource and delivery gaps in rehabilitation services when compared with those in other European countries. Chronic underinvestment and the lack, until recently, of a coherent national strategy to guide the development of neurorehabilitation services are the principal contributors to this position.

Emergency trauma and medical care in now more responsive and effective; more people are surviving catastrophic injuries with complex, life-changing neurological, vascular and orthopaedic effects. This has led to an overwhelming unmet requirement for specialist rehabilitation services particularly for people who have sustained major central nervous system injuries. This is evidenced, for instance, by the inexorable growth in numbers of people with newly acquired complex disability after neurological injury on a national specialist rehabilitation list.

Many community residential options for younger, severely disabled people do not meet their unique needs where continuing slow functional recovery is possible over many years after their injury. Development of more structured community based rehabilitation teams is required to support patients during gradual step-down from tertiary centres and regional units so that they can be supported in reintegrating within their local communities. New funding paradigms that recognise the unique and complex long-term requirements of severely disabled survivors of catastrophic illness or injury require urgent consideration. One suggestion that warrants closer scrutiny is that of ring-fenced central funding allocated after detailed needs assessment.

Effective and realistic goal setting, with patient and family engagement, across the continuum of recovery and service delivery, is the cornerstone of the rehabilitation process. Timely access to acute and post-acute specialist rehabilitation in facilities equipped to treat patients with complex rehabilitation needs must be realised to optimise the functional recovery of those who survive catastrophic injuries and illnesses. Expansion and standardisation of community rehabilitation services is essential to ensure that the benefits of post-acute rehabilitation are sustained and reinforced as patients make progress in their new lives.

I think our proposal, if supported by the Health Service, would go a significant way in achieving what the Irish experts say needs to be done.

Wouldn’t it be great to collaborate on this exiting project and, together, celebrate the improvements to the current services, and, more importantly, the huge improvements in the condition and quality of life it will bring to survivors?

Cheap hotels don’t have high speed internet connections. So for tonight, I’ll keep it were short. The first day of the ‘After-Care’ Congress organised by the Hannelore-Kohl Stiftung has been really interesting – and, amazingly, I stayed awake despite the 5am rise.

At home it must have been a very busy day with very many people coming and going all the time.

On the way here this morning, I read bits of a care plan for neuro-rehab and couldn’t believe how clearly this makes the case for an urgent overall of the current situation. More tomorrow.

I miss home, miss the family, miss Pádraig.

Following the Film Night last Friday, today was Wednesday Afternoon out in town time.

A friend of Pádraig’s came along for good company and to help with transport. It was the first time since the accident that Pádraig had a stroll in Stephen’s Green and a look at the shops in Stephen’s Green Shopping Centre. It was really lovely. – The plan is to repeat this every Wednesday (another friend of Pádraig’s has volunteered for that – but, the more the merrier:).

We also had another one of the meetings with the HSE (Pat attended that) with loads of people present.

In the morning, I attended my first meeting with the NAI discussing the draft implementation plan of the Neuro Rehab Strategy 2011-2015. The overall view of this was pretty abysmal – nothing really new and very many essential details missing (like dates and a budget and the most basic data).

I’ll be off to Berlin tomorrow too early in the morning for a two-day event organised by the Hannelore Kohl Stiftung on ‘After-Care’ – basically about what is being done or should be done after persons with brain injuries are discharged from acute care. Back Friday night.

It was one of these days that has passed and you wonder – what happened?

We left early for Pádraig’s appointment at Beaumont Hospital’s Eye Clinic. That went very well and confirmed Pádraig’s relatively good eye sight. They will keep track of Pádraig’s development and he’ll see them again in 6 months time.

At the main entrance

The Chapel

Potatoes and Beans

Lunch time in the restaurant

Familiar places

The Kidney House where we used to take breaks and get nice coffees

As we were in Beaumont, we went up to the Richmond Ward and were lucky enough to see some of the nurses who had looked after Pádraig while he was there in late 2013. It brought back so many memories. Meeting the nurses again also reminded me how much they really cared for Pádraig under very difficult circumstances.

Before we left Beaumont, we went to the chapel where we had prayed every day; and  we went to the restaurant where we had eaten every day for four month while Pádraig was on a slow and constant PEG feed upstairs – and we had been so worried. This time, Pádraig was with us, eating beans and potatoes. A world of difference!

We had builders in the house again beginning to fix stuff that is still outstanding – a dusty affair, but great to see some progress on that front.

An An Saol strategy meeting in the evening followed by a really inspirational evening of talks and conversations in St Francis Hospice.

Really tired now, about to go to bed. Wondering what this day was all about…

Does that happen to you at times?

In a nutshell.

A 3-year pilot project for three injured persons with a severe acquired brain injury, accompanied by international monitors, advising on best international practice, in a day care setting.

We are costing this properly at the moment, will propose it to the HSE and do fundraising for it.

The point of it is to demonstrate that there is life and living with a severe acquired brain injury. That really significant improvements can be achieved. That practice has to catch up with new findings in neuro rehabilitation.

That’s it. In a nutshell.

What has been happening to Pádraig over the past years and months is not a coincidence. It is normal. With the right support.

Denying this support is not an option.

Pádraig is clearly making more use of his voice. At the appropriate time. He is not really talking yet, but he’ll be getting there. In the meantime, he keeps on cycling on the MOTOMed (viva!), and exercising in other ways.

Tomorrow morning, he has an appointment in Beaumont’s Hospital Eye Clinic. Last time he was there was the very early morning of 11 November 2013, when a physio had started to work with him at 5am to get him ready for the long trip to Hamburg.

Take whatever you like. A club, a charity, a company. No matter what it is, you want to know what it is all about. What is at the core. In under 3 seconds. Because then you make up your mind. Whether you want to find out more. Or move on.

Yesterday, I ‘hangout’ with a cousin of a very good friend of mine and his wife. I had never met them before and thought we’d just talk a bit about An Saol, and especially the two fundraising cycles.

They were sitting in California in what looked like a studio. I was sitting in our sitting room which must have looked, in comparison, so 20th century.

Two hours later, they told me that they would be privileged to help me getting the message out to as any people as possible. Using the web. Using short video clips. And, who knows, making a documentary.

They said: imagine.

Doctors were telling you there is no hope. And look at Pádraig today, cycling in his MOTOMed at almost four times the recommended speed pre-set by the physios – all by himself; not cooperating with people who ask stupid questions (do you spell Kodaline with a ‘C’ or a ‘K’) but letting them know immediately if they ask him something more substantial, or ask him what would be his favourite drink or meal.

They ‘got it’. And they reminded me of what is at the Core of An Saol. What it is that Pádraig is demonstrating to the world. What his new mission in life is.

It couldn’t be simpler. It couldn’t be more important.

An Saol – Life.

The joy of living. The determination to make the best of what life has to offer. The energy to live life to the full. Love of life. Love of family, friends and the people around you.

An Saol – Life. With a severe acquired brain injury. Is different and challenging. But look at Pádraig and his incredible determination, energy, and love of life, love of people.

Life doesn’t end with a severe acquired brain injury.

This is why we need to make sure that Pádraig – and anyone else with injuries like his – can continue to enjoy what he enjoys as much as anyone else his age: music, good conversations and debate, company, culture, good food and drink, baths, banter, travel, physical and mental challenges.

The way to ensure that he – and anyone else with injuries like his – can enjoy life to the fullest is to provide an adequate social environment where that can happen, as well as adequate therapies supporting recovery and maintenance of as much of his mental and physical abilities as possible.

It’s about An Saol – Live and Living with a severe Acquired Brain Injury.

That’s at the core! – Everything we do must help us to get there!

Pádraig had a great weekend. First with a family visiting who also have a son with a severe acquired brain injury yesterday (a first). Then our first ‘dinner party’ invitation (another first) to the house of some very special friends today where we all sat around the table and had a perfect meal and brilliant company. It was fabulous.

Last night, I didn’t mention that we watched that film, Fitzcarraldo, during the first edition of our movie nights. We had a packed house, full of friends. I ate too much chocolate, too much popcorn and too much ice-cream. The film is about 2.30 hours long and since we did not manage to start on time at 7.00, the film finished quite late. Good job we could all have a bit of a lie in this morning!

The final scene of this film is still playing in my head: The boat, steaming down the Amazon, with a life Opera performance, and a smiling, happy, satisfied Fitzcarraldo in his white suit, smoking the biggest cigar I’d ever seen, standing beside the most expensive red chair – showing to the hundreds of onlookers on shore that he had succeeded, he had realised his dream to bring an opera to Iquitos, despite all the odds.

Here’s an important question.

What is the core mission of An Saol?

Up to this evening, my answer would have been: providing therapies, helping families, providing a place to meet and (if necessary) to stay.

Tonight, it became clear that these are not at the core what An Saol is all about. These are instruments, ways to achieve the main goal, but themselves they ain’t. It became clear that An Saol is, as the name implies, all about something much simpler. It’s about life and living, with a severe acquire brain injury (sABI). It’s about showing to people that an sABI is not the end. That it is not better to die than to live with an sABI. That as long as a person has a passion for life, he has the right to live (with all that implies), and we as individuals and as a society, have the responsibility to provide them with all the support they require to live their life in dignity and with respect.

Everything else follows from that.

More tomorrow.

He had this dream of building an opera house in Iquitos and getting Caruso to perform at the opening, similar to what had happened in Manaus, the world’s richest city where people sent their clothes to Europe to get them washed.

He managed to get his girl friend to invest in his dream, registered land, and bought a boat. He managed to get this boat dragged across a mountain and into the river that linked up with a huge area of rubber trees. But his Indian native helpers cut the boat loose one night and let it drift through dangerous rapids back towards the Amazon. He had to sell the boat but was allowed to use it for another two weeks. So he sent the captain of the boat to Manaus to get the orchestra and the singers over to Iquitos for one final performance. He also asks him to bring a red chair and the best cigars in the world.

https://www.youtube.com/watch?v=1sUKzsoVQ0U

First of all, I must apologise to all who got a bit of a fright because of the title of last night’s blog post. I was thinking of something going viral, of energy being contagious, in a real good way.

And this is what is happening.

Look at this.

Almost 2.5km in half an hour at 40rpm. By himself.

The physio asked us to programme the motor moving Pádraig’s legs in the VIVA El MOTOMed at 10rpm so that Pádraig wouldn’t get tired or overstretched.

He is cycling by himself at 40 (!) rpm. For half an hour!

Here is the proof.

Is that not absolutely amazing??!!

Tonight a few friends called in and brought a brand new exclusive CD with international Irish stars singing their songs in Irish. You cannot buy it anywhere yet, you can’t get it anywhere yet as a CD. Except in Pádraig’s room now. (You can download it from here though.) I’ll show you the world-exclusive cover and play you a few songs tomorrow!