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!

Pádraig started to work his magic this week. It might be hard to believe if you haven’t experienced it yourself first hand.

His therapists are as excited as I am discovering every day, together with Pádraig, new things he’s able to do. It’s contagious. Like a virus. But a good one.

Think about it: here is the first person to be discharged home with this level of brain injury. It’s taking four months to make this happen because so many people are so afraid about so many things that might go so wrong that they check, like Santa, everything twice. No-one else has ever been discharged from the NRH with this level of care, apparently. There are so many “Firsts” here you could fill a book.

Once discharged, this person is turning out to be the miracle man.

He smiles when the therapists come in to work with him. He is so happy to see him. He cycles by himself, he moves limbs he never moved before. Yesterday, I forgot to mention this, he followed instructions to “deeply breath in….. and breathe out…..” and then “breathe in…, hold your breath…, and slowly breathe out…” – essential for generating sounds, for using his voice. He hadn’t done this before. But then, nobody had asked him to do this before either!

You’ll remember that two days ago he started to cycle by himself using the viva the MOTOMed, for a minute or two, and very slow 8-9 rpm. Yesterday, he cycled for nearly 30 minutes, at around 10-11 rpm. Today, he obviously had figured out how this works and cycled the half and hour with an incredible  – not 20, not 30, but 38 rpm! This is a speed faster than ever before in assisted cycling mode where we never went above 25-30 rpm.

Finally, I got a phone call today from Beaumont Hospital. Pádraig has an appointment not with one, but with two eye specialists who believe they can do something about his closed eyelids.

Can’t wait for the next miracle. What’s going on here is truly breath-taking. Go Pádraig! Go Dreamboaters!

There are some people with huge levels of energy who in their own amazing way manage to share this with others. They create this aura around them that makes you ‘go’ with them. They give you the encouragement and the motivation and the drive to do stuff you didn’t either bother to do or, if you did, weren’t able to do.

Today, Pádraig had a visit from a therapist who managed to make him lift one foot and put it down. Then to lift the other foot and put it down. Then to do the same with one leg. Then the other. And then both legs together.

Try it out yourself: sit on a chair and lift both legs up high in the air. See?

It ain’t easy. I have no idea how Pádraig managed to do this today.

You know, I don’t believe in this (Germans are very rational people) but there must be some energy, some power, something that even German engineers (and you know how brilliant they are about explaining things) could not explain.

It didn’t stop there but got even better later in the day.

Pádraig got really fed up with the alphabet table and the stupid spelling exercises being stuck with those three or four letter words that have no meaning by themselves – other than consisting of letters coming up relatively early in the frequency alphabet. Ja isses denn ein Wunder? would Nina Hagen say. And, to be honest, I would agree. Since we don’t want to give up on the switch, however, Pat has started some new exercises. With his hands. Not complex, but really really difficult for someone who so far had extremely little coordination and control of his limbs.

Ion’t that incredible?

Pledge

Over the last two days, and thanks to the efforts of one of An Saol’s strongest supporters, two candidates for the upcoming elections signed up for our Pledge: Catherine Murphy (Social Democrats) and Roderick O’Gorman (Green Party).

PLEASE make absolutely sure that candidates in your constituency sign An Saol’s pledge.

• Cover letter, click here;
• Small poster to keep beside your door, click here
• See who has already signed, click here
• Sign pledge the pledge here (http://bit.ly/2016Pledge).

First things first

Pádraig is taking on this cycle-thing as his own. He makes me think we should return the MOTOMed gadget to the HSE and get himself a normal exercise bike instead! Well, maybe not quite yet, but we’ve been left absolutely amazed. In all honesty, I’d never had thought that he would take this over, ignore the motor and get cycling himself. (I’m just showing my ‘innocence’, I guess, with someone who doesn’t know, never knew, what boundaries are.) We used to look at other injured wondering how they were doing it! And here is the man himself doing half an hour almost exclusively himself, at his own pace, achieving a new PB every day.

Shortage of beds for brain injury patients criticised

Labour’s Minister of State for Primary Care, Mental Health and Disability in the current Irish Government,  Kathleen Lynch, said there was a chronic shortage of beds for patients with acquired brain injuries and a complete lack of such beds in some regions. “With a serious head injury, immediate intervention is essential to ensure the person returns to normality, if normality can be achieved.

“It is conservatively estimated that there are 10,000 new brain injuries every year in this country, but there are just 110 beds in the Republic to deal with these people. That doesn’t make sense at any level,” she said.

“Even if we look at the Bucharest model, Romania, with a population of 22 million has 32 specialists per million of population.”

Ms Lynch said anything beyond a two-week delay was totally unacceptable, “but the tragic certainty that a sick person has to wait two years for an initial assessment is nothing short of abandonment of its obligation to the public by the HSE”.

The HSE, “which has a national annual budget in excess of €13 billion, a sum that would float some of the newer economies in the EU, should be giving us a much better service”.

She didn’t say this recently, but in 2008, when she was speaking during a Labour private members’ motion on neurological services.

The then Minister, Mary Harney, said a final draft report of a national review by the HSE of neurological services had been completed and “has been submitted to the Director of the National Hospitals Office for consideration”.

She said a new hospital with a completion target date of 2012, would provide additional treatment and diagnostic capacity. The design for the hospital is to be submitted for planning by mid-2008.

She added that “the HSE has also informed me that plans have also been prepared to develop a satellite unit of the National Rehabilitation Hospital attached to Beaumont Hospital, linking the rehabilitation expertise of NRH with the neurological services in Beaumont.

“This new proposed unit will provide acute medical rehabilitation services and early rehabilitation for those suffering from brain injury who access the National Neurosciences Unit at Beaumont Hospital and who currently have to access services at the National Rehabilitation Hospital.” She said the Government “is also committed in our programme to increasing rehabilitation bed capacity”.

Then Labour health spokeswoman Jan O’Sullivan, now the Minister of State for Primary Care, Mental Health and Disability in the current Irish Government, was “particularly concerned that we are hearing long-needed development of service being abandoned in order just to simply keep the service going without any changes in the way the service is run”.

Quotes above from an article by Marie O’Halloran in The Irish Times of 23 April 2008. Here is what I would add…

Reality check

None of Labour’s proposals tabled, none of the very grave concerns raised by them in their private motion eight (!) years ago have been tackled during their time in Government over the past five years when they had a chance to do so, which included —

• A chronic shortage of beds for patients with acquired brain injuries and a complete lack of such beds in some regions;
• An increase in the number of beds to treat ABI victims adequately (O’Sullivan mentioned that Ireland should aim to match Romania);
• To do something about getting immediate intervention for ABI victims which is essential to ensure the person returns to normality, if normality can be achieved.

None of the promises made by Mary Harney actually materialised: that includes —

• A new hospital with a completion target date of 2012, with additional treatment and diagnostic capacity;
• A satellite unit of the National Rehabilitation Hospital attached to Beaumont Hospital, linking the rehabilitation expertise of NRH with the neurological services in Beaumont;
• The provision of acute medical rehabilitation services and early rehabilitation for those suffering from brain injury who access the National Neurosciences Unit at Beaumont Hospital;
• An increase in rehabilitation bed capacity”.

In the meantime…

• Injured ABI patients spent months or years in acute hospitals, with insufficiently trained staff, acquiring new, additional, and completely avoidable injuries such as dropped feet, dislocated shoulders, or bed sores — occupying badly needed, very expensive beds unnecessarily;
• The National Rehabilitation Hospital (NRH) does not have one (!) neurologist; not one ophthalmologist; and an insufficient number of therapists.
• When leaving the NRH, they go back to an acute hospital, or a nursing home, or (in very few cases) home — where there is insufficient support to help the injured and their families to deal with their highly complex needs.
• The Neurological Alliance of Ireland, together with the National Clinical Programme for Neurology, today published a report stating, among other facts —
  • Ratios for the recommended number of neurologists per head of population (1:70,0000) are exceeded within each hospital group with the Mid West hospital group coming out worst with a ratio of 1:200,000.
  • Waiting times for routine MRI scanning exceed twelve months in seven of the eleven centres.
  • Ten of the eleven neurology centres reported very limited or no access to community neurorehabilitation services which are crucial for recovery and prevention of disability for people with neurological conditions.
  • The lack of neurorehabilitation services places an unsustainable burden on neurology services (RSch: never mind patients!!!) which are unable to discharge patients, or are forced to readmit patients for therapy services that should be available in the community.

Facit

• Everybody agrees that the services for ABI in Ireland are inadequate – to say it politely.
• Political parties don’t keep their promises in relation to ABI.
• Established service providers don’t (cannot?) deliver what is required, including Beaumont Hospital and the National Rehabilitation Hospital.
• The HSE does not (cannot?) invest in neurological rehabilitation as is required.
• The situation is worse for survivors of severe acquired brain injury (sABI)
• We need to set up a pilot project involving all those who really want to change the situation to demonstrate how to help survivors of sABI, based on best international practice and most recent international research.

As there doesn’t seem to be anyone else to do it, let’s work together under the umbrella of An Saol.

We need all sorts of expertise, from health policy to finance to legal to nursing to therapy to medical to regulatory to research to social media to design to marketing to fundraising.

I know I asked you a few times before. Finally: here is the form to sign up!

Now.

Here.