Positive

Good friends of Pádraig’s got together for the mother of all coffee mornings yesterday to meet old and new friends, neighbours and colleagues, eat sumptuous  home-made cakes, drink delicious coffee and tea, try their luck on a raffle with incredibly attractive prizes and spend some time on this nice summer Sunday in great company – all for “Caring for Pádraig”. And, from what I’ve heard, everybody had a brilliant time.

Pádraig could not join, unfortunately – his got up at 4am yesterday morning to get to the airport and travel to Pforzheim in Germany to one (if not the) most advanced neuro rehab centres around. It’s a centre that is pushing the treatment of its clients to the limits, going with them to “places” they never thought they’d be able to go to ever again –

He would not have been able to do this, had it not been for the humbling generosity of his friends and family, like those who organised, contributed to and attended yesterday’s coffee morning, those who work tirelessly to fundraise for Pádraig’s care, so his stay and treatment in Pforzheim can be paid for (amongst other things). Thank you!

Here, the diagnosis is: positive. Pádraig has much more control of his legs, hips and lower upper body than before. He is, literally, working his way up – so shoulders, neck and head will be next. This means that he’ll need to concentrate on this part of his body and exercise loads. As much as possible. Work out. Push himself as much as he can. It’s common sense: if you want to improve physically and mentally, exercise is your only man. Wer rasted, der roster. The body, someone who knows told me once, is lazy by nature – if you don’t use it, it’ll shut down eventually.

Another article about An Saol was published today in the North (of Dublin:) –

Dublin People – COMMENT: An open letter to Minister for Health Simon Harris

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Exceptional

Too tired to write – just to say that we made it to Pforzheim in trains, planes, and automobiles… Pádraig recognised the apartment we’re staying in and loves it. Even the expectation of 4 weeks of absolute and complete workout is uplifting!

The older you get the cooler you want to be. Here’s a short story about a very cool song.

There are song with lyrics you will never forget because they touch your heart or they are really absolutely brilliant, written by a genius. There are songs with lyrics you’ll never forget for a different reason. – As I am getting ready for the #GreatAmericanCycle Part II, I’m trying to listen to the appropriate music to get me in the mood. That’s where I came across the song “Move to L.A.” by Art Brut. Have a listen… (alternatively click here for the live version:):

Not much glam’ about the english weather
There’s not much left to bring us together
Sunshine on a rainy day
Makes me want to move away
But I think I’ve got it sorted
I’m gonna get myself deported

[Chorus]
I’m considering a move to LA
(He’s considering a move to LA)

I don’t know about you, but this, for my pretty boring taste, is quite exceptional:)

Coffee

Whatever you do – get ready for the most amazing coffee morning in aid of ‘Caring for Pádraig’. Please spread the word and invite your family and friends over to Marie’s and Fergus’ house this coming Sunday, 28 September, 11am – 3pm, in 85 St. Mobhi Road! 

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I’ll keep it short tonight – we’ll be getting up at 4am to get ready for the airport. Four weeks of intensive neuro rehab for Pádraig. We’ll be back just one week before we’ll head off for the Great American Cycle II, from Hollywood to Napa!

Wish us luck for tomorrow’s journey and the 4 weeks of intensive neuro rehab in Pforzheim!

Tapetenwechsel

On Sunday morning, really early, we’ll fly to Germany, the second time this year, to get intensive neurological rehabilitation for Pádraig. Four weeks of really hard work, of pushing ourselves to the limit, falling into the bed in the evening with no energy left, waking up in the morning full of excitement of the things to come. It would be just that little bit too much to think about this as a ‘holiday’, but it’ll be a great break and a great boost for Pádraig and, indeed, for us. Nothing like a “Tapetenwechsel”, as I would have said in my good auld German days… (I’m afraid this is one of those German words you can’t translate literally.) Really looking forward to it.

Unfortunately, we’ll be missing the fabulous Coffee Morning organised by Marie and her family.

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Whatever you do – get ready for the most amazing coffee morning in aid of ‘Caring for Pádraig’. Please spread the word and invite your family and friends over to Marie’s and Fergus’ house this coming Sunday, 28 September, 11am – 3pm, in 85 St. Mobhi Road! 

I got up real early this morning to get out clean trousers and a clean shirt and my smartest looking shoes to make it on time for 7:45 to the TV3 studios and my 7 minutes of fame on the global stage of morning TV with IrelandAM.

It was nerve-wrecking and terribly exciting. Both, Sinead Desmond and Ian Nocher, as well as Heather Blackbyrne were great. I managed to watch the few minutes that I was on when I came back home on 3e and couldn’t believe how well they had put the piece together and how well they had used the pictures and video clips I had sent on to them. – The interview is now up on TV3 player, check it out!

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Uncut

He is Pádraig’s name sake. And it was a real pleasure to meet him. Pat Kenny managed to guide me through what could have been an endless story and managed to keep it within a double-session they hadn’t really planned for, but which they kept, uncut.  I listened to it with Pádraig. He said he liked the interview. Maybe it will contribute to bringing change by making the hidden scandal of abandonment of persons with severe acquired brain injury public.

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If you manage to push yourself out of bed tomorrow morning, or just reach the remote of your telly, switch on Ireland AM. You’ll be rewarded by sharing with me my 5 minutes of fame at around 8.15:)

Whatever you do – get ready for the most amazing coffee morning in aid of ‘Caring for Pádraig’. Please spread the word and invite your family and friends over to Marie’s and Fergus’ house this coming Sunday, 28 September, 11am – 3pm, in 85 St. Mobhi Road! 

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Hypothetically

Something really cool happened today. Pádraig went into his bank. As one does. And he asked for his bank statement. As one does. And was told they’d send it out to him. They don’t do bank statements in the bank anymore. No hustle at all. – Isn’t that great? The way to do it. Pádraig knows exactly what he wants (and doesn’t), he communicated that to the lads in the bank, and there was no reason not to get that for him, right?


But first things first: here is to the health professionals who make a huge difference to the lives of so many people every day. Here is to the health professionals who have made a difference to Pádraig’s life. To those who believe that he is alive, that his mind is alive, that his brain functions, that he is capable, ambitious, interested, curious, highly intelligent, full of humour, full of energy, full of love of life, love. Beautiful. That he has a right to his physical integrity and a life with dignity and respect. Thank you for the amazing work you are doing, the difference you make to his life and to our life, and to the life of others. Keep up the good work!

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However (there is always a “however”:) – imagine a situation, completely fictional, hypothetically, where a young person (or an old one like myself) suffers a catastrophic brain injury. I know it’s painful to even think about it. But try.

Imagine, completely fictional, hypothetically, that person’s family and loved ones being asked questions and given ‘information’ like: “Wouldn’t it have been better if s/he’d died?” “Did they ever consider not to operate?” “Oh, we don’t expect him/her ever to speak or to walk or to eat or to drink or to think or to feel or to communicate!” “Scarce resources have to be invested in patients with a hope of recovery (therefore, not in your son/daughter)!” “Your son/daughter is stable now and does not require any more physio at the moment.” Or, even one ‘better’: “The therapists will be back to see him/her in half a year’s time or, maybe, a year, unless s/he gets significantly better in the meantime – then, naturally, they’ll return earlier.”

Imagine a situation, completely fictional, hypothetically, where family members are getting distressed when being talked to by the professionals (because of the way they are being talked to). Where family members take tranquillisers before attending meetings with the health professionals because of the almost unbearable stressful situations created in these meetings. Imagine years of hard, draining struggles by families for the most basic rights of their loved ones, the right to a life not confined to medication, hydration, and nutrition – when they and their injured family member have already enough ‘struggle’ on their hands and when they should be offered, with pride and as a matter of course, all the help they need.

Imagine a situation, completely fictional, hypothetically, where injuries, such as dropped feet or contracted limbs, where psychological damage and severe social isolation and abandonment of injured (and their families) are knowingly accepted by the State services as being part of what happens to survivors of severe acquired brain injury (and their families).

Imagine a situation, completely fictional, hypothetically, where those who highlighted the shortcomings of services, the lack or appropriate resources, the lack of knowledge by professionals of the incredible power of the brain to heal itself, over years and decades, and especially if offered really intensive mental and physical exercise, if they are threatened with solicitors and serious consequences for their loved ones.

Now imagine, again completely fictional, hypothetically, that this young person began to breath, eat and drink normally; that they started to ride their exercise bike by themselves every day and began to take control of their body; that they were able again to understand complex situations, take decisions, and communicate them to their family and, with assistance, to those around them; and that this, their autonomy, was (with some very honourable exceptions) not recognised by the State.

Now here comes the question of all questions:

Just hypothetically, if all this happened in a civilised country with a democratically elected government and a proper legislative framework, a country to is a member of several international political and human rights organisations – would you say that this government was guilty of criminal neglect, would you say that this government was guilty of violating the most basic human rights of these persons?

Just hypothetically, I think it would be guilty on both counts. – What do you think?


The Irish Sun followed up on their larger coverage yesterday, with a short update by their political correspondent, Myles McEntee.

160824 The Sun

The coverage was also picked up by Dubin Live.

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Met Pat Kenny today, for the first time, in Newstalk, where he interviewed me – the interview turned out to be a bit longer than planned and they had to find another slot for it. He didn’t want to edit it. So powerful was the stuff he heard. I really hope that whoever will listen to the interview tomorrow, hopefully at around 11am, will share that view. Will be touched. Will be outraged. And do something. With us.

Because doing nothing, leaving things as they are, is not an option.

What do this German, Englishman, and Irishman have in common?

What do this German, Englishman, and Irishman have in common?

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Answer
The Three Amigos are going on
The Great American Cycle
1,000km in 12 days from Hollywood to Napa
04-15 October 2016

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Are they crazy? Have they lost their senses?
How on earth will they be able to complete this gruelling cycle?
What are the odds?
Everybody else cycles this famous route north to south – except them!

Help them!
They are doing the cycle of their life!
They are doing this cycle for life
€1.5m for An Saol (Irish for “Life”)!
Life in dignity and with respect for survivors of severe acquired brain injury!
Don’t let them go crazy and come home empty handed!

http://www.ansaol.ie/donate
info@ansaol.ie

 

Hhhhhmmmm

Anyone who was at Ruth’s birthday party (personally, I think “party” gives away her age – what do you think?:) last Saturday week, and those who couldn’t make it but still donated to An Saol, a major “thank you” for an extremely generous response!

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Beyond making an extremely generous donation, Ruth’s guests (100+) now all know about An Soal and the An Saol Project. If they told a few of their friends about the scandal that is the neglect by the State of persons with severe acquired brain injury and the need for the An Saol Project to get – by whatever means – the 1.5m euro funding it requires, then a few hundred people, just in Ireland will be talking about this. Wow – would that make a difference!

Here comes the sun doododoodo… {with subtitles for our dear friends in Spain}

Talking about making a difference, the article in today’s The Irish Sun (“please, please, now really – the *Irish* SUN?”, I here you asking), the paper, has certainly made a difference. Not sure whether the young journalist who wrote the story or, indeed, his slightly more weathered news editor realised the coverage this article was going to get today. Not exactly sure how Facebook works, but the link I posted today reached 3,654 people – unfortunately, I don’t know how many hits the article on The Irish Sun’s website received. There is one important office though who must have read it.

160822 The Sun org s 2016-08-22 11-54-06

Today, at 14:37, I received an email from the private secretary of the Minister of Health, Simon Harris TD, apologising for the delay in responding to my communications, assuring that the issues raised are being examined, and that he would get back to me shortly. Hhhhmmm.

 

ParishNews

At 3:50pm today, Minister of Health Simon Harris tweeted: @TerFlanagan @EndaKennedyTD @an_saol @reinhardschaler am looking into this and will be back in touch with @an_saol.

But this was just one of many good news today.

Another piece of good news was that Pádraig went, for the first time since his accident, to the cinema, the pictures, to watch a movie.

Why he picked ‘Jason Bourne’ remains his secret. But the fact that we went and he had picked it was phenomenal! Here is a bit of information I found on the internet about the movie:

In 1991, Arnold Schwarzenegger was paid $15 million to star in Terminator 2: Judgment Day, a movie where he only speaks 700 worlds in 137 minutes. That’s roughly $21,429 per word. Earlier this year, everyone slowly realized that Henry Cavill’s Superman had very little to say in Batman v Superman: Dawn of Justice, even though his character’s name was in the title. He only has 43 lines of dialogue in the whole movie.

So the news that Matt Damon apparently only speaks about 25 lines of dialogue in the upcoming Jason Bourneisn’t completely out of the ordinary. Heroes who speak little and let their actions do the talking for them have been staples ever since Clint Eastwood put on a cowboy hat and squinted his eyes at the desert heat. So just go ahead and consider this your cool trivia of the day.

A good friend is organising another coffee morning for Pádraig, and the parish publicised it in their newsletter today:
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The Three Amigos are getting ready for their big An Saol Fundraising cycle from Hollywood to Napa in October. We’ll be posting some footage soon about how we’re getting on with the preparations. Are you curious?

Awesome

Have a look at this. Pádraig is taking back control over his life! Picking drinks. Switching off boring programmes on the TV. You should have seen the joy on his face as he started to explore this amazing technology. He picked orange juice – and he got it. It’s that simple and that powerful.

The programme reads out all the choices once. Than, when it reads out the choices a second time, he makes his choice by pressing a switch connected to the Dynavox system, then the it reads out the choice he made again to confirm.

In other news –

If I was a politician, especially the Minister of Health, I’d listen up. Because here is a huge opportunity to do the right thing for families who are now speaking out and to support the An Saol Project. – You wonder what they are waiting for.

Not just myself, but even Taoiseach Enda Kenny TD, have asked the Minister of Health to get in touch. I have requested, several times, a meeting – but sadly there hasn’t been even as much as an acknowledgment so far.

Here are some recent articles about Shane Grogan and An Saol in the Irish Independent and the Irish Mirror, and articles about Amanda Denton and An Saol in today’s Irish Times. – Worth a read.

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And I promise you – this is just the beginning. There will be an avalanche of people speaking out, of journalists and the public asking questions, demanding that this injustice and violation of the most basic human rights must stop.

You can help – why not email, ring, or write to your local TDs asking them to support the An Saol Project and ask the Taoiseach and Minister of Health if they could meet with An Saol?

 

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