We will be continuing with our Saturday meetings this Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 5th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends

An Saol Café

Everybody welcome!

Saturday, 04 March 2017
2pm – 5pm

Odin’s Wood HSE Day Care Centre
Kildonan Road
Finglas West
Dublin 11
Eircode: D11 H526

Enjoy an afternoon with great tea/coffee
Bring a cake, a game or an instrument
Bring yourself, friends and family
Please help us to spread the word!
http://www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

28 years in a nursing home from age 21 following a severe acquired brain injury. Niall is about to celebrate his 49th birthday and defied doctors who had told his family that he would remain in a vegetative state for the rest of his life. His sister Sandy told his story to Joe Duffy today on Ireland’s biggest phone-in radio show, Liveline.

‘What a remarkable family’, concluded Joe. You can listen to the full programme here.

We listened to the programme on our way to Pádraig’s weekly swimming session. It was a great interview and congratulations to Sandy for speaking up and for sharing her family’s and especially her brother’s story with us! – Sandy brings her brother up from Longford to the Saturday An Saol Café about once a month. Last time, her mother came with her and we got a picture of herself and Pádraig. I don’t know what the magic of her is but she brought the biggest of smiles to Pádraig’s face when she talked to him!

Trish is in her 50s and suffering from MS. She has been in a nursing home for 5 years but strongly believes that this is not the right place for her. The Irish Nation’s most popular telephone / phone-in show, Liveline, today took up her plight. “Talk-to-Joe’ Duffy, the presenter, asked whether there was anyone not turned 50 who has been in a nursing home for 5 years.

His researchers remembered Pádraig’s story and An Saol and gave me a call, and the opportunity to “Talk to Joe” on national radio about the scandal of the abandonment of young people with severe acquired brain injury in nursing homes without adequate support, therapies, or social environment – as well as sharing the good news of the approval by the Minister of Health and the HSE of our proposed pilot project.

The Northside People are reporting on the approval by the Government and the HSE of the An Saol 3-year pilot project establishing a day centre for persons with a severe acquired brain injury in their newest edition of 01 March 2017, on page 5, in an article written by Terence Flanagan.

Northside People, p.5, 01 March 2017

Pádraig keeps braking his own personal bests (PBs) almost on a daily basis. Sitting in his wheelchair, he is now able of keeping his legs lifted up in the air for longer than his carers can. Today, he has started to turn his head to the right – previously, he could turn it only to the left. He smiles more often and really seems to engage much better than ever before with what is going on around him.

The biggest challenge now is to keep making life and living really interesting for him, with challenges he can overcome and milestones he can reach. Getting him to participate more, telling us what he wants and what his opinions are.

To express his consciousness.

Some of Pádraig’s friends organised a movie ‘night’ for him that was really a movie afternoon. They went to great length to get it all just right: crisps, popcorn, donuts, the whole works. The place certainly smelled like a cinema. The movie they had picked was Lock, Stock and Two Smoking Barrels, according to Wikipedia, a 1998 British crime comedy film written and directed by Guy Ritchie, produced by Matthew Vaughn and starring an ensemble cast featuring Jason Flemyng, Dexter Fletcher, Nick Moran, Jason Statham, Steven Mackintosh, Vinnie Jones, and Sting.

Pádraig said he enjoyed it and so did his friends. I got a bit lost with the London underground gangsta language and an extraordinary amount of blood baths… all part of a surreal story line!

Earlier this morning, I had found an interview with Joseph J. Fins.

It’s just four minutes long and really well worth watching.

There is a right to live! There is a human right to conduct your life. With a severe acquired brain injury.

One of the greatest challenges in today’s society is science literacy, says Prof Fins in another interview.

And here is a longer, 34 minute talk presented at the Measuring Borderline States of Consciousness conference, hosted by the NYU Center for Mind, Brain, and Consciousness and the NYU Center for Bioethics on October 24-25, 2014.

If you still have time, have a look at TG4’s extraordinary documentary about a group of old men rowing from Ireland all the way to A Coruña from where they will walk the Camino Inglés to Santiago de Compostela!

The way Pádraig will go in April!

We had another great afternoon in the “An Saol Café” today in Odin’s Wood. Nice, relaxed, social, different. – Next week, we’ll have some nice music again, with hopefully more families and friends joining us – can’t wait. Please come and join us, and: spread the word.

I picked up a brochure in Odin’t Wood today.

Read on. Imagine. And just substitute “Elder” with “sABI Survivor”…

There’s no excuse for sABI Survivor Abuse

What is sABI Survivor Abuse?

sABI Survivor Abuse is defined as a “single or repeated act, or lack of appropriate action, occurring within any relationship where there is anexpectation of trust which causes harm or distress to an sABI survivor or violates their human and civil rights.

In the following paragraph, I substituted ‘ageism’ and ‘age’ with “discrimination against sABI survivors”.

Spotlight on Discrimination

Discrimination against sABI survivors, is the stereotyping of and discrimination against, individuals or groups because of their sABI.

Such discriminatory attitudes can convey the message that sABI survivors are of less value than other citizens. This message is reflected in the ways that people think and speak about sABI survivors and act towards them. As an sABI survivor you may come to see yourself as others see you, and this can diminish your confidence and limit your potential as a person and a citizen.

All that makes perfect sense, doesn’t it?

Only that the HSE hasn’t prepared a brochure entitled “There’s No Excuse for sABI Survivor Abuse” – yet.

We will be continuing with our Saturday meetings this Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!

The An Saol Foundation’s 4th Saturday Social Gathering
of survivors of severe Acquired Brain Injury (sABI), their families and friends
Everybody welcome

Saturday, 25 February 2017
2pm – 5pm

Odin’s Wood HSE Day Care Centre
Kildonan Road
Finglas West
Dublin 11
Eircode: D11 H526

Enjoy an afternoon with great tea/coffee
Bring a cake, a game or an instrument
Bring yourself, friends and family
Please help us to spread the word!
http://www.ansaol.ie
Reinhard.Schaler@ansaol.ie
For enquiries: 087 – 6736414 (Reinhard)

What a world this is where lifting up your arm, moving your hand across towards your face, scratching you nose, and moving your hand back, lowering your arm – is big news. Today, this was a first for Pádraig. He can now, when his nose tickles, scratch it.

Imagine, just for a second, not being able to do this yourself; not being able to scratch your nose when it itches.

What a day it must have been for Pádraig!

When good friends gave Pádraig a wheelchair enabled car they originally had bought for their mother, it changed his life. He became mobile again. In this car, he got to his first major train journey, he travelled through the length of Germany to get intensive neuro rehab in Pforzheim, and he travelled from Pforzheim through France and on the ferry to come back to Dublin. And these were just some of the longer journeys. So we are all really really grateful for that incredible gift.

Last night, he got a slightly bigger car that will make it easier for him to get in and out, and to have some additional space when he is travelling. As it happens, the ‘new’ car also is an 08, the same age, as the Doblo. It’s the only car we found big enough to take him and his wheelchair comfortably in, and the only car that drives and behaves more like a car than a van.

Today, he took his first spin in the new Sedona.

We’ll have to figure out a few details and not everything worked straight away. What we hope is that this will make it easier and more comfortable for him to travel.

Now guess what – tomorrow, I have a call scheduled with a lady who is running a place for persons with acquired brain injuries in Dublin (USA), and she has a son called Pádraig. – More in days to come…

1.5 is the magic number, the “answer to the ultimate question of life, the universe, and everything”. And I bet you thought it was 42 – just because that number was calculated by an enormous supercomputer named Deep Thought over a period of 7.5 million years…

Pictured L-R: Cyclist Phil Skelton, Government Chief Whip and Meath East TD Regina Doherty, Fine Gael Galway East TD Ciaran Cannon

Well, it’s 1.5. Because it’s 1.5m euro we will need to run An Saol’s three year pilot project  And because it’s 1.5m that drivers should stay clear of bicycles when they overtake. The latter made the news today, because two TDs (or members of parliament) proposed a new law today that included a penalty for drivers who don’t keep sufficient distance from cyclists when they overtake.

The former will make headlines soon when it’ll open its doors to provide services that have never been available in the country up to now!

Pádraig had a good day today with physio, massage, and music therapy sessions (all organised by his family and friends) – except for a mishap when someone could not stop complaining and making jokes about this new law for drivers to stay clear of cyclists, until about the fifth time of asking that person to stop, making it clear that talking about this issue and, worse, in this tone was not even remotely funny in our house. Afterwards I felt like having a big full glass of something really strong, I just couldn’t believe it. I guess anything is possible, even the unthinkable.

Anyhow, I’ll be focusing on the positive, the good things. And the good people. Like the ones whose mother would have been 92 today and who have been supporting Pádraig and us like no other, never making a big fuss about it. Tonight, I’ll be thinking of this lady who would’ve been so proud of the family she raised if she was still around today to celebrate her birthday – though I’m sure she’s still with us. Good spirits stay on with us. Forever.

There must be a name for the phase I’m going through at the moment. You know, one that come after denial, anger, bargaining, depression, and acceptance. It doesn’t all end with acceptance.

Like, I’ve just written yet another email to the Attorney General’s office in Boston to find out what they found out when they investigated the investigation into the accident. It’s the third time in the third year that I’m about to launch yet another campaign to establish whether the police can just issue a press release declaring someone ‘guilty’ of his own devastating brain injury within just a couple of hours of the accident on the internet because they had apparently established that the “threat” (that’s what they called Pádraig, the “threat” to the driver) just had decided to cycle into the way of that driver’s truck that was very carefully and keeping the correct distance trying to overtake him on a road that gave him sufficient space to do that safely with traffic conditions that allowed him to do this. Oh my God! I wonder, do they take all this for real themselves?

What I am doing, I am not doing in anger but out of a sense of justice that, I believe, should prevail. I am not bargaining, there is no ‘what if’… I am not depressed about what happened, life has changed for all of us, it’s not what we had planned or imagined – who would have? – but we are where we are. Which does not mean that I would have accepted what has happened in relation to the insurance or the police nor the lack of an appropriate health service. How could I? Anybody?

So what is this sixth ‘phase’?

Pádraig needs more of our efforts directed towards communication. Enabling him to communicate and enabling us to get a better grasp of how he is communicating. We’re getting pretty good with the physical side of things and he continues to make progress. Now we need to mirror that with a focus on communication.

Imagine how much he could and wants to share with us – how much his ideas and brilliant sense of humour, his at times completely over the top but very matter of fact statements only he can make, would make us all get going like nothing could ever get in our way? What would he tell us about ‘phases’? Can you imagine?