The great Carol Moran sent me off this morning to Santiago and on to A Coruña from where I will try to figure out how Pádraig and us will walk the Camino (22-29 April).
Arrived in A Coruña, staying in a great Hostal, double room, single use, €24 per night. A far cry from Dublin prices. I got a bus down into town and wasn’t quite sure where to get off. As the bus also went through tons of one-way streets, I also didn’t know where I would get the bus back. In the end, I just stayed on it and did a one-hour bus no. 5 tour out to the famous Hercules light house and back to the train station and my hostal. Pulpo for dinner – Pádraig would have really enjoyed this – and getting ready for the morning.
It’ll be raining tomorrow, everybody says. I also can’t get my mobile wifi to work without which I’ll be pretty lost – unless I can trust the Camino sign posts? It’ll be a fun day.
I probably should be excited. In truth, I feel pretty lost and purposeless. Tomorrow will be another, better, more purposeful day!
We will continue with our regular Saturday social meetings this Saturday
Share your experiences with others!
Gather strength and courage!
Flavour life, literally!
The An Saol Foundation’s 6th Saturday Social Gathering of survivors of severe Acquired Brain Injury (sABI), their families and friends
An Saol Café
Everybody welcome!
Saturday, 11 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)
One of those nights when there is much to be said but I just don’t find the energy to do it. Just one thing: I spent the afternoon looking at a possible location for Teach An Saol, the An Saol House.
It’ll take a bit to find out whether it will work out, but if it does, it’ll be more than a dream come true.
In the meantime, Pádraig is continuing to improve, enjoying the good weather and being able to get out again.
And I realised that I’ll be going to Santiago on Saturday to scout out the ‘camino inglés’ from A Coruña to Santiago, the 75km way we’ll be walking with Pádraig starting on 22 April.
Dreamtime – time to dream.
PS: Today, we were told that damage done by carers (or PAs) will have to covered by us. Any tradesman needs insurance to cover damage they might do – is there a reason care agencies don’t?
If you bought flowers for your girl friend or wife today, you’re in the company of men who come in to help Pádraig. But, women’s day, believe me, is not a day for flowers. Must be one of these intercultural things.
I visited a family today I had not met before. Their son was very badly injured about six years ago, suffered a severe brain injury, and is now living in a care centre, a nursing home. They are neither Irish nationals nor EU nationals and are having an even harder time then us and the other families I’ve met to access the right support, even to find their way around the Irish system. Being a kind of a refugee is one thing, being one with a brain injury is another! And it would be so easy to help them…
In more uplifting news: early this afternoon, I called Prof Joseph Fins of Cornell Medical School and author of “Rights come to Mind” – the most amazing book about severe acquired brain injury I’ve seen, ever. Prof. Fins had sent an email last night saying he’d be very happy to talk to me over the phone, about Pádraig specifically and the way persons with severe acquired brain injury are being treated (or: not being treated).
It was the most uplifting and inspiring, confidence and energy infusing half an hour conversation I’ve had in a very long time.
After that conversation I thought: we are really going to change the world.
We’re thinking big here (while fixing the ‘small’ every day problems in the process).
What a brilliant swimming session it was today! Pádraig was really at his best. Kicking his legs and beginning to paddle with his arms. But, best of all, he stood up, supporting his body almost exclusively himself and holding his head up high with just a tiny little bit of support by myself. And himself? – He had a big big smile on his face really enjoying the whole experience. It was really good.
This morning, the second Brain Week event organised by the Neurological Alliance Ireland (NAI) and the Irish Brain Council (IBC) took place in Trinity College Dublin with a focus on: “Brain Research in Ireland: Investing in all our futures”. There were three sessions covered by ‘the usual suspects’, including Prof Orla Hardiman (Professor of Neurology, Trinity College Dublin). This was an event focusing on research. The funny thing was that I had echoes of my ‘day job’ as a researcher and project leader / participant in my ear the whole morning: synergy; user involvement; industrial relevance; big data; und so weiter und so fort… et cetera pp.
There was one funny video about taking prescription drugs that was really entertaining and lightened up the morning:
The talks were, as research talks are, far removed from my reality. For example: “Why Ireland needs to reflect the model of a National Institute for Health Research”, or: “Understanding the brain in health and disease: the crucial role of basic neuroscience”, or “Health Information Policy to Support Research and Innovation”.
Well done, both the NAI and the Brain Council for having organised a half-day conference and for completely ‘selling’ it out – all (free) tickets for the event were gone long before it eventually took place this morning.
But, to be honest, I need to see changes now. And I need to see something concrete to happen. The researchers talking this morning, to me, were living on a different planet and moving in a different time capsule.
What about doing the obvious – making what we have all known and have been aware of for a long time real: take those sABI survivors confined to nursing homes, those on “nutrition, medication, and hydration”, and get them a life worth living, in the midst of their families and friends, with the support they deserve, right now!
It’s National Brain Awareness Week, March 6th to 12th 2017, and tonight it was launched with an information evening in TCD with Professor Tim Lynch, Director of the Dublin Neurological Institute and National Clinical Lead for Neurology who was joined by one his colleagues as well as by one of his patients; Professor Shane O Mara, Professor of Experimental Brain Research in Trinity College Dublin, provided an overview of what the brain does in our lives.
One of the topics they talked about was deep brain stimulation, a kind of a pace maker for the brain, showing great potential for the treatment of many brain diseases.
Strangely enough, none of the Irish specialists had heard too much about the use of DBS for the treatment of severe acquired brain injury.
Had great plans for today, trying to catch up on work and plans for An Saol and although I was busy all day, it feels like as if there was nothing to show for.
Pádraig had a really great physio session in the morning with much of his body control slowly, very painfully slowly coming back, at least partially.
Taped a short interview for the Newstalk morning drive time programme which will be aired, hopefully, on Wednesday around 8:15.
Tomorrow is swimming day, but only after another, longer session of Brain Awareness Week in TCD’s Science Gallery.
No words from the HSE about a location for An Saol.
Dublin people used to go on holidays there, today it’s just a 30 minute drive and you’re there. In Bray.
It was a beautiful, bitterly cold spring day. Just perfect to go for a walk to this seaside town where Pádraig had spent his pocket money every year during a trip with his gran who brought him down to the seaside and the amusement arcades with their slot machines.
Not sure, but I think that this is where he must have discovered his interest in gambling, 5p at a time. He never hit the jackpot. But really enjoyed the thrill and the company.
We went down the promenade to the beautiful Bray Head Hotel and a little up Bray Head with beautiful views of Bray and the coast line. Dreaming.
Dreaming about An Saol. The Dreamboat going up the stream. A really exciting Future. Sin é An Saol.
This amazing community of survivors, family, friends, doctors, researchers, therapists, healers, scholars, musicians and artists. There are days when I think big. And think that every thing is possible.
We are standing in the great tradition of the suffragettes and the cicil rights movement of the sixties. In the past, everybody had a right to vote – except if you were a woman; in the past, everybody had a right to education – except if you were black; today, everybody has a right to rehabilitation, integration, and participation – except if you were the survivor of a severe acquired brain injury.
Today was historic, a day to be remembered and to look back to in the future. The An Saol Café was in full swing. It was packed and there were conversations that had never been had amongst such a big group of survivors of sABI, there families and friends.
What really surprised me was the similarity of the experience despite the very different background to the severe acquired brain injury cases. These conversations will be continued.
And our campaign to claim the civil and human rights of our family members has just begun.
Well and then – today was the first time ever that Pádraig travelled on Dublin bus. A dreamboater on the green double decker bus. Brilliant, don’t you think? Had anyone told any of this to anyone just 6 months ago, they would have been told that they were dreamer. But we’re not the only ones…
PS: Here are some more pictures from the An Saol Café (courtesy of Sandy):
Back from Berlin tonight where I attended a 2-day ‘After Care Conference’. It’s the 11th year that this conference took place, organised by a group of organisations led by the ZNS-Hannelore Kohl Stiftung. It’s where I heard professors shocking the attendants telling them that they had been in an institution where they saw health carers hoisting survivors of acquired brain injury! Hoisting! Instead of doing a manual transfer!! They couldn’t believe their ears that sABI were still being hoisted.
It was lovely when I came back this evening and Pádraig welcomed me with a big smile. We had a few good news here today and everybody around was in a really good mood.
I am completely exhausted tonight and thinking of a great day tomorrow at the An Saol Café. Looks like we’ll have a record attendance of survivors, with Niall from Longford, as well as Mandy (currently in Donnybrook), and David (now living ini Bray I think) will join the ‘regulars’
We’ll be having a great time – and remember, if you’re coming, bring some cake along and, very importantly, any kind of instrument!
More about Berlin over the coming days – as well as about something of the good news I received yesterday and today…Good night!
For three days now, Ireland’s most popular phone-in show had callers discussing the scandal of lack of neurological rehabilitation services and the placement of young people in nursing homes without the option of them being able to live in the community if they wanted to with the provision of adequate support services.
Today, Joe took calls from Tommy Lee who talked about how he has to fight to get appropriate neuro rehab services for his partner Amanda Dalton, and Mary Walsh took to the airways to highlight how her daughter Sarah had improved following intensive neuro rehab at a ‘boot camp’ in Germany.
As if that was not enough, The Irish Sun today reported on the closure of much sought after beds in the National Rehabilitation Hospital (NRH) because of staff shortages.
