They might not believe us. They might say:”Ah, we understand your personal tragedy and we’re really sorry about that, but we have to spend limited resources wisely – and persons with a severe acquired brain injury have little prospect of recovery.” They might even ask you (they did ask us in a hospital):”Would it not have been better had he died?”

Tell them to watch the interview with Prof. Andreas Bender, a top-class researcher and clinician working with survivors of severe acquired brain injury on the “Mission” section of http://www.ansaol.ie.

It will rock their world to the foundations.

The good news is: He will talk at the launch of the An Saol Project on Saturday. So make sure you’ll be there and bring all of your family and friends with you! Find out more about the day on Facebook.

In the meantime, Pádraig gave us a ‘head up’ today – pretty impressive stuff, considering he still has considerable problems with head control. Check this out:

And finally – here is a person I’ve never met. She is an Irish-born OT, living in England. She just got married. Apparently, some couples give their guests a small present, a ‘wedding favour’. Genny and her husband decided to make a donation to An Saol, instead of giving the gift to their guests, and to tell all of their wedding guests about An Saol. Isn’t this absolutely wonderful? If there is a God (and there is one), he will truly bless that marriage. What a gesture on the happiest day of your life, to think of and to help persons with sABI?

PLEASE don’t forget to join us on Saturday:)

RTÉ Radio One’s Carol Moran today announced the event we’re organising for the launch of the An Saol Project on her show, The Weekend on One. The first of many such announcement over the coming week!

DIARY NOTICE

An Saol Foundation

Official Launch of Day Care Centre

Saturday, June 18,

10:30am Lighthouse Cinema

and

14.30pm Distillery Building,

both in Smithfield, Dublin

Independent €1.5m initiative to aid survivors of severe acquired brain injury

On Saturday, June 18, An Saol Foundation begins a daylong series of film, talks and discussions to mark the launch of an independent pilot programme for five survivors of severe acquired brain injury (sABI).

This €1.5m day-care centre will offer an intensive and inclusive neurological rehabilitation programme that is informed by best international practice.

Currently, too many survivors of sABI are maintained in inadequate circumstances in nursing homes on a cocktail of drugs and kept alive through hydration and nutrition via a PEG. There has still been no properly costed, credible implementation plan to implement the 2011-2015 Neurological Rehabilitation Strategy.

At 10:30am Smithfield’s Lighthouse Cinema hosts the Irish premiere of the German award-winning documentary Would You Rather Be Dead? The film follows the lives of six severely disabled people who have lived for many years in a care home in Hamburg.

Following lunch in the Distillery Building, Smithfield, the An Saol Foundation will be launched at 14:30pm in the Distillery Building, Smithfield. Irish and international experts participate including

Prof Andreas Bender (Munich University), Ruud and Daniela Geerlofs (Neuro Rehab Centre, Pforzheim, Germany), and Dr Ansgar Herkenrath (Lebenszentrum Koenigsborn, Germany), as well as Dr Delargy (clinical lead, NRH), Barbara O’Connell (ABI Ireland), and Richard Stables (Headway Ireland).

This will be followed by a discussion with friends and families of those affected by sABI, as well as survivors.

About An Saol

We are families, friends and supporters of persons affected by a severe acquired brain injury (sABI). Established as a non-profit organisation, registered in Ireland, An Saol is dedicated to giving survivors of sABI every opportunity to live their lives with dignity and respect, to continue to improve, to regain as much independence and self-determination as possible, and for their injuries to heal, supported by adequate therapies. We will offer advice and support to families and friends affected by sABI.

Interviews available on request

Media contact

Reinhard Schaler: email Reinhard.Schaler@ansaol.ie; mobile: 087-6736414

Visit www.ansaol.ie or search for “An Saol Day” on Facebook.

Free tickets (donation suggested) are available on http://bit.ly/AnSaolFilm and http://AnSaolLaunch.

You can also contact: web : www.ansaol.ie

Twitter: @an_saol

Facebook: An Saol

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

There are too many things going on and I am too tired. So tonight, there will be ‘Funkstille’, more tomorrow.

You can help in many different ways. And you know what? None of what we are about to do will work without your help! There is an endless list of things that need to be done. All the things that need to be done and we can’t pay for. And all the things that need to be done and that we need to pay for.

Exercising while standing in his bed

Apart from joining us tomorrow week for An Saol Day yourself, bring along everyone you can. But, most importantly, bring along politicians. They are the only ones that can cut through the red tape, literally. They need to be told by you, by us, that the way persons with severe acquired brain injury are treated in this country is inhumane and plain wrong.

Imagine. You start off with a very severe brain injury. As if that was not bad enough, your body progressively deteriorates because you are denied even the most basic treatment, never mind proper neuro rehabilitation. It is absolutely sickening.

We need to show muscle.

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

A new website. A new funding site for the great An Saol Project. New videos. 200+ individual letters sent to friends, acquaintances, supporters, and people we have been in touch with. Diary notice prepared and emailed. Press Release prepared. Posters and cards printed and reprinted because we ran out of them. Another corporate sponsor secured.

The day isn’t long enough. And I’m getting tired too quickly. There was some great help available to prepare and post the personal invitations. There was very swift and professional help available to prepare the press material. – Without that help, I’d still be making lists of what needed to be done without actually getting to a point of doing anything.

I’m having too little time on my hands to care properly for Pádraig. I’m telling myself that this is just for the next few weeks and that after those weeks, I’ll have more time again to spend with him. I’m also thinking that if, no “when” the An Saol Project really kicks off, it’ll all have been worth it.

Also spent far too much time discussing emails, service delivery, meeting dates and all this other stuff that just keeps getting up my nose.

Still not heard from Aer Lingus about support for bringing Pádraig to Boston in about two weeks, despite our repeated emails and phone calls. We’ll try to get them say ‘yes we wild er, at least, no we won’t.

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

A full day. Packed. With all the emotions. In the morning, we all went to the funeral of an uncle who had sadly passed away. For some, it was the third visit to the same graveyard in less than 12 months. How do you keep your inner strength to carry you through these sad times? But then, it was the first time to see the son of one of the cousins, a gorgeous baby who immediately too to Pádraig and vice versa. A new life coming into the world as others depart. Is that what life is about? It just continues? And then back home, Pádraig had a special request: and out came the MOTOMed. It must have been so nice to exercise not in the enclosed space of his room, but outside in the fresh air. I went to meet a good friend who is an expert in ‘volunteer management’ and got a crash course in how to approach this best. (More about this later.) Finally, another good friend came in and we spent a few hours writing invitations and envelopes for An Saol Day, prepared a press release, and a letter to invite politicians. About to have a bite to eat now.

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

What do you do when you see that something is fundamentally wrong? So wrong that tears come to your eyes. Your stomach turns. You wonder what is wrong with your fellow human beings that they allow this to happen? – Like allowing the body of a person (!) to deteriorate because they might never be able to use it as their brain is severely injured?

Care about their dropped feet? – Why? They won’t ever be able to walk!

Care about their teeth? – Why? They won’t ever be able to eat!

Care about their hands, their arms? Why? – They won’t ever be able to use them again!

Care about their digestive system? Why? – Medication can fix that!

If you are horrified about the thought of someone being given laxatives so that their bowl movements coincide with the working hours of carers. If you believe someone has a right to a life in community. Out and about. If you aren’t happy for the life of persons with severe brain injuries to be determined by mid 19th century lunacy legislation.

Here’s something you can do. Here are your tasks:

1. Always appreciate that life is something to be cherished and never dismissed – however grave the circumstances.
2. Tell everybody about it. Tweet. Facebook. Talk.
3. Join us on 18 June (see below) and make sure to bring along as many family members and friends as possible. Show the media and the politicians and the country that you care.
4. Support the An Saol Project connecting neurological rehabilitation with the latest research showing that intensive mental and physical exercise is the only proven approach to regain function. – No more neglect. Ever.

Today, we were talking to Pádraig about the launch and the cycle from Boston to Cape Cod the following week – actually, less than three weeks ago. We asked him would he like to go back to Boston and the Cape with us. I don’t have to tell you what he answered. So we rung and then emailed Aer Lingus telling them about Pádraig’s accident and our cycle, and explaining why he needed an executive class seat for such a long flight. Can’t wait to hear back from them!

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

I spent decades of my life learning and teaching and researching about how to make digital content (computer programmes, websites, digital stuff in general) available to people in their language. For free. Gratis. One of the places where I promoted these ideas was the industry’s biggest event, Localisation World, hosted by Ullrich and Donna both of whom have been in the ‘business’ for (almost) as long as I have been. (We won’t haggle over a few years here and there:)

Anyhow, Localisation World is coming to Dublin laster this week. Donna and Ullrich took a day of to visit us and spend some time together.

Over many years (decades?) I had met them at different events, not so over the past three years. Three years ago, they had organised a big fundraiser for Pádraig together with another friend, Tony, at a time when all was still up in the air and we had been still in shock. Today, they mentioned the possibility of maybe organising another big fundraiser for An Saol.

It was a really nice afternoon, talking to two people I used to work with a lot, this time not about ‘business’, but in a much more personal way, as friends.

I had a long conversation with David and Sharon tonight looking at the new website and some videos they have been working on for An Saol. We are almost there. No Irish version yet, but a pretty good-looking English version that will just need a bit of review and tweaking.

Pádraig had another visitor tonight, a regular visitor who talks and reads with him in Irish. My day hasn’t come yet, but it will. The day that I will be able to say more than a cupla focal as Gaeilge.

He is enjoying the visits, different faces, different voices, speaking in different languages, about different things. Isn’t that what life is all about – people doing their thing, interacting, talking, being together, living. Simple.

I’ve been thinking more about how to make people stand up and say ‘no more’. No more maintenance. From now on it’ll be all about life.

How can any one human decide for another human whether their life is meaningful or not? Nobody has the right to decide that all a particular fellow human merits is being fed and hydrated through a tube? That their teeth don’t need attention (they will never be able to eat anyway) and that it doesn’t matter that they get dropped feet (they will never be able to walk again anyways)?

We need to tell the people who suggest it might be better had our family members died that they should keep their views to themselves. We need to shame and blame the people who want to make us and other believe that ‘maintenance’ (rather than neuro rehab in the widest sense) is the only viable option: they are violating the human rights of our loved ones.

I want the scandal to come out, to be heard and seen and felt all over the country. I want everyone to join me to say ‘stop’. How can I achieve this? Still thinking… 🙂

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.

On the way back from Leitrim, we stopped by Niall’s mother’s house to meet her and Niall’s sister.

What a family!

Niall’s sister Sandy has been maintaining a very active Facebook page about her brother’s accident and following recovery. This is how she introduces it:

This page is for Family and Friends to see Nialls PROGRESS following his TBI in 1989 26 years later, and to give Hope to people with TBI Never say Never

Check it out. It really is an amazing journey, maintaining their energy over almost three decades, against the odds and still making progress!

Today she told us that Niall has made terrific progress in the last few years and she has documented this progress on the Facebook page. It’s such an inspirational family who has maintained their strength despite the difficult times their brother and the whole family had to endure. What Sandy was telling us about their continued fight for her brother’s right to a life with respect and dignity made me so angry. No future seems to be what the health system had in mind for him, but the family and, above all, Niall himself, proofed them wrong.

While we were in the house, Pádraig was listening to every word that was spoken and followed the account word by word.

We hope that Niall and his family will be able to join us on the 18 June for the launch of the An Saol Project!

Please don’t forget to promote An Saol Day, 18 June. Please get your tickets for the movie and launch today. Invite your families and friends. We need you there on the day to show our strength and commitment! Like the event on Facebook.