There’s just a bit more than a day left until An Saol Day on Saturday.

Our guests from Germany will be arriving tomorrow.

And, if you are in Dublin, you will hopefully be able to join us for what will be the biggest day in the short history of An Saol.

Today, Raidio na Gaeltachta’s Cormac Ó hEadhra, who will also moderate the discussions, talked to Maria about An Saol and the programme for Saturday on his show Cormac  a Cúig.

Thank you, Cormac and Maria, for sharing this with the Irish-speaking community. It means a lot to Pádraig, and, hopefully, also to all the others who will be joining us on Saturday.

Now – we ned your help!

• We need a few volunteers to help us welcoming those who will join us and registering them.
• We will need someone who can take pictures (even with a phone) and, if at all possible, a video of the proceedings – both the discussion after the screening and at the launch.
• Finally, please don’t forget to come yourself – and bring all your friends all and relatives along!
• https://www.facebook.com/events/116620465415749/

This day next week, at this time, Cian and I will be sitting somewhere in Boston with our bikes, getting ready for our visit at the Attorney General’s office to find out whatever happened to the letters we and many of you wrote.

Pádraig is crying out for more therapy and a targeted neurological rehabilitation programme. Tomorrow we’re starting our “Endspurt”, our sprint finish, to get the An Saol Project off the ground together with Ireland and International experts. Help us to make this day a surrounding success and memorable day: the beginning of long-term rehabilitation for those with an severe Acquired Brain Injury (#sABI)!

I’ve had these moments when I feel so helpless, when I really do not understand the world anymore, when I feel like saying: just leave me in peace. You must know them. Well, I had a few of these today – but then, I also had one of the most amazing conversations as well.

First the frustration.

I received an email (actually yesterday) from a hospital to say they would like to put up the poster of the Saturday event, but would like me to remove the title of the film as it could be problematic for their patients. – Ok, I thought: how to you advertise the Irish Premiere of a film without actually naming it? And then I got a tiny bit angry. Doctors and nurses had told us, us directly and at times in Pádraig’s presence, that it might have been better had he died; that he would not have a meaningful life and that we should consider organ donations; that investing adequate healthcare in him would be just a waste of precious resources. I am sure that none of this was personal. This is the way some (most?) health care professionals think in this country. And a film that names the elephant in the room and tries to provide surprising, positive answers should not be named… The good news is that, after a bit of negotiation, the hospital agreed to put up the posters, with a note pasted on it saying something along these lines…

Then, we got a phone call. A gentleman announced that he would collect the MOTOMed tomorrow as Pádraig’s three months of MOTOMed use was up. There are occasions when you really think enough is enough. This was one of these. I think had that person talked to me I would have told them to stick the MOTOMed up their back side. They didn’t (speak to me) on this occasion, so we questioned this with a therapist who managed to stop the collection. When we asked when Pádraig would get a MOTOMed with arm trainer, we were told that patients like Pádraig would not get one. When we said that another person in a similar position was getting one we were told he had to be assessed as he might not be able for it. When we said that if he didn’t get one soon his arms would get worse and then he definitely would not be able for it (when he had one prescribed and given in Germany more than a year ago) we were told that carers and myself had been shown how to exercise his arms. I should remind you that Pádraig does not get a daily, not a weekly, but a monthly visit by a physio. ONE VISIT A MONTH with minimum treatment that does not last longer than 20 minutes. Young men in nursing homes get more than that. And you thought nursing homes were bad places for young persons with acquired brain injuries. (They are.) With all due respect: I’ve had enough. Really. Oh, one more: we have been told that if we were to supplement the visit/month of physio treatment provided by the HSE with privately paid for neuro physio, the HSE would stop their treatment. The question is: are they serious? Really? The answer is: Very sadly, they are. Worse: they don’t even see anything wrong with this approach.

Here is the amazing conversation.

I got a FaceTime call at around 9am and we talked until 10.45 or so. What’s so amazing about this? Normal. Right? The amazing thing was that the couple I was talking to were in LA. They were working through the night, and it wasn’t their first and will not be their last night of work, to finish off the videos and the An Saol website. And while we were at it, they asked me to send them the project proposal so they could work on a nice layout for it (to be printed for the launch on Saturday) and the dimensions for a pull-out banner, also for the launch. They are doing this work not just for nothing, they are investing their time and money into helping An Saol. I am sure there is a God who sees what they are doing. Just in case he’s not looking, I will remember what they have been doing and make sure that, some day, I can return at least a fraction of what they have given – although I know that this is the last thing on their mind. Even with money, loads and loads of money, we would not have been able to buy this commitment. It is absolutely fantastic, extra-ordinary, and out of this world.

Pádraig is doing fine. But just fine. He is drinking so much better, to a point where I believe that soon he won’t need the PEG anymore even for fluid. He is holding his head so much better and helps when we move him (even a little). He is also making more sounds, still not a huge amount but noticeably more, his voice is coming back very very slowly. He has given a chocolate yoghurt a 5 out of 5, and his lunch a 4 out of 5, and he prefers spuds over pasta. – What he desperately needs is not me, or the carers, doing some exercises with him – he needs a long-term neuro rehabilitation programme designed to support the progress he is making, before he looses motivation or his physical condition deteriorates. So this is not a matter of ‘let’s review this in a month’s time’ it’s a matter of let’s do this now.

I wonder how the bureaucrats in the HSE and the health professionals acting like bureaucrats would act was this their brother or their son? What do you think?

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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.

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

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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.

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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.

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.

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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.

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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.

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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.

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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.

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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!

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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.

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