A bit in a panic tonight, trying to get ready for my ten minutes of fame at the launch of the Neurological Alliance Ireland (NAI) campaign, “We need our heads examined”, in the Mansion House in the morning.

Then out to the airport and off to Boston.

I am so not ready – but it’ll all work out.

Had two radio interviews over the past two days, so the An Saol campaign and our Great American Cycle is getting a bit of publicity. There’ll be a bit of coverage of the cycle on Sunday/Monday as well.

Pádraig got his Eye Gazer and Communicator soft- and hardware calibrated today for the two week trial – and what we all thought would be terribly complex (calibrating the technology with Pádraig’s eyes), he managed to do to perfection and in no time. Brilliant first step!

Here is the information circulated to the press about the cycle:

An Saol Foundation for Severe Acquired Brain Injury

Press Statement for Immediate Release

Cycle for Pádraig Schaler from Boston to Cape Cod

June 26-27, 2016

Trio undertake US cycle to raise funds for An Saol neuro-rehabilitation project

Salute to the bravery of Pádraig Schaler and all other severe acquired brain injury survivors

On Sunday, June 26, 2016, a week after An Saol’s successful launch of its neuro rehabilitation initiative (http://www.thejournal.ie/brain-injury-ireland-padraig-schaler-2827573-Jun2016/), Reinhard Schaler (57) and two of his son’s friends, Cian Waters and Neil McEnaney, undertake a two-day bike ride from Boston to Brewster on Cape Cod.

Their journey ends in Brewster on Monday, June 27 at 10h00, the exact moment Padraig Schaler, then aged 23, was hit by a truck and left with a catastrophic brain injury.

The three are raising money for An Saol’s €1.5m rehabilitation service for survivors of such injuries (see http://www.ansaol.ie).

Reinhard Schaler, Pádraig’s father, said: “This will be the most difficult cycle of my life as I recall my son’s dreadful accident and its awful consequences. But what will keep the pedals turning is my awareness of Padraig’s indomitable determination to survive and the knowledge that I and Cian and Neil are raising money for a facility that will respect and fulfil his needs and those of others in his situation.”

Cian Waters says: “Life can change in a second. Nobody knows that better than my friend, champion swimmer and Gaeilgeoir Pádraig Schaler (26) who suffered a catastrophic brain injury when a truck tried to overtake him with oncoming traffic on a narrow road in Brewster, Cape Cod, on June 27, 2013. Doctors told his family that life would be intolerable for him, even if he survived. He has survived and he deserves better treatment than what he is currently receiving from the Irish State. I’m cycling to change things for him and other sABI survivors.”

Neil McEnaney says: “Pádraig has defied all predictions. Keeping to his well-known single-mindedness and the focus of a true athlete, he fought the fight of his life. He survived not just the accident but also several secondary complications that could have killed him a number of times. Pádraig is not the only young man who is being denied the neuro-rehabilitation he requires. Many with injuries such as his are being maintained in nursing homes, receiving what can only be called ‘end of life treatment’.”

Reinhard Schaler adds: “Parents of one sABI survivor have been told that all their son required was nutrition, hydration, and medication. Ireland is one of only two EU countries that have not ratified the UN Convention of the Rights of Persons with Disabilities. This is not good enough and should be addressed immediately. We’re calling on Junior Disability Minister Finian McGrath and Health Minister Simon Harris to match our €1.5m funding so that our sons and daughters, parents and friends with sABI can finally have the dignity they are entitled to under the UN Convention.”

Donations to support the An Saol Project can be made on: www.gofundme.com/AnSaolProject

Interviews available on request

Ends

Media Inquiries

Reinhard Schaler: email Reinhard.Schaler@ansaol.ie; mobile: +353 (0) 87-6736414

Log on to www.ansaol.ie ; Follow us on Twitter: @an_saol #sABI; Like us on Facebook: An Saol

About Pádraig

Pádraig Schaler had just finished his studies at Trinity College Dublin and had planned to spend the summer on Cape Code, working on a J1 visa like thousands of other young Irish students when he had his accident. He can see, hear and understand but, for the moment, remains non-verbal, making use of a special switch to communicate. He also has not yet regained control of his body and requires 24-hour care.

About An Saol Foundation

We are families, friends and supporters of persons affected by a severe acquired brain injury (sABI). We have established the An Saol Foundation as a non-profit organisation, registered in Ireland. We will offer advice and support to families and friends affected by sABI. The An Saol Foundation pledges to afford every opportunity to people with severe Acquired Brain Injury (sABI) to live their life 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.

References for Journalists

http://www.thejournal.ie/brain-injury-ireland-padraig-schaler-2827573-Jun2016/

www.ansaol.ie

http://ansaol.ie/media/

https://vimeo.com/171203441

https://vimeo.com/170218301/c932a99f5d

 

How long is the longest day of the year?

We had waited for months for this appointment in the NRH which, we had been told when Pádraig was discharged, would in some way continue with the therapies and neuro-rehabilitation Pádraig needed when he was at home.

So we went to the NRH having great expectations. Pádraig had an appointment with a speech and language therapist (SLT) as well as with an occupational therapist (OT). We were wondering how they would organise his outpatient treatment, how often would they see him, what their goals would be for Pádraig? Better head control, upper body stability, sitting, posture, trying out different textures in food, mouth/lips/swallowing exercises, learning how to use his voice more often and more regularly and purposefully – we were sure the specialists would come up with a prioritised list of therapies and goals out of the long list of needs Pádraig has.

When we went their yesterday for the appointment, full of hope, we rapidly realised that this was a check up on Pádraig, on us, on how we were all doing. There were a few lists to be filled in, some questions to be answered, with therapists who didn’t know anything about Pádraig apart from what they were reading in the files they had with them. So there we were, telling them how we were all doing, how Pádraig needed more therapies, and they telling us that they were surprised to see Pádraig in such a good shape. That other persons in his situation could have spasms so strong that they were not able to stretch out their arms any longer, meaning that terrible wounds would develop in their arm pits. In this case, they would use splints – something you would use to immobilise a broken bone… My question, whether they felt this was right, I don’t think was even understood.

Today, Pádraig had his monthly physio visit. Yes, once a month he has a visit by a physio. Again, the question whether that was right, whether that was sufficient, I don’t think was even understood.

Today, and here is the good news, the Communicator 5 and the Tobii eye tracking software and device arrived for a two week trial. It is truly wonderful to see that if you want you can do things. If you are determined, you can make things happen. Even if you work within a system that is difficult to navigate. Can you imagine how Pádraig will benefit from a device that will help him with communication? He really wants to communicate, take part in discussions, let us know how he feels and what he would like to do, how he would like to dress, what he would like to eat, and whether he is thirsty or not and millions of things more. There is a good chance that he will get the device, not just for three months, like the MOTOMed, but for his exclusive use. There are, even on terribly difficult roads, people who are so wonderful that they make you forget your troubles.

We’re getting ready to go to Boston and cycle on to the Cape. Today, we heard that there will be a journalist from a Cape Cod news outlet there on Monday in Brewster, together with a photographer. And, with a bit of luck, a journalist from a big big Boston newspaper.

And, finally, check out http://www.GoFundMe.com/AnSaolPRoject – two very generous contributions of 50k and 5k were added today and there are dozens of small and large contributions by people, some friends, some from people we never heard of. We will get there. No doubt. We will raise this funding. Just keep spreading the word!

Something extraordinary is happening. It seems that something somewhere has sparked off interest that looks like as if it was converging into a movement. 3538 views last night, 2399 so far today of a blog I started to write in desperation, in a situation of absolute helplessness. Add to this hundreds of tweets, and then emails as well as phone calls – and you can see the beginning of a movement. Similar to The Alice’s Restaurant Anti-Massacree Movement that Arlo Guthrie sang about in his song made famous in Woodstock.

“Or you may be in a similar situation, and if you’re in a situation like
That, there’s only one thing you can do:

Walk into the shrink wherever you are, just walk in, say, “Shrink, . . . you
Can get anything you want at Alice’s Restaurant”, and walk out.

You know, if one person, just one person, does it, they may think he’s
Really sick and they won’t take him.

And if two people do it, in harmony, they may think they’re both faggots and
They won’t take either of them.

And if three people do it! Can you imagine three people walkin’ in, singin’
A bar of “Alice’s Restaurant” and walkin’ out? They may think it’s an
Organization!

And can you imagine fifty people a day? I said FIFTY people a day . . .
Walkin’ in, singin’ a bar of “Alice’s Restaurant” and walkin’ out? Friends,
They may think it’s a MOVEMENT, and that’s what it is: THE ALICE’S
RESTAURANT ANTI-MASSACREE MOVEMENT! . . . and all you gotta do to join is to
Sing it the next time it comes around on the guitar.

With feelin’.

Over the weekend and today in some of the messages, an important question came up and that was: what does Pádraig think about all of this? Does he want to live what doctors have called in conversations with us an ‘intolerable live’? Would he rather be dead? Why make him go through all of this pain when there is no hope of improvement? Some people saying ‘if I was in that situation I would want to terminate my life’.

It is a tricky question. For one, because it is tricky to be able to understand what Pádraig wants. Someone once said that the problem is not, as we always assume, to get the injured to understand us, but for us to understand the injured, often non-verbal. You need time and patience and determination to build up confidence, trust, understanding to communicate.

Pádraig has chosen to live. And it is our duty to provide him with whatever help he requires.

The headline of an article in The Journal tonight.

I can’t add much to what The Journal writes about Pádraig and I am feeling almost more exhausted as I did yesterday, if that was possible.

So tonight, I’ll take it easy and leave the writing to TheJournal.ie…

Thank you for making the An Saol Day possible. Thank you for joining us for the film screening in the morning and the launch of he An Saol Day in the afternoon. Thank you to all who made this day possible. Our guests from Germany and the Irish voluntary sector, as well as several politicians. Wheelchair users, people with neurological conditions. Thank you for Cormac to moderate, for my family to support this event. The film and the following discussion were absolutely mind-blowing, I thought. The room for the launch was so packed people had to stand in the back. There were poets, politician, singers, dancers, survivors of severe brain injury. One who’s had had his accident 26 years ago and had never seen by a neurologist. People attended who moved the romantic weekend with their wife of 25 year to attend. Thank you also to David and Sharon who built the ansaol.ie site together with several really good videos, one just published today…

 

Here are some pictures from Screen 3 ini the Lighthouse Cinema.

Here are pictures from the launch of An Saol…

 

 

 

(I wrote this last night but first posted it to the wrong place…)

Last minute preparations. Collecting our German speakers and supporters from the airport. A stroll and dinner through town. Flights delayed. Everybody making a huge effort to be there tomorrow, to make sure that our voices will be heard. Shouting from the rooftops: enough is enough, no more, no more, no more being considered to be on death row, sent to the nursing homes where people who have lived their lives are waiting for it to end. No more waiting, no more hoping that someone, someone must surely see that here are our young sons and daughters and partners and brothers and sisters with a life ahead of them, a life, a life, a life worth living, a life worth fighting for, not the life they had before, not the life they had planned or imagined, sure who would ever imagine having such a catastrophic accident and injury, but a life nonetheless, a life with good days and bad days, but a life together, a life with food, drink, wind in your hair and rain on your skin, with good smells and bad smells, with really good music, and exciting adventures.Tomorrow will be the first day of the An Saol Project.

It will change Pádraig’s life and that of others like him. It has to. There is no option, no plan B.
See you tomorrow!

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:)