Maybe it’s because I’ve been away for a few days. Maybe it’s because I’m still a bit jet-lagged. Maybe it’s because I’m still exhausted. Maybe it’s because of all this that today I’ve nearly had it. Maybe I’ve nearly had it today because even very high thresholds of patience and understanding can be exhausted.

You might remember the extracts from an official paper being worked on by Irish Government Offices (I referred to them before).

In Ireland there are profound resource and delivery gaps in rehabilitation services when compared with those in other European countries.

Many community residential options for younger, severely disabled people do not meet their unique needs where continuing slow functional recovery is possible over many years after their injury.

Expansion and standardisation of community rehabilitation services is essential to ensure that the benefits of post-acute rehabilitation are sustained and reinforced as patients make progress in their new lives.

While we are trying to address the recognised profound resource and delivery gaps in rehabilitation services, we have to deal with the reality and try to deal with it to help Pádraig.

So – to address the lack of physio (Pádraig now has one visit a *month* by the community physio for an *assessment* – not treatment) we were trying to look for alternatives and were made aware that the HSE do not allow private therapists become involved (ironically, in our case we were given the name of a recommended neuro-physio therapist in our local HSE centre, as no neuro-physio is available in the community); then, the HSE statement was slightly revised telling us that it could only happen under certain conditions.

It’s a well-known fact that a “lack of movement accelerates the degeneration process of the human body” – which is why a German doctor had prescribed a MOTOMed with arm trainer for Pádraig, the insurance company had reviewed and approved it, and we had used it over 8 months with 4 times a week physio sessions. When we had expected a call from the HSE a couple of weeks ago to tell us that this MOTOMed with arm trainer was now on the way – it was, in fact, a call announcing that Pádraig’s three months to use a MOTOMed (without arm trainers) were up and that it would now be collected! We managed to stop this, for the time being. — We were told again that it would be unsafe for Pádraig to use an arm trainer and that Pádraig would not get one. So, we called the distributor and asked for a MOTOMed with arm trainer — just for a trial, to see if there was any way he could use one in order to stem the stiffening of his left arm.

Today, we got a call from the rep to say that he could not deliver a MOTOMed with arm trainer for trial as an HSE representative had told him that Pádraig could not use one.

To be clear
— Pádraig could not even try one;
— the rep had contacted the HSE and received  Pádraig’s private health information;
— the HSE effectively had stopped the rep providing us with a MOTOMed arm trainer for a trial.

Now –
What has happened to Pádraig since he returned to Ireland, if now, after just a few months, he can no longer use exercise equipment he had been using for eight months previously?
How can the HSE decide whether a piece of equipment is no longer suitable without trying it, without trialling it?

We are getting a second opinion.

Because we know that therapists and doctors are not always right. I am thinking about their decision not to remove Pádraig’s tracheostomy – when it turned out to be the correct decision. I am thinking about their decision to PEG-feed Pádraig upon arrival in Ireland – when it turned out that this was not necessary (I had stopped them re-introducing PEG food). I am thinking about the administration of laxative drug against our expressed wishes – which, as it turned out, were not necessary.

My thresholds are exhausted. As am I.

“Here’s one of the most together and exciting groups going – Welcome Focus” that’s how the Dutch group Focus was introduced one evening in 1973 on NBC’s Midnight Special. I had completely forgotten about Focus and their song until I came across them tonight when I was googling Hocus Pocus, which is the name of the song they played that evening live on the show. Really worth listening to. And if you don’t remember that song (or don’t like it, which I’d doubt), you must listen to ‘Sylvia‘ and I promise you to have these “oh – how could I have forgotten that song” revelations. Pure brilliance.

Back to ‘Focus Pocus’. Because I didn’t google this tonight because of the song, but because a good friend earlier this week told me about a game called ‘Focus Pocus‘ he had bought for his kid for 100 bucks and that it was controlled by their mind. Not by buttons, a joystick or a mouse, but electrodes connected to your brain via a small and light headset. – Looks more like a game for kids, but playing a computer game just thinking about what you want to do in the game? How cool ist that?

We spent more time with Pádraig and his new communication device he has on trial. There’s a bit of a learning curve for all of us but, hey, it’s hard even to imagine how this will change his quality of life by really, almost literally, giving him a voice!

Talking about ‘voice’ – Pádraig got a call from his uncle in America. Isn’t it great how he holds the phone, listens, and – it’s hard to see on the picture – how he tried to respond. He made such a big effort that, eventually, he had to cough. It’s great to see this communication working so well. There’s no doubt that Pádraig, one day, will be able to talk again. No doubt.

Arrived safely back in Dublin this morning, assembled the bike (with the help of Pádraig’s friend) and was about to cycle home (in the rain) when I got a message that Pat was going to pick me (and the bike) up from the airport. The relief! Not sure, whether my back side would have cooperated on another cycle, even if it had been only a short one:)

It was great to see Pádraig again, to be back home. I had missed him and the rest of the family.

He is still trialling the gadget that will help him to communicate much better than he can now. One part of it works with grids, showing different objects and reading out their names. Pádraig can then select which one of the objects shown he prefers.

And today, on a grid showing different drinks, he picked banana milk – which only I prepare in our house. I’m sure he really does like banana milk, but I could not have wished for a nicer sign of welcome by Pádraig!

I’ll be going to bed early tonight. Can hardly keep my eyes open.

Support the Great American Cycle I

From Boston to Brewster via Hyannis
26-27 June 2016
Arriving in Brewster (near Bramble Inn) June 27, 10am
www.ansaol.ie/donate

This is Roy, a gentleman whose son suffered a brain injury some years ago. In 1992, together with other parents, they set up CHIP’s House, a home of our own which provides “a safe, friendly home for people with head injuries”. In 1994, they opened up their first house, they now have two. About 20 survivors of head injuries live here and are being assisted by 48 staff. Their parents, families, and friends set up the house because they did not want their loved ones to be looked after in nursing homes.

Sounds familiar?

I visited Roy in CHIP’s in Centerville today, just a few miles outside of Hyannis, and we agreed to stay in touch and help each other out.

Today, we also got amazing media coverage on the front page of the Cape Cod Times (continued on page 4) and on the front page of the Boston Globe Metro Section.

Sitting on the bus to Boston, in a terrible traffic jam. Will still have to go back to the hostel to collect our bags, go to a couple of pubs where we left collection boxes and get the bike wrapped up in a bike shop (fingers crossed) before going to the airport.

Can’t wait to get back an tell Pádraig about this trip and pass on many regards and best wishes from all of his friends in Boston and the Cape. Next time, he’ll come with us.

Thank you to all who supported us along the way. Keep spreading the word. Remember: this was just a short little trial. The real, second part, of the Great American Cycle will start in Hollywood on 04 October and will arrive in Napa on 14 October:)

In the meantime, please help us raising funds for the An Saol Project. We need to raise €1.5m – and we’ll be getting there!

Support the Great American Cycle I

From Boston to Brewster via Hyannis
26-27 June 2016
Arriving in Brewster (near Bramble Inn) June 27, 10am
www.ansaol.ie/donate

There is no escaping – this is it.

One day more!
Another day, another destiny.

No, it’s not about whether Ireland will beat France – I think that’s settled.

It’s whether I will fit into this fancy (funny?) professional racing suit that I got from my sponsors Marin Bikes. And whether, once I’m in it, it’ll hold until we’ll get to the Cape. That is, if we’ll ever get there. – Do you get my mindset? Yes, I’m all fired up, I feel strong and motivated, I’m completely focussed. I know I can do this. I can – can’t I?

You know this is part one of the Great American Cycle (the second will leave Hollywood for Napa on 01 October 2016) in support of the An Saol Project (www.ansaol.ie) and it is gathering some momentum. There are more people signing up as we speak – some will be joining us on Monday morning at 8am for the short ride from Cape Cod Hospital to Main Street, Brewster (close to the Bramble Inn). But there’re also a few who, it looks like, will be joining us tomorrow morning at 6am at the JFK Presidential Libray to go with us all the way.

I’ve been trying to get some rest though, I must admit, it has been challenging. The room here looks and feels a bit like a prison cell – only without the toilet. The beds are exactly the way they look in the Green Mile and, worse, they feel like it too. And right underneath my window must be the headquarters of the South Boston Fire Brigade. We all know that everything in America is a bit bigger – let me tell you, their fire engines are humongous. They must have 10l engines and their horns are modelled on a dinosaur attack in Jurassic Park.

The outside sitting area compensates for all that: it’s really nice, sheltered, and comfortable.

It’s still early still. Cian just went off to the Cape to gather some support. I’ll go on a short run now and give the bike a spin as well, before taking a nap. In the hope there will be less fires in South Boston during the day. And less people returning from parties:)

Here is something you can do: please tweet about the cycle and the Summer Session in the PAV in TCD tomorrow, supporting the cycle. Share the events and pictures on your Facebook pages. Tell everybody about our efforts to raise €1.5m for the An Saol Project and let them know how urgent and necessary it is to support our efforts. We will make this. There is no doubt in my mind. And, with your help, we’ll make it over the coming months, not years or decades. The coming months!

Above all, tell your friends and colleagues about the new www.ansaol.ie and the video on the landing page explaining what we are fundraising for. Go to www.ansaol.ie/donate !

This morning, Cian and I went to the Office of the Attorney General where we met the Chief of the Victim Witness Services Division and the Deputy Chief of the Policy & Government Division. The Deputy Attorney General and the Chief of the Criminal Bureau sent their apologies as they were out of town.

We gave a brief account of the accident, our meeting with the Brewster Police Department and their investigation into the accident, and summarised the content of the letters we had written last year and, again, this year.

We were told that the letter had only reached the desk of the Deputy Attorney General a few days ago. We were given an apology for the unacceptable delay in dealing with our letters. The good news is that the letter will now be dealt with directly by the chief of the Criminal Division. When asked when we could expect a decision on whether a thorough review of the police investigation would be conducted, we were told that this could take approximately one month. We were also told to expect a phone call from the Criminal Division.

When I asked whether a written submission would usually be acknowledged in writing and whether a decision on a written request would be communicated in writing, we were told that this would usually happen via a telephone call.

So what is the net outcome of the meeting?

The fact that the meeting took place by itself was good as it put the issue back on the agenda (if it ever had been on it, that is). The representatives we met and talked to, unfortunately are not the ones who would review the investigation, nor could they give us any opinion on how they felt it was conducted. While their apologies were very much appreciated and certainly very sincere, we will have to wait and see whether anything concrete will come out of it. – I am still so shocked about the way Pádraig’s accident was investigated. Something like this cannot allowed to happen again. This was, after all, and as he acknowledged, the worst accident that the Chief of Police had had to deal with in his career. It merited more attention.

Haven’t got any news from the Áras and Pádraig’s visit there yet – BUT a phone call from the Taoiseach’s office with an apology from the Taoiseach as he could not attend last Saturday’s launch of the An Saol Project. I asked whether I could see the Taoiseach and explain to him what An Saol is all about, at a day and time of his convenience. – I’m now on the waiting list for a meeting:)

Still extremely tired – but will see a couple of Boston-based friends this evening in Harvard Square.

If you were interested – here is the full letter I hope to discuss with the Office of the Attorney General in an hour’s time.

160613 Letter AG and GOV f2

Just click on the link or the image above to read to full letter we wrote on 13 June 2016, together with previous letters and a list of concerns we have in relation to the investigation into the accident by Brewster Police Department.