What a great night out!

With friends and Bell X1 on in the Iveagh Park.

10 sec clips – do you recognise the songs?

Tomorrow, Pádraig will go to see Bell X1, one of his favourite bands, in the Iveagh Gardens. Here is a message that Paul Noonan sent Pádraig right after the accident.

When we rang Ticketmaster earlier in the week to get a ticket for Pádraig we asked for companion tickets (which are often given free or at a reduced rate to allow wheelchair users to attend concerts with their carers) we were told that in this case none were available. We had to buy three tickets – which is grand.

I sent an email to Aiken Promotions asking them would they help us with the tickets. And would they ask Paul Noonan if he could do something about those tickets. So far they didn’t reply – which they should have, I think.

Anyhow and anyways, I’m sure it’ll be a great night tomorrow. And I’m sure that Pádraig will really enjoy the music. Fingers crossed it won’t rain.

Today, Pádraig was kept really busy. A physio visit in the morning (one we had ‘organised’), a visit by the HSE dietitian, and a music therapy session (one we had organised) in the afternoon. Loads of activities.

Later in the afternoon, I met with who I hope will be An Saol’s first professional therapist. Which is when we will move from talk to action. And it’s action that is badly needed.

There are days when things are looking good. Today was one of those. Pádraig managed to put all his weight on one leg and relax the other while he was standing in the stand-up bed – when we asked him to do that. First with the left leg. Than with the right leg. It was unbelievable.

The other unbelievable thing that happened today was when his favourite therapist came in to confirm that the HSE had not only approved, but already ordered the computer that will allow Pádraig to communicate with us in an incredibly sophisticated way. It’ll take a bit of ‘setting up’, it’ll take a bit of practice, but – hey, that’ll be nothing in comparison to what he’ll be able to do. And the whole experience can be controlled by a switch, by his eyes, or a combination of both. – I know this might sound a bit strange but I truly believe that if we use this software and machine appropriately, it has the potential to really change his life, because this will allow him not just to select ‘content’, but to produce his own, and to communicate fully with us.

A good day. Finished off by the visit of two of his best friends. What else could you ask for?

Here’s the mother of all health warning. Actually, it’s an “allergen advice” to be precise. I found it in Dunnes Stores, at the fish counter. Do you see it? Whatever you may think, there is an undeniable truth in this ‘advice’.

You might think – well, isn’t this obvious? Hake contains fish!

Up to recently, I would have thought the same. But then I came across experts, professionals, telling me that there is a chance that one might choke when eating; there is a chance of swallowing something the wrong way, to splutter, when drinking; there is a chance of straining a muscle when exercising; and sooo much more. Basically, what they were telling me was: life is dangerous out there.

So what can you do about it?

Stay in bed, breathe through a tracheostomy, get PEG fed, take drugs (of the legal kind)?

We know that life is dangerous and, ultimately, only has the one possible outcome. Only a question of time.

Notwithstanding, we get up every morning. We take on life as if it was one big adventure. We live it to the fullest possible way. We eat, drink, move, go out, have fun – share our love.

Sounds like something really obvious? – Like: “hake-contains-fish” stuff?

Got a phone call this evening from my friend who had the idea to cycle from Hollywood to Napa to raise awareness and funds for An Saol. He had spent some time looking at the route. He now had figured it out, he said.

It’ll be 11 days and 950 km, starting on 04 October, arriving on 14 October.

Looking at it, I’m wondering wether I should exchange my chair for a saddle for the next few months, just to get used to the feeling (considering that I’m still recovering from a bit more than a one-day cycle:).

There’re a few lessons I learned from the Boston to Cape Cod cycle.

Preparation is good. Get people along the route for support. Get media support. Set up meetings with people ahead of time. Saddles are hard.

Like all of us, Pádraig is having good days and bad days. Overall, he is getting better, very slowly. But how much more better could he get with the right support and help.

Today, 16 years ago, my sister died after a short but very tough fight with cancer. For a while, and until the day before she died, I drove her from Tating to Hamburg for radiotherapy. There was never a question of stopping treatment.

I’ve been thinking about this today.

In Pádraig’s case, and that of so many others like him, there was never a question of starting long-term treatment (to speak of). Never mind stopping it. It is deemed to be a waste of precious resources, as we have been told by a consultant (on national Irish radio).

I know there have been individual therapists who have done amazing work. Work that has made a huge difference to Pádraig’s life. But that work went on over a few months. He requires this work to go on for the next years, if not for the rest of his life. And it should not be thanks to an individual’s efforts, it should be the normal way of ‘how it’s done’.

Someone who is dying receives expensive treatment, because that is what you do. Someone who wants to live his young life to the full receives physio visits for assessment, once a month, because this is ‘how it’s done’.

Hard to express how that makes me feel. Especially today.

“You are well aware that it is not numbers or strength that bring the victories in war. No, it is when one side goes against the enemy with the gods’ gift of a stronger morale that their adversaries, as a rule, cannot withstand them.” (Xenophon, The Persian Expedition)

I thought about this tonight – and while I am not sure whether it can be applied to the German team winning against Italy in the European Soccer Championships after the mother of all penalty shootouts, I am sure that this can be applied to the Dreamboaters.

It’s about the Gods’ gift of a stronger morale. Not numbers. Not strength.

Eventually, we will win. Because we are right.

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.