Why something that seems ‘bad’ can, in fact, be brilliant news.

The Barthel Index is a scale used to measure performance in activities of daily living (ADL). Each performance is rated with a given number of points. It uses ten variables describing ADL and mobility. A higher number is “better”.

The ten variables addressed in the Barthel scale are:

1. Presence or absence of fecal incontinence
2. Presence or absence of urinary incontinence
3. Help needed with grooming
4. Help needed with toilet use
5. Help needed with feeding
6. Help needed with transfers (e.g. from chair to bed)
7. Help needed with walking
8. Help needed with dressing
9. Help needed with climbing stairs
10. Help needed with bathing

You don’t have to be an expert to realise that Pádraig needs help with all of the above. And that he will score low using this index. Yet, it has recently been used to describe how he is doing.

And here comes the surprise: even the very idea of using the Barthel Index to capture Pádraig’s condition would have been completely out of the question not that long ago and has never been done. Initially, the matters to be addressed had nothing got to do with ‘activities of daily living’, they were much more serious. So this is a first.

Because earlier, what doctors used to describe his condition was the Glasgow Coma Scale (GCS). And using this scale, he scored – initially – the lowest possible score, working his way up, slowly.

The lesson: things that initially may sound negative can highlight brilliant developments if put into proper context!

Two months ago, I signed a service agreement with the HSE, following more than a year of negotiation and work, having received the official go-ahead from both the Minister of Health, Simon Harris, and the HSE. I have been trying to find out when the HSE will sign it or whether there is anything that is delaying the start. The answer to my enquiries was that it hadn’t been signed yet. – With the best will in the world, I fail to understand this. Do you?

I have decided to work on a monthly programme with Pádraig, with monthly goals. And focus on particular aspects of his rehabilitation and recovery, like developing particular motor skills or muscle groups.

And, I will try to stand Pádraig up every day not in his bed but in the standing frame. A bit more challenging. But challenges are there to be overcome. And they will be. And so will he and ourselves.

We shall overcome. One day:)

You know this game where two players throw a ball at each other with a third player between them trying to catch it? It’s called ‘piggy in the middle’ and that’s what we played this morning in München’s Central Station with the lift. We were between to floors and each time the lift stopped at our level it was either bringing some stuff up or bringing some stuff down. It was never empty. So I run up the stairs and brought the lift down where Pádraig was waiting for an empty lift to arrive. It would all have been fun, if there hadn’t been a snowstorm in -4oC and if we hadn’t just got up at what felt like the middle of the night to catch a train to the airport.

Once we had literally highjacked that lift from the various shopkeepers and cleaners transporting their ‘stuff’ up and down, we made it to the platform where we discovered that this line was not just going to the airport but also to Unterföhrung where thousands of employees work for Deutsche Bahn. Meaning: it was packed. Really packed.

In the end we made it, tired but happy to be back after this long weekend adventure.

There is stuff you’d never think of that becomes routine travelling with Pádraig, like beds that are way too short, beds that are so low that transfer from bed to chair becomes very tricky (there are, of course, no lifters), doors are too narrow, lifts to small, some people are extremely helpful, some are utterly obnoxious.

Does that sound like life to you?

We didn’t expect to pass through “Kissing” this morning. Though it was a nice surprise:) We learned more about “Kissing” (not better time than the present:), as well as about the German train system and ‘mobility’. For example, that the wheelchair space on trains should be kept clear for wheelchair users so that passengers can board and get off trains more swiftly and don’t delay trains… – that’s what the sign in German says:)

And that when trains are delayed, the announcement doesn’t apologise for a delay, well it’s not really a ‘delay’ anymore, the concept doesn’t exist in German anyways, but it says that “this train today will run 5 minutes later than the scheduled time” – check it out on the short video below:) No ‘delay’ and no need to apologise. They must have spent millions on this really smart marketing-driven twist on ‘delays’.

We went to the Therapy Centre in Burgau, an hour and a half away from Munich by train – though in our case it took almost an hour longer, unexpectedly, because we learned during the journey that our train would arrive on platform 2 and that there were only stairs off that platform which we could not have navigated with Pádraig. So we had to travel on a few stations further, Günzburg, which has lifts, wait for the train back and get off in Burgay, this time on platform 1, which is right beside the exit from the train station. Good job we had left a ‘bonus’ hour for the trip, so we didn’t arrive late for our appointment.

We went to Burgau for a neurological and rehab assessment. That all went extremely well, with Pádraig taking everybody by surprise, pushing his wheelchair forward almost (maybe 50%) by himself! A pretty good job! Completely unexpected and un-“rehearsed”. And another first!

Tonight, I met an old friend. For a few hours, I felt a whiff of the carefree me from a long time ago. We laughed a lot as we updated each other on our lives. Not that either of us had much to laugh about, if I think about it. But it was good to laugh. And to pretend I could be someone who I once was…

Tomorrow, well, it’s back off to Dublin in the early hours!

When we were getting the tram back from the German Museum to the Central Station where our hotel is, we were looking for the display showing the time we would have to wait for the next trams. There weren’t any. Instead, they had a printed timetable displayed showing the exact arrival of the tram. And, again, of course, the tram arrived exactly at the time shown in the time table for this stop. No need for any digital displays.

The Museum is mind-blowingly nerdy. The level of detail in each of the sections is incredible. And it’s not about any-things it the ‘things’ themselves. So – it’s not about the famous Enigma encoding machine, they have a few of the 100,000 machines used by the Germans during the war (and de-coded by a team around Alan Turing) on display, the originals. They have an Apple II, the first Mac, the first Apple laptop, the first DOS IBM PCs (I have one of those in the attic, I noticed with surprise:), the first analog computers and many, many more historic machines you otherwise only find in books. Informatics is just one section. They do the same for weather forecasts, for weights and weighing machines, and other weird and wonderful stuff.

In the morning, we had decided to walk with Pádraig to the Isar river where the museum is located. When we stepped out on the footpath it was so cold that we decided to step back in to the next Brauhaus to have what we would have called Sunday Brunch, the German called it dinner. Back out on the footpath to the famous Marienplatz, freezing cold feet, nose and hand, back into Cafe Rischart where we had cake that was almost too nice to look at for it to be eaten. Rischart started their business in 1883 and they used that time to really get it all right.

The one thing Pádraig did not enjoy was the demo session in the Museum where they showed how high voltage electricity works. Saying that there were some sparks flying would be an understatement. But otherwise, he really enjoyed the day, the walks, the meals, a bit of Bavarian beer, the people walking by, the cold air, the tram ride…

We’ll have to get up early tomorrow to catch a train to Burgau.

PS: I’ve been thinking about the business of encoding messages. Why they used the Enigma. How they managed to break the unbreakable code. About what happened to the man and his team who broke the code.

Just arrived in Germany’s secret capital. As always, not all things went as they should have. There was a last minute gate change and instead of docking on a bridge, the plane parked in the middle of the airfield. They wanted to carry Pádraig down the stairs of the plane because it was too late for lifter vehicles or because there was light snowfall or … The police had closed and we could not get into my fatherland until they reopened the border crossing for us. Once we were in, we spotted our two lonely bags in this massive now empty hall, luckily still around.

45 minutes on the S-Bahn. Looking for a lift on the wrong side of the platform, jumping through a train to get to the other side, locating the lift, bringing us out of the station.

When we arrived at the hotel, the lift was too small and there was almost no room to squeeze the wheelchair into the room. The area, just beside Central Station, is interesting, to put it mildly. It’s snowing outside.

The important thing is: we made it. And even more importantly: Pádraig is having a ball travelling and camping out in cheap hotels.

A wise person asked me the other day: “What would you do if you rang your mobile phone provider and would not get the service you expected?” – “I would switch”, was my answer. Would you do the same? My guess is: you would.

This is why companies spend a fortune trying to find out what it is that their customers are looking for. Customer satisfaction is what they need to achieve to grow their business. It’s bad news for them when customers start to complain and the word gets around that this particular company doesn’t deliver what they promise.

I am sure you can think of examples: remember the Galaxy Note 7 literally catching fire? Remember Kodak cameras or “New Coke”? Kodak cameras are a thing of the past and customers preferred the ‘old’ coke… you’ll probably have your own preferred examples.

Now, how does that compare to a system that tells their customers to be thankful for what they are getting for their hard-earned euro, produce more appalling statistics every year, don’t admit to any mistake made until they settle in the highest courts, and literally put their customers in what their own employees call ‘unsafe’ environments?

You know, I was thinking that such a system should be sidelined, ignored, substituted, and put out of business. Not fought. After all, that would be a waste of perfectly good and very necessary energy. Complaining, fighting, shouting is, generally, not good for you. Building, sharing, caring – much better!

Anyhow…

Pádraig got this new table for his wheelchair with a build in button. Here is what he can do with it.

It’s no longer ‘just’ his left foot that is operating a switch that he can use to answer questions, it’s also his hands. Brilliant progress that many people didn’t expect.

He has also started to make more use of the bathroom, not just for showers, but also for combing his hair, watching himself in the mirror as he is doing it. Check out the super-cool comb.

It’s easy to overlook the complexity of what is going on here. He holds the comb, moves it with his hand, lifts up his arm and combs his hair (with help), while watching what is going on in the mirror. He is doing something himself that so far someone else has been doing not just for him but ‘on’ him. The level of autonomy and of taking back control might seem minuscule but is, in reality, enormous. Not least because this is just one of the first steps. And you know what happens when you take the first steps – usually they are just the beginning of a long and wonderful journey.

This is what it is all about: moving forward, revelling in what is possible, assisting and supporting, caring, motivating, discovering, enjoying, being on a wonderful journey.

It’s definitely not about fighting, arguing about who is right and who is wrong, being depressed because life is so shitty and no-one cares, getting constantly angry because the system has abandoned us, non-stop shouting, complaining and roaring about all the injustices. – Of course, I do all that and I do feel all that myself (far too often). There isn’t a day I don’t feel like some of these emotions. I wouldn’t be human if I didn’t. But I also know that ‘that’ stuff doesn’t get me anywhere. I cannot change any system, I cannot change people who have closed their eyes in the face of injustice and neglect. But I can try to change and try to be an example – and, even if I will, at times, fail, hopefully can make people think. And change. Because they want to.

Become Dreamboaters:)

Too tired to write, talk to yo tomorrow!

Some great news today about the Dublin-based offices of one of the world’s largest banks (and companies) selecting the An Saol Foundation, completely out of the blue to us, as their charity of the year. Wells Fargo, the company that operated the famous Pony Express, will support An Saol in their work allowing survivors of very severe acquired brain injuries to live their lives with dignity and respect. – This is all down to one person who made it happen, who did not give up when she explained to her colleagues that this is the right thing to do!

Their job ads have changed since their early days, I am sure, and so must have the risks involved for their employees. Although – banking has never been risk-free.

This is a FIRST for An Saol and, at least in my mind, a huge recognition by a huge company and their Dublin office of the importance of the work of An Saol for sABI survivors, their families, and society in general.

Thank you, Wells Fargo!

Today, I also heard for the first time of Neuro-Developmental Treatment (NDT), a relatively new approach to treating clients with neuromuscular dysfunction, including that caused by acquired and traumatic brain injuries. Apparently, there are therapists in some hospitals in the country who are training in NDT which is based on the famous Bobath approach but which goes beyond Bobath’s relatively ‘cautious’ approach. Certainly something I’d like to learn more about…

As Patrick’s Day is approaching, we are slowly getting ready for another very brief trip to Germany to visit the Munich and the Therapy Centre in nearby Burgau with Pádraig to see one of their consultants and therapy leads.

usus est rerum omnium magister Julius Caesar is reported of having said once. His wisdom, that experience is the teacher of all things, didn’t prevent him from being killed (I guess you make that ‘experience’ only once in a lifetime) but I think there is a lot of truth in these words when applied to most circumstances.

I’ve been on a ‘career break’ for the past half year or so which means that, while I have not given up my job at the University of Limerick, I am not receiving a salary.

A career break may be allowed for most purposes including further education, domestic responsibilities, travel abroad, employment abroad, starting a business.

So yesterday I came across this article in The Irish Times reporting about a vacancy in the state service that attracts a salary of up to €250k plus incentives. The job in question is that of the Garda Commissioner, Ireland’s head of police. (The last one was forced to resign amidst tons of scandals.) But what really attracted my attention was that it said:

‘No policing experience necessary’

While that offer was tempting, the 250k salary would go some way to address some of the issues we have to deal with, it made me wonder… I decided that I wouldn’t apply and give this opportunity a miss…

Pádraig had an incredibly intense day: getting out to his grand aunt’s funeral really early, mass, graveyard, get together and lunch. We spent time talking about her, our memories of long walks with her and her dogs, her love of Irish, her genuine interest in the lives of all the family, her kindness. We will miss her – the likes of her will never be with us again.

In the afternoon Pádraig had one of the best swimming sessions he has had. He topped it all up with another long cycle in 2nd gear. He must be so proud to be able to do all this. And better every day. With the perseverance and experience of an athlete, experience you don’t get for nothing…!