Cash

“First make up your mind that this is what you want to do. Then keep trying. Because it could be the 97th time that you finally get a break.”

This was Johnny Cash’s answer in a replay of an interview on Irish radio when he was asked what would be his advice to an aspiring musician.

There’s another man across the big pond today who must be thinking along similar lines. Yesterday, he was third time lucky. Because he kept trying.

Much younger than either of the two was Kevin Barry, when he died exactly 100 years ago. Being only 18 years old he was hanged by the British during the Irish War of Independence. Last week, Pádraig went up to see his grave in Glasnevin. It was covered with flowers. He too had made up his mind and was not ever going to give up. He was killed but succeeded in what he wanted to achieve. And there is a rare Leonard Cohen rendition of the Kevin Barry song.

My phone crashed as I was taking pictures. The one above is the only one that wasn’t deleted.

Pádraig is enjoying his twice weekly visits to the hyperbaric chamber. He is crystal clear that it helps him to sharpen his brain and to develop his lungs and breathing.

Overall, and slowly, we are getting back towards a sustainable routine. During the week it’s like going to work: getting up at the same time, getting ready in time to leave, working hard in the morning, taking it a bit easier in the afternoon. It all still requires some fine tuning, but it’s all moving in the right direction.

It is amazing how important routine and social contacts are. Pádraig is happy that he is getting out of the house, getting good exercise, and getting to see different people (other than just us:) every day.

For some letter I had to write during the week, I went through papers and pictures I took during the time Pádraig was in hospital. The difference between him being looked after by others and living with us is breathtaking.

There is an article in The Irish Times from 20 May 2020, which I only saw last week: Nursing homes must be made a thing of the past. Really worth reading. Here are a few important quotes from that article:

On Friday May 8th, Leo Varadkar reflected aloud on the Late Late Show on whether nursing homes are a wise investment for the future. The Taoiseach is one of the first political leaders in the world with the political imagination to think beyond orthodox arrangements.

Living in these places makes it intrinsically difficult to physically distance oneself. Protecting the service personnel attached to them is also a major challenge. Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen.

And so, the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.

He speculated that we may have to think about elder care along the lines of disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities.

The official ambition since 2011 has been to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.

Well, as far as I know, Ireland is about to report for the first time on its implementation of the UN’s Convention on the Rights of Persons with Disabilities (CRPD) it ratified in 2018. There’s an opportunity for the politicians to highlight the disaster of the around 1,300 young people ‘held’ in nursing homes, many in breech of their human rights.

Pádraig has made up his mind. He will not give up. He will keep trying. One day will be his lucky day.

PS: Johnny Cash recorded many great songs. One of my favourites is the duet with Dylan in Girl from the North Country.

Harmonica

Harmonica: And Frank?
Snaky: Frank sent us.
Harmonica: Did you bring a horse for me?
Snaky: [Chuckling] It looks like we’re… it looks like we’re shy of one horse!
Harmonica: You brought two too many.

They were full of confidence, laughing at that one lonely Harmonica. But now, they begin to look worried. – As it is to be expected, a few seconds later, they are dead.

It’s the opening dialogue of Once upon a Time in the West. And it only happens after a seven minute long opening sequence with no words spoken at all. Do dialogues come any better than this?

The music (by Ennio Morricone) and the “shooting” of the 1968 movie (by director Sergio Leone) are as good if not better than the acting and the story line of this “spaghetti western”. It’s full of great one-liners, some completely non-PC nowadays, in a movie that follows Harmonica on his mission. He is a man of few words. He has focus. He has unfinished business. And a harmonica.

While Frank (and the viewers) are getting hints during the movie, we (and Frank) only learn at the end why Harmonica came to Flagstaff and after Frank. Eventually, Harmonica shoots Frank and stuffs his harmonica into the dying Frank’s mouth as a reminder of what he had done to him and his brother years earlier. And then? He rides into the setting sun. He’s done.

Leone liked to tell the story of a cinema in Paris where the film ran uninterrupted for two years. When he visited this theater, he was surrounded by fans who wanted his autograph, as well as the projectionist, who was less than enthusiastic. Leone claimed the projectionist told him “I kill you! The same movie over and over again for two years! And it’s so SLOW!” (from Wikipedia)


We had a few highlights and amazing “firsts” last week.

For the first time ever here, someone other than myself did a manual transfer of Pádraig (from therapy bench / plinth to wheelchair). It was absolutely brilliant. For me, it was an icebreaker.

And that was just the beginning.

We figured out how Pádraig could use a table standing up.

He won an arm wrestling competition against a formidable opponent.
(This is a snap shot of the arm of the opponent:)

He rocked like a waggon wheel and a spaceman at the turning point.


Last night was Halloween, the time when the dead become alive and go on scary missions. It’s scary, but it’s also great fun.

We’re moving slow. Maybe like dead men walking. Or like Harmonica. Maybe we’re scaring people at times. But we have focus and determination and fun. Unfinished business. And we won’t rest until that is done. One day, someone will look back and tell the story. “Once upon a time…”.

GratefulDead

This week, Pádraig received the most beautiful bunch of flowers.
Ripple in still water.

He is moving and controlling his legs again much better, even the right leg,
lifting them up to help
when we are putting the footrests on his wheelchair.
They are back in action.
Following the problems he had with that right leg over the past year and a half,
this is a big deal.
A very big, a very beautiful deal.

 

He is (again) cycling the MotoMed himself without the engine kicking in,
keeping a really good balance between the left and the right leg.
Unthinkable for many months.

.

 

Pádraig is alive and kicking and tremendously enjoying his regular exercise here in the house and in An Saol’s Neuro Rehab Centre, inspired by him.
This, too, is a big, a very beautiful deal.


Pádraig has been assumed to be close to death, to have been better off dead, to be dead.

And that is the answer to some of my most burning questions: why is there no place, role or provision for him, and others like him, in society? Why does society not offer him, and others like him, the same respect and opportunities as others to live their lives? Why are concepts such as equality, integration, and participation not applied to him, and others like him?

“Dead people receive more flowers than the living ones because regret is stronger than gratitude”, Anne Frank wrote many years ago.

I don’t know anybody who is more grateful for their life than Pádraig. So am I. Tremendously grateful for his life. And so is the HSE. They sent him the most beautiful bunch of flowers this past week, thanking him for his participation in their video promoting the 2015 Assisted Decision Making (Capacity) Act and his contribution to their recent event launching the video.

Here is the deal.

People and society cannot continue to look at Pádraig, and others like him, as if they were dead, almost dead, that they would be better off dead, that they should be dead, even Grateful Dead.

We need to start sending more flowers to the living. Create ripples in still water.

We need to be with the living. 100%.

Distance

From a Distance” is one of the most beautiful songs. Nancy Griffith sings it with one of the most beautiful voices. The world looks blue and green, there is harmony, there is a voice of hope and peace, and God is watching us from a distance.

Distance cancels out the small, little things. The fighting, the differences, the guns, the bombs, and the disease.

Distance is good because it gives us the bigger picture. We don’t loose the wood for the trees. Distance helps me to find a way out when I’m stuck, to find a new direction.

There was a time before the summer when I didn’t know what to do or where to go. There was the summer of distance, distance in many different ways. And now there is the autumn of “going forward”, even in difficult circumstances, but going forward, with confidence and determination.

We now know that there are steps to be taken, “going forward”. (Oh, how I hate that phrase when politicians use it as an empty shell!)

Pádraig has been “going forward” every day, leading the way.

 

“Distance” is no longer what it used to be. It’s no longer a choice. It’s necessary for survival. When you don’t keep it, it can make you sick and can kill you. But when you have to keep it unnecessarily, “just” because of your circumstances, it can make life, at a minimum, quite miserable.

It has been the official ambition of the Irish Government for the past nine years, since 2011, “to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.” (Irish Times, 20 May 2020)

Yet, today, more than 1,300 young people with a disability are still looked after in a nursing home. Because of the pandemic, they are now locked away with no visitors and no direct contact allowed.

In addition, one sad reality during the pandemic has been that “a high proportion of deaths in Ireland (and indeed right around the world) have taken place in care homes. Living in these places makes it intrinsically difficult to physically distance oneself. (…) Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen”, say the authors, Gerard Quinn and Ann Campbell, in the same article.

And so, they say, “the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.”

The Lady in Red must have spent hours getting ready for her visitors. Because she could. And wanted to look her best. She looks amazing. Her visitors more than appreciate her meticulous preparations. They smile, they wave, they take pictures.

She isn’t in heaven and she isn’t getting ready for Dancing Cheek to Cheek with Fred Astaire nor anyone else. She is in a nursing home, greeting her relatives from a distance.

Despite the appearance, this ain’t a happy picture. From neither side of the window. The smiles, the camera, the waves, the distance, are hiding the details of the misery. The distance here is imposed, it’s not helpful. The lady in red, as all the young people in nursing home, should be able to hug their family, to feel the warmth of their skin, to smell their breadth, to touch their hands – not the bold window.

How much longer will we allow the violation of the human rights of young people with brain injuries? How much longer will we allow these young people to be exposed to “the disaster waiting to happen” to them during this pandemic? How much longer will these young people be allowed to be seen only “from a distance”, through a glass window, by their families with whom they should be living in one household, safe, and “from a distance” from the pandemic brought into closely congregated settings?

How much longer will the government continue to fund these human right abuses instead of viable, appropriate, long-term alternatives?

Sometimes I think God could look a little closer, look not just look from a distance, to see the grey, hear the dissonance, and feel the desperation.

GimmeSomeTruth

John Lennon would have been 80 years old last Friday.

Had he not been shot dead 40 years ago.

Imagine.

Gimme some truth

I’m sick and tired of hearing things
From uptight, short-sighted, narrow-minded hypocritics

All I want is the truth
Just give me some truth

I’ve had enough of reading things
By neurotic, psychotic, pig-headed politicians

All I want is the truth
Just give me some truth

Which year did he write this song again???

Sounds to me like as if there’d be a good chance he’d be shot a second time one of these days had he survived the first attempt to kill him and had he continued to sing that kind of song.

This past week, Pádraig was back on his feet and back on the Lokomat.

I keep imagining. – Could Pádraig have been spared more than a year of deeply troubled nights and lack of sleep and what must have been at times excruciating pain?

A ‘good night’ before the intervention he went for recently meant he had slept continuously for a few hours, maybe five or six, and that was a rare occurrence. Most nights were not ‘good nights’. During those nights he slept maybe one or two hours, woke up for an hour or two, moved around in the bed in pain and went back to sleep for another one or two hours, because of sheer exhaustion.

We had to protect the sides of his bed with thick foam covers and close the gaps between the mattress and the bed side protectors with specially made foam covers to prevent injuries.

It must have been close to unbearable for Pádraig to be unable to get a good night’s sleep. It was extremely difficult for anybody staying with him for a night to see him struggling so hard, being unable to rest, pulling up his legs, especially his right leg, almost up to his chin, twisting his legs around each other, over time being unable to stretch out his right leg anymore because these movements had caused his right hip to sublux, pushing the head of the right femur (partially) out of the socket.

We asked everybody we could think of. Described what was happening.

Eventually, we decided that we had to go on a long journey to get Pádraig the help he so desperately needed.

Following his discharge from the rehab hospital in Burgau, we have been staying with Pádraig now for more than two weeks during the nights. He goes to bed in the evening. We help him to turn around twice or three times during the night. He wakes up in the morning. After a really good night of at least eight hours, and often 10 hours or more of sleep.

The difference between ‘before and after’ could not be bigger.

I keep imagining. What would have happened to Pádraig had we not taken him to see the specialists in Burgau and Munich, had we allowed his condition to gradually deteriorate? Had he not eventually received the necessary help by people who cared, and for whom Pádraig has the same right to physical integrity, to his health, as you and I? Who treated him with ‘dignity and respect’? Who took a ‘patient centred’ approach? Who did not discriminate because of an existing condition?

Is not knowing as bad as not acting despite the knowledge?

I’m sick and tired of hearing things
From uptight, short-sighted, narrow-minded hypocritics

John Lennon sang nearly 50 years ago. Maybe Heraclitus of Ephesus, the Ancient Greek, pre-Socratic Ionian philosopher, got it wrong when he found: “Panta rhei” – everything flows and everything changes?

It’s 40 years ago this month that I met my soul mate in the Calle Rúa Mayor in Salamanca. Yesterday, 35 years ago, we got married. One day, we’ll go back there. Some people will always have Paris. We’ll always have Salamanca.

Flotus

Sounds like ‘something that floats’. Doesn’t it? And the word came to my mind when I thought of the boat we’re on tonight.

But it means something entirely different. As I learned yesterday, when she was diagnosed with the China Virus, together with her husband.

Anyways… in a land far, far away and

more than 40 years ago someone introduced to and played the classic “On the road again” for me (without the harmonica and guitar solos:), somewhere in Franco’s Spain. He was the real deal: flowers in his hair and a VW Minibus to move around. The type of person who would have sang “Alice’s Restaurant” had he not been German but American. And if we’d have had more time.

I was impressed anyways. It was my first trip abroad on my own and I had met hippies only in The Drifters by James A. Michener.

Even though he used just two chords and just did the chorus it was super cool.

Tonight we’re on the boat again.

Four months later. A few t-shirts and a pair of shorts did the trick. Like that summer in Spain. And like during that summer in Spain, all turned out well, even though it wasn’t always easy. And as at the end of that trip down South that year, after all these months I am happy that it is over.

Last week, in Pforzheim, Pádraig was back in the Lokomat. And he really liked it.

 

We practised and tried out different ‘settings’ for him, to support his thorax from the front, protect his back with a towel, his legs with a layer of neoprene, and keeping his head up with a strap.

By the end of the week, I felt comfortable that, with some help, I could get Pádraig in and out of the Lokomat in a reasonable time and allowing him to have the exercise he so urgently needs.

We had a few sessions walking with Pádraig the width and length of the therapy room in a much more hands-on way as well, without the help of any sophisticated equipment. And there was a smile on Pádraig’s face – so different from the pain he felt just a few months ago when we were in Pforzheim thinking his hip and leg could get fixed with therapy.

During our week in Pforzheim we talked to some families about Pádraig’s procedure. Guess what. Almost all of the families we talked to, three of them, had a member who had undergone a similar procedure. Some more than 10 years ago. Not necessarily all involving hips but all involving a similar procedure. How is it that if this type of procedure is so common, at least in Germany, as it seems to be that we had never heard of it although we asked every specialist, doctor, therapist and people in the know? The world is full of mysteries.

Apart from hard work, we also had some fun. COVID limited fun, slightly out of season. It looked exactly like a Christmas market, down in Pforzheim city centre. Even the weather had adapted. What was missing was the crowds.

The summer is definitely over. Bring along Christmas.

Really?

Ach so

When I hear gallop, I think horse – was what Angela Merkel could have answered.

But: “I see”, is what she said, in a much better, short and dry and poignant way, when a reporter asked her what she thought about the assertion of the former US ambassador to Germany, Grenell, that President Trump had charmed (verzaubert) her.

Yesterday, Pádraig was discharged from Burgau. He left in his wheelchair as he did two years ago when he was here last. Words are not enough to describe our gratitude to the people running the Therapy Centre and the people working there. They had admitted Pádraig with open arms and allowed us to look after him while he was there – all under quite difficult and unique circumstances.

Before Pádraig had the operation in Munich, they had taken the time, at very short notice, to discuss with us the different options for treatment and advised us what they thought was the best choice. Based on decades of experience. When they reached the same conclusions as they had in Pforzheim we knew what way to go to help Pádraig.

The time Pádraig spent in Burgau after his operation was exactly what he needed to support his recovery. The way Pádraig (and us) were treated in Burgau was exemplary.  The outcome was the best outcome we could have hoped for.

In Burgau, as in Pforzheim (where they also had recommended to see the neuro-orthopaedic surgeon Dr. Poschmann in Munich), Pádraig was treated like you and I. He urgently needed help and they (as in Pforzheim) did their very best to assess him, to consider the available options and then helped to organise what was, in their and our and Pádraig’s opinion, the best available option. With all the dignity and respect, with all the patient-centred care you and I had deserved as a human being – and Pádraig deserved, in their eyes, equally, without any doubt or hesitation. The type of medical care that so many talk and write about but too few practice.

Today, we’re back from where we started, in Pforzheim, where yesterday we enjoyed a great welcome breakfast in great company. Having recovered and put back on the road in Burgau by some of Germany’s best doctors and therapists in the field, Pádraig will be back on his feet for a week here in Pforzheim, before heading to the Rotterdam ferry next Saturday.

Ach so. Pure brilliance. And so super cool. Not an attribute you’d usually associate with the German chancellor. (The tweet incorrectly quotes Grenell saying “entzaubert” instead of “verzaubert” which is what the journalist asked in the press conference.)

Last Thursday, with huge credit to be given to the HSE team trying very hard to promote the 2015 Decision Making (Capacity) Act, an explainer video featuring many ‘ordinary’ people who are going to be affected by the act, including Pádraig, was launched following many months of hard work. It was a great occasion joined online by more than 700 people. It turned out, a bit to my surprise, that it was aimed at healthcare professionals and not at the general public. And then, there was a bit of politics and an appeal to press politicians to finally, finally commence the act which will, finally, finally bring Ireland more in line with the UN’s Convention on the Rights of People with Disabilities, CRPD.

Ach so. I see.

The 2015 Assisted Decision Making (Capacity) act, we heard during the HSE online launch of the video promoting the act, will be commenced, if all goes according to plan (!), in 2022 – seven years after it was passed by the Dáil, the Irish Parliament. Seven years. Mein Gott.

 

(Pádraig’s, Pat’s and my contribution is right at the end of Thursday’s launch video recording. When I checked, it looked like there was a problem with the video recording – we could be heard but not seen – but maybe that was just my connectivity.)

For me, the most important part of our contribution, was the assertion that “Not only horses gallop. And not only those with a clear voice and their eyes wide open can hear, understand, read, reason, and decide.

Ach so?


Here is an outline of what we said.

When I hear gallop I think horse, a doctor once told us.

When someone sees Padraig, with his eyes half closed, with little movement, and no voice, they often think he can’t hear, listen, read, understand, reason, or decide.

Assumptions help us to understand the world around us. But they can also limit, and sometimes dangerously limit, our capacity to look a bit closer, to see the Zebra galloping down the savannah in Dublin Zoo or to allow Padraig an opportunity to live his life, to offer him inclusion, equality, participation, and self-determination.

Here are two examples Pádraig encountered of such limitations.

One of the first questions we were asked by staff in the neuro ward of Beaumont Hospital following his accident was: “Which nursing home is he going to go to?” Nobody even considered asking Padraig about his preference, or indeed whether he wanted to spend his life in a nursing home. As it happens, he didn’t.

Another example of such limitations Pádraig came across was at the last elections, when a neighbour kindly offered to stay in the house with him while we, Pat and Reinhard, went out to vote, assuming that he didn’t vote. Another neighbour the three of us met at the entrance to the polling station offered to stay outside with him while we went in to vote. Padraig’s interest in politics has not diminished since his accident seven years ago and he stays well on top of current affairs. He is always very informed when it comes to elections or referenda. And he always votes.

One of the key words in the new act is assisted decision making. We have learned that this ‘assistance’ must come from somebody who knows the person well and understands them, especially for those in a similar situation to Padraig’s. Otherwise, big misunderstandings will happen. Here is one example.

When a therapist asked him before the last elections if he liked Donald Trump, using his manual communication device he answered with one bleep, meaning ‘yes’, surprising the therapist. The family knew Pádraig liked listening to Trump as he found him entertaining. So we asked him whether that was true, and he answered ‘yes’. When we then asked him if he liked Trump’s politics, he emphatically answered “no”, bleeping twice.

But assistance must come not only from someone who understands the person and is close to them, it must come above all from a person who has their best interests at heart. Health professionals, courts or court appointed officials might not always be the most suitable for this role.

Over time, we have learnt that Padraig can read, understand and solve complex problems. He can read questions and, using a switch, the ‘bleeper’, pick the correct answer. His sense of humour and language preferences have not changed. If you asked him to spell his name and you expect ‘P’ followed by an ‘a’ you will learn that he prefers an ‘á’. He still likes his mother to speak to him in English, his father in German and his friends as Gaeilge.

We have learnt that the only barrier for him to express himself and fully participate in conversations is our incapacity to provide him with the adequate means. That is why we are constantly on the lookout for new technologies, like the ‘handshoemouse’ that we found during the summer, or leading-edge research ‘translating’ cortical activity into text, in other words: translating your thoughts into speech.

******

Central to the most fundamental human rights is the right to self-determination and the right to be included in society’s decision making processes. It is encouraging to see that these rights are gradually becoming the norm in Irish society and that they are being supported by the new act.

It will be up to each and everybody among us to question and change existing perceptions, preconceived expectations, mindsets and embedded attitudes in relation to a person’s capacity. Even the genuinely well-meaning will need to make a big effort in order to see beyond the obvious, as we have seen in the examples above.

For us as family members, the act marks a radical step in the right direction. We look forward to Padraig’s participation and inclusion in his affairs, soon to be legally recognised in Ireland. We look forward to not having to fear that outside bodies or persons may take decisions against Padraig’s wishes, decisions which may not be in his best interest. It is a source of joy and relief to us that his decisions will finally be respected legally as well.

Not only horses gallop. And not only those with a clear voice and their eyes wide open can hear, understand, read, reason, and decide.

No decision about Pádraig without Pádraig.

“No decision about me without me” (Pádraig using his computer-generated voice.)

Afghanistan

“If you can go surfing in Afghanistan you can do anything”, Afridun Amu said this week on a German Radio Station. Considering that the country doesn’t even have a shoreline and is better known for the decidedly anti-sport Taliban, I couldn’t but agree with Afri. The story he told is backed by a Kickstarter Campaign and you can see a short documentary about it on Youtube.

Afri says, “Most people know Afghanistan only from the news. It’s mostly about terror, war, negative stories, and that’s definitively part of the reality in Afghanistan. (…) But there is also the Afghanistan of very beautiful landscapes, interesting personalities, an incredible spirituality.” He says that when he and his friends arrived in the Pandschir valley, the people there had never ever heard of anybody standing on a board on top of water. Never mind seen it. And they were amazed.

In my mind, it couldn’t come much crazier than this.

“Dreams are meant to be lived”, says Afri.

Even the most incredible and mad ones.

Before Pádraig went out for a walk on Saturday afternoon, he went out to his balcony. Standing. I am not sure what it looked like from below, but I know that Pádraig felt on top of the world.

One of his therapists this week was a senior Bobath instructor who did her magic on Pádraig’s body. I tried to pick up some ideas we could take home with us. But most of the time it was like watching Rembrandt working on one of his masterpieces and me trying to pick up some of his techniques. Pádraig really liked the sessions and his hips visibly benefitted.

When the master was not around, we mostly stuck with our routine exercises. Standing for each transfer, now again with both feet on the ground. Peddling the MotoMed, at times now without the headband. Resting in bed, with the right leg again being of the same length as the left.

Our stay in Burgau will be coming to an end soon. If there was only one thing I’ll be taking away from here, and there are many, it would be an increased conviction and enthusiasm to provide lifelong therapy to Pádraig and those who, like him, need it to survive. Secondary, life-limiting injuries can often be avoided and be dealt with given the right support. Not providing this support would be negligent, cruel, and inhumane. Equality, participation, inclusion, and self-determination are universal values for all, including for middle-of-the-road people, straight, GBLT, poor, rich, old, young, white, black, yellow, brown, crazy (but highly motivated and fun) Afghans and those with a severe brain injury.

If Afri can surf in Afghanistan, we can make life and living with a severe Acquired Brain Injury a reality. Watch us.


Pádraig will be looking for a new personal assistant / carer from early October. Please spread the word and get in touch if you know of anyone who might be suitable and interested. – Thank you in advance!


The HSE will be launching the Assisted Decision Making Act 2015 with an “Explainer Video” featuring Pádraig who will also be at the online launch of the video this coming Thursday. You can register to join the event and watch the video later on. Here is the official announcement of the online event.

Online Launch of the Assisted Decision Making (Capacity) Act 2015. Thursday 24 September 2020 10.30am – 12.15pm. Please click here to pre-register for the event

The Office is launching an Explainer Video on the Assisted Decision-Making (Capacity) Act 2015. The Explainer video includes simple core messages on the Act from the voices of staff and people who use our services. It is intended for use across all services to provide information to staff on what the Act means for their practice.

Chaired by: Dr Philip Crowley, National Director, HSE National Quality Improvement Team

Keynote Speaker: Mr Paul Reid, Chief Executive Office,

HSE Contributors will include Ms Aine Flynn, Director of the Decision Support Service, Professor Mary Donnelly, School of Law, UCC, Ms Caoimhe Gleeson, Programme Manager, National Office for Human Rights and Equality Policy, Margaret and Padraig Sweeney, Mary and Damien O’Donovan, Reinhard and Padraig Schaler.

Sound quality for the launch may be better through a phone so you may use the Irish dial-in number by telephone as follows as an alternative: Telephone: 01 526 0058. When prompted, enter the following  access code: 137 842 8368

The explainer video will be uploaded to www.assisteddecisionmaking.ie following the launch.

This is event is organised by the HSE National Office for Human Rights and Equality Policy and the HSE National Quality Improvement Team.

 

Peking

Because of a temporary tightening of visiting regulations I got a taste this week of how the China virus, the kong flu, can cut people off most contacts, isolate them, nearly put them in solitary confinement. During the week, the rehab hospital introduced, just for a few days, pretty strict control measures. I was still allowed to go in but we could not leave the room and there was no visiting.

What must it feel if you are, with a severe Acquired Brain Injury, practically locked up in your room, for months, with no visitors, and you don’t even (fully) understand what is going on? Are Young people with a severe Acquired Brain Injury in Nursing Homes updated on the developments and the ever-changing impact of COVID-19? Even if they are, do they understand what is going on?  I can not imagine what it must be like. Totally dependent and practically locked up over months, which no end in sight.

Pádraig is back on the MotoMed, peddling every evening for at least half an hour, most times he makes just over 5km.

That’s just a little less than it would take you from Burgau to get to Grundremmingen, where Bavaria produces ‘clean’ energy. It’s the place you will always find, especially on a good day, when the sky is blue – except over Grundremmingen, according to someone who lives there. There’s always a white cloud hanging over the place. I don’t think I’ve ever staid that long in the neighbourhood of a nuclear power plant. Strange how beautiful it looks.

While Pádraig is peddling away, I play music for him and try to entertain him a bit, so that it doesn’t get too boring. There are days, when I share some of my favourites instead of trying to play his. The other evening, I played the soundtrack of Easy Rider. For the first time, I later looked up the lyrics of Jimi Hendrix’ contribution, If 6 was 9.

If the sun refuse to shine
I don’t mind, I don’t mind
If the mountains fell in the sea
Let it be, it ain’t me
Alright, ‘cos I got my own world to look through
And I ain’t gonna copy you

I thought there was a lot in this song. Hope, motivation, strength. The music might not be everybody’s cup of tea – though I would agree with the comment that “Mitch Mitchell is the most underrated drummer of all time” as this song proofs. Mainstream is not always best. If you like it a bit more melodic, you can Go your own way. “Suddenly, your Mom’s music doesn’t seem so bad”, says one comment.

Anyway, Pádraig continued with his rehab. Standing up with his back against the wall (there must be a song in this), standing up on the tilt table, when he is getting out of bed.

 

His head control and posture is getting better, not dramatically, but noticeably. The aim is to make less use of his head band.

He has no problem stretching out his right leg and the right hip seems to be fine. What still amazes me is how the problem with his leg and hip had affected the rest of his body. Or, the other way round: how the successful intervention in relation to the leg and hip now also helps his overall posture, his head position, his spine. Everything is connected to everything else.

One of the very beautiful moments this week in Germany was when we watched the return of the “Peking” to Hamburg.

The ship was launched in Hamburg in 1911, left for South America, and never really came back. She spent the past four decades in a Maritim Museum in New York and was sold to the ‘Maritim Foundation’ for US$100. They spent a million dollars to ship it across the Atlantic, and a further three years and 38 million dollars on refurbishment. She will now be the heart of the German Port Museum in Hamburg. There are a few interesting shots in the video, apart from the ‘Peking’ herself. In the week of 9/11, watch the huge jet flying towards Hamburg’s skyscrapers at the beginning of the video. And in the background of the ‘cover’ picture is Hamburg’s new, futuristic opera house – part of what has been called the German Bermuda triangle of Hamburg opera, Stuttgart train station, and Berlin airport – all several times more expensive than originally planned, and years behind schedule.

And then, of course, the name of the ship itself.

No surprise that Trump wanted it out of New York.

BMW

The picture of the week.

Ist das nicht der absolute Hammer?
This rocks! – ¡Dios mio!

If there ever was proof needed that a picture tells more than a thousand words, this is it. When I took the picture, I thought it was special.

Now, looking at it, I see that it is spectacular. You can write a book around this picture. There are dozens of messages here.

And not just that Pádraig is very tall.

People in wheelchairs often miss dealing with the world and the people surrounding them at eye level. This is one experience Pádraig doesn’t miss. Even in his wheelchair, most people are still at his eye level. It’s when he stands up that he looses that eye-to-eye contact.

Oh lord won’t you buy me a Mercedes Benz. My friends all drive porsches, I must make amends. Janis probably never made it to Bavaria and never drove a car manufactured by the Bavarian Motor Works (BMW) or a ‘beamer’ as they are affectionately known by young urbans in Ireland. Maybe it’s just that ‘BMW’ doesn’t rhyme with ‘amends’.

An old friend of mine had one in his living room for a few months, while he was trying to fix it. And before you ask. No, he did not live in a mansion, it was just that the “beamer” was rather small. Three wheels, a true ‘front’ door, and a bench just slightly wider than a ‘normal’-sized driver would require. I couldn’t believe my eyes, when I saw a pristine “Isetta” parked around the corner here. After many decades, this was the first time.

Another ‘car’ I saw last week is also worth a mention. When I was a kid, big trucks collected the bins with a couple of men jumping off the back, running to collect the bins, getting them emptied by a mechanical lifter into the truck, and finally leaving them back where they had picked them up. – A distant memory in the country that invented “Vorsprung durch Technik”. The truck is still there, but it doesn’t need people anymore to pick up the bins, it does it by itself.

After all this excitement, I went to a street Café where I ordered an espresso. What I got was a perfect, dark and strong and short coffee on a special saucer, with a ‘glass’ of water and the, for such a delicate, elegant setting, required biscuit.  The waiter was not particularly happy about my order, I noticed. When I paid, I knew why he wasn’t happy. All around me, people had ordered expensive, hand-made ice creams with tons of rare fruit, chocolate and fresh cream on top. My espresso turned out to cost 1.60 euro. I checked the receipt. It wasn’t a mistake.

Pádraig’s therapies this week were like a lesson in neuro-rehab. There are endless possibilities to position, sit and stand Pádraig. To support his posture, to develop his core, to adjust his hips. Not all was new to us. We knew about the tilt table for standing. Pádraig sits at his own table at home, especially for meals.

But he had never sat on a regular chair, a ‘turned around’ chair – which worked out incredibly well. He also had never tried to stand up with his back against a wall, providing him with very firm support and giving him a sense of security he wouldn’t have just standing against another person. Other ways of standing we tried out were a bit labour-intensive and required a few therapists to support him from the back and the front.

The week went well and we even had time to chill a bit in between. We are still watching CNN to get the latest from our brothers from across the big water. Surprisingly, so far we are managing to listen to even the most incredible horror stories without falling into utter depression. We are also listening to some podcasts and a mix of Irish, German and Spanish radio stations. The biggest challenge I find is not to loose my sense of time and space. Days run into each other, the surroundings don’t change. Weekends are a bit different. There is less structured rehab and more casual or social activities. Less therapists and more family for everybody here. It’s a reminder that this is what life is, or should be all about at its core: Having a good time with your friends and family.

Having adventures, I should add. Having plans. Being enthusiastic, committed, full of smiles and love and rock ‘n roll.

Whether it’s in a Mercedes Benz with Janis, in a Porsche with her friends, a tiny BMW or a bus on the road to Alaska.