Pledge

Over the last two days, and thanks to the efforts of one of An Saol’s strongest supporters, two candidates for the upcoming elections signed up for our Pledge: Catherine Murphy (Social Democrats) and Roderick O’Gorman (Green Party).

PLEASE make absolutely sure that candidates in your constituency sign An Saol’s pledge.

• Cover letter, click here;
• Small poster to keep beside your door, click here
• See who has already signed, click here
• Sign pledge the pledge here (http://bit.ly/2016Pledge).

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First things first

Pádraig is taking on this cycle-thing as his own. He makes me think we should return the MOTOMed gadget to the HSE and get himself a normal exercise bike instead! Well, maybe not quite yet, but we’ve been left absolutely amazed. In all honesty, I’d never had thought that he would take this over, ignore the motor and get cycling himself. (I’m just showing my ‘innocence’, I guess, with someone who doesn’t know, never knew, what boundaries are.) We used to look at other injured wondering how they were doing it! And here is the man himself doing half an hour almost exclusively himself, at his own pace, achieving a new PB every day.

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Shortage of beds for brain injury patients criticised

Labour’s Minister of State for Primary Care, Mental Health and Disability in the current Irish Government,  Kathleen Lynch, said there was a chronic shortage of beds for patients with acquired brain injuries and a complete lack of such beds in some regions. “With a serious head injury, immediate intervention is essential to ensure the person returns to normality, if normality can be achieved.

“It is conservatively estimated that there are 10,000 new brain injuries every year in this country, but there are just 110 beds in the Republic to deal with these people. That doesn’t make sense at any level,” she said.

“Even if we look at the Bucharest model, Romania, with a population of 22 million has 32 specialists per million of population.”

Ms Lynch said anything beyond a two-week delay was totally unacceptable, “but the tragic certainty that a sick person has to wait two years for an initial assessment is nothing short of abandonment of its obligation to the public by the HSE”.

The HSE, “which has a national annual budget in excess of €13 billion, a sum that would float some of the newer economies in the EU, should be giving us a much better service”.

She didn’t say this recently, but in 2008, when she was speaking during a Labour private members’ motion on neurological services.

The then Minister, Mary Harney, said a final draft report of a national review by the HSE of neurological services had been completed and “has been submitted to the Director of the National Hospitals Office for consideration”.

She said a new hospital with a completion target date of 2012, would provide additional treatment and diagnostic capacity. The design for the hospital is to be submitted for planning by mid-2008.

She added that “the HSE has also informed me that plans have also been prepared to develop a satellite unit of the National Rehabilitation Hospital attached to Beaumont Hospital, linking the rehabilitation expertise of NRH with the neurological services in Beaumont.

“This new proposed unit will provide acute medical rehabilitation services and early rehabilitation for those suffering from brain injury who access the National Neurosciences Unit at Beaumont Hospital and who currently have to access services at the National Rehabilitation Hospital.” She said the Government “is also committed in our programme to increasing rehabilitation bed capacity”.

Then Labour health spokeswoman Jan O’Sullivan, now the Minister of State for Primary Care, Mental Health and Disability in the current Irish Government, was “particularly concerned that we are hearing long-needed development of service being abandoned in order just to simply keep the service going without any changes in the way the service is run”.

Quotes above from an article by Marie O’Halloran in The Irish Times of 23 April 2008. Here is what I would add…

Reality check

None of Labour’s proposals tabled, none of the very grave concerns raised by them in their private motion eight (!) years ago have been tackled during their time in Government over the past five years when they had a chance to do so, which included —

• A chronic shortage of beds for patients with acquired brain injuries and a complete lack of such beds in some regions;
• An increase in the number of beds to treat ABI victims adequately (O’Sullivan mentioned that Ireland should aim to match Romania);
• To do something about getting immediate intervention for ABI victims which is essential to ensure the person returns to normality, if normality can be achieved.

None of the promises made by Mary Harney actually materialised: that includes —

• A new hospital with a completion target date of 2012, with additional treatment and diagnostic capacity;
• A satellite unit of the National Rehabilitation Hospital attached to Beaumont Hospital, linking the rehabilitation expertise of NRH with the neurological services in Beaumont;
• The provision of acute medical rehabilitation services and early rehabilitation for those suffering from brain injury who access the National Neurosciences Unit at Beaumont Hospital;
• An increase in rehabilitation bed capacity”.

In the meantime…

• Injured ABI patients spent months or years in acute hospitals, with insufficiently trained staff, acquiring new, additional, and completely avoidable injuries such as dropped feet, dislocated shoulders, or bed sores — occupying badly needed, very expensive beds unnecessarily;
• The National Rehabilitation Hospital (NRH) does not have one (!) neurologist; not one ophthalmologist; and an insufficient number of therapists.
• When leaving the NRH, they go back to an acute hospital, or a nursing home, or (in very few cases) home — where there is insufficient support to help the injured and their families to deal with their highly complex needs.
• The Neurological Alliance of Ireland, together with the National Clinical Programme for Neurology, today published a report stating, among other facts —
  • Ratios for the recommended number of neurologists per head of population (1:70,0000) are exceeded within each hospital group with the Mid West hospital group coming out worst with a ratio of 1:200,000.
  • Waiting times for routine MRI scanning exceed twelve months in seven of the eleven centres.
  • Ten of the eleven neurology centres reported very limited or no access to community neurorehabilitation services which are crucial for recovery and prevention of disability for people with neurological conditions.
  • The lack of neurorehabilitation services places an unsustainable burden on neurology services (RSch: never mind patients!!!) which are unable to discharge patients, or are forced to readmit patients for therapy services that should be available in the community.

Facit

• Everybody agrees that the services for ABI in Ireland are inadequate – to say it politely.
• Political parties don’t keep their promises in relation to ABI.
• Established service providers don’t (cannot?) deliver what is required, including Beaumont Hospital and the National Rehabilitation Hospital.
• The HSE does not (cannot?) invest in neurological rehabilitation as is required.
• The situation is worse for survivors of severe acquired brain injury (sABI)
• We need to set up a pilot project involving all those who really want to change the situation to demonstrate how to help survivors of sABI, based on best international practice and most recent international research.

As there doesn’t seem to be anyone else to do it, let’s work together under the umbrella of An Saol.

We need all sorts of expertise, from health policy to finance to legal to nursing to therapy to medical to regulatory to research to social media to design to marketing to fundraising.

I know I asked you a few times before. Finally: here is the form to sign up!

Now.

Here.

 

Today was all about bikes and cycling.

Pádraig led the way.

He cycled, HIMSELF, almost 5 minutes. Isn’t that incredible? Something we would never have thought possible even yesterday. It’s slow and very low impact. But this message never came up, never mind with these figures!

Three of his friends called in this afternoon to help with the planning of the first of two cycles. It’ll be from Boston to Brewster, to leave Boston on Sunday, 26 June, with an overnight in Hyannis, and arriving in Brewster on Monday, 27 June, at 10am. In parallel, we’ll organise a cycle getting into Dublin, possibly from Ráth Chairn (Rathcarran) via the Phoenix Park, arriving on Sunday afternoon, 26 June. We’ll make sure that there will be a close link up between the two cycles.

Another friend called in later and left for town for an undisclosed St Valentine’s meet up. Tonight, love is in the air!

So now, Pádraig is at home, home. (Most of) his PAs have started. The extension is (almost) finished. (Some of) the equipment he needs has arrived. We’re (about) to organise therapy sessions with An Saol. We’re (almost) there.

Sounds like the end of something. Almost time to relax and sit back. After all the ‘excitement’ and drama and ups and downs and frustrations and uncertainties and sleepless nights and incredibly hard days. We got somewhere.

To the beginning. Of a new life. With all the uncertainties and excitement and opportunities.

One of Pádraig’s friends called in last night and was telling Pádraig a great story about how one of his friends greeted a few other friends from the middle of a big stage when they arrived (we know who you all are::) in the same familiar friendly way he would have done had they just appeared at the doorstep of his house. It brought a huge smile to Pádraig’s face and we knew he could not just imagine the scene exactly as it had happened, he could feel the friendship, the implied camaraderie, the meta-story with all the unspoken, unexpressed, but nonetheless present familiarity of the personalities of those involved.

It was brilliant.

Because he knew each of the people involved. He had spent the happiest years of his life with them. Those years no one wants to leave behind, years that should never end, years he looked back on when he sat on one of the Greens in Trinity College after his last exams and realised that they’d be coming to an end. Friends, a spirit of support and community, a togetherness, purpose, fun, music, energy, long nights, early morning sunrises, listening to the same songs again and again and again until the lyrics had been lodged forever into his memory, being together with the most amazing intelligent bright strange and wonderful people – what would happen to all of this?

Pádraig’s friends are the most wonderful people I’ve met in my (long!) life. They had the most wonderful time together and they will always watch out for each other. Over time, their life will evolve, change, and move in different directions. In the way that Pádraig imagined that day sitting in the sun on one of the Greens in Trinity College. Their relationship has changed and will continue to change.

There are new roles and responsibilities that will evolve.

And millions of new ways of having fun together, of enjoying quiet moments, of listening to new music, of watching new films, of reading new (and old) books, of sharing stories, of going out to see plays, see bands, sit in the sun, sit in the rain.

Experience life.

Share it with Pádraig in his new life.

Oh – almost forgot the cakes:)

It’s a concept our kids really enjoyed when they were small. Neighbours in Tating introduced it to them because we always arrived slightly late for their birthdays in the summer. So they told us, not to worry, you could always “nachfeiern”. I don’t think there is a straight translation for this, but it means something like celebrating the event a bit later, with presents and all:) — And yes, you can also “vorfeiern”:)

I got loads of presents yesterday: among them a cake for my birthday. AND a cake to get better. I won’t show either (because the birthday cake shows my age and it wouldn’t be fair to just show one cake).

Even Pádraig got a present: a leg trainer MOTOMed arrived. On loan for the next four months… We’re hoping to change to an arm and leg trainer over the coming weeks and will keep at it…

But the best present came today. This was truly in the spirit of “Nachfeiern”!

Okay, it was a really low gear, but you have to start somewhere. And Pádraig started. The FIRST time ever, he cycled himself, just a bit, without much ‘resistance’, but that’s where you start.

Finally, please print the sheet below and keep it beside your door.

Print copies for your neighbours and friends.

Use it when candidates for the upcoming elections call to your door.

Ask them whether they have signed it online (they all got it in their email).

If they didn’t ask them to do so

http://bit.ly/2016Pledge

Remember: Movie night — Fitzcarraldo — on Friday, 19 February 2016, 19:00h. Find out where and let us know whether you’ll be joining us here. Let me know here which other movies we should get for the next movie nights (even if you shouldn’t be able to make it yourself).

About Fizcarraldo:
If you have a dream, the only way to accomplish it is to face it head on. If your dream requires you to drag a massive boat up a mountainside, do it. So says director Werner Herzog in the bizarre but captivating Fitzcarraldo.
http://www.rottentomatoes.com/m/fitzcarraldo/

You might have seen last night’s comment:

It’s an absolute disgrace how few have signed this! It’s an indication of the lack of interest in helping people with sABIs in this country. We all need to get behind this pledge and ‘badger’ our candidates. Everyone needs to email their own ‘wannabes’ and demand a reply.

Martin referred to the number of politicians who have responded to my mail asking them to sign An Saol’s Pledge. (You can see who has already signed up here.)

I’ll leave it with this tonight.

I spent most of the afternoon in bed, just got up in the evening to get something to eat. I found it amazing how long I slept or dozed without really noticing time passing by. Having something stitched up inside me, without having much external evidence of it, also feels really strange. It hurts but without the visible evidence. – Good thing is, it’ll be ok and back to normal in a week or two, fingers crossed.

Talking about fingers: here’s a really imaginative solution of a staff nurse for wearing ‘jewellery’ when you’re having an operation, and you don’t want to take it off (because it’s your wedding ring:). Ignore the wrinkles on the hand, it’s the angle the picture was taken from!

In the meantime, and as always, the world keeps spinning ’round. Some carers arrive, some are sick, some have been sick since Pádraig arrived home and haven’t met him yet. They are having ads on the radio asking people to get their flu vaccines.

The community team, various therapists and a dietitian, have been here a couple of times and are really making an effort to help as much as they can. Tomorrow, we’ll have a rep in here for the n-th time to measure the height of the room for Pádraig’s soon to be ordered standing bed. We’re not giving up hope, though patience is really required here.

In the meantime, Pádraig has not been standing. Not in the NRH (he has been discharged and put on a waiting list for outpatient therapy); not in the community physio facilities (no physios available to supervise him standing); not at home (no standing bed). We rang around various suppliers in Ireland to see whether we could get a more difficult to handle, but more economical, tilt table, and were told they are not available second hand; getting them would take between 3 and 6 weeks (depending on supplier); they might not be long enough for Pádraig (were going to check but didn’t get back to us).

What do you do when stuff like this drives you around the bend? – Correct: you do it yourself. So we found a supplier of tilt tables in another European Country. They responded to all our queries within minutes. They will, wait for it: manufacture an extra long table for Pádraig; supply it with special supports for the lower limbs, hips, and head; have it ready to be shipped within two days; ship it to Ireland where it should arrive within a week; and all for less than half the cost of the cheapest tilt table available here. I am not sure whether they work the way they do because they care or because they want to do business. But to me it seems that someone who takes weeks to move or doesn’t get back to you at all, does neither care nor is he interested in doing business – maybe it’s because they think they have it all stitched up in a monopoly?

Finally – no positive news yet on premises for the An Saol Sarah Walsh Therapy Centre.

But – Planning of the charity cycles in the US is making progress. Please click here to sign up if you want to join us in Boston in June.

 

Didn’t eat much more than a couple of pancakes today. The morphine did wear off and I felt miserable. Even the pancakes (it’s ‘Pancake Tuesday’!) didn’t do the trick. This keyhole surgery stuff is pretty disappointing. At least with a big cut across your body you have something to show for and people feel with you. With a couple of small holes covered by a simple plaster, nobody really believes that you just had an operation… Bit of a disappointment.

Anyhow, back to normal.

Loads of visitors and therapists today, with some ‘presents’ for Pádraig. Among them this really brilliant cup.

It shows that details really matter: its opening is oval, it is transparent, it has a detachable large footprint, and a really large handle. Whoever designed this simple mug earned themselves a design award. The first cup that will allow Pádraig to hold a cup and be guided using it.

The other picture tonight is one I took on the way to the hospital yesterday. When I found the envelope with the writing in my pocket I stopped and took a picture of it on the street because I was afraid I might loose it in the hospital. Pat wrote her name on the envelope and it was the first word Pádraig read and recognised, as far as we know.

My second night upstairs in a row. Won’t have to get up to turn Pádraig. I’m not really that far away, but I miss him. Thanks to everyone for all their good wishes. I was told it would take a few days, maybe a week and I should be ok again. – Can’t wait.

I don’t really spend much time on Facebook. Maybe, it’s because I don’t fully understand how it works and what I can do with it. This morning, though, I clicked on an icon I had not clicked on before. It opened an overview of what my 281 friends had been up to over the past day or so (at least this is what I think it was showing…). – By the way, one of our daughters told me that 281 friends is a pathetic number.

Anyhow, one of my friends apparently was on a visit to London and posted the picture of a fox. He couldn’t believe that this wild animal had made it into the middle of one of the busiest cities in the world. Interesting. But – so what?

The brilliant bit came in a comment by a friend of that friend who lives in London (not sure whether the two friends had met in London for a pint, though it didn’t look like it, because if they had, he wouldn’t have had to post that comment on Facebook).

Anyhow, the comment was:

They (the foxes) are everywhere in London. The countryside is full of rabbits. This is because foxes have discovered that rabbits run faster than bins.

We always knew that foxes were really smart, but this is the ultimate confirmation.

There must be a lesson in this kind of “thinking outside the bin”. Why running after the things you know are really hard to catch, when the things you’re looking for are readily available if you just looked for them somewhere else?

I was thinking how this fox-intelligence could be applied to the situation we find ourselves in… I had a few ideas. What do you think, any ideas yourself?

It was a really quiet day today. For a change. There were no meetings, no-one calling the house, no post- and delivery men ringing at the door, no appointments. I think Pádraig enjoyed that too.

Last night, Pádraig’s famous friend, the bass voice of the RTÉ Philharmonic Choir,  who during the week had performed what must have been one of the most difficult pieces of choral music, written by Stravinsky, came over for a visit. It was a lovely night. Tonight’s Boston to Brewster fundraising and awareness cycle got postponed to next Sunday. I used the time to have a really long conversation with a mother whose child was brain damaged at birth. What this family went through in the past years is extraordinary. Their daughter beat all odds, not only survived, but developed into a girl with tons of personality into the family that not just deeply cares for her but is including her as a ‘just’ another member of the family: life as ‘normal’ as possible under the circumstances.

Solutions to problems, ways to deal with extremely difficult situations, are often closer than you think. No need to chase rabbits in the country, far away.

 

For some stupid reason, I stayed up last night when everybody else in the house had gone to bed and Pádraig was asleep, and started to watch City of Angels on Pádraig’s big telly. It’s a kind of remake of one of Germany’s best directors, Wim Wenders, film Der Himmel über Berlin (Wings of Desire).

When I tuned in, Seth (Nicolas Cage) was watching Maggie Rice (Meg Ryan) frantically trying to save a man’s life during surgery. Seth was invisible to Maggie because he was the angel sent to escort the man on the operating table into another world. When the man dies, Maggie cannot believe it. She had done everything right. In a strange way she feels that something or someone else was involved here, some other ‘force’ because, in her opinion, the man shouldn’t have died. I switched off in the early hours of today before the film finished, just after Seth’s love for Maggie made him jump from an ultra-high tower in order to join the humans and, above all, Maggie – loosing his ‘immortality’ and special powers in the process.

The scene in the operating theatre made me think of one of my favourite concepts, the  condition psychologist Ellen Langer first identified as the ‘illusion of control‘. It’s what our society today is made of. Everything needs to be measured and planned, nothing is supposed to be left to chance. Metrics are believed to help you achieve your goals, whether that is losing weight, increasing profit margins, or finding the right partner on a dating website (not that I would really know anything about stuff like that:). Et metiri potest, ergo est.

When Pádraig went on one of his big trips, to Mexico and Central America, he just went. I couldn’t believe it. He just went. There was no plan, no maps, no guidebooks, no scheduled itinerary. He just went. When I asked him how on earth he could do that, was he not afraid of missing one of the big ‘Sehenswürdigkeiten’ and tourist attractions, his reply was that he would meet loads of people on that trip who would make sure he wouldn’t miss a thing. In fact, he would find places so cool they wouldn’t be even listed in guide books.

He had recognised that trips, as much as life, cannot be planned. In contrast, I was suffering from the symptoms of this psychological condition knows as illusion of control. The beauty of not planning and not measuring is that we can do what we want to do at that moment in time, the likelihood being that we’ll do it really well, because we are so motivated; we’re not restricted by the straightjacket of pre-set goals but let us excite by our creativity; we’re not competing against anybody but appreciate the work of others; we’re kind to others and enjoy life to the fullest in great company.

Pádraig could have taught me about exploration, kindness, imagination, creativity, and living the life. Had I ever listened a bit closer when I was busy filing reports and checking metrics.

Maybe something, someone made me switch on the telly at midnight so that I would watch the angel jumping from that tower to be close to the one he loved, to be human.