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~ Acquired Brain Injury (ABI): from the acute hospital to early rehabilitation – more on: www.CaringforPadraig.org and www.ansaol.ie

Hospi-Tales

Category Archives: Uncategorized

Cloone

31 Sunday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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We’ll be missing the Cloone Show tomorrow but we saw all the preparations going on today for what is being billed as the biggest, brightest, and most exciting agricultural shows in the West of Ireland! What this really means you’ll only understand once you’ve been to the place. Many years ago, when Pádraig and I were driving to Cloone, he asked me whether we were in the ‘Middle of Nowhere’ – and that was just on the way to the place!

Down the road...
Down the road…
Up the lane...
Up the lane…
At "Pádraig's Bridge'
At “Pádraig’s Bridge’
Getting ready for the Show
Getting ready for the Show

To be truthful, it is one of the most beautiful villages in Ireland. Really nice. Really calm and relaxed. Except for tomorrow. For the Agricultural Show.

Next years, we’ll go to Leitrim for July and August. On Holiday. And to enjoy the Agricultural Show!

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Basic

30 Saturday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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The first night here I couldn’t sleep.  It was too quiet. I felt really uncomfortable. It was too dark. No street lights. No traffic. No people laughing and shouting on the street.

I got used to it. At times I wondered why we didn’t live here.

Now I wonder whether that will ever be an option. Pádraig really enjoys it here, though everything is beyond basic. Could that be the attraction?

Sense-less

29 Friday Jul 2016

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Have you experienced –

sense deprivation?

physical – no smell, no touch, no taste, no control, …

mental – logic, truthfulness, compassion, understanding, common sense, …

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A sense-less world? Even for a short period but sufficiently tough and unforgiving that you will remember forever?

If you have experienced sense-less-ness you are ready for change, ready to do what it takes to restore sense and senses. – If you haven’t we should help you to experience it. Because it’s worth it. Your life will not be the same afterwards.

Pádraig is taking big steps forward. When standing in his stand-up bed, he can – when we ask him – relax his left leg, stand just on his right leg, and then straighten this left leg again; and do the same with his right leg. He can lift up a long exercise stick with his two arms a couple of times. Today, he moved his legs to one side when Pat was trying to turn him in his bed, just to help her.

Support for An Saol and the An Saol Project is picking up. There are a number of fundraisers about to happen, incredible initiatives just based on the efforts of individuals who believe that An Saol needs to happen, there is no alternative.

Bringing sense to a sense-less world!

Tenacity

28 Thursday Jul 2016

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One of Pádraig’s great (and sometimes annoying) qualities. That tenacity will bring him    An Saol over the line.

I would like to write more about this tonight – but I am sooo tired. So I’m going to bed and talk to you tomorrow. It was lovely to see one of Pádraig’s friends to come to a visit tonight!

Blindspot

27 Wednesday Jul 2016

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Here’s the solution to see the obvious: just take of the covers of your binocular. Simple actions can do wonders.

bush

But that’s just the first step. Because once you see, you have to allow what you see to acquire meaning and allow the meaning to move you into action. All quite complicated. Because often psychological protective mechanisms kick in preventing us from getting too involved and allowing us to continue with our normal life even in the face of catastrophes.

We all have seen pictures of utter despair. But unless we experience despair, we are unlikely to offer more than our pity or our charity.

While pity and charity lower the pain for a short while, neither is sufficient to remove the causes of despair.

Imagine you lost the ability. To taste. To smell. To see. To touch and feel. To control your limbs. To eat. To drink. To speak.

Imagine you became completely dependent.

Imagine you could experience this yourself. Imagine that there are ways to re-connect your body and your brain. Imagine nobody cared enough to do so. Imagine you’d be left in this state for the rest of your life. Imagine we could offer you a way to experience this – even in a limited way. To live with several blindspots. Would you be curious enough to try it?

Pádraig had another busy day on his long way to recovery. When Pádraig cared enough about something he didn’t accept any limits. Anything was possible if you just worked on it hard enough. Nothing is possible if you accept the status quo and your limitations, if your blindspots turn into normality, if you play it safe all the time, if you don’t take risks, if there is no ‘skin’ in it. That’s the person he is. That’s why he has done the ‘impossible’ and that’s why we will move the earth, no less, to give him any possible chance of recovery. Right?

Let’s take off the covers and see clearly now. No more blindspots.

SecondLifeGo

26 Tuesday Jul 2016

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Why do you feel passionate about something? Why do you get involved? Why do you spend your time doing one thing (and not another)? Why does one cause mean so much to you (and more than another)?

There is probably not one answer to this question. But my guess is that whatever you really want to do has to be interesting, engaging, rewarding, meaningful, and emotional. It should probably involve some kind of (at least partial) ‘bodily’ or physical experience: you want to see it with your own eye, feel it with your own hands, smell it with your nose, hear it with your ears, feel it on your skin… Think about the difference between reading about social deprivation and spending a day with a family who is really struggling. Or reading about drugs and spending a day in a methadone clinic. Or hearing about mental illness and helping out in a psychiatric hospital.

Or reading about acquired brain injury and being close to a survivor and their family.

So maybe what we need to do is to give people the experience of being deprived of the most basic pleasures of life and then being able to regain them with the help of others. ‘Playing’ something like Second Life Go.

Help them experience the almost complete deprivation of the most basic senses, of any level of autonomy, of utter dependency, a total lack of ability to communicate. – And then using technology and the help of others to ‘recover’ from this ‘dead end’ scenario.

Maybe if people experience first hand (well, almost) what it *feels* like to have a disability, to life with the consequences of a brain injury, to be dependent on others, maybe then they will *do* something to affect badly needed change.

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Pádraig had a good day with a new routine settling in that involves regular standing and exercises, as well as better planned resting hours.

Shortcut

25 Monday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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There’s a note I wanted to take for myself. Just so I won’t forget.

picture 1000 words

I mentioned some of the risk assessments done here in the house before to make sure that none of the carers could injure themselves while working and subsequently sue their employers. When we got the tilt table ourselves (because it took months to get the stand-up bed), for example, a carefully carried out risk assessment established that the carers could under no circumstances hold Pádraig’s head when he was standing up in the tilt table – as they would have to stretch out their arms to hold his head and could do themselves and their arms damage in the process.

At the time I noted in a meeting with the HSE where this was discussed that no risk assessment had ever been carried out to establish the risk for Pádraig when he couldn’t stand up for months because of a lack of access to equipment that he needed to stand up. (It is normal hospital practice to get patients to stand up within days of an intervention to avoid one of dozens of the possible negative consequences for their health if they didn’t.)

Something slightly different happened recently. We wanted Pádraig to use the MOTOMed arm trainer, one he had been using in Germany on medical prescription (and under the eyes of a physio who worked with Pádraig at home for four double sessions a week) for months. A recent risk assessment determined that his shoulders have now become too weak to properly support the weight of his arms when being moved in the MOTOMed arm trainer and that there was a risk of doing damage to his shoulders if he used it. Our attempt to buy such an arm trainer was stopped. The one and only distributor of MOTOMeds in the country would not sell us the equipment.

There has never been a risk assessment in relation to the number and frequency of therapy Pádraig is getting currently versus the number of therapy sessions he would require just to maintain his current physical condition – or, even better, to support his enormous efforts to improve physically and recover functions.

In other words, ‘How much damage is the lack of therapy doing to his body?’ or ‘To which extend does the lack of therapy affect a meaningful recovery?’ are risk assessment questions that don’t seem to be asked. What does it mean for his arms, for his legs, for his upper body, for his lungs, for his head, for his brain, for his blood pressure, for his general health if he receives therapy just once a week (for short periods) or, more likely, once a month in the form of an ‘assessment’, or maybe not at all over long periods? How will it effect his health and chances of recovery if he works with carers on stretches instead of with therapists on a coordinated neuro rehabilitation programme? What are the risks that this will affect his current physical condition or prevent a meaningful recovery? What is the likelihood that he will acquire contractions instead, that his body generally will deteriorate without what would be considered by any standards the minimum amount of therapy necessary just to maintain his physical integrity, never mind to support a meaningful recovery?

Are risk assessments just carried out to *stop* something that could potentially do damage (but might not)? Or should risk assessments also be carried out to determine what will most likely happen if something that *should be done* is not being done?

Resonance

24 Sunday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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ˈrɛz(ə)nəns/
noun
The power to evoke enduring images, memories, and emotions.

That is what we need to invoke. To use the power of our voices to create more and stronger sounds all around us.

Just listened, by accident, to a song by Sanmy Davis Jr. called I gotta be me. A song with a huge resonance.

Whether I’m right or whether I’m wrong
Whether I find a place in this world or never belong
I gotta be me, I’ve gotta be me
What else can I be but what I am

I want to live, not merely survive
And I won’t give up this dream
Of life that keeps me alive
I gotta be me, I gotta be me
The dream that I see makes me what I am

That far away prize, a world of success
Is waiting for me if I heed the call
I won’t settle down, won’t settle for less
As long as there’s a chance that I can have it all

I’ll go it alone, that’s how it must be
I can’t be right for somebody else
If I’m not right for me
I gotta be free, I’ve gotta be free
Daring to try, to do it or die
I’ve gotta be me

The song makes it sound easy. In life, at least at times, it seems almost impossible to be me and to be free. But I’ll keep trying with everything I’ve got.

Creating resonances.

Great Dublin Swim

23 Saturday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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We went down to the Liffey today to one of the many sea swims happening in and around Dublin during the summer, in preparation of the great Liffey Swim in August. Pádraig used to swim them. I tried two (gave up trying the first, and was pulled out trying the second:). One of his sisters has been swimming a few this year but this time was the first Pádraig came to support her. Quite a few people recognised him and came over to say ‘hello’ and ‘good to see you’!

There must have been some magic in the air today. See what happened.

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For the first time, she won the swim.

Looks like Pádraig will have to go out and support her more often:)

Sitting at the kitchen table, with my head almost hitting the keyboard. Time to go to bed. Hope you enjoy the pictures as much as I o!!!

Scheere

22 Friday Jul 2016

Posted by ReinhardSchaler in Uncategorized

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There was a tranquility in the garden, a relaxed mood this late afternoon, when we sat outside with Pádraig. And when his carers arrived to get him ready for bed, there was laughter and a bit of banter, bringing a smile to Pádraig’s face. It was a first sign of some level of sustainable ‘normality’.

die-schere-im-kopf

Someone wrote to me the other day saying that they ‘felt’ the other story, not told here, at times. They are right. When I started to write this blog for Pádraig’s and our friends, it was a different story. Then, I did not feel scrutinised and exposed to the risk of stressful consequences. I would like to share what is my own personal truth of what has been happening to Pádraig, how this affects him (as I see it) and myself. How we are trying to get the best possible services for him. How so many people are helping us sharing their time, ideas, energy and love. But I feel the “Scheere im Kopf” getting bigger.

An Soal has published an ad on the website of the Irish Society of Chartered Physiotherapists for a senior physiotherapist (neurology) with an application deadline of the end of this month. If you know anyone who might be interested, please let us know!

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