HotHands

Incredible stuff is happening. Really. First and most importantly: Pádraig’s new favourite ‘exercise’ is playing ‘hot hands’: you put a hand down on the table, the other person does likewise, and so forth. As the other person tries to slap your hand, you try to pull it away. And that is exactly what Pádraig did this morning as I tried to put my hand down on his – and at lightning speed. A little bit later, when I tried to get him ready for transfer into his wheelchair, he pulled up his legs all by himself to help.

What started as an unbelievable day continued…

We watched Shane Grogan and his family on Ireland AM.

At lunchtime, Georg Hook interviewed me on his show “High Noon” about the Great American Cycle we’re about to embark on.

 

And in the afternoon, I had my first very promising meeting with the HSE in preparation of what is rapidly becoming a real possibility: getting the An Saol Project on the road in early 2017.

Tonight, I’m finding it difficult to process all of this and to get ready mentally for leaving in less than 2 days. I have no idea how all this is happening. How so many people are getting onto the Dreamboat. How it seems that the ‘impossible’ is going to become reality. At so many different levels. Two ‘firsts’ in the space of half an hour. I’m still in shock.

I’m almost afraid to believe all this in case there’ll be a huge disappointment in the end. Do you know this feeling?

 

 

 

RightOn

The first time I saw him was on the telly. And I just saw him. It was illegal to have his voice heard on the telly. They had an actor reading out his statements. Gerry Adams met me in the Dail, the Irish parliament, today and asked how Pádraig was doing. That he had heard all about his difficult journey. He asked if there was anything his party and he personally could do to help. And he asked me to pass on his best wishes to Pádraig. – I don’t know, and what in life is for sure, but to me it seemed like as if he and his colleagues will be doing their best to help getting the An Saol project on the road.

Talking about the road.

Someone today asked me whether there was a typo on the poster and the leaflets? It couldn’t really be 1,000 km? Right?

I said: “Right on, man. 1,000km it is.”

right

But it’s not just a question of distance. It’s also a question of duration. It’s ok to cycle for a day or two and than go back home. It’s quite a different story to try and fit the content of an 80l suitcase on rollers into two tiny paneer bags – as a friend pointed out on Facebook earlier. It’ll be fun. No doubt. In hindsight. Imagining how it will be actually fills me with a sense of utter and pure panic. – The “There old guys – one good cause” lark sounds funny as long as it all stays in your imagination. The reality of these ‘old guys’ cycling up (instead of down) the Pacific coastline will be testing!

Isn’t it good that we love challenges? That we thrive on them? That there Ain’t no stoppin’ us now?

In my mind Pádraig will be leading me, riding beside me, telling me to stop talking and to get on with the job.

There ain’t no stoppin’ Pádraig. We’re no longer dreaming on the Dreamboat. We’re absolutely and definitely real here. The An Saol Project will happen. As sure as three old guys will be cycling the 1,000km from Hollywood to San Francisco next week.

Please spread the word about the #GreatAmericanCycle in support of An Saol! Our aim is to collect 1.5m euro! No less. Check out the leaflet here. And support us here.

FlowerPower

One of my regrets is that I wasn’t born a few years earlier so that I could have attended Woodstock. So that I could have gone to San Francisco when that was the groovy place to go to. There’s little I can do about my birthday (apart from being eternally cross with my parents), but I’ll be going to Los Angeles on Sunday, and then cycle to San Francisco and on to Napa. You have to follow your dreams, right?

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In my head I’ve been practicing my eternal party pieces: ‘Coming into Los Angeles‘ by Arlo Guthrie and ‘San Francisco‘ by Scot McKenzie. Still thinking of an appropriate song for the journey. Maybe Canned Heat’s On the Road Again… I learned Coming into Los Angeles from an old girl friend (old = when we were really young, like really), and On the Road Again from a hippie on the beach of Tarifa in Southern Portugal on the way back home from Interail to Marrakech. Never managed to learn San Francisco on the guitar off by heart – but who knows, it’s never too late.

On a less hip note, we had another meeting with the HSE team looking after Pádraig today (we have them every three months or so) and it genuinely was a really pleasant, encouraging and positive meeting. We talked about all the good stuff going on, about Pádraig’s rehab in Germany and how he enjoyed it being challenged, how he loved walking across the room and up the stairs, about some plans for the future – and left out all the difficult questions we all know we can’t do anything about. The German in me was getting a bit unsettled (Germans love to discuss the impossible) but in the end the Irish in me prevailed and we all went home happy campers.

In a way, it was all very ’68. Just without the smoke and drinks and flowers.

Please spread the word about the #GreatAmericanCycle in support of An Saol! Our aim is to collect 1.5m euro! No less. Check out the leaflet here.

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I have some printed leaflets and posters – please let me know if you would like to collect some or if you would like me to post you some. They are really nice and would definitely encourage people to connect with the fundraising cycle!

Meetings

This morning, the Neurology Model of Care Plan was launched – four hours of presentations and they were not finished when I left. Unless I missed it, there was no schedule, no budget and no one responsible for its implementation. The director general of the HSE promised they would start with its implementation in the next period, whatever and whenever that is. Hundreds of pages of glossy paper and, obviously, a huge amount of work. Infinitely removed from our every-day reality. When will they ever learn?

I wanted to shout “stop” when they mentioned that access to a neurologist or an MRI scan was 18 months. No-one else in the audience seemed to feel any outrage. That’s the way it is. Bad.

Later, I brought Pádraig’s car into the garage and had three meetings about Dublin becoming more welcoming for people with disabilities with the help of technology, physiotherapy services for An Saol, and a Board Meeting.

Meeting – Billy Kelleher, Fianna Fail spokesperson for Health, tomorrow morning in Leinster House, the Irish Parliament. It’ll be my first visit there. Hoping that the main opposition party will support the An Saol project. Fingers crossed.

Meetings. Left. Right. And Centre.

Tired. Hoping it’ll all be worthwhile.

Serge

Tonight, I’ll hand the blog over to an old friend of mine, the very unique, larger than life Serge. He runs a LinkedIn group with 28,000 subscribers. Earlier today, he sent the following message to this group on one of the very rare occasions (the first, in my memory) when he used the group to call for support of a great cause.

LinkedIn

Announcement in Localization Professional Group (28,000 members)

Localization Professional

from Localization Professional: The AN SAOL charity bike ride: Long Beach to Napa (October 3 – 16, 2016)

announcerFullName

Serge Gladkoff, Logrus

Dear fellow Localization Professionals,

Let me tell you about one charity event – a bike ride through California to raise money for a center in Dublin, Ireland to support victims of sABI (severe acquired brain injury).

Those “veterans” amongst you may know Reinhard Schaler personally. Some of you may know the terrible accident that happened to his son, Pádraig. It is for people like him that Chris Pyne from SAP is doing this.

The 1000km route will take the ride from Long Beach via Hollywood along the pacific coast eventually to Palo Alto, San Francisco and finally, Napa. The organizers are already experiencing tremendous support from the media in Ireland and from business people and charitable clubs along the route (such as Rotary). When the ride gets close to Palo Alto, they will be joined by special guest riders from SAP and other IT companies in the valley for a day or so.

The Facebook blog on this is https://www.facebook.com/notes/chris-pyne/the-california-charity-ride/988566081252717.

The Web site of AN SAOL project is: www.ansaol.ie.

Please feel free to pass this message on to anyone to raise awareness about this event.

In case you want to contribute to the hospital project the link is here, and it can be found also on the AN SAOL Web site:

https://www.gofundme.com/AnSaolProject

Noble people, noble goal, noble project – this is something worthy to support in any way you can.

 

Dreamin’

I’d be safe and warm if I was in LA… Keep on California Dreaming’. If you’re goin’ to San Francisco…

This was Flower Power time. The dudes were cool, groovy, outa sight boss, with plenty of MJ and brew, dig it?

So here is one of these combos who wrote a few anthems of this time: The Mamas and the Papas in sunny California.

I looked them up on youtube and, guess what? They look like the most un-coolestest gang ever. Check this out! Who made that hat? Who cut the other guys hair??!

Wow! Is this music?

Pádraig is listening again to his CD’s, CD’s friends brought in when they visited. It’s such a brilliant way to dream, close your eyes, and travel to wherever you would like to. From the #GreatAmericanCycle we will need to post short videos, pictures, music all the time to include Pádraig as much a possible. Dreamboaters on Tour! Can you dig that?!

 

Option

Our team in America is getting ready for the Great American Cycle #2. The route is set, the posters and brochures are ready to be downloaded and distributed by anyone who wants to help from the events site on http://www.ansaol.ie. Meetings are being arranged, cycling clubs are getting ready to join us, and today, our promoter in Hollywood contacted one of the local bands playing in the desert (see last Thursday’s posting) whether they would support us.

With a bit of luck we could be sent off from the desert, right beside the Joshua Tree National Park, onto our €1.5m fundraising trip. Would a feeling that would be like!

There are two ways for Pádraig to transfer from his chair into bed, manual or using the hoist. For the first time, today he said he preferred the manual transfer. It’s significant because the manual transfer involves an effort and some level of control on his part, while the transfer using the hoist is almost complete passive. Pádraig had an option and he took a decision.

Fingerprints

Last day in boot camp, reaching for the sky. We had planned this for week: leaving Pádraig’s fingerprints on the ceiling. Note: he is standing on his feet, the therapists beside him are standing on chairs – and still can’t reach the ceiling:)

But the really amazing thing is not that Pádraig can reach for the sky (we’d had known that for a long time:), what is really stunning is that he can almost stand by himself. He is getting some support, but very little. He can’t really hold his head up straight nor his upper body all by himself when he is standing, but he is getting there. He is holding on to the specially adapted ladder in front of him, a therapist sitting beside him on a chair secures his legs, I am supporting his back and head a little, while the third helper his helping Pádraig to leave his fingerprints on the ceiling!

TheJournal had an article about our meeting with Simon Harris and his officials recently which is absolutely great. Almost 10,000 people checked it out over the past few days.

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Finally, one of the really cool therapists is booking his holidays for next year – including a few days around the first week in August – because himself, Pádraig and I are planning to go to Wacken next year! Waaaaaaaacken!!! So in the spirit of Heavy Metal, I checked out some Bon Jovi songs to get into the swing of it. And the songs are just brilliant. Pure Dreamboater stuff! “It’s my live” and “Living on a prayer”

Turn up the volume to max!

 

After five hours of travel (!) we’re now at the gate of Aer Lingus’s flight back to Dublin. It’s half an hour late (for now) and we’re getting more tired as time passes. I’d say we’ll be collapsing into our beds when we’ll get home tonight. Pádraig told us today that he loved boot camp in Pforzheim, the positivity, the drive, the celebrations of each and every little and big step forward! But he was also looking forward to getting home. Looks like we’ll have to combine both: home and intensive therapy. Leaving our fingerprints along the way.

 

 

Musik

And if my thought-dreams could be seen, they’d probably put my head in a guillotine. But it’s alright, Ma, it’s life, and life only. – The last few lines of Dylan’s song “It’s alright Ma (I’m only bleeding)“. The “Easy Rider” version of the song by Roger McGuinn is probably better known than Dylan’s own. It’s one of the most amazing songs ever. How did he came up with the lyrics? How did he manage to remember them? They go on and on and on in a stream-of-conscience-like rap rhythm. Listen to it (the lyrics are on youtube below the song:)!

Music is like smells – it works like a time machine, it instantaneously transports me into another world.

Just heard about this amazing concert taking place in the Californian Desert during our #GreatAmericanCycle.

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Unfortunately, we won’t be able to go there, but the music of all these great musicians will be in our ears and in our minds when we’ll cycle up one of the most iconic routes in the world to raise visibility and funding for An Saol.

We asked Pádraig and he’s sad that the time here is over – but, at the same time, he’s looking forward to being back at home! We told him that we’ll back here soon, that he’ll continue to get better, that we would continue to travel, listen to music, weird and wonderful, chilled out, out of this world, never the same, never standing still. Dreamboaters.

Finally, here is another one: White Room, with the best way-wah guitar solos ever…

In the white room with black curtains near the station.
Black-roof country, no gold pavements, tired starlings.
Silver horses run down moonbeams in your dark eyes.
Dawn-light smiles on you leaving, my contentment.

How did they come up with this stuff??

More

The little know-all innocently looking girl knows it, and the smart guy from AT&T knows it too: More is Better. We want more!

Today we got more. Both, from Pádraig and for Pádraig. Have a look! Check out, how he stood, with almost not support! He walked in two different walking machines/mechanism (one was the famous and shockingly expensive ‘Vector’) suspended from the ceiling in a ‘jump suit’ – and we learned why it might be better (at least at them moment) if he continued his attempts to walk with people (rather than machine) support.

Our last day here in Pforzheim for this session of intensive neuro rehab is fast approaching. Each day here it became more apparent why we need more, and why we need more in Ireland – what is the point in trying so hard here and not continuing the effort with the right equipment and the right staff back home?

More!