Today I reminded myself that I need to plan stuff and then follow that plan, check on progress, and – most importantly – cut down the list to a manageable level. It’s easy to get me going on exciting ideas, at times there are so many brilliant ideas that it is difficult to let some of them go. For years, if not decades, I’ve periodically decided to cut down on things and to concentrate on what are the important things, the really important things, and to start moving away from what just looks important. Needless to say, I never managed to do this. There were four exceptions: when each of our kids were born, and last June. In a weird, wonderful, sad, and amazing way, Pádraig is giving me the courage to do what he once wrote to me when he was a kid. (I’ll get back to that another day.)
Nurses and doctors are so supportive of Pádraig, it’s nothing short of amazing. They share our believe that he is making progress and are telling him and us to be patient, to recognize even the smallest step of progress and to realize how all these small steps will be adding up to one giant leap for Pádraig one day. They continue to work on the speech valve and his swallowing and are planning to increase the time he uses the valve instead of the ‘standard’ breathing through the trache over time. A doctor today said that his leg and foot are definitely getting smaller, slowly but surely, which means that he is dealing well with the thrombosis. Another really important change over the past week or two is that Pádraig’s heart rate came down what I would call almost dramatically to close to normal. It’s hard to say why this is happening, but it can only be good. Friends keep visiting, keeping him company, and many are in touch with us planning their visits to Hamburg. It is a truly humbling experience. The energy, the love, the support, the good humour in what are really sometimes desperate times, the believe in a better future – if man can shape destiny, Pádraig will go down in history as the prime example of what friends can make happen for you.
In the meantime, I have started to work on three important issues that I believe have to be raised in connection with Pádraig’s accident:
- the empty promise of insurance companies to young students going on a J1 to the US, and how they can be rained in;
- the open season declared on bicycles on Cape Cod, and how that can be stopped;
- the lack of adequate care and support for ABI patients in Ireland, and how that can be improved.
We believe that the SUI will take up the issue of insurance; I am in the process of writing an article for a well-know publication in the Boston area on accidents involving bicycles on Cape Cod; we managed to get some press coverage on what I would call forced emigration of patients from Ireland.
Unless you work in computing or localization, you might not be too familiar with Unicode and ISO 10646, both encoding system for international characters for the digital world. You might not be too familiar with ISO either, although this is one of the world’s most important standard committees. Well, through dealing and wheeling, Ireland’s representative on the 10646 committee managed to get the ISO to agree that they would provide digital encoding for Ogham – an ancient Irish writing system. One of Pádraig’s friends left a message for him and a reminder to stay strong: it Ogham, and it says Sláinte, Health.
Today’s German Music Tip
Hannes Wader, Dat du min leefst büst (1974). One of Hannes Wader’s most beautiful songs in ‘Plattdeutsch’, the language (the dialect?) of Northern Germany.
What’s hot
Sláinte
What’s cold
Breoiteachta
The German word/phrase/verse of the day
Illegale Steuertricks (from the recent cover of the Spiegel magazine)
Twitter: @forPadraig
#caringforPadraig
http://www.caringforPadraig.org
Upcoming events: http://www.caringforPadraig.org/events

Hello, Reinhard,
Delighted, as always, to hear about how Pádraig is doing.
I’m not at all surprised to hear that you have focused your energy into the three areas you mentioned. I could see it coming!
Nor am I surprised to hear, once more, the news of Pádraig’s friends and their support of, and loyalty to, him.
With best wishes,
Louise
Thank you, Louise, as always, for you kind words and support! – Reinhard
Hi Reinhard,
I’m so happy to hear that there’s more forward progress – so very encouraging… as are all the friend visits!
I have a few thoughts about your 2nd goal. Perhaps I could help bolster your efforts from over here. I would love to hear about/read the article you are going to write (which publication will it be in?) Perhaps that would be the perfect entree for me to contact my state elected officials to explain what happened and see what can be done to make sure it won’t happen to others. In particular, I’m thinking that it should be law that everyone wear a helmet while cycling. (It’s law for minors under 18 to wear them, but I’m not sure why it’s not also a law for adults.) I thought it was already law, but that’s for motorcycles…
These are the current laws for and about bikes in Massachusetts:
http://massbike.org/resourcesnew/bike-law/
Often when laws are enacted because of something that happened to someone, it is named for them. I’d like to see “Patrick’s Law” to see that less cyclists end up with traumatic brain injury. (Though I don’t know whether helmets help that much in the case of what happened to Padraig.)
One other thought I have, is to start a petition to shame the insurance company to pay retroactively. At worst it publicises their unethical behavior and how they sell policies and then choose not to cover perfectly legal activities. Sometimes if petitions get a lot of signatures, then the media picks up on the story… I’d recommend this site, here is an example of one of the petitions on it:
http://www.change.org/petitions/total-health-care-karen-oberg-has-terminal-cancer-don-t-turn-your-back-on-her
I would like to try to help from here and coordinate with your efforts. Also if we could get American interest in the story perhaps we’d get more blog followers and donations. Just a thought.
Hugs to you and Pat (and Padraig)!
Diane
Great ideas, Diane! I will need a week or so to get something started and put some basic information together. I thought I’ll use the website to do this. We could then connect again and see what the best course of action would be. – What do you think?
Many thanks for your offer of help!
Reinhard
Sounds like a plan. (I will be away for a week and out of commission a bit longer, so if you don’t hear back from me for a while, it is NOT lack of interest.)
Sure, Diane. We have plenty of time to do all this, and thank you for your offer to get this going! – Hope the week of is pleasure, or at least leisure! – Reinhard
Yes, it’s a vacation. We’re going to visit my parents in Pittsburgh, Pennsylvania. They recently moved into a 3-category senior living community (i.e. independent living apartments, assisted living in a different area, and ‘nursing home’ level in another area) I’m very happy that they are thrilled to be there and having a very social time with the friendly residents. Will be good to see the place and see them (and show Pete where I went to primary school).
Sounds like a lovely trip, Diane, for you and Pete, and, I am sure, for your parents too. Being able to live as independent as possible as long as possible is the way to go. When Pat and I were visualizing our old age (still a long way to go!) we were thinking of a little village in Spain, close to the sea, with lots of good friends, food and wine, books, records (!), daily newspapers from around the world, internet, art house cinema, in a house or several houses close by each other, with as much help close by as necessary. Enjoy the trip! – Reinhard
p.s. I won’t be offended if you’re not interested in any of these ideas… there’s just brainstorming…
PS: Well, something will need to be done. Just a preliminary thought on your two ideas: (1) I researched and read a lot about bicyclists wearing helmets and having to wear helmets; about their usefulness generally and in cases of accidents; and about the way this is perceived. The issue is more complex than I had thought initially. But it’s a very important point. (2) Pádraig’s travel insurance was bought in Europe, and I am not sure how petitions work here. However, I strongly believe that students need to know exactly what they are buying before potentially finding themselves in deep trouble in case something serious happened to them while abroad. – Reinhard
I didn’t realise it was not American insurance – I see your point on that. I’ll follow up with you about where I might be able to help. I look forward to talking more about this in a few weeks.