Keep the date: Saturday, 18 June

We’ll start with a movie.

10:30 Lighthouse Cinema, Screen 3, Dublin

Would you rather be dead? (Wärst Du lieber tot? – German documentary with English subtitles. “Best Documentary” German TV Awards/Deutscher Fernsehpreis 2011.)

Following the movie, we’ll have some informal lunch with plenty of time to get meet old friends and make new ones.

In the afternoon, most likely from around 2:30, we’ll meet for a conference to discuss the An Saol project with international experts, politicians, and those affected.

A more formal and detailed announcement will follow.


Today, I decided to do a bit of a risk assessment myself. For whatever reason, I got angry with people having to do a ‘risk assessment’ often causing what I would call a ‘denial of service’ for Pádraig, either temporary or permanently, for no logical reason. What really gets me is that in most if not all cases the risk to be assessed is one for doctors, therapists, and PAs (carers).

While the risk to carers standing Pádraig up in the tilt table had to be assessed, NOBODY assessed the risk for him NOT being able to stand up, to bear his weight, to ‘walk’. The risk for him of not having the right equipment to do all this. The risk of prolonged bed ‘rest’. The risk of not having regular physiotherapy, never mind neurological physiotherapy (a 20-30 minute effective session per week, most weeks, not every week, is clearly insufficient).

So here is a list of the effects of bed ‘rest’:

  • Psychological effects
  • Physiology
  • Cardiac effects
  • Fluids
  • Water balance
  • Diuresis, natriuresis and dehydration
  • Skeletal muscle pump
  • Stroke volume
  • Cardiac deconditioning
  • Postural hypotension
  • Respiratory effects
  • Lung volume changes
  • Structural changes
  • Haematological effects
  • Blood viscosity
  • Erythropoiesis, red cell mass and total haemoglobin
  • Oxygen transport
  • Virchow’s triad
  • Potential for emboli

If you think: wow! Incredible! I wasn’t aware of all these risks!  — Think again, because this is just Part 1 of the ‘effects’ of bed ‘rest’. Part 2 examines the effects of bed ‘rest’ on the digestive, endocrine, renal, reproductive and nervous systems. You can find it all here, (if this link doesn’t work, try this) together with an exhaustive list of relevant scientific references.

For an alternative view, you could check here: “Effects of prolonged bed rest”. The introduction to a long article with loads of details states: “Bed rest” may sound like a gentle, healing process, but this is deceptive. Our bodies are made to move, and multiple problems quickly start to set in even after a couple of days of immobility. DAYS!!!

So, if professionals know this but they or the service they represent don’t act accordingly, what is that?

If someone (a doctor, a therapist, a …) observes a low level of oxygen in Pádraig after months of not standing and in a situation where he receives virtually no (effectively about 20-30 minutes in some weeks, none in others) adequate physiotherapy, should they be surprised? Or should they have moved heaven and earth to get him the right equipment to get him standing and get him moving on his feet timely and together with sufficient and adequate physiotherapy? And if they don’t do this, what is that?

If not a terrible risk for Pádraig. – And if it is, what are we going to do about it?