I think we almost got sun burned today. After another early start, a long day of therapies, and lunch, we sat out on the centre’s famous balcony looking out over the Schwarzwald (where did it get its name – there ain’t anything ‘black’ about this glorious forest). It’s all about Vitamin D, we had been told. But – as Baz Luhrmann had told the ladies and gentlemen of the class of ’99 – “wear sunscreen” is what you do, whatever else you might be up to. Well, we didn’t and we just escaped a little red faced but without a burn…. pphhh!
To give you an idea of the day.
I get up and get ready myself. Then I do the same with Pádraig. I help him with breakfast in the centre’s Bistro.
This may sound like nothing, but, just to put it into perspective: at home, we have two PAs (carers) arriving at 7am. One leaves at 9, the other at 10.30. There have been days, when they finished washing him and giving him breakfast by 9.45.
Therapies start at 8am. Let’s say we start with speech therapy, followed by cognitive therapy at 9.30, followed by three hours of physio at 11, followed by an hour in the Lokomat at 2pm, and a very late dinner/lunch at 3pm, finishing that at around 4pm. They told us we could use the MOTOMed with arm trainer in the afternoon – just before Abendbrot (evening meal) starting at 5.30. During the day, I’m the assistant therapist and make sure Pádraig gets enough drink/water and food. I also look after whatever else he might need. At the end of the day, it’s bed time, time to get undressed and go to sleep.
Apart from the help in the morning (5 1/2 person hours), Pádraig get’s another 2 hours at lunch time (should be two but is one PA at present) and a further hour (by two PAs) in the evening.
In terms of therapy, he gets a visit once a week from his community physio and from his community speech and language therapist. The sessions when they work directly with Pádraig are rarely longer than 30 minutes, often shorter. Once a week.
What I find amazing is that I can do all this. I can’t do much more than this because there isn’t enough time, but I can do this. In other words: one person can do all of this. And, apart from the therapy, it’s not only not exhausting, it’s actually the most rewarding thing I can imagine to be doing. It’s stress free and there is no hassle. I feel I am doing the right thing.
And this is what life is all about. Isn’t it?
PS: Just in case – what they do here in Pforzheim with their intensive therapy is a ‘booster’, it cannot be and should not be done over prolonged periods. What does need to be done over a prolonged period and in between these ‘booster’ sessions is regular, meaningful and sustained neuro rehabilitation of about 15 weekly sessions – something along the lines of what An Saol is proposing with its pilot project.