Spending some time in bed and feeling slightly better, I had some time to think about what we took away from those three weeks in the Therapy Centre in Burgau. All completely subjective and all related to Pádraig’s and my experience, even if they were ‘general’ take-aways.
In general, it’s clear that the bigger a place becomes, they more difficult it is to keep the culture, the agreed approach, the way to work, the way to deal with each other. Institutions, the bigger they get, the more it is likely that they develop a self-dynamic that is difficult to stir in the right direction.
There is a huge benefit in covering as many different angles as possible. And that is complex in the case of very severe ABI. Their focus on certain established approaches to therapy is really good, but so is the inclusion of neuropsychology and research, for example around brain computer interfaces. Before it all gets too complex, it is important to get the basics absolutely right: sleeping, personal hygiene, eating, getting up, daily routine. Then you branch out.
In Patrick’s specific case, there are devices that will allow him to communicate better, to move around better, to get fitter, to become more independent, to exercise his body and his brain, to participate more in life, to take more control over his life. None of the cost of these devices would ever be questioned if we were talking about drugs. In fact, the cost of these devices is less than the annual drug bill of thousands of patients undergoing ‘routine’ treatment in areas such as coronary or renal diseases.
We learned about aspects of physio and OT we had not come across after five years of Pádraig being treated. One outstanding example is the importance of the stabilisation of his torso. And do provide him with some support to help him keep it as straight as possible is crucial, for breathing, eating, swallowing, head control to name a few.
We learned that the connections between his brain and his limbs are intact and will start functioning again if they are retrained. We learned that his EEG is as normal as mine or yours and that he is able to understand and think about certain activities and to imagine carrying out these activities in the same way you or I would do it. Meaning that if we managed to ‘translate’ his brain waves into ‘commands’ carried out by a device, he could think about switching off the light, and the device could switch off the light, for example.
We learned that he is medically healthy.
We learned that he badly needs more mental stimulation, much better means to participate, to influence, to comment on, to direct “life”.
I learned that there are so many things that could be done, very few are. And that we cannot do them ourselves. That Pádraig needs motivated, trained, experienced profesionals.
Now I just have to find a way to turn these lessons into a living space.
Shouldn’t be too difficult.