The Prospectory agenda (assuming we were ever formal enough to have such a thing) suffered a significant set back when Peter was diagnosed with Motor Neurone Disease in December 2017.
Having said that, our combined interests in technology and psychology are getting well exercised as we learn how to adapt to living with Peter’s progressive loss of muscle power.
Some things we are learning for the first time; others we are re-encountering from experiences over the years in technology research. Here are some examples:-
Single function wins every time
I confess to a long term dislike of multi-function devices. They lack affordance ( an object’s visible or tangible properties that signal clearly the actions users can take with it), e.g. door handles, push buttons, hooks, sliders or well designed screen icons). In contrast, multi-function devices require a user model – “what will it do?” and “how do I make it to do that?”. You can find yourself in the ‘wrong’ mode just when you need to act and sometimes the different modes interact in unfortunate ways.
So, here’s an example. Peter can no longer turn the lock and open our front door. Generously funded by the ever wonderful NHS, we were assessed for appropriate technology support which was installed some months ago by the private technology company who design and manufacture it. Unfortunately, it’s a multi-function system designed (at least in principle) to control a whole range of household functions mainly via an app on a dedicated ipad. – TV, lights and phones as well as the front door .
The best thing is that the “system” includes an independent single function radio fob. You can hang it round your neck and press its one button (from anywhere in the house) to open the front door. It’s perfect for our needs except you can’t distinguish between friends and axe murderers (not that we have a lot of these in rural Wales) before opening the door to let them in.
But the all singing, all-dancing ‘system’ includes an intercom with the doorbell so, in principle, you can talk to the caller to establish their identity before opening the door to let them in. But, unfortunately you can’t do that from the radio fob. And the doorbell, rather than sounding a loud bell in the house, causes the ‘phone (well at least one dedicated handset) to ring. If we don’t happen to be in the same room as the handset, we don’t hear it or, if we are otherwise occupied and think it’s a phone call (which it kind of is albeit with a different ring tone) we might leave it to go to Voicemail to pick up later – all while some poor friend, delivery person or even would-be axe murderer is stuck waiting on the
doorstep. If you hear the ‘phone, what you are meant to do is pick it up and you can then speak to the intercom. You can’t actually open the door though. That requires the ipad or the key fob. So, embarrassingly, we have had to sellotape a sign on the intercom bell pointing to the old (less conspicuous) doorbell which we need people to press if they are guaranteed to get a response.
The function which seems to really excite the suppliers is the TV automatically muting when you answer the ‘phone! However, unfortunately if you are using the ‘phone when the doorbell goes, it interrupts the call completely not offering the chance to ignore it or explain to your ‘phone caller what is happening.
So, we’ve switched off as much of the system as we can and are just happily using the simple radio key fob. Ironically though, the lock on the door having been changed, Peter now finds he can now open the door by hand!
Physics 101 for MND sufferers – Friction vs slipperiness
If you have very poor grip or muscle function, then suddenly textural properties of everyday objects gain huge significance but they have to be the right way around. Friction when you need slipperiness means things get stuck and slipperiness when you need friction means things get dropped or can’t be picked up at all. So, we have switched to fleece jackets and coats with slippy nylon linings and silky night shirts because otherwise, you’ll never get them on or off or (in the case of night shirts) be able to turn over in bed. But the opposite (friction) is what you need when you can’t squeeze your fingers together to create friction and you need to pick something up or open a jar. And friction is also useful (we discover) for working one’s socks on by pushing the foot against the carpet or to work one’s trousers on by lying on the bed and wriggling!
This kind of easily obtainable grippy material is invaluable.
Physics 101 for MND sufferers (cont) : Skeletons are invaluable
There’s nothing like losing muscle function to discover the value of your skeleton! The trick is to find ways of using your skeletal structure instead of using muscle. A skeleton is arguably like a table – it’s a strong and stable structure which, physics will tell you, involves no energy to support a weight. So, Peter can carry surprisingly heavy things as long as his arms are straight and we’ve found a way of attaching them to him which don’t require grip! If the arms are bent at all, it won’t work because then muscles are involved. As Peter happily explains to people, a dead horse can carry the same weight of rider as a living one – it just won’t take him anywhere!