When we started this blog we subtitled it “then and now”. So far, we’ve focused on the first few weeks. From now on we’ll dodge around a bit and update to stop you getting bored.
At times it’s good to have no feelings.
Gill regularly had to bring work home in the evening. Although this had been going on for years, I now realise it was simply long-term planning to give her an excuse to transition from competent carer to noticeable ‘don’t carer’ as she sneaked off to her work station.
My own coping strategy was a natural instinct to be helpful. I had been out of hospital about a month and just upgraded from a small wheelchair for use indoors to a walking frame. It was a lot more effort to stay upright but more effective. With my right side not working, the wheelchair tended to go around in circles.
Attempting to find a job that hadn’t been done already, I reached the kitchen. The dishwasher was running happily. Then I noticed that there were a few items on the drainer to be done. I was excited: I could help. I hand-washed a couple of pans and dishes using my wayward, unfeeling, right hand to try and support things while my left hand did the clever bit. The knives were next. I noticed the washing up water was turning pink. This was hard to understand until I took my right hand out of the bowl and realised the flesh on the pad of my thumb was hanging by a something like a stamp hinge and bleeding profusely. I stopped collecting stamps when I was nine years old but I remembered the principle.
I called Gill to alert her that there may be a problem. She came rushing into the kitchen, she squeaked and she eeked, then dashed out saying she’d get a wound dressing. This took some time as she first looked in the place where the serious plasters should have been. A few more minutes later she tried the place where they actually were. This gave me time enough to set the missing piece of thumb back in position. A good day. A bit of drama and excitement and I had saved my wife having to wash up. It healed beautifully, and I didn’t feel a thing.
Hmm. This all happened over six years ago, so what’s going on now? Today, Terry is no more likely to cut himself washing up than I am. And, come to think of it, he’s more likely to be doing the washing up. RESULT!
So how and when did he acquire a much better sense of touch? (And n.b. I am talking here about touch, not sensation – that’s for another day.) Hands take AGES to improve. Loads and loads and loads of repetition. Therapists tell you this and they are horribly right. Which comes first, movement or sensation? Chicken or egg?
6 weeks after the stroke we got out the plasticene. Guess who did the egg.
Stage 1 Hopeful…
In the first months we did hours of exercises designed to improve the hand’s awareness of what it was grasping. Classics like:
In all of these exercises, a good option is to try it with the disobedient hand first, then use the normal hand to verify. The theory is that one hand trains the other.
Also, once you’ve tried it blindfold, open your eyes to look at the object as you handle it, and re-unite your senses.
Stage 2 Disillusioned…
It’s fair to say that we eventually stopped doing the ‘what have you got there’ games because Terry found them so utterly demoralising. For a long time he really couldn’t feel the difference between a cube and a sphere. A tennis ball seemed to have edges.
We re-visited these exercises intermittently.
Stage 3 Hang on though…
When I was a teacher my all-time happiest moments were when my students learnt stuff behind my back. There is something very joyous in this. And I’d say that, when it comes to touch, Terry has regained that sense on the sly. It’s maybe piggy-backed on all the work he’s done to improve mobility.
(Being uncompromising probably didn’t do any harm. Early on he made the decision that he wasn’t going to use specially adapted cutlery, no matter how much he struggled with a knife. And although he has to do many things left-handed, he has always engaged the right hand in dressing, washing, and other everyday things.)
The other thing that teachers know is that you don’t fatten a pig by weighing it – i.e. frequent tests of themselves don’t guarantee learning. Overdone, they can be de-motivating and anxiety-inducing. If something that starts as an exercise begins to feel like a test, back off.
Over the years Terry’s brilliant brain has slowly learnt to touch without being scored out of ten.
So, the message is don’t give up, but don’t obsess either.