Karen was still under light sedation, so was sometimes with us and sometimes not. She had less machines around her now, probably only about 4 or 5, compared to about 10 initially.

Most of us could read the machines now, and we could tell when she was awake enough to respond to us, by the main machine. If I recall correctly, it was when her blood pressure increased above 90, it meant she was waking up, not fully, but enough to respond.

As soon as she was awake, she was tortured.

dp:- Karen, stick your tongue out, blink, squeeze my hand………etc etc..

Well, I wasn’t that bad, but we did ask her to do quite a few tricks.

One of the main ICU anaesthetists came to give kp a neuro assessment. Here is what she put….

Comfortable therefore decreased morphine, bartley neuro exam (graphic), flaccid paralysis left arm, left leg (0/5, 0/5), good movement (within limits of immobilisation) in right arm/leg, obeys commands though power 3/5. Upper Motor Neuron lesians affecting brain, high cord, but hard to tell for certain because cannot obey commands to “follow finger”. May have divergent squint right eye, unable to assess sensation

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At this stage, they weren’t sure what was causing the problems with Karen’s left side. An initial CT scan of the brain had showed no problems, yet from day one, she had all the symptoms of a stroke. Here is one of the consultant’s take on it……

CT head tomorrow 08:30, hard collar and head immobilisation to resume till definitive cause for neuro defecit. Probably intracerebral but COULD be high cervical cord. MRI impossible because of exfix – husband aware

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At 6am……………

Appears alert at times but intermittent. – eyes appear to be focussing and following my voice and will intermittently blink on command

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But, by 4pm…………….

Becoming more reponsive over day. No movement on left side. Moving right arm and small movements of right leg. Trying to communicate words, able to nod and shake head

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This was an incredibly frustrating time for Karen and family. Karen was desperately trying to say things, and we couldn’t understand most of what she mouthed. The nurses gave us a “stroke board”

It had a set of symbols on with meanings like “I feel hot”, “I feel cold”, “I am in pain”, “I am upset”, “I am happy”, “I am hungry” etc etc…

We tried hard to get Karen to use this, but being unable to move her arms or hands enough to use it, we had to point to them and say (one by one),

dp:- “Are you cold ?” (pointing to the “I am cold” picture)

etc etc…

Sometimes this worked. It was heartbreaking when she pointed to “I am upset”, heartbreaking.

On the reverse side of all these pictures were the letters A to Z. The idea being Karen could spell out what she wanted to say………………This was equally as frustrating for the same reasons, she didn’t have the strength to point to a letter, so what we would do is lift her right hand up, she would stretch her finger out, and we would (one by one) take her finger to each different letter and say………..

dp:- Is it this one ?

We realized it would be quicker to point at each letter and wait for a nod or a blink. But even then it was PAINFULLY slow, and because it took so long for even one letter, Karen lost her concentration and ended up spelling things like

TOGYZA

?!?!?!

As her strength increased over the next day or so, we tried to get her to write what she meant………… Being so weak, she couldn’t move her hand sideways as she wrote, so she would end up writing a whole word in the space of one letter

I saved all the writing she did………Here are some of the ones which at least we have a chance of decoding……

Any ideas ?

I think these were done whilst I wasn’t there when she was trying to communicate with the nurses. Incidentally, they weren’t all neatly arranged like this, I have brought them all together from a full sheet of A4…..

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Here’s a couple more we struggled with and an idea I had of putting the sets of letters on 3 rows, so she could point to the row her letter was on and then I could go along that row. Cracking idea, but it didn’t work – not enough attention span to find the letter…..

Have a go at this one………………..

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Here is her second go at writing this…………….

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I worked this out – it is to do with Pile Cream of all things !