I selected eleven CDs from Simon's collection and took them in for him today. Universal approval! Not sure if I got lucky or have got better at reckoning his eclectic tastes. Butch Hancock got the number one spot, wonder if this blog might push up the demand for his recordings. Simon was able to load a CD by himself, and through a process of trial and error he finds the start and stop buttons (these are small and difficult to see). We had some deeper conversations than usual today, Simon is worrying about the length of time that he has been in hospital and whether things will improve. He told me he didn't want to be dependent on me. I explained that this was not the case, financially, and at present the hospital attends to most of his needs. I tried to explain the goals that he needs to achieve in order to get transferred to rehab, this included sitting in the chair displaying good balance, and being able to get out of the bed without so much assistance. Simon understood all of this and seemed willing to work towards those goals. He was dejected when I told him honestly that he might be a long time in a wheelchair but perked up when I explained that I would have the wheelchair designed Formula 1 style, with the seat perfectly moulded to him. I have a design in mind already, electric powered (possibly solar) with inbuilt wireless computer, Ipod, phone, surround-sound speakers in the headrest, monster tyres, alloy wheels and go-faster stripes just need to find a manufacturer with a sense of style and humour.
Rick, in the opposite bed, may go to rehab on Tuesday. He was wearing his new track-suit today. Simon wants a track-suit as well, and seems to think that if he has one he will be able to go to rehab. Have track-suit, will travel.
I spent the morning filling out all of Simon's visa forms, these need to be lodged very soon, and I have a Justice of the Peace coming to the hospital on Tuesday to supervise Simon's signature. He was able to write his name again today. Also he wrote a sentence which started: "I would like to ... " I couldn't make out the rest. I am going to take a laptop tomorrow and see how he goes. I know that his mind is still good because he insists on me taking away the rag of a free newspaper that gets delivered to him each day. "Rubbish" said Simon. Quite right, I am trying to find a supplier for the Herald Tribune (from USA) which he particularly likes. There are still times when he makes bizarre (for me) connections. For example, today he gave me the number 3838, this does not mean anything to me but if anyone out there recognises the significance of that please sing up. Malcolm, may have some insight here, his brain has spells of switching to higher mathematics and physics. If I can make the connection I can easily cope with this, maths is natural territory for me.
His nurse had arranged to get Simon out of his bed for his evening meal, and again tomorrow morning for a shower, so Simon will be busy and should sleep well.
Poor Skippy, our cat, got locked in the shed all night (my fault), I heard him wailing when I got up at 7.30am. He shot out like a rattlesnake, then proceeded to wolf a bowl of kangaroo mince faster than I have ever seen him eat. This done, he went to Shirley's bedroom to dob me in! Little does he know that he has to go to the vet on Thursday for his vaccinations. Shirley is going to help me to bundle him into the cat-box but I expect to be well scratched, and he will show me his dot for at least five days...
Some advice for anyone who's interested. Make sure that, in addition to making a will, you appoint someone to have Enduring Power of Attourney on your behalf. This is easy to do when you are well, most people nominate their spouse, or a trusted friend / relative likely to outlive them. It costs very little to do, in fact in Australia you can get a form from the Post Office and just have it witnessed. Simon had not done this, and so I have to apply for a hearing with the guardianship board and provide detailed reports about his medical condition, his financial situation, our relationship, and other interested parties. It will take weeks to do this. So get yourself an EPA right away, even if you are only 18 years old.
My love, Marian x
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Dear Marion,
ReplyDeleteControl panel,
either "printers and other hardware" or, if available, "mouse"
Check box to "switch primary and secondary buttons"
and you have aleft-handed mouse.
There is a longer way to do this through "acessibility optins"
Love from Guardino (ASher's dad)
Hi
ReplyDeleteIts good to see Simon making associations (tracksuit=rehab). He seems to be coming on well.
With the numbers there may be a degree of semiotic confusion (i.e.giving priority to words that he wouldn't normally do) First steps in everyday life would be the obvious.
How old is he? Could this be part of a telephone number? Part of a password? Whats his office extension? With his current obsession with tracksuits, is 38 his size?
Try repeating it to him today 38, 3838 and see if he remembers. It could just be 'noise'.
Knowing his computer background, lets work from there.
The first thing I would do is convert the whole number from Hex to Decimal. This would give the number (3838=14392).
If 14392 means nothing, 3838 from decimal to hex = EFE.
Then break it down into 2 bytes = 38 hex = 56 decimal, 5656 or, alternatively 56+56 =112 decimal.
Thats the first thing I would do, basic conversion into something he is likely to know or it may be overriding his language centre. I know an Autistic woman who could 'talk' in prime numbers. It was lucky they committed me that weekend as she was being treated as impossible and I spent an hour with her then realised that she was giving prime numbers, each one larger than the one before. This was a stroke of luck, as Glenside is nobodies idea of a picnic. We couldn't work out meanings, but reciting some primes to her calmed her mood and she had the benefit of better care.
Early stages, as I have said, it could be 'noise' or just a sound when he thinks he is expected to comment. I wouldn't worry about a single occurence on one day. Try it again and see his response.
Keep me in touch, I have many ideas, these are the most basic (please make 2 wheelchairs. I wouldn't be able to resist getting one myself...)
peace
Hi Meagan
ReplyDeleteWas meditating on The Great Man's problem and an old semantic idea came up. Lets test his reactions to certain word combination. You just say them and see what he does. He should enjoy the game.
The first that came to me was 'Dead Cheerleaders Rule America' all of those words have strong values.
peace
Malcolm
Hi Marian
ReplyDeleteIn couple of your posts you've mentioned Simon's natural concern about whether he will improve and presumably whether he can make a full recovery. You might like to look at a video made of an American neuroscientist, Jill Bolte Taylor, who had a major left-brain stroke in her late thirties and observed her own journey from a high-functioning adult to an infant re-learning language etc, and back again. She is a bit of a wacky, hippy-dippy lady ... but she is clearly still a high-functioning whacky, hippy-dippy lady and equally clearly was a whacky, hippy-dippy lady before the stroke. I tried to put the link here but this xxx blog told me that a 'tag' is not allowed but you can easily google it; it's on the 'TED' website.
She has also written a book on her journey to recovery which may inspire and contain some useful ideas. Here is part of the blurb from the Amazon website:
Jill Bolte Taylor, a thirty-seven-year-old Harvard-trained brain scientist experienced a massive stroke when a blood vessel exploded in the left side of her brain. A neuroanatomist by profession, she observed her own mind completely deteriorate to the point that she lost the ability to walk, talk, read, write, or recall any of her life.
In My Stroke of Insight: A Brain Scientist’s Personal Journey, Taylor brings to light a new perspective on the brain and its capacity for recovery that she gained through the intimate experience of awakening her own injured mind. Using her knowledge of how the brain works, her respect for the cells composing her human form, and an amazing mother, Taylor completely repaired her mind and recalibrated her understanding of the world according to the insight gained from her right brain that December morning.
Love Tom