26th February 2011

Good news! Helen has improved a lot. It's a bit mysterious to understand - I must say I wish I felt there was an all knowing, all powerful wise and caring health provider giving an overview to our situation (this person doesn't really exist outside my fantasy - no serious reflection on the actual health providers involved). We can deal with anything but the ongoing guesswork and uncertainties are so exhausting.
Current theories: she did seem to have a urinary tract infection (which can affect mental state) but after 3 days on the correct antibiotic there wasn't much improvement - more just a stabilising state; she might have had a virus - dry cough and conjunctivitis after we had a baby to stay who was sick and whilst I had viral symptoms; she might have some peculiar ongoing inflammatory process which was revealed by stopping steroids on the 8th Feb. Against the steroid theory - she was only on a tiny tiny dose for months before stopping, various specialists suggested stopping it and thought it could not be doing anything useful at this stage, she didn't seem dramatically worse until ~ 10 days after stopping it (when she had probably caught the UTI plus/minus virus). For the steroid theory - she improved enormously after 2 doses of steroid. Started again (at a higher dose) on the 24th Feb. Also for - she started to develop pink spots over her torso, arms and face again which looked a bit vasculitic and which she used to have earlier in the illness and her GP theorised that she may have had a vasculitis affecting her brain (probably induced by cancer hormones) which caused the original mania. Another theory (my own) is that having been on steroids constantly in one form or another since Sept 09 her own body's capacity to make a steroid response to stressors is totally downregulated or absent and getting UTI/virus sent her over the edge into Addisons.
Anyway as you can no doubt see the lack of anyone else seeming to be in charge or thinking about all of this means that I think about it all a lot! The bottom line is she is so much better now - alert, able to have interesting conversations, eating, no problems swallowing. Not sleeping all day long. Able to walk safely to the toilet. Still intermittently confused but a bit more like she was in Melbourne - yesterday developed the belief that she was in an "office" and couldn't let go of this.
On Thursday her friend Marlene made a long visit and Mum was able to enjoy all of this which was really lovely as she hadn't seen Marlene for many months. Other enjoyable events of the week included visits from Shirley and Lil (recently back from showing her work in Indonesia), a Vision Australia "Quality Living" telephone group (the first one), listening to talking books and the company of Natalya (my friend from Melbourne who has come to be Helen's carer for a week).
Mum has said several times of Natalya "I think she's lovely" which makes it much easier for me to go away for a bit - plus the fact that Natalya demonstrably is lovely and also that Helen has stopped deteriorating and in fact improved!
I am now in Hawaii of all places - for a week - visiting my friend Shannon and family who normally live in Seattle. Louis will come to Darwin to take over from Natalya on Monday and I will return to Australia and Darwin a week later.
Hence this blog will lapse for a week unless I learn anything important long distance.