Saturday, July 25, 2015
|Last March I came on board with another neurologist, one new to me, my fifth since 2000: Ray Garrick, from St Vincent's Clinic in Paddington; Stephen Reddel, from the Brain & Mind Research Institute in Camperdown; Michael Halmagyi, from the Balance Clinc in Royal Prince Alfred Hispital in Camperdown; Simom Lewis, also from the BMRI in Camperdown; and, John Parratt, from the Neurology Department at Royal North Shore Public Hospital. They each made progress of a sort, along a pathway that interested them. Clinical medicine is not clear-cut in many cases. |
It is complex; my symptoms are complex. They fit nothing in particular, yet everything in general, viz Multiple Sclerosis, Parkinson;s Disease, CANVAS, SCA3. Halmagyi was working on the premise that the syndrome he labelled C A N V A S (cerebral ataxia, neuropathy, vestibular arreflexia syndrome), fitted me to a glove. His most recent paper gathers together about 80 sujects with the full range of symptoms. I have not read this paper yet, nor am I one of the participants. So, what are my symptoms? In no particular order:
|The very first time I can remember a symptom was leaning on a fence at the old West Pymble Swimming pool watching my daughter jump in the deep end of the 50m pool, while my son was standing chest-deep in the learners' pool. They would have been about 6 and 4, which would make the year 1985, and make me 37 years of age. This was 30 years ago. I felt a tight band of elastic around both my ankles, which I now know was the start of the peripheral neuropathy. The next symptom to come along was the cough. It would invariably engulf me at the dinner table, and I was told not to try to talk while I ate. A very effective way of muzzling me. My children maintain that it was definitional: they knew where I was at any given time, because they could hear me.|
The worst symptom or many years was the peripheral neuropathy, which is a bit of a misnomer, as there is nothing peripheral about it at all. It is everywhere. Through my trunk. Up and down both arms and legs. In my scalp. Across my eyelids. Aound my lips. Everywhere. However, it does not bother me as much. Fifteen years ago, when I took my shoes off after a day at work, the pins and needles would explode out of my feet, in masses of painb. Probably the same thing happens now, just that I no longer able to feel it. My worst symptom now, would have to be my eyes. They get very tired, very dry. I have to blink excessively, and rib my eyelids.
So, what did I learn today, and where do I go next.
|Parratt's team had collected together all my files from previous neurologists. So, now we have base data. There are a lot of nerve studies in this documentation. There is an MRI which is now just over two years old. In March, Parratt opined that my symptoms indicated an SCA (spinocerebellar ataxia), without specifying which of the 31 (and counting) was the most likely. He indicated that he could offer me a genetic test to narrow it down. Today, he was not so sure it is an SCA. He has been convinced that the CANVAS testing/results are the way to go. So, he is going to come at the issue from a number of different angles.|
The SCA pathway, for mine, is a good one to downplay, or eliminate. SCAs, nearly all of them, are dominantly inherited, meaning there is a 50% chance that offspring will inherit the problem. A good one to give the flick, but not unrealistically. However, the SCAs have been sujected to genetic testing being developed for them. So, Parratt needs to know if it is contemplated that a genetic test could be developed for CANVAS. All these neurologists know each other, and most of them work in and around labs at The University Of Sydney.
Some bloods were taken today to send to Parratt's lab over at USYD, to test for antibodies for autoimmune diseases. This will then be studied in conjunct with the data collected over 30 years.
|Every other Wednesday the neurology department at the hospital has a presentation. Parratt is hoping his team can work my history into a presentation as Professor Carolyn Sue will be present 2at the next one and she is an authority on mitochondrial disease, which my symtoms may also describe. |
Then another doctor was brought in who specialises in dystonia of the neck. Consensus all round that I exhibit locked/cramped neck muscles (hence the coughing) and affected eyelids, hence the blinking and the inability to keep my eyelids open. However, this chap reckons he can assist me by way of two Botulinum toxin injections, one in the neck and one in the forehead. Each injection has a cycle which takes 12 months. My hackles went up immediatelty, but I am keeping an open mind ... until I understand the details.
There is also another conference, this time at the Park Hyatt, down at The Rocks, in the second half of August, when a visiting specialist from the UK will give the Keynote on movement disorders". Parratt intends to work up a video of my symptoms, and a PP of my tests, to present.
So, let's see if any of this eventuates.
Note: The images were all taken around the grounds of Royal North Shore Public Hospital, in St Leonards. I went into the chapel after my four hour session, for some peace and quiet. Only for a Mass to start within minutes. Both my children were born at this hospital, but I think that little maternity cottage, alack, is no more.
Monday, April 13, 2015
|It is School Holidays here at the moment. We have just started week 2 of a two week break. This is for Alannah who is in her second year of Pre-school. Juliet is at Day-care, and they only break over Christmas-New Year. Along with this, they both caught a bug over Easter which caused vomiting and yellow noses. Charming, reallyt!|
|We seem to be coping though, with minimal disruption to the work commitments of their parents. We are hreavily into drawing, Alannah and I. Not colouring in, but designing, and creating out own images. I will pull some in and show you where she is up to. I am quite pleased with her ability to deign and implement that design.|
The work on the left was completed in March, and on the right in April. This week her creations are being overwhelmed by the fact that I showed her how to do 2, 3, 5, and 8 the way they will in school next year. So these symbols are constantly cropping up in her drawings.
|Not to forget Juliet. When she is not adding the finishing touches to my masterpieces (she has learnt that her life is not worth fiddling with an Alannah masterpiuece!), she is going on a hectic circular scrawl as below. She holds a pen remarkably well, with good control. She has only sucked the ink out of one texta that I know of, and is very careful about putting the lids back on.|
Saturday, March 21, 2015
|I asked if I may take his photograph.|
He instantly made it a deal with the devil.
With a few practised swipes with his longnailed index finger, he raised his iPad, and we double-clicked.
The pleasure was all mine, Pieter.
Saturday, January 24, 2015
|The waiting is over. The results were all clear.|
And, no cancer.
|I am sitting back taking it easy this weekend. My intestines were absolutely voided, and it is painful to fill them up, trying to push out all the air they inflated them with to get their camera around the multitude of s-bends (now I understand what that s really stands for). I am also having trouble with my balance, more strife than usual. I thought I could just traipse into the city today to go to the Museum of Contemporary Art. I honestly believe I would have fainted with the effort.|
I asked both the nurse and the anaesthetist not to use Gentamicin. He was a bit taken-aback, saying one would only use that if the patient had some sort of patch in their body. I then told him about the teflon in my heart. And, BANG. I woke up in recovery.
I have the Fecal Occult Bloods done again in two years, and if positive, have another Colonoscopy. I am not irritated by the false positives one little bit.
Sunday, January 11, 2015
|I enjoyed this film, which I saw at Dendy Opera Quays at 9:30 Saturday morning. At that time there were very few people in the cinema, even though I'd had to queue for my ticket, so something was popular.|
Yes, I enjoyed the film, even though it is not even bordering on a classic. I suspect that both "The Imitation Game", and "Mr Turner" well and truly have the edge on it. This, however, is a ripping good yarn. Just like McCullough's "Thorn Birds" is a ripping good yarn - just don't read it after "Anna Karenina", which I did once, eons ago.
There is mysticism in this film. Divining water with either a forked stick, or a pair of wire rods (Connors implement of choce) is pretty other worldly. When I lived on a farm as a wee slip of a thing, my father had a water diviner come in. Desperation will do that to one. His name was Charlie Asimus, and he stepped it out with his forked stick, much to our delighted sniggers. Dad had a machine did a hole, and found water. But it was brackish, and only of use to the veggie patch, not the house.
But, Connor's mysticism extended further than just finding water. He had flashes of life "appear" to him. This happened while he was on the Gallipoli cliffs. I thought this to be one of the better parts of the film. However, once he realises one of his boys did not perish, the story gets away from Crowe. Crowe doesn't have much range in his facial expressions.
There are many hints of Indiana Jones in this story, from the outfit that appears glued to Connor (sans whip), to the wild chase through the markets, to the scenes around Istanbul in general. The portrayal of another culture is fascinating, even though it is only the more wealthy parts of that culture that pervades the second half of the film. The scene in Istanbul's blue mosque, although gratuitous, is awesome, in the classical meanining of that word.
|Check for me please, but I think, right at the beginning of the film, the Turkish Major comes out of a tent, ready for the final charge in December 1915, sipping coffee. I felt certain he was sipping it from one of those modern cardboard cups, instead of whatever the Turks drank out of at that time.|
Joshua Connor (Crowe's character), had three boys who were at Gallipoli - Lone Pine actually, on 7th August, 1915. This, of course, is only early in the war, and the Army was still insisting that recruits be of full age. So, let's say Crowe's sons were 21, 23, and 25. This would make their father 50, give or take. Joshua is a water divineer, and well digger. He is a big bear of a man, but he is not battered enough. The part in his hair is bloody immaculate! Yes, yes. I know Crowe himself is 50. But the two lives could not be more different.
It is in the chasing down of his still-surviving, elder son, that Crowe becomes unstuck. The shooting up of the train, and the mad chase by the marauding Greeks, down to the bullying of the British attache. Then the chase up the mountain, and jumping into the well to escape down the rushing mountain stream. Give me a break. The jump down the well nicely links back to the well Connor dug in western Victoria, but this, for mine, served to emphasise how far-fetched the story was becoming.
Which leaves us with the boarding house in Istanbul. There didn't need to be a romantic interest. The little boy is important. The fact that many Turks did not like Australians is important. But introducing the woman detracts from the other meanings that Crowe might have been tying to tease out. And the final scene ... yetch! Crowe smiling his beautiful smile, with his gleaming pearly whites. He was a hard-scrabble farmer from the Wimmera area. Read some of the poems of John Shaw Neilsen for the complexity of this sort of life.
I have an issue with the thick, sludge coffe at the end, too. When the woman "read" his empty cup, earlier in the story, Connor had had to swirl the coffee and gulp it down before giving her the cup, which she promptly turned upsidedowm. No sludge there. Yet, the sludge appeared at the end, even though its meaning eluded me. A host of little issues where Crowe was fashioning scenes on the fly.
I would give this a 2.5 to 3. My next film will be "Still Alice". I have seen four films thus far this summer, so my next film at Dendy will be free.
My Old Lady (22 Nov ****)
Mr Turner (21 Dec ****)
The Imitation Game (3 Jan ***)
The Water Diviner (10 Jan **^)
Saturday, January 3, 2015
|Being a film viewer, rather than a film maker, I hesitate to pan my second film in so many weeks. I am not an expert, but I do have opinions, and they must be given an out. So here goes ...|
This film lacks structure and it lacks purpose. The creative folk scriptwriters, producers, director) had not bitten the bullet of the true enigma they were dealing with. The name of the film tells us that much. Talk about being hit in the face by a wet fish!
This film would not have been made if Alan Turing had not been a homosexual. The Dam Busters was made in 1955. So there can have been few state secrets involved with that one. But it was a straight forward action film. This one would have been harder to mould because it is about a bunch of geeks in a hut, working on a whirring machine. Turing's life-style and death, make the story interesting, give it a moral core. But they did not grasp this nettle.
There are two tweaks with linear time. We are given the back story of Turing's first love at school: a boy named Christopher, who mysteriously died. This is done with a number of cumulative scenes. But all limp-wristed. Sex doesn't get a guernsey during the entire film.