The road we hoe

This has been a tough week, with tougher weeks to come. On Tuesday afternoon, I received a call telling me that my brother was 'not well'. The call came from his neighbours on the share-farm out of Port Macquarie. Generally speaking, they each mind their own business and might not see each other for a week or more at a time. I have been known to ring them and get them to check on him when he doesn't answer his phone. This time it was not hard to diagnose the problem; I could do it over the phone. He had suffered a stroke. I spoke to him on the phone; he was hazy and non-communicative. Apparently, it had happened maybe 4 or 5 days earlier and he was wandering around confused and hungry.

A neighbour took him into Wauchope Hospital and he was quickly transferred into the Stroke Ward in the Port Base Hospital. Which is where we found him on the Thursday.

The gerentologist left us in no doubt as to the severity of the stroke. The left half of his brain in nearly totally destroyed. And there is a haemorrage into the dead areas. All caused by an irregular heart-beat for which he was getting inadequate care. All they can do is prescribe bed rest. No medication or surgery will solve the problems. He can walk, but his speech and understanding are grossly affected. And the clots will continue to be thrown off, causing more infarcts. If he can survive the next few weeks, the seeping blood has a chance of being reabsorbed.

This week coming he will return to Wauchope Hospital, and the social workers will decide where he will be placed for future care - either hostel or nursing home. He will not be returning to the farm here he has lived for the past 28 years. We were out there on Friday. Very sobering visit. We have a potential home for his dog, Free. We have engaged a neighbour to slash around his house to keep the bush at bay. He will also get Barry's car inspected once I have paid the green slip.

We have to do all the organising bits with no legal standing whatsoever. I guess we throw ourselves upon the Public Trustee. So good that we had the long weekend together at Lake Cathie just two weeks ago.

Barry is 66.

Day 3 (Thursday) - Doing the side-step shuffle

I guess it had to happen that I would feel down eventually. Not depressed, as such. But I know this is just playing with language. Just that at the moment, I live every moment. I am aware of the passage of every minute. Usually, when I stuff things into my life, time simply whizzes by. At the moment, I am rushing somewhere all the time. I have to write it down each morning, to ensure I meet the times and the commitments I make. But still time drags. It's okay. By the morning I will have kicked byself up the arse, and given myself a lecture that this is not about me. I want her better. I want it fixed. But to achieve this, what she requires is TIME. Give her time. See, the arse-kicking is underway already.


Today, I spent time with Kirsten immediately AFTER they had moved her to the chair. And she had no energy left. She communicated very little, and mostly her eyes were shut. Her heart rate hovered around the 70 mark, which is Darren's ball park for nearly asleep. I guess this is the best scenario for healing. She knows we are there, and yet she is also 'sleeping'. I showed her the book, and asked her if she would like me to read it to her. I think I said I did not mind if she slept. Which I didn't. When I showed her the book, I got some body language that meant, to me, 'get on with it'. So I did.

I read her the first chapter of "Pastures of the Blue Crane' where Ryl meets her grandfather, Dusty, and learn they have inherited the old Masterton place up at Bundoora. Tomorrow (Friday) I will visit from 3pm for maybe 60 - 90 minutes. If she is up to it, I will try to read Chapters 2 and 3. This is a story Kirsten knows backwards.


Today Kirsten's face was the worst I have seen it. But (kick, kick) I knew the swelling and the bruising would come out with time. I knew that. I knew that her left eye would shut. That her left socket would appear to sink back, but only in comparison with the swollen tissue around it. I did not realise that the skin on her forehead would swell.

Her lips are swollen and dry and require pawpaw ointment. But her hands and fingers look good. They are good colour (she is fair-skinned). They are not bloated. They are not parched. When I see her tomorrow, some of the tubing should be gone. Maybe the three drains in the neck. Maybe the drain in the leg.

I will go for a long walk early tomorrow morning, and gee myself up. Promise.

Where did I get up to with WBY? Ahha, my favourite - Verse 3:

May she be granted beauty and yet not Beauty to make a stranger's eye distraught, Or hers before a looking-glass, for such, Being made beautiful overmuch, Consider beauty a sufficient end, Lose natural kindness and maybe The heart-revealing intimacy That chooses right, and never find a friend.

'Bouncing vision' made manifest

'Bouncing vision' is an attempt to explain the term oscillopsia. Because of an irregularity within the vestibular system, the eyes of people with 'bouncing vision' do not keep track of targets well, lose them, and have to hunt around to lock onto them again.

When I walk, my head bounces on my shoulders - so does yours! This is called the 'doll's head reflex'. You know those little Elvis dolls on the dashboard. Bounce. Bounce. Bounce. Your eyes follow the bounce of your head so close to instantaneously it is imperceptible. My eyes don't. There is a delay. The target is lost, I can't find it, I look for it, all the time walking forward. The ground (or the gutter, or the approaching bus) rears up in front of me and I, understandably, lurch.

In hunting around trying to explain all this in an understandable way, I found some videos that might help. Serendipitously, the videos were made by the chaps at RPA, and use the technique that they use on me. Disease of the vestibular system is 'vestibulopathy'. This can be unilateral or bilateral - because there is a system behind each ear! I have bilateral vestibulopathy.

This first video shows a chap with unilateral vestibulopathy. I will use the term right meaning to the right of the screen - NOT his right. And similarly for left. Okay? When his head is jerked to the right, you can see his eye have to adjust. When his head is jerked to the left, his eye is there nearly instantaneously.

This second video shows a chap with bilateral vestibulopathy. His problem was caused by exposure to a drug called 'gentamicin' which mine wasn't. But you can see the hassle here in both eyes. They have to adjust, they have to find the target.

Remember, there are four issues feeding into my hassles. Issue 4, I will discount first. Well, not so much discount, as simply not go into, because I don't know where it fits in except that there is a correlation between people with Issues 1 -3 and Issue 4, which is a raised paraprotein in the blood. This was first uncovered by a routine blood test in 1996, and revealed to the Balance Team at RPA when they got my history from the Balance Centre at St Vincents, where I had been attending to have my toes and fingers 'electrocuted' in 2002 - 2005 whereupon I got jack of it all and simply went AWOL. The biggest problem I had at that time was the peripheral neuropathy. In summary:

Issue 1 is the peripheral neuropathy (PN)
Issue 2 is the Bilateral Vestibulopathy (BV)
Issue 3 is the Cerebral Ataxia (CA), and
Issue 4 is the raised paraprotein, also known as MGUS (Monoclonal Gammopathy of Unknown Significance).

And the pattern here?

The PN affects my walking because I lose track of where my legs are because they are sending my brain less information. I still have good 'proprioception'. I know where my legs should be. Like a phantom pain in an arm that has been amputated.

The BV affects my walking because of the ocillopsia and the bouncing vision.

The CA affects my walking because that is what ataxia is - disturbed gait. The cells are being lost from the vermis between the two halves (how many other halves are there?) of my cerebellum. My step is not smooth, and my feet when they come down can cross over the hypothetical centre line of the forward progress.

Yet to come, so they tell me, is the affect on my speech known as dysarthria and the affect on my memory known as dementia.

Repeat after me - O S C I L L O P S I A

Tuesday really was one of those days where one is in a bell-jar, looking at life through a distortion, and with ever decreasing air to fill one's lungs. But the human spirit is largely insurmountable.

As I shuffled over to Royal Prince Alfred Hospital (RPA) to meet with the mythologic Professor M. and his acolytes, I caught a glimpse of my own self in glass-plated display windows - a caricature of an old woman, head bowed, eyes fixed on the path ahead, stick to keep her upright, grey coat tightly clasped around her, backpack bowing her shoulders lower. I allowed a wry smile to play at the corners of my mouth, less in bitterness, than simple recognition.

Professor M. was not his thorough, mindful self; something was preoccupying his mind. There were a number of subjects in the Balance Centre at the same time. However, both Luke and David were their usual chatty selves. Professor M. did not give me the lecture about the value of the hiking pole vis-a-vie the walking stick. The need to have an adjunct to proprioception rather than merely walking in a straight line. He accepted that I had a need to not walk into walls or onto roadways, if I could avoid it. He mentioned that I should not walk barefooted, but ensure that I had, at the least, sandals covering the soles of my feet. Twelve months ago I endured a lecture about the need to dispose of all my sandals and invest in flat, canvas shoes, with laces which come up past my ankles, Converse and their ilk. So ... Professor M. was out of sorts.

David went over each leg with two amateur devices: a deliberately broken spatula with a long jagged slither; an unwound paper clip in the form of a horse-shoe with each end about 2.5 cms apart. To me, it seems random, but then again, I do not know where the nerves are closest to the surface – and, besides, my eyes are shut. I know he must be poking the things into me somewhere because there are seconds of silence. He writes it into the open book on the desk. I have no ability anywhere to discern that there are two points to the paper clip. Whereas David contends that he (he catches himself before he says ‘normal people’) can discern the points where about 3 mm apart.

Then, I throw them into disarray with my coup-de-grace. I have a new experiment for them, and whip the hair dryer from its hiding place in my back-pack! Da-hah!! They stare dumbfounded. I am, at the least, worth the admission price.

I set about telling them of the morning that I could not figure out if my toes were dry, got down the hair-dryer to complete the job, only to realise that it was neither blowing heat, nor air, which was daft, because the orange mat on which I was tottering was being blown every-which-way. Major disconnect: my brain could not comprehend what my eyes were telling it. Neither foot could feel the heat. Neither foot could feel the wind. From the tip of my big toe to just below my knee. Except. Except for a narrow vertical band on the inside of my left calf. So I did the full motza. Crotch, belly, shoulders, face, upper and lower arms. All much better. I no longer know what ‘normal’ is. The palms of my hands were less, the backs of my hands less again, but both still better than my legs. However, neither buttock was much good. Probably not as bad as my legs, but a good deal worse than my hands. This could explain how sometimes it feels as though I am sitting on the bones of my pelvis.

The three gentlemen doctor researchers were entranced and tried it on themselves, realising how hot it became I bore the brunt of another lecture about being careful; a lecture I had already given to myself.

Having then remained seated for over 30 minutes, I was wobbly in the extreme when they asked me to shuffle over to the examining table and hoist myself up for the obligatory eye-tracking exercise. ‘Twas here that I first heard our word of the day – oscillopsia. Two tests involved here. First a tracking device connected wirelessly to Luke’s hand-held, which shines a red light on the far wall which I have to track with my eyes and his computer records the trajectory. Secondly, Professor M. jerks my head to one side and then the other, and both he and David peer into my eyes watching the nystagmus settle down.

Oscillopsia can be defined as ‘bouncing vision’. Say you are walking down the street. With every step you take, your head will jiggle, and your eyes will adjust to where your head is now pointing, in a split second manner bordering on the instantaneous. My eyes do not make this adjustment seamlessly (or even seemlessly!). They have to hunt around to determine where to look in a desperate search known as ‘saccades’, think of the print-out generated by an earthquake. Hence, the term ‘bouncing vision’. Everything appears to be moving, to be rearing up to meet me. I am not certain where to put my foot down. You saw the liquefaction of the earth’s surface in Christchurch. Bingo.

Now, there are complications to this – there are always complications to everything! It is not my eyes causing this. My eyesight is okay. I have it checked annually and really only get new frames for the same old lenses. The hassles are within my brain and within my vestibular system. These hassles within my brain cause my peripheral neuropathy, my bilateral vestibulopathy, and my cerebral ataxia. And there is a scientifically significant statistical correlation between subjects with these three ‘hassles’ and a spike in paraprotein.

More on oscillopsia and where it fits in, or otherwise, tomorrow.

Patience and strength

I shall probably get yelled at for that top image.

Some of you will already have a heads-up for this, and this be but an update. For others, I apologise for the blunt manner.

On Monday, my daughter had day surgery at Westmead to investigate a lump on her jaw and to do a biopsy. The results of the biopsy will be given to her next Tuesday at her next appointment, if not earlier. Mostly they call this a tumour or a cyst. It sits like an octopus draped over her left mandible, chewing through her jaw and her teeth. The jaw is paper thin and, in parts, non-existent. The surgeon remains confident it is not malignant. But is unable to identify it until the biopsy results are in.

Today I asked Kirsten if I might put this post up, and direct you to her own blog which she started yesterday. She is a stickler for objectivity and plain speaking. She could not find this anywhere on the web about what her 'condition' was, so decided that she would assist those who come after her.

Her blog is called Marsupial Mum. She explains why. You are welcome to leave her a comment, which she will try to respond to.

These photos were taken last Sunday arvo at the Union St playground in Paddo. Kirsten was trying to convince Alannah that she could come down the slippery-dip without holding her mother's hands. Needless to say, the child breezed down with flying colours.

Something free - from the government

Today was slightly sobering. I had to surrender my driver's licence which I obtained on my 17th birthday when the local sergeant of police got me to drive him up to get his morning paper. That was in 1965, and I was in Fifth Form in High School - not long out from doing my Leaving Certificate. But ... who's counting?

Not sobering sobering, just slightly sobering. I have not driven for 12 months. I only surrendered it because it was due for renewal. Anyways, I asked if I could get a Photo-Id.

And blow me down - it was free!