Continuity fields

I had to check the date after reading this short article - "You might be seeing this on a 15 second delay" - in The Sydney Morning Herald today. I am a bit incredulous. Is it the eyes that have the delay, or is it the brain? Fifteen seconds is a massively long time. My oscillopsia is debilitating, yet I suspect the delay is more like 2 seconds. What this report seems to be saying is that our memory is subject to an over-ride capacity. It is not the physical act of seeing, which is a hand-in-glove action of eye and brain. Rather it is what we remember of what we saw. My ability to "see" my environment is deteriorating, but gradually.

I no longer see a neurologist, as I did not seem to fit into their research niche, but was used as a control subject. I never received any feedback, in any of the "experiments" that I endured. I was offered a replacement neurologist, but decided against it once I researched him in turn. He is a long-term collaborator with my previous neurologist. I once asked to be checked out by a second neurologist, but he was so overwhelmed that he demurred to the status of the professor. So, it is not for me. At my new house, I work in the garden a lot. At this time of the year, that means I do a lot of raking of leaves, there being three massive deciduous trees in the backyard. I find it very therapeutic, and enjoy the solitude. However, it does have a deleterious affect upon me.

I can get to the point where I am unable to see. Don't get me wrong. I am not blind. Everything does not go black. However, I am unable to "see" what is in front of me. I stop doing the raking movement, stand still for perhaps 10 seconds, and I can perceive objects again. There is the other effect, too. I think of it as the cracked mirror effect. Perhaps a bit like a kaleidoscope, but minus the origami effect. Imagine a pane of glass with a massive crack. The right-hand-side slides behind the LHS, making the field of vision imperfect. Now multiply that a few times And there are times when my perception of the world is "approximate". I know what is there - or more accurately, I know what to expect - and, hence, I am not immediately transfixed. Something similar happens when I go into the city, which I try to do once per week. The city is a very noisy, very busy place. Both of these factors affect my brain in some way. I walk with a stick. and I always have a shopping-trolley. So, actually I have two-legs and two aids. Yet, I endeavour to shuffle along the building line, so there are only moving objects along one side. Most people cast their sight a certain distance ahead of them, treading confident they know what is in their immediate path. To do that, I have to stop, and look up, and wait for everything to settle into place. When walking now, I mostly look down, about my height in front of me. I only realised last week that I no longer even cast my sight a medium distance. This is where the affect of the sliding plates of glass come into play. It has something to do with movement, my eyes, and my brain. But just what, I have NFI.

Closing in on the infinite

Tonight, on ABC-24 there was an interesing story on Norman Swann's 'Tonic' about vertigo. It starts at the 1:12 point and finishes at the 8:50 point. It talks about vertigo, menieres, BPV, dizziness, and balance. The resident expert is Profesor Michael Halmagyi out at the Balance Centre at Royal Prince Alfred Hospital.

It was interesting, but progressed me no further along my long and winding road to knowing what my own balance issues are. However, yesterday I did locate a short video which shows you what oscillopsia does to my life as I walk anywhere. Distressing, isn't it? All of that is my own reality EXCEPT the shots of the sidewalk from the car. I was going to say that mine is not that agitated. Then I remembered that when I am in a bus looking sideways out the window, I shut my eyes because it is too distressing. When I toured around the Myrtleford area, I could not look out the side window, but had to look straight ahead through the driver's head!

However, I do have something to report to Halmagyi when I see him again. I am not his flavour of the month as my symptoms are not what he is investigating at the moment. He is into something to do with low blood pressure. My blood pressure seems to be okay at the moment: on the high side but not excessively so. However, whilst in Melbourne I had something slightly 'off' happen.

My friend, Diane, had a party at the local pub on the Saturday night. It was a cold night, but I knew the pub would be hot and the 30 odd people would make it seem hotter still. However, I had a long-sleeved top and a pair of pants on. The stress started when I realised that I had eaten too much. I had some of three courses, and I had one glass of wine. Another one was poured for me but I left it untouched. There was finger food to begin with. There were 4 different things and I had one of each. Then there was a main, and I had the gnocchi. There was a dessert, and I had one which I should not have. I was over full, uncomfortably so. I have a small stomach, and this is impacted by whatever is happening with my central nervous system. I feel full very quickly. I should have chosen the gnocchi only. My fault.

So, I was full. The room heated up. I got stressed. I heated up. Then I knew I had to leave. It was 11pm anyway. I was very stressed out, and a friend, Terry, took me home in a cab even though it was a very short way. When we got out of the cab, my legs refused to work. Both of them. Terry grabbed me and hustled me into the house. He said the next day that my legs just dangled. That was the sensation for me too: a pair of spastic legs. However, once he lumped me onto the porch, the sensation in my legs returned and I stumbled into bed semi-conscious. I remember saying to Terry, 'I can't get my legs to work.' Never had this before. So I guess I should report this to Halmagyi. I am not sure if it was the heat, or the stress from the heat and the feeling of overfullness that caused the spastic reaction. I am expecting at some stage that I will lose the ability to walk. Not just yet though.

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.