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.

'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.

Plotting a path

Oh boy, did I cop a tongue-lashing! And this was from my friend with MS. If my daughter had sprayed the same opinion there would have been guilt as well as exasperation.

Sunday morning early, I hauled the bod up the rise to Paddington Town Hall to hail a 380 bus as the 389 did not start its service until 8:18 - this being a genteel suburb. By the time we turned from the Bondi Junction interchange into Grafton Street the bus was standing room only, so crowded it was with "young folk". There are immense benefits to having Christmas in summer.

Crossing over Campbell Parade just before 8am, the glare from the ocean was extreme and I made a mental note to get me a pair of prescription sunnies from OPSM this week - EARLY. Bondi is a very open beach with wide expanses of concrete, sand and water none of which are good for sensitive systems. Taking my next set of ankle-huggers off at the top of the ramp, I noted the open blister that I am no longer capable of feeling, tied the laces together and dangled them from my back-pack, already loaded with camera gear and water.

Dry sand quickly induced brain-fog. As luck would have it, for the first half of the beach prone bodies and their assorted gear were infrequent, but the sun was biting even this early, the glare was extreme and the effort required to plot any sort of a path, that alone a relatively straight one, was immense.

The North Bondi half of the beach was littered with bodies and awash with nippers in training. Trying to keep to the dry sand and avoiding outstretched limbs became an exercise in itself. Laughable when you realise that there must be 9 parts of dry sand to 1 part of wet, packed sand! Eventually, I plomped, exhausted, on a ledge in the shade and watched mummies and daddies introduce their sprogs to the joys of the rock pool at the northern end of the bay that is Bondi. It was just after 9am. Bloody hell, thinks I, I still have to get back. You can start to word the lecture yourself, I suspect.

I tumbled through the grill that is my front door a little before 10:30 - this little ramble along the dry sand at Bondi had taken 3 hours, 5 if you count the kip that I now had to partake.

Update - Tuesday
Missed the 389 that passes at 6:01, so up the rise to Oxford Street I trundle only to find that, this being a main peak-hour thoroughfare, the service in the opposite direction is patchy and I had to wait for the 333 at 6:34 and it would not take my pension card SO I HAD TO PAY!!

However, with brain in gear this time, I think I have this routine by the short'n'curlies, if it is permissible to mangle the vernacular in this way. Managed sand-stomping fromn 7 to 8 and home by 8:45 with a litre of milk for my weet-bix. A good pattern could be: bus there (30 mins), sand stomp (60 mins), bus back (30 mins). Tomorrow I will shoot for the 6am local bus and back here by 8am.

Went half way along this time, and returned. Rest. Then did a number of legs from the wet-dry sand divide to the promenade and back. My head and body was exercised and my mind was relaxed watching the (beautiful) people and the (magnificent) landscape.

Volley'd and thunder'd

Canons to the right of me. Canons to the left of me. Or so it seems.

Half-way down this passage-way, at the side of my (below ground) apartment, I am pushing the walls away with the back of my hands, whether to stop them toppling on me or me crashing into them, I am unable to determine. Loathe to keep my eyes open through the discomfort of the ever-moving vision (dear readers, something like a cursor that never quite keeps up with the movement of the mouse and forever has a contrail of its own entrails in its wake - if indeed, contrail and wake are permitted in the one analogy), I squeeze them shut as the walls expand air-bag-like to expel the life out of me, welling the nausea within. I panic to the end, with bP breaking through the fragile facade of control that the flaying hands serve to provide.

Two causes I think. CA = cerebellar ataxia. BV = bilateral vestibulopathy. This later is in the severe range implying that the little hairs that radar the inner ear are well-nigh plucked. The former implies that the nerve pathways through the cerebellum (brain stem) are oops-a-daisy casual rather than wonky and may or may not fire if only they could remember where they mislaid that impulse.

This is a distressing 20m walk akin to walking on the professor's sand, me thinks.

Voila - me new hoofers

The girls and I are shouting ourselves to our Christmas gift to each other this evening: each other's company. This is at Catalina's in Rose Bay. Bit swanky. Bit up-market. Tres expensive.

So I needed a new pair of hoofers, oui?

If I recall the professor opined: rubber on the road, filled in, laces and ankle support without being too heavy.

How about this pair of Converse which the label assures me is "Chuck Light Hi"?