Friday, July 1, 2011

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.


freefalling said...

Man oh man.
Does it give you the shits?
(ahem. the metaphorical type.)
How in the world do you do all you do?!
Makes me feel like such a sook - boohooing about bs in my life.
You're a tough cookie.
Do you ever feel sorry for yourself?
Do you ever smack things with your stick?

Julie said...

Does it give me ths shits - nope. Not in that way, but I could do without the neuropathy which is wearing.

How do I do what I do? You might note that Sydney Eye is focussig more on my immediate neighbourhood.

Nope, never feel sorry for myself. I am 63, which is much older than millions of people ever get. Even when I cannot be entrusted with Ally outside the apartment alone, I don't feel sad, sorry, or angry because it just 'is'.

Never ... but the stick is very useful for poking things and keeping lift doors open and stuff ... it is a magnificent conversation starter, being a magnificent stick.

brattcat said...

aye yie yie, julie. aye yie yie yie yie.

Ann said...

Goodness. From wandering around with you I would never guess the problems were at this level. The way you compensate is unbelievable.

Joan Elizabeth said...

You are an amazing lady ... so much get up and go. I have been thinking recently of all the stresses and burdens you have been bearing of late and admire your resilience.