Sunday, July 3, 2011

'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.


freefalling said...

No wonder you go flat out.
You gotta fit it all in while you can.
Sleep when you're dead, hey?

I get what you say about "it just is".
Well, kind of.
My Mum has a similar attitude to life. She just takes everything in her stride.
She had the bozie cancer about 4 years ago - she was like 58ish - and it didn't really phase her in the least.
I tend to react to things like a blowfly in a bottle then when I've exhausted myself I have to lay in a dark room with a cold compress.

I WAS however disappointed to hear you don't hit anything (or anyone) with your stick.
We have a ahem...colourful lady in town (amongst other things, she wears satin short shorts down the street in winter and she's 75ish) and when I first came to town I was waiting in line at a shop and I noticed her walk in the door - I didn't stare at her and barely gave her a glance but she mustn't have liked the cut of my jib, coz she whacked me with her umbrella and said "are you looking at me?".
I knew then I had made the right decision in moving to Ararat!

Are you scared of getting dementia?
How long have you got til that "experience"?
Do you believe in euthanasia?
Just a few "light" questions for you.

brattcat said...

oh, julie, this has just been such a crummy old year in so many ways for you and your family.

Julie said...

No no. Not really crummy. Not in that negative way. I am thinking about my response to Letty (above). Her questions cause me no angst at all.

Everything that happens in one's life is an opportunity. Sure, I wish Kirsten did not have to go through what she is going through. But this also is a case of 'is', and I am really proud (can one say chuffed in this situation) of how she is growing from what is mercilessly being thrown her way.

She and I are looking at life standing at different poles. One of the harsh things about her tumour is the suddenness of revelation. Whereas I have known of the PN since the early 80s and the MGUS since 1996. Did not know there was a confluence, but knew they were fellow-travellers.

More later today. Have to go to my French class now. Last lesson for Term 6 making about 120 hours. Wuhoo!!

Ann said...

I admire both you and Kirsten tremendously. Until reading these last 2 posts, I hadn't understood how far the affliction had progressed. To be out and about with you, you just wouldn't know.

Letty, have you read:

With a red hat which doesn't go, and doesn't suit me.
And I shall spend my pension on brandy and summer gloves
And satin sandals, and say we've no money for butter.
I shall sit down on the pavement when I'm tired
And gobble up samples in shops and press alarm bells
And run my stick along the public railings
And make up for the sobriety of my youth.
I shall go out in my slippers in the rain
And pick the flowers in other people's gardens
And learn to spit

You can wear terrible shirts and grow more fat
And eat three pounds of sausages at a go
Or only bread and pickle for a week
And hoard pens and pencils and beermats and things in boxes

But now we must have clothes that keep us dry
And pay our rent and not swear in the street
And set a good example for the children.
We must have friends to dinner and read the papers.

But maybe I ought to practice a little now?
So people who know me are not too shocked and surprised
When suddenly I am old, and start to wear purple.

Julie said...

Love that Joseph poem, Ann. I have read it somewheres before.

Letty, I did not always have this attitude. I think it developed after some issues about 12 or so years ago. When I used to do, was anguish over things that had occurred. Why had I not seen it coming? Why did I let it happen? How can I change it? Then I realised that I could not change it, nor could I have stopped it from happening. This is not any specific 'it' - just events that happen. A realisation that the world is different and that all one can deal with is what is to come, not what has went. Bitching about the past just wastes the now, and eats the future.

I like the lady with the satin shorts. There are parts of me like her, and parts distinctly not.

Julie said...

Letty : when do I think the dementia will become obvious. I don't know.

Sorry. Joke.

I don't know, but I am 63 now, and making plans for how I want to live the next say 12 years. I am on a list for two 'care' places. Both thus far 'independent living' but they are attached (whatever that means) to 'assisted living/low care' places, too. I think my balance will not be crash hot within 5 years.

So, I am organising accommodation. I am redoing wills. I also want to put in place a 'living will'.

This is all stuff that my father did not do very well. He thought he did, but he didn't. And he left everything way too late.

Julie said...

Letty - euthanasia.

I think I have come full circle on this one, having experienced my father's death with him. My faher's life for his last 3 years was not what I would wish for anyone. But it was really what he had backed himself into. I don't want to live like that, but his actual dying was not too bad.

I thought about joining 'Exit International' but having received some of their emails, I simply could not be bothered thinking about it. The hassle is that the closer one comes to having to make the decision to go or stay, the less one can discuss it with anyone for fear of legal repurcussions for them.

I think that I am about 10 years for any serious decisions having to be made.

Joan Elizabeth said...

I try to imagine what all that bouncing vision would be like ... your description helps.

freefalling said...

Yeah - it's the quality of the living bit, isn't it? Not the actual dying bit.

Living wills are interesting, aren't they? I remember when Nan died, she had been diagnosed with a brain tumour and she said - no, I don't want any treatment, I'm ready to die.
I don't think any of the family even questioned her decision. She was pretty old though.

I always thought it was funny Vince's parents had their coffins already picked out and their burial plots sorted - Natalie picked a place under a tree coz she knows I like trees and struggle in the heat - so I could stand in the shade. Funny.

I knew you wouldn't mind these questions - I love your openness and forthrightedness(is that a word?).

freefalling said...

Ann - haha - that's fabulous - especially the bit about eating 3 pounds of sausages!
Although, I'm not too keen on the spitting bit.

Kay L. Davies said...

Julie, I'm so glad to know you. I'm so proud of you, and I know who gave Kirsten her amazing attitude.
(In the July 1 photo "oscillopsia" you look like Katharine Hepburn.)
Luv — K

Kay, Alberta, Canada
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