Thursday, December 10, 2009


I have some bad news and some good news.


The bad news is that there is no cure. The good news is that at the rate this is progressing you will be in a wheel chair by the time you are 90.

I did not come expecting a cure. What I am after is a label. I just want to know what it is.

Cerebellar ataxia with bilateral vestibulopathy (CABV).

Well, that's okay then. I came in here convinced you were going to say Parkinson's Disease.

No, it is definitely NOT Parkinsons, nor MS nor Meniere's. What you have is a three-pronged degeneration in your ability to balance: cerebral ataxia is the degeneration of the wiring of your nerves coming from the cerebellum and the effect of this is your poor coordination and wonky gait (ie ataxia) caused by your inner ear which registers very poorly in the audiometric tests; bilateral vestibulopathy means that your eyes (both of them) do not move in synch with your head, they play catch up in a series of saccades, which is why you cannot determine where the other cars are on the road and why you suffered the syncope which brought all this to a head; and, most unusually, you have the peripheral neuropathy which is causing you to have poor balance generally in your body movements. Usually people have two of the three.

Other patients diagnosed with CABV have also had the PN for up to 20 years prior to the ataxia which brings them in for a diagnosis. Whilst there is no cure and there is no medication, we can monitor the progress at least of your sight, which is where the most impact is often noticed.

So he sent me in with two young guys (both doctor doctors, one visiting from Switzerland) who hooked me up to what appeared to be an electric chair and measured and graphed my eye movements. Judging them to be my son's age and amenable to inquisition, I cajoled them into explaining the graph and its implications. Each of these readings is valid for my problem. The graph is not of my eyes but a representative example. Eyes do not follow the track of the head, they play catch up and the wild oscillations are the eyes madly trying to work out where to go next. No wonder the ground appears to bounce beneath my feet when I walk - or drive!

So ... what can be done.

Have you got a walking stick. Well yes ... but ... but hey I bought a shopping trolley on wheels and that acts a bit like a third leg. Good. How about ping-pong are you any good at that? Well, no and not likely to rustle up many people to play against either.

How about Wii ... Yes, yes. Brilliant. And there is a plastic cushioned extra you can get for about $120. Just what you need. Yes that will do it. Otherwise, the physio will give you 50 head nods in this direction, an 50 head nods in the other direction.

What has Prof Halmagyi suggested? He says I have to walk through the dry sand at Bondi once every day. Use it or lose it. The eyes have to be exercised but in a place where if you fall you wont hurt yourself. Groan ... okay.

Also, get yourself a torch. Dont walk much during the dark or at least know the terrain. And get rid of those sandals. All sandals. Look how much they are stubbed at the front. I trip a lot. Mmmm ... You need plenty of rubber under your feet. Flat and well shod. And they need to lace up. And they need to come up to your ankles. Charming, thinks I.

Come and see me again later in January. I will send you my paper on the subject. Then you will have my email for any more questions.

All in all, a bloody good day.


kimbofo said...

Oh Julie, I am so glad you got a diagnosis. The not knowing must have been terrifying. At least now you know what it is and what to expect and how you can treat it. I feel relieved for you.

Hang in there.

Can't wait to see a picture of those new jazzy shoes you are going to buy! ;-)

Joan Elizabeth said...

Julie, a diagnosis and a plan of attack! I can just see you walking through the sand in your lace up boots walking stick in one hand and camera in the other, looking quickly from side to side just in case there is a photo.

Ann said...

Whoa. Never heard of it. But extrememly glad its not Parkinsons and that there are eye exercises you can do. Walking on the sand at Bondi doesn't sound too bad. I'm sure its a tremendous relief now that its got a name.

diane said...

Good news to have a diagnosis but bad news to hear there is no cure. Good news that it is not Parkinsons.Some of the exercises sound OK to us but probably not pleasant for one with your condition. Hopefully they will help.

Julie said...

Walking in the sand at Bondi sounds gorgeous, even though I know it will make me nauseous. I gather I have to go all way along and all way back.

But the hassle is getting there. I have lost my licence permanently. Well, not lost lost ... unable to take advantage of. The first bus leaves outside here at 5:31am. During the next 5 months the middle of the day will be too hot (which I must avoid). So some days I will do morning and other days evening.

Went looking for footwear today. Grumble groan. Bondi Junction is such a snake pit. I will go into the CBD tomorrow.

Got two grass plants, though. Not the silver Fescue but that soft purple one. Shall post it tomorrow if I get time.

altadenahiker said...

I'd play ping pong with you.

Beach sounds like a pleasant prescription. And I see once again you've come up with an instant plan.

Martina said...

Hm, some of these boots are really cool :-D.

Ya, nice to know what everything is about and to be able to act!

My best wishes!

Julie said...

Thanks guys. It's good to have you read along with me.

The boots thing doesn't put me off really. I have seen some really cool looking ones, and the idea of wearing bovver boots with a girly frock appeals to this little black duck. If one has to wear medicinal shoes, then totally challenge the perception of the viewer and give them something to chew on rather than the disability.

Martina said...

Hehe, I was just thinking of a conversation I had some time ago.

(I am about 1.64 and not really 50kg)

One day a colleague looked at me and said: I do not understand why such small and delicate women like you like to wear such heavy boots. Can you tell me?
Me: It's becauce I want the earth's gravity to cooperate properly with me!

Duh, I fear my translation kills the joke, :-(

Julie said...

Not at all. Not at all. The joke comes through loud and clear.

I am 1.55 and 48kg.

Sometime over the last 60 years, there was a desk ornament that had a weight in the base so that it swayed but never lost its ability to stay upright. You could flick it with a pencil and whoa it would nearly topple but once it slowed down it would be upright again.

I will gradually lose the ability to walk independently. Gradually over the next ten years. Right? My size is in my favour, according to the Professor even though friends and family consider that I need to add weight. The shoes will help define for me where my feet are. At the moment, I have trouble determining whether he pushes my toes toward me or away from me.

Walking in the sand will ensure that my "balance system" keeps trying to make my eyes follow my head. At the moment, there is a distinct sense of a radar-pincer-movement gathering information from the proposed trajectory to endeavour to plot a straight path.

Example, walking down a narrow lane bordered on both sides by high walls is a real challenge. I have a photo and will explain in a post.

freefalling said...

No sir.
I don't like it.
I don't like it at all.
It sucks.
But it is what it is, right?
I'm sorry this shitty thing happened to you.
(but i do like your new shoes!)

Julie said...

Yep, exactly. It is what it is and one must accommodate.

Martina said...

Yes, I knew your height and weight from some earlier post, that's why I thought of this conversation I had, ;-).

I am wondering if one can train her brain to adjust to the new situation, make new connections.

Julie said...

I am going to retrieve from my son a copy of "Neuroplasticity" by Norman Doig. Someone mentioned neural pathways at dinner last night. Fifteen years ago, I was involved (with a chap) in neural networks. What goes around ...