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.