Diagnosis

I have some bad news and some good news.

Silence.

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.

The Visit to the Opthalmologist

We arrived at 8:30 and left at 10:30, although we spent an inordinate length of time waiting, waiting, waiting.

My sight is fine, but my eyes are not. The orthoptist (?)- Annie - said that my vision was 20/20 with just a bit of confusion between S and B. I should probably get my lens updated and have a largish pair of sunnies scripted too. Glare is not tolerated too well. The glare of a light shining in my eyes caused me to swear at the bloke. We were on first name basis by that stage.

There is a lot of expensive equipment in an eye surgeon's rooms. Annie measured my eyes and my glasses and then started to examine the tracking. That is when she went and got the surgeon, Brian. He did that thing with his finger and the lid of a blue biro - follow around the world, left, right, up down. Again and again. He did it so she could see the nystagmus. Then he went in with the microscope. Follow the yellow brick road again. And again. They looked in the eyepiece. Brian called Kirsten over to look in the eyepiece. I gather both extremities of my eye (they were looking into the left one, but I gather the right one is only worse) jigs around all over the place. This would explain why the end of a street looks like a mirage. This would explain why I cannot judge speed or distance when I am a pedestrian or a driver. It would also explain why I will never drive a car again. I had been trying to explain that I had to check things with my brain not with my eyes. Nothing is automatic any more.

Then he asked me to get up and walk over to Kirsten. I got to my feet and, as I have trained myself, paused for a second or two (but not three) to get control and to ease the ache from sitting that is in my groin. Brian asked me what I thought I was doing. I quipped/snapped that I was getting started! When I got over to Kirsten, he asked me to turn around and walk heel'n'toe back to him. Even looking at his face, I swayed all over the place and he caught me and stopped me after three steps. The same thing happened when he asked me to stand upright with both feet together. Simply cannot do it.

The problem lies within the brain stem. It is a wiring problem within the cerebellum. It is degenerative. I gather the neurologist will expand upon that next week.

Here are the symptoms: peripheral neuropathy, poor coordination and balance, eyesight difficulties, cramps in both legs but mainly the right leg, cramps in all segments of the arm, cramps under stress that envelope the left upper arm and chest wall that resemble angina (but are not angina because my heart is fine), cramps across the back of my shoulders, syncope caused by low blood pressure, vertigo.

That's enough to go on with.

On beauty

Beauty has little to do with physical perfection. Beauty inhabits age; it inhabits decay. A rotting fence post, consumed by lichens, fungi and termites has beauty. A sheet of iron, distorted by weather, ill-used by man and pocked with rust has beauty. A bloom past its best, meltingly brown with weathered decay, epitomises beauty.
Human beauty must house life experience to flourish. This life experience is fueled by intellect, ethics, courage and loss. And each comes in differing quantities: painting beauty a myriad styles. Age alone is not sufficient. Not all aged people are beautiful; nor all young people merely pretty. As Maria twirled into the fabric before the mirror, she felt pretty. Many forms of narcissim are mere prettiness. In the 50s Tony Curtis was pretty, but as he aged his internal emptiness disolved this prettiness into grotesque ugliness. Vanessa Redgrave's intellect and commitment transformed her youthful prettiness into the most becoming of beauty.

Beauty is not the result of makeup, airbrushing or cutting and stretching. Crows feet and creases have an inherent beauty that botox can erase but cannot replicate. Beauty resides within the listener moreso than the speaker. Beauty radiates from quiet meditation rather than the garrulous spotlight. Assuaging an inner emptiness with alcohol, nicotine and amphetamines ravages all prettiness, converting it into a walking grotesqerie.


Beauty grows as a life is lived naturally: without bitterness, with sincerity, without jealousy, with intellect, ethically, courageously and in response to love. Beauty has everything to do with acceptance: of self, of others and of time.