A rose by any other name

L to R (and mixing lineage): GGG-GM, GG-GM, G-GM, GM, Mother

No no no ... the naming of the child is their business. Nowt to do with me. I can tell you where they were up to by Christmas day, though. They will find out the sex of the child at the next ultrasound. Not sure when that is - coupla months. The information is there. Nothing they do or say will alter that. So get the information. That reduces the complexity by 50%.

Darren has ruled out any name starting with a vowel. Duh! But his prerogative, I suppose. Kirsten likes Bruno, but I guess B is the new vowel! With a surname of Lynn, Kirsten has ruled out Rita. Its going to be a long six months.

Now for the more important issue - the title of the grandparents. Darren's sister has two little girls, so his mother has laid claim to Nana. Not sure what his father is called. Kirsten's father is going to follow in HIS father's footsteps and assume the title Grandad. So help me out here. What title do YOU think is nice? Here are some to consider, feel free to toss others in.

I do not want to be called Julie or Jools. I want a title, a proper title. Here is my list (that I drew up Christmas night ... *blush*): Mama, YaYa, Mammie, Grannie, Gogga, Nana, Nan, Grandma, Nonna, Oma.

What do you reckon?

Joy of joys

Monday 21 December 2009, 11 weeks

My daughter, Kirsten (30), and her husband, Darren (35), are expecting their first child in the middle of July. The above ultrasound was handed to me in a plain envelope on Christmas Day. Oh joy of joys ...

Here is the first ultrasound of Kirsten when she was "about" the equivalent gestation. Oh joy of joys ...

Friday 19 January 1979, 3 months

And here are glimpses of the delighted parents. Firstly, in my living room after knowing each other two weeks in March 2004. The two smaller images are the most recent I have and were taken this past July at Kirsten's 30th. Finally, a photograph taken at their March 2007 wedding on Shark Island.


Oh joy of joys ...

Plotting a path

Oh boy, did I cop a tongue-lashing! And this was from my friend with MS. If my daughter had sprayed the same opinion there would have been guilt as well as exasperation.

Sunday morning early, I hauled the bod up the rise to Paddington Town Hall to hail a 380 bus as the 389 did not start its service until 8:18 - this being a genteel suburb. By the time we turned from the Bondi Junction interchange into Grafton Street the bus was standing room only, so crowded it was with "young folk". There are immense benefits to having Christmas in summer.

Crossing over Campbell Parade just before 8am, the glare from the ocean was extreme and I made a mental note to get me a pair of prescription sunnies from OPSM this week - EARLY. Bondi is a very open beach with wide expanses of concrete, sand and water none of which are good for sensitive systems. Taking my next set of ankle-huggers off at the top of the ramp, I noted the open blister that I am no longer capable of feeling, tied the laces together and dangled them from my back-pack, already loaded with camera gear and water.

Dry sand quickly induced brain-fog. As luck would have it, for the first half of the beach prone bodies and their assorted gear were infrequent, but the sun was biting even this early, the glare was extreme and the effort required to plot any sort of a path, that alone a relatively straight one, was immense.

The North Bondi half of the beach was littered with bodies and awash with nippers in training. Trying to keep to the dry sand and avoiding outstretched limbs became an exercise in itself. Laughable when you realise that there must be 9 parts of dry sand to 1 part of wet, packed sand! Eventually, I plomped, exhausted, on a ledge in the shade and watched mummies and daddies introduce their sprogs to the joys of the rock pool at the northern end of the bay that is Bondi. It was just after 9am. Bloody hell, thinks I, I still have to get back. You can start to word the lecture yourself, I suspect.

I tumbled through the grill that is my front door a little before 10:30 - this little ramble along the dry sand at Bondi had taken 3 hours, 5 if you count the kip that I now had to partake.

Update - Tuesday
Missed the 389 that passes at 6:01, so up the rise to Oxford Street I trundle only to find that, this being a main peak-hour thoroughfare, the service in the opposite direction is patchy and I had to wait for the 333 at 6:34 and it would not take my pension card SO I HAD TO PAY!!

However, with brain in gear this time, I think I have this routine by the short'n'curlies, if it is permissible to mangle the vernacular in this way. Managed sand-stomping fromn 7 to 8 and home by 8:45 with a litre of milk for my weet-bix. A good pattern could be: bus there (30 mins), sand stomp (60 mins), bus back (30 mins). Tomorrow I will shoot for the 6am local bus and back here by 8am.

Went half way along this time, and returned. Rest. Then did a number of legs from the wet-dry sand divide to the promenade and back. My head and body was exercised and my mind was relaxed watching the (beautiful) people and the (magnificent) landscape.

Volley'd and thunder'd

Canons to the right of me. Canons to the left of me. Or so it seems.

Half-way down this passage-way, at the side of my (below ground) apartment, I am pushing the walls away with the back of my hands, whether to stop them toppling on me or me crashing into them, I am unable to determine. Loathe to keep my eyes open through the discomfort of the ever-moving vision (dear readers, something like a cursor that never quite keeps up with the movement of the mouse and forever has a contrail of its own entrails in its wake - if indeed, contrail and wake are permitted in the one analogy), I squeeze them shut as the walls expand air-bag-like to expel the life out of me, welling the nausea within. I panic to the end, with bP breaking through the fragile facade of control that the flaying hands serve to provide.

Two causes I think. CA = cerebellar ataxia. BV = bilateral vestibulopathy. This later is in the severe range implying that the little hairs that radar the inner ear are well-nigh plucked. The former implies that the nerve pathways through the cerebellum (brain stem) are oops-a-daisy casual rather than wonky and may or may not fire if only they could remember where they mislaid that impulse.

This is a distressing 20m walk akin to walking on the professor's sand, me thinks.

Voila - me new hoofers

The girls and I are shouting ourselves to our Christmas gift to each other this evening: each other's company. This is at Catalina's in Rose Bay. Bit swanky. Bit up-market. Tres expensive.

So I needed a new pair of hoofers, oui?

If I recall the professor opined: rubber on the road, filled in, laces and ankle support without being too heavy.

How about this pair of Converse which the label assures me is "Chuck Light Hi"?

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.

Hut C on Middle Head

This post is a re-write of a post from January 2008 when I drove Dad (Laurie) out to Middle Head to revisit his old army camp for the first time since he learnt to march there on the parade ground.


My father joined the AIF (Australian Infantry Forces) in August 1941, two months after his 20th birthday. He had wanted to join the Navy but his own father's permission was required and that was never going to be forthcoming. The excitement in the car rose as we drove along the road, with Dad telling out loud the things he remembered used to be here or used to be there. As we curved the slope down to HMAS Penguin on the left he turned over me to point out the large sandstone-verandahed house that used to house the officers. It was still there. As was the flat area of land on the turn-off down to Chowder Bay where he and his fellows used to wash their army trucks.


The huts along Middle Head Road are now dilapidated but Dad knows he was in Hut C and we figured that to be the third hut from the left (closer to the Heads). I will go hunt through Dad's photos from that time and see if I can come up with some more information for Diane, who also trained at this same location but some 20 years after my father.

I will go find those photos now as I am going down the road for a chat with Laurie this afternoon and I will try to get him to name the chaps in the photos.