Here's looking at you ...

These are my notes, and my thoughts upon the various tests that I undergo in an attempt to diagnose my symptoms. I have significant "movement disorder" involving cerebral ataxia, peripheral neuropathy, and bilateral vestibulaphy. I write these notes in an attempt to keep track of the symptoms and their significance. I do not write these notes to evoke sympathy; I need knowledge, rather than sympathy. In and of myself, I am doing okay. I would like my symptoms to be all rolled into something approximating a diagnosis. I do not expect a "cure", nor do I expect a treatment regime. I do half-expect a diagnosis of dementia at sometime in the next 5 years, however. Hence, I am pushing myself through the excellent on-line course devised by the Wicking Centre at the University of Tasmania. Half-expect should more truthfully be three-quarter expect. So, no coo-ing soothing words, please. But if you have any friends/rellies with similar impacts, I would be delighted if you were to comment. On Friday 7 August, I yet again traipsed over to Royal North Shore Hospital (RNSH) this time for a "Nerve Conduction Study" and some video-ing (three vowels together was too much to cope with, hence the random dash). This was at the behest of Dr Con Yiannakis who is a neurologist from Concord Hospital who specialises in Movement Disorders. The neurologist I saw on 24th July was Dr John Parratt, who specialises in Multiple Scerosis, which is a specific movement disorder. I do not have MS, nor Parkinson's (PD), but I do have some of the symptoms of each.

Amy, the technician, and I had a long chat about the category called "technician", and where it fitted into the medical spectrum. Then, she set to work collecting the information to present to the Movement Disorders conference. The patient prior to me screamed each time the current hit, so Amy was assiduous in warning me, which was self-defeating, as my protective instincts kicked in and deflected a portion of the charge producing a dud reading. I told her I wasn't a screamer (Duh!), and she should just flick the switch without warning me, which she did and the recording went off like clockwork. They are looking for any missing evoked potentials, ie nerves that do not react to an electrical charge. In my case, they were studying Sensory Evoked Potential of specific peripheral nerves in both feet, and my right hand. The nerves in my right leg that no longer have the power to conduct sensory impulses are: the Median, the Ulnar, and the Sural. These sensory nerves gave no response, whereas the motor nerves (Median, Ulnar, and Peroneal) returned a velocity within the normal band (40/60 m/sec). I have had a Nerve Conduction test with each neurologist I have seen at clinic.

Dr Yiannakis returned, and was happy with the data recorded. He then proceded to test my reactions and my eyes. I had to touch the tip of his finger as it describes an arc in front of me - arm's length. This is done for both hands, One side is usually more inpaired than the other. In my case, it is the right-side. Touch his finger, touch my nose. I cannot always touch them first-time, and it might take a second to find either his finger, or my own nose. This time my right hand developed a decent case of the tremors, which threw me a bit. I have been noticing body and head tremors, not at rest but under motor stress. This just leads to more stress, until I stop trying and rest instead. This activity was video-ed.

The next activity was checking the tracking of my eyes. I have a lot of double-vision, a lot of eye-ache (caused by "bloating" ?), and nystagmus. The nystagmus was particularly noticeable in the extreme right of my right eye this time. Disconcertingly so. Increasingly, I am inclined to look down at the immediate path beneath my feet. I find I am only comfortable looking up at the way ahead, if I stop all forward progression. I must get my eyes tested again, not having done so since 2007! I broke my round, tortoiseshell glasses. Well, not really broke them: they simply came apart in my hands. However, eye tests are not a good test of how well I see, as they make you rest your chin on a bar, and blinker both sides. This stops all movement of the head which is what causes much of my sight problems. But there is a degree of eye-age over time ... I have mentioned before, that one of my defining characteristics is a cough, sometimes hacking. Often caused by stress, even stress when I sit down at the table to eat. There are now two other symptoms that accompany this cough: An aching pain that envelops the small of my back, to the extent that I feel sure it is going to crack. It is not a shooting pain that flashes, but an ache that envelops. I am increasinly holding the small of my back when coughing and when arising from a sitting position. An excess of saliva that drools out of the right-hand corner of my mouth. Perhaps the excess saliva is always there and when I cough, I lack the ability to keep it inside my mouth.

One final thought for this long post. I am seeing a range of doctors/neurologists. Yet they all seem to have similar office-assistants. Officious. They ring me with one option for an appointment. They bully me by saying they have created the time specially for me, and otherwise the wait would be extensive - 6 months even. They bully me by saying he (invariably a he doctor) only does a specific day at my nearest clinic. The assumption is that I will drop everything and meekly turn up at the date/time offered. This is most annoying! I provide child-care for my grand-daughters. I will NOT drop everything, and rush to the clinic, especially when I know it is primarily to facilitate a conference presentation, or a journal paper. Now to try to find some innocuous photographs, to break up the wads of text. How about some images of the girls over the last two months?

Unlearning how to walk

Today, at the beach, Alannah was doing a great job of slopping jellyfish into her bucket, but she wanted someone to hunt them out with. By the time the water was half-way up to my knees, I knew I was in strife. The tide had just ebbed, but the tug was negligible. It was the sloshing more than anything. Not the noise, but the impermanence of the surface. I did not fall, but it took all my effort to remain upright, and to head for the sand. It left an indelible impression from which I am still suffering 12 hours later. An immense weariness, and insecurity.

I suffer from bilateral vestibulopathy.
I suffer from cerebral ataxia.
I suffer from peripheral neuropathy. But, I am wise enough to wear a pair of reef shoes.
But, I shall probably not go into the water again, unless it is dire, and even then, I know I will be unable to assist.

Just this week I found some posters on the Ataxia (UK) site that reinforced something I had been trying to explain in my own amateurish way back in April this year. A graphic artist developed this series of posters to explain the vision proplems that ataxia suffers endure. I include four of them here: I watch Juliet, as she wobbles across the floor, and know how she feels.

Addendum
I have been thinking about these graphic representations of my declining sight. What I see -or don't see - is not what YOU see here. I do not see colours, nor do I see part of the image displaced in this way. The part of the image that is displaced is just gone - empty. It doesn't sit out there. It is just gone. I do not get the whole picture, there are lateral fingers that have been removed. Say, for instance, that I am looking for my phone. Unless my head is totally still - TOTALLY - I do not get information. When looking for something, one "sweeps" the landscape, yes? This just means that the lateral fingers of missing image are constantly moving. Hence, I have visual information deficit, AND my head gets very confused, causing me to fall or clutch for something to steady it all.