Sunday, October 18, 2015

As men age ...

Barry, my big brother, had a stroke in November 2011, which left the majority of the left frontal-hemisphere of his brain swamped by blood.

The gerontologist at Port Macquarie hospital refused to treat him, as he could tell from the destruction that drugs were the cause. TheHead of Rehab at Wauchope hospital, discharghed him 6 weeks after the stroke, when absolutly no rehabilitation had occurred. His language was imoaired, he laughed inappropriatly, and he toiltted into drawers. His MRI was redone toward the end of 2012, and there was no difference from the MRI immediately post-stroke.

The veins in this part of his head, could no longer contain the blood, having been thinned and weakened by nearly 50 years (1966-2011) of taking any drug that he could come across.

He suffered from delusions, and hallucinations before the stroke. The hallucinations (seeing the virgin-mary, and demons crawling out of his own belly-button) have eased, yet the delusions (neighbours, and the government tapping his phone, and opening his mail before resealing it) have been replaced by more plebian ones (other residents stealing his belongings).

Yes, I agree "as ye sow, so shall ye reap". He made his bed, and now he has to lie in it. So what? He grew up in the same house as me. Why him? There is no answer to this, and no point really. The thing is: where to now?

In the first half of September, with the advice of the RN, Will, I agreed to Barry being taken to Gosford Hospital to have his stomach pain investigated. This was the very day I forced myself to see my GPO to try to circumvent another round of IV pneumonia treatment. Ross'n'Robyn visited him, and were told that he had urine retention. The low potassium was not discovered until the end of this 5-day stay.

He was released back to the faciliuty with a catheter draining his urethra, via his penis, to a bag attached to his leg. He was/is not in the least comfortable with this. Nor does he understand it. Whenever the catheter drains his bladder, he still says he needs to go to the toilet. Yesterday, I was forever asking him whether it was for a wee or a poo. like I was talking to a grand-daughter!

He doesn't understand the process, that alone the cause. I tried explaining to him that it is an issue that many men have to contend with as they age. But, new information does not get absorbed by his brain. The facility does not classify him as suffering from dementia, as he has few of the disruptive behaviours. Not that I would wish these upon him.

So, Friday just gone, Ross'n'Robyn, once again, took Barry to see the urologist in his Gosford rooms. The prostate is enlarged, and there ius total urinary retention. He will be started on potassium tablets which will take about 3 months to kick in.

Now comes the bit I am unsure about. There are three treatment possibilities, and I describe them in order of severity:
  • He could be trained to deal with his own treatment, ie continue the catheter from the penis, just train Barry how to empty it, and how to keep it clean. This is the least invasive treatment (no general anaesthetic for starters), given that all treatments are goiung to be uncomfortable, and embarrassing.
  • A small amount of the enlarged prostate could be "singed away" via a device inserted up the penis. I think this still involves the on-going use of a catheter, but not sure why. Perhaps a prostate helps keep the bladder in place somehow. There is anaesthetic, and recovery involved here.
  • The entire prostate could be removed vis an incision in the lower abdomen. Once again, this still involves a cather, but from the incision point, not via the penis. This is a full-blown operation with about 5 days in hospital. To the best of my knowledge, Barry has never had surgery before.
So, there is a lot for me to learn, and to find out. Ross has the urologist's report coming. The urologist recommended that we try them in order, and start with trying to train Barry re his own care. As such, Ross has booked him in for a session at the Erina Continence Clinic.

When Baz was cutting his toe-nails yesterday, I noticed the bag on his leg, and asked him to let me have a look. He is used to my blunt ways. The bag was filled to the top, and this was about 10 o'clock in the morning. I know he drinks very little, if any, water. So my guess is that it was not emptied when he woke up. We went and asked an assistant to empty it for him, which happened immediately. But HE did not think to look, nor to ask. This is my concern.

Now to the renovation of the facility. It has changed just sooo much in the 2 1/2 years Baz has been a resident. Two-thirds are now "ageing" residents, and one-third is "dementia" residents, in their own gated memory-support unit. Both inside, and the gardens are fully separate. I have gone into my thoughts, and further ideas in a FB post. But here are some of the responses from Barry, and how I am able to use some of the changes to make him feel more at home.

In a corridor, not far from his room (4-bed share)), there is a print of Peter Hayward's "The Quiet City" (1960), which shows a street scene in Greenwich Village in Lower Manhatten, New York. We chatted about it, knowing how he would have loved to be a painter. We talked about the stoops, the brownstones, and especially, the flower seller. Now that I know more about it, we will discuss it again next time, and I will get a Sali Herman print of Paddington terraces to compare it with.

Then, up too high on the wall, was another print I thought he might like. I took a guess (wrongly, as it turns out) that it was a Tom Roberts or a Frederick McCubbin. Iasked him what he thought the woman was doing. He tried to say a word but could not think of how rto say it. He eventually blurted (yes, quickly) out "beer". Now, I am used to interpreting Juliet;'s 2 YO speech, so I praised him for being so close, and went on to discuss bee-hives, and how the woman did not have any protection from stings. I have one of Alannah;'s book to show him about caring for bees. The print was "The Old Bee Farm" (1900), by Clara Southern.

Finally, in an outside sitting area, there was a Japanese metal-craft work, that I knew he would respond to, once again mostly mutely. He could find neither "volcano" nor "Buddha". I discussed the colours, the shape, and the style. Then I went on to a discussion of Buddhism vs Christianity, which he could not engage in at all, except that he knew he was Catholiuc, and that God was more important that Buddha. That is all. After all those years of his like searching, and reaching out, all the angst, and the heartbreak, his main word was "Catholiuc".

Drugs are bad shit.

Monday, August 31, 2015

The importance of feet

I saw my GP about my feet sometime during 2014. I was nervous because I feared he would think I was a malingerer. What's that word for someome who thinks they are alwayts ill with the next big thing? ... a hypochondriac. Thank you Dr Google. I was actually worried that it might be "diabetic foot" which was on the way to becoming gangrenous, not that I am diabetic. But, I did not voice this - too embarrassing. I just told him that my right foot stung, and flared red periodically. He turned it over. Said it was nothing to worry about. And gave me some "Diprosone" in case it was some sort of psorasis, which even I knew it wasn't. Kirsten suffers from that, and psorasis is much different, and much worse.

So, 12 to 15 months later, I now seem to have this permanently on BOTH feet. I went through a period where it would alternate feet: one foot would be screaming red, and the other deathly white. The white I was used to. My circulation has been bad for many years, and my feet are so like blocks of ice that I wear hiking socks to bed, even in summer. The pain is distracting 24/7, but worse at night, or I am aware of it more at night. Half the week, the throbbing will wake me after about 3 hours, when I take two panadol, which ease it enough to go back to bed after about 90 minutes. So, just garden-variety panadol eases the perception of pain.

The feet are not damaged anywhere that I can see. I do not have tinnea, or cracked and peeling feet. I clean my toes assiduously. It is extremely painful to get the towel between my two smallest toes, on either side. My shoes are not too small, and are totally flat. My socks are Bond's cotton variety. My hiking socks are a quality (expensive) wool blend.

So, tomorrow, I go back to my GP to ask him to set up an "Ancillary Enhanced Primary Care Plan" for Podiatry which will enable me to partially claim up to 5 visits to a podiatrist each year.

It could be something as obvious as chilblains.

Sunday, August 23, 2015

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?

Saturday, July 25, 2015

A synapse of neurologists

Last March I came on board with another neurologist, one new to me, my fifth since 2000: Ray Garrick, from St Vincent's Clinic in Paddington; Stephen Reddel, from the Brain & Mind Research Institute in Camperdown; Michael Halmagyi, from the Balance Clinc in Royal Prince Alfred Hispital in Camperdown; Simom Lewis, also from the BMRI in Camperdown; and, John Parratt, from the Neurology Department at Royal North Shore Public Hospital. They each made progress of a sort, along a pathway that interested them. Clinical medicine is not clear-cut in many cases.

It is complex; my symptoms are complex. They fit nothing in particular, yet everything in general, viz Multiple Sclerosis, Parkinson;s Disease, CANVAS, SCA3. Halmagyi was working on the premise that the syndrome he labelled C A N V A S (cerebral ataxia, neuropathy, vestibular arreflexia syndrome), fitted me to a glove. His most recent paper gathers together about 80 sujects with the full range of symptoms. I have not read this paper yet, nor am I one of the participants. So, what are my symptoms? In no particular order:
  • peripheral neuropathy
  • missing VVOR
  • loss of balance
  • dystonia of neck and eyelids
  • diplopia
  • cramping of arms, and legs
  • weariness
  • MGUS
  • persistent dry cough, and
  • oscillopsia.
That should do for starters.

The very first time I can remember a symptom was leaning on a fence at the old West Pymble Swimming pool watching my daughter jump in the deep end of the 50m pool, while my son was standing chest-deep in the learners' pool. They would have been about 6 and 4, which would make the year 1985, and make me 37 years of age. This was 30 years ago. I felt a tight band of elastic around both my ankles, which I now know was the start of the peripheral neuropathy. The next symptom to come along was the cough. It would invariably engulf me at the dinner table, and I was told not to try to talk while I ate. A very effective way of muzzling me. My children maintain that it was definitional: they knew where I was at any given time, because they could hear me.

The worst symptom or many years was the peripheral neuropathy, which is a bit of a misnomer, as there is nothing peripheral about it at all. It is everywhere. Through my trunk. Up and down both arms and legs. In my scalp. Across my eyelids. Aound my lips. Everywhere. However, it does not bother me as much. Fifteen years ago, when I took my shoes off after a day at work, the pins and needles would explode out of my feet, in masses of painb. Probably the same thing happens now, just that I no longer able to feel it. My worst symptom now, would have to be my eyes. They get very tired, very dry. I have to blink excessively, and rib my eyelids.

So, what did I learn today, and where do I go next.

Parratt's team had collected together all my files from previous neurologists. So, now we have base data. There are a lot of nerve studies in this documentation. There is an MRI which is now just over two years old. In March, Parratt opined that my symptoms indicated an SCA (spinocerebellar ataxia), without specifying which of the 31 (and counting) was the most likely. He indicated that he could offer me a genetic test to narrow it down. Today, he was not so sure it is an SCA. He has been convinced that the CANVAS testing/results are the way to go. So, he is going to come at the issue from a number of different angles.

The SCA pathway, for mine, is a good one to downplay, or eliminate. SCAs, nearly all of them, are dominantly inherited, meaning there is a 50% chance that offspring will inherit the problem. A good one to give the flick, but not unrealistically. However, the SCAs have been sujected to genetic testing being developed for them. So, Parratt needs to know if it is contemplated that a genetic test could be developed for CANVAS. All these neurologists know each other, and most of them work in and around labs at The University Of Sydney.

Some bloods were taken today to send to Parratt's lab over at USYD, to test for antibodies for autoimmune diseases. This will then be studied in conjunct with the data collected over 30 years.

Every other Wednesday the neurology department at the hospital has a presentation. Parratt is hoping his team can work my history into a presentation as Professor Carolyn Sue will be present 2at the next one and she is an authority on mitochondrial disease, which my symtoms may also describe.

Then another doctor was brought in who specialises in dystonia of the neck. Consensus all round that I exhibit locked/cramped neck muscles (hence the coughing) and affected eyelids, hence the blinking and the inability to keep my eyelids open. However, this chap reckons he can assist me by way of two Botulinum toxin injections, one in the neck and one in the forehead. Each injection has a cycle which takes 12 months. My hackles went up immediatelty, but I am keeping an open mind ... until I understand the details.

There is also another conference, this time at the Park Hyatt, down at The Rocks, in the second half of August, when a visiting specialist from the UK will give the Keynote on movement disorders". Parratt intends to work up a video of my symptoms, and a PP of my tests, to present.

So, let's see if any of this eventuates.

Note: The images were all taken around the grounds of Royal North Shore Public Hospital, in St Leonards. I went into the chapel after my four hour session, for some peace and quiet. Only for a Mass to start within minutes. Both my children were born at this hospital, but I think that little maternity cottage, alack, is no more.


Monday, April 13, 2015

My little Easter Bunnies

It is School Holidays here at the moment. We have just started week 2 of a two week break. This is for Alannah who is in her second year of Pre-school. Juliet is at Day-care, and they only break over Christmas-New Year. Along with this, they both caught a bug over Easter which caused vomiting and yellow noses. Charming, reallyt!

We seem to be coping though, with minimal disruption to the work commitments of their parents. We are hreavily into drawing, Alannah and I. Not colouring in, but designing, and creating out own images. I will pull some in and show you where she is up to. I am quite pleased with her ability to deign and implement that design.

The work on the left was completed in March, and on the right in April. This week her creations are being overwhelmed by the fact that I showed her how to do 2, 3, 5, and 8 the way they will in school next year. So these symbols are constantly cropping up in her drawings.

Not to forget Juliet. When she is not adding the finishing touches to my masterpieces (she has learnt that her life is not worth fiddling with an Alannah masterpiuece!), she is going on a hectic circular scrawl as below. She holds a pen remarkably well, with good control. She has only sucked the ink out of one texta that I know of, and is very careful about putting the lids back on.

Saturday, March 21, 2015

The value of having one's marbles ...

The words expleted out of him: "Boring? It's worse than boring."

As I turned the pages in the large print photograph album with Barry and Rosemary, I sensed movement offstage, right.

With an as inconspicuous swivel as I could manage without doing my befuddled head in, there was Pieter, slumped in his chair, his walker parked beside him, waving an iPad at me.

He beckoned me over, and to my astonishment, it was a State Records image of the Mark Foy department store from the good-old-days.
Bored out of his brain after just his first month in aged-care, he had listened in to our conversation across the way.

This centered on a 1952 image of three siblings, Barry, Julie, and Ross, visiting Santa Claus at Mark Foys, on the corner of Elizabeth and Liverpool Streets.

I, in true geek style, was trying to prove it was said store, by the logo imprinted on the wallpaper in the background.

I still have not proved this.
Pieter's eyes twinkled as he bade me guess his age. Trying not to patronise, I guessed between eighty and ninety.

He squirmed with pleasure: "93 tomorrow". Mental note to self, here be a yardstick: accessing images from State Records Photo Investigator, on an iPad, in an aged care facility, aged 93.

Hearing the still thick brogue in his voice, I tried to formulate a question about his provenance, but, second guessing me, he chuckled: "Blood'n'guts Dutch". I had posited, perhaps, Swiss.
He was 16 and working in a dairy in the Netherlands, when the Nazi presence built up to such an extent, that his family knew they had to get out, even though they were not Jews.

Pieter arrived in Australia not long after the cessation of hostilities, and went to work for "Peter's Milk" at their headquarters somewhere down off Campbell Street, within cooee of Mark Foys.

And so the degrees of separation eased to a sliver.
I asked if I may take his photograph.

He instantly made it a deal with the devil.

With a few practised swipes with his longnailed index finger, he raised his iPad, and we double-clicked.

The pleasure was all mine, Pieter.

Saturday, January 24, 2015

Bowel Cancer Screening - FOBT and Colonoscopy

The waiting is over. The results were all clear.

No haemmoroids.

No polyps.

And, no cancer.

I guess my wait was short in the grand scheme of things, but not in my mind. From mid-November to 23rd January.

The weight that builds up is tremendous. And it is mostly carried singularly, and silently.

For, really, what is there to talk about?

No facts. Just fears.
The gastroenterologist was Sarah Cho, who was straight-forward and to the point, as am I. She was Sarah. I was Julie. I would not hesitate to have her again.

I guess I will learn the name of the anaesthetist when I receive his invoice for services rendered. I was told that neither charged a Gap for Day Surgery. Let's see if they walk that talk. My excess to my insurer, Medibank Private, was $150. I pay $164 per month for my "Top Hospital" medical insurance. I understand from the press, that this will increase by 7% in the autumn.
The hospital was North Shore Private, located adjacent to Royal North Shore which is a public (government) hospital. Hospitals in Sydney are a bit like McDonalds, and Kentucky Fried. They come in pairs, on a campus. I guess it makes it easier for medicos to double-shuffle.

In June 2013, I spent 5 days in the public hospital with pneumonia. In June 2014, I spent 2 days in the public hospital with heart symptoms. In January 2015 I spent 4 hours in the private hospital for a minor procedure. Too much of a bloody pattern for mine! The private hospital was nice, but then so was the public one. It cost me nothing to go to the public hospital, even when I am delivered by ambulance.

Yesterday, I took a taxi in each direction, costing about $22 each way. I have a booklet of 50% discount vouchers from the government due to my disability, so none of this is crippling ... mmm ... wrong choice of words, Jools.

I am sitting back taking it easy this weekend. My intestines were absolutely voided, and it is painful to fill them up, trying to push out all the air they inflated them with to get their camera around the multitude of s-bends (now I understand what that s really stands for). I am also having trouble with my balance, more strife than usual. I thought I could just traipse into the city today to go to the Museum of Contemporary Art. I honestly believe I would have fainted with the effort.

I asked both the nurse and the anaesthetist not to use Gentamicin. He was a bit taken-aback, saying one would only use that if the patient had some sort of patch in their body. I then told him about the teflon in my heart. And, BANG. I woke up in recovery.

I have the Fecal Occult Bloods done again in two years, and if positive, have another Colonoscopy. I am not irritated by the false positives one little bit.