Between Bourke 'n' Elizabeth

Mind games

This is the slogan used by Alzheimers Australia to promote wellness. There are seven aspects to their programme:

Brain
Diet
Body
Health
Social
Habits
Head

This is not just for us older people - it holds as a recipe for life. No good worrying about various types of dementia just cause you're old.  So how am I measuring up to this checklist?

I mind my brain: I read; I use a computer; I got to the cinema; I go to the theatre; I am learning Bridge; I take on new things like drumming and photography.

I should mind my diet better: I dont eat regular meals; but I do eat the 5 food groups with little saturated fats; I eat veggies; I dont eat much fish; I eat nuts; I should eat more prunes.

I should mind my body better: I walk to work and back 5 days (35 mins each way); I should try to speed this up; I dont dance; I dont do weight bearing exercises; I dont do yoga; I garden.

I mind my health: I take BP tablets; I take cholesterol tablets; my health is not the best but I am taking advice.

I mind my social: I have a good circle of social contacts; I am still in the workforce; I will join a Bridge club; I am one of those people whom others always seem to approach on the street to ask something or other; I go to choir; I have coffee with friends and family.

I should mind my habits better: I dont smoke; I drink 1.5 bottles of wine per week; I dont sleep very well; I can wake up at 3am and that is it; I drink very little water.

I mind my head a lot: I had three falls in quick succession not long after I turned 50; I watch going up and especially down stairs; I check for railings; I watch my step.

So, there are some things in there that I can improve upon: cryptic crosswords; fish; prunes; water; sleep; yoga; faster walking; some volunteer job.

Fitting together

A side-effect of a raised paraprotein is parathesia - pins and needles. I have only become aware of this link in the last two weeks or so. One is to do with blood and the other is to do with nerves. However, there onset in my case was roughly at the same time.

Today I had a bone marrow biopsy at Royal Prince Alfred Hospital (RPA) on Missenden Road. I have my third visit with the Haematologist, Scott Dunkley, in two weeks. All these folk are tres young, might I add.

I opted for a local without sedation which meant that I only had to lie still afterwards for an hour instead of 4 hours. Even one hour was a struggle. I'd had to fast all morning which was a blessed relief seeing I had spent the night vomiting all over the darned floor. Precious little petal that I be.

The young registrar, Stephanie, was very good: she read me my rights, she explained everything as she did it. I have a high tolerance for pain so what she said would hurt was actually what I know as "discomfort". She did the aspirate first and I gather it takes a fair bit of effort to stick the device through the skin and then through the bone. She was pleased that I am "slight". It is a needle plus its casing. Here is an image of one which I nicked from Wikipaedia.

Once she had extracted a needle full of this - which she referred to as more boney - she then had to insert the needle a second time to extract a segment of marrow core which is known as a trephiine - the actual biopsy. Some of this goes to the RPA lab and some to an outside lab effectively getting two opinions. Along what lines the analysis procedes, I know not.

Dunkley says there is a link. What he is trying to determine is if there are any treatments that are used for Multiple Myeloma (the end result of an increasingly raised paraprotein) that can be used to ameliorate my parathesia. Not sure that I want to travel the chemotherapy path - why exchange one set of side-effects for another set of side-effects.

I ache a bit this evening although the ache is not at the top of my right buttock which was the biopsy site. Rather, the tops of both legs ache. Probably a "hip bone's connected to the thigh bone" concept.

Big weekend coming up. I have two house-guests. I take one of them to their first opera (Don Giovanni) on Saturday night. Then on Sunday I host 26 people at my birthday bash at a pub in Paddington.

Falling apart

This quaint procedure is called a Nerve Conduction Test. The folk at the Brain Mind Research Institute (BMRI) over at the back of the Royal Prince Alfred hospital (RPA) on the other side of the campus, are putting me through a range of tests to try to get a handle on the peripheral neuropathy which is increasingly dogging me.

Peripheral neuopathy is pins and needles in the extremities. It started around my ankes in my early 40s (let's say about 1990) and now exists in all parts of my body except my trunk - which is pretty solid and not in the least "peripheral". But I have numbness now in my eyelids. I especially have it in my neck where I often feel as though I am being choked. My brain has to tell me that I can indeed breathe - it just feels like I can't.

A nerve conduction test involves little electrodes in selected positions on the body, pushing electrical currents through the wires and measuring the speed with which the impulse travels from A to B. This is the first time I have had it done on my head. Usually they only do it on my arms and legs - sort of like electrocuting my toes! I have good reactions otherwise - he dongs my knee and my leg jerks. Often this reaction is impaired. Mine isn't. Howver, my balance is increaingly impaired. I bump into things like walls. There are times when I really struggle to change direction and have to consciously apply brain power otherwise I have a list to starboard feeling.

I've had a brain MRI which showed black spots from a couple of falls but otherwise was fine. I have had a skeletal scan - 13 x-rays of my entire body. I've had two full nerve conduction sessions - this last one took just over 2 hours. Try having electrical impusles pushed through your body for that long. Quite exhausting.

The other complicating factor is the raised para-protein, which I have known about since 1995 when it was only 2g per 100ml. This time it tipped over the 6g per 100ml. This is an indicator of multiple myeloma. The first reading is categorised as Stage 1 - just requiring a check every 6 months. Over 5.5 is where you enter Stage 2 where the possibility of developing full blown marrow cancer have increased somewhat. Nothing dramatic - it will kill me by the time I am 90 or so at this rate. You know you are in a smidge of strife if you read in the mid 30s on an upward trajectory.

Somehow these two things in me are linked. I see a haematologist next week. Then back to the neurologist, Steve Reddel,  at the BMRI. He is a pretty cool dude. I like straight-shooting. Tell me more than I need to know with no frills. In the late 90s my neurologist was Ray Garrick over at the St Vincents Clinic who is still rated as the best in Sydney. But I did not go for his style. He used me as a research statistic. Electrocuted my toes every 6 months, gave me the next you-beaut anti-depression pill and told me to come back. Talk about B for boring. The pills did f-all. I gather that whatever is in anti-depressants works a treat on the nervous system, too. Just not with this little black duck. Threw that in after a couple of years.

However, time marches on and conditions progress. So time for more poking and prodding to see what is causing all this. I reckon my chances of dying of old age are as high as anyone elses.

World Shakuhachi Festival 2008

On Wednesday evening at the AG-NSW, we were offered tempting morsels of what to expect over the life of this festival which is in Sydney for the first time mostly thanks to the indefatigible Riley Lee. I have attended many of the Wedenesday night offerings at the gallery - they ARE free! - but this is the first one where the patrons overflowed the Central Court.

However, this was nothing in comparison with the rapturous applause that exploded out of the City Recital Hall at Angel Place on Friday evening for the opening concert odf the festival, "Breath to Breath" which featured Taikoz. Words cannot do this experience justice. Meryl Tankard's "Kaidan" for the 2007 Sydney Festival was my first encounter with Taikoz and it left me speechless - not easy! Earlier this year, I was electrified by their performance at the Four Winds festival in Bermagui. This latest concert was yet another permutation of their artistry with many pieces that I have not experienced previously and with a broader range than I realised. They have a special relationship with Riley Lee and this was evidenced at the end of the programme when he forsook his shakuhachi and pounded out one of the grandfather drums. I treasured David Wheeler on the shakuhachi; his fluency in Japanese and delicacy on the instrument belying his prize-fighter appearance.

My third foray into this mind-boggling festival, was at The Conservatorium on Saturday evening for the 10pm presentation of "... in Between", meditations and illuminations on The Tibetan Book of the Dead where Riley Lee's shakuhachi took a secondary role to that of gongs (Michael Askill), voice and wind (Tensin Choegyul) and the drop-dead sonority of James Coates. I was captivated for 90 minutes as I was led through this text that accompanies the recently deceased into the next life. My only sadness was that I had to attend alone as everyone I asked regarded it as a "bridge too far".

I tried to find something genuinely Japanese for you to experience the Shakuhachi as played by Riley Lee but decided upon this lilting Western tune as it shows both Lee and the shak without the dripping syrup of a powerpoint display.

I enjoyed this festival very much - a bridge-too-far suits me.

Decision made

Accommodation
I am staying where I am. I do not need a larger footprint on this planet; what I have at the moment is well enough for one person. There are things that I can do here to make it work better for me. I want to be out and about doing things not paying more for a place to live in. With the extra money I don't pay in rent (about $9K) I can have a month's holiday somewhere in the world each year.

Employment
I am staying where I am. I have just completed my annual assessment and there are a number of  points that the boss and I have agreed upon to make the position more interactive with the faculties and with the academics. There are major changes coming in data management by the end of the year and this will be a challenge. I need to be more forthright and not let others in the office always take the lead just because they ARE forthright. Doesn't mean they are right. As much as I talk about it, I am not ready to reduce my working week yet.

Activities
Now that drumming has finished, my next venture is to take 10 weeks of Bridge lessons. Let's see if I can get the hang of this and join a group on a regular basis. THEN I might be ready for a 4 day week. The lessons start on 29 July - 3 hours every Tuesday night.This is my brain food. This is what my father did not do and now his brain is going and he just sits there every day. i have a great bunch of friends. I have an active family life. I have my reading, my gardening and my photography. The possibility of Bridge would complement all these quite well to my way of thinking.

... decisions ... decisions ...

All on the same day: I saw a job I thought I would prefer; and, I saw a house I thought I would prefer.

The job is still at the University but it is supporting research applications from within a faculty. This would be busier and not as dry as the job I currently do. However, it is down a level in salary. But, it holds out the possibility of a four day week. So ... lots less money but more free time and a more interesting role.

The house is in the same street as I currently live. It has been renovated, the bedroom put upstairs and the ground floor is one very large living space. All the things that I have been thinking I would like here in this terrace. However, there is a massive rental shortage in Sydney and prices have shot up. The place up the road is bigger because the bedroom is on the second floor. They are asking $450 per week for it. I currently pay $280.

... groan ....

I can't do both. I cannot pay more rent from a smaller salary. I turn 60 in 6 weeks and my superannuation becomes available to me as a tax-free pension if I want. What I can also do, is set up a Transition-to-Retirement where I pay a percentage of my current salary into my super account - before tax - and take out of the super a tax-free salary top-up. Thus, effectively, laundering the tax out of my salary. This would mean that a lot of the rental hike - or salary decrease - will be paid for by decreased taxes.

... groan ... groan ...

... djembe drumming ...

See the concentration on some of these faces: this is what we - Irene, Margaret, Christine and I - do for an hour and a half every Tuesday evening. Tonight was lesson 3 of 8. I guess there are about a dozen of us, led by the "facilitator" Beau and a "facilitator-in-learning", Kimberley who run the Bondi Junction circle for In Rhythm. It takes a tremendous amount of discipline and self control to maintain a rhythm when there are three or four competing rhythms going at the same time. Beau will also stop the pattern and then count it in again. Sometimes, we have to swap over the pattern on the count of four. It is very exhausting and I for one, get immensely hot. Sometimes my head just gives out after three minutes of the same pattern and I cannot remember it, so I have to concentrate on the pattern Beau is beating out and come back in again.

At the end of the eight weeks, all the drum circles around Sydney who have been learning the same pattern, come together for a Drum-Fest. Such a good way to spend an evening. My motto at the moment: Not going gentle into any good night.