Sole Parent with MS starting, trying to get four kids out into the wide blue world. Score: one in the wild, one nearly finding wings- two to go...Also- cook... windsurfer that needs to be a better amateur meteorologist, winemaker plus, keen paid geologist, MS, RC hobbiest
In Oz, maybe like in other places, we have a growing up celebration called a debutante ball. Where the nearly adult among us are presented to society or local community [as nearly ready to find partners? Or to present their current partners?]
Poor bloody parents.
Relatives and friends.
First, the parents have to be persuaded to part with money. For dancing lessons. This takes over a month, and the couples have to get it right, and the worry wears them down if they are perfectionists. I am told.
Next is finding the committee to look after the Kids' Big Night Out. As it was not not done properly before the practice sessions, and the few involved at first really needed to spread the load. Or get the nod on the decicions already made?
Yep, another committee, and yours truly put his hand up. And stayed quiet as the arrangements could only be nodded at from my point of view. Maybe a female partner would have enjoyed using the almost wedding like organisational skills required to implement committments to this procedure, like food, table arrangements and clothes and props, photographers, video people, stage trees and props, DJ for afterwards....etc etc,
So I was on the committee. Unfortunately, the male partners choices on the costumes were over-ridden. No, jeans and tees were not on the list, but suit/vest/tie colours were and their choices weren't. In the purple mode only, thank you boys.
The outfitting- apparently costly to the girls family, a sacrificial goat or jeep is sold off and a new mortgage negotiated, just like a wedding. The guys, just rent a tux and shoes... and do as they are told.
We were allowed five tickets to the ball. Which for me meant a grandparent and a sister and the twins. And me. Better than alone like last time as a partner piked out on #1Sons deb. Or refused- very unsettling at the time.
My sister travelled through the Big Smoke to come to a very special night, very appreciative of that. And his Poppy came along too and the twins. Also at the table was #2Son's girlfriend's Mum and partner and sister and partner. A jolly little group, first time together.
The deb kids were not at the table though, they were The Entertainment. And the table talk was a bit minimal, as we were there to see our kids.
They were presented to the Deputy Premier of the state, the Mayor of the shire, their partners and other school dignitaries a pair at a time.
Then there was the dancing.
The end was a loud din of families lining up for more photographs and a disco starting up.
To me it was a little emotional at the start of the night, accompanied by poppy and the girls and my sister, was seeing this young man, a gentleman almost [hand reared] stepping out onto the world stage with a beautiful friend.
For their birthday last month. Thus keeping up with all the other little Jones'. Hard to believe the little tomboys are now on the verge of actual teen-hood. Mind you, they better grow a waist, the new school pants are the right colour and length. Only. Alterations were more than the original cost!
Severe restrictions of course. Fatherhood allows that. Does it not?
one- do not use them...
two- I do not want to subsidise over-use thank you very much
three- do not drop them
four- I cannot remember
five- use facetime?
six- use the landline?
Anyway, so far, no recharge yet until the next few weeks...
Maybe they are being sensible?
[But one cent texts... #2Son can fill five sheets of his phone bill with itemised sms calls...]
They did lose the privledge of use because they could not keep a tidy room. In one case, nearly a fortnight.
"Have you finished your room?"
"Well, do you want your phone AND iPod back or what?"
I dunno how the human race arrived at this point.
Did Julius Caesar give his folks grief like that?
Eldest son was suitably Outraged that the gels got a phone in the first year of high school, whereas he had to wait until I had a spare when he was in his second or third year, long after friends had them. Even so, he was good with it.
The second son managed to scrounge a second hand one off a richer friend when he was in his first or second year at high school. And managed to sell "his bmx bike spares" to maintain the SIM card and plan that had to be gotten under my name anyway.
I think they are outraged as I really did go out and buy the twins a phone each, even though I probably will bleed financially as soon as they get the hang of them.
But... As the gels already have Apple Touches with wifi video- do they really need a cell phone? I thought no. With the Facetime, it was fine really, the broadband plan was upgraded enough to cover the five technophiles that lived under my roof anyway.
Tarn would have been mortified, being the sort of technophobe that had to be gently persuaded over many months that a new bra would be better than the one with the loose under wire[s?] prodding her conciousness over whether I would be unamused at such an extravagance:
"A new bra? What!" which I never said by the way because I could not understand it. But maybe I with some affluence and consumeristic ideas I had devolved into a toddler-
"GIMME IT. NOW!"
I do not think that a new vacuum cleaner would be allowed either- I love my dyson...
So the boys were a little nose out of joint- was it favouritism?
I need the gels to feel safe in these times, for example that they do not have to scramble for a coin AND a public telephone if they need help. Being the single parent/single dad, I need to be re-assured that they can be safe, all the time. Do you know that the number of public telephone in our town can be counted on one hand...? Well, google earth won't let me find them, but I am sure there is a lot less around these days than when I was a kid. But I can find a video store...
Why blog the slippery Slope of MS, a Motivation For This Blog
I was reminded the other night that Tim Ferguson, formerly of the DAAS, has MS. Here he talked a bit about it, June 2010. He has some trouble with MS and uses a cane at times. But is still working on spreading comedy to the masses. Tim is not the only one I know of now besides my aunt to live with Multiple Sclerosis. Because I think I have MS, that is why blog the slippery Slope of MS is happening.
An additional motivation and inspiration is Michael J. Fox who has Parkinson's Disease and is getting on with life as best he can too.
Another is a lady with MS I know living two blocks away. She now has a powered buggy to run around and shop with/in and does not need a taxi now in fine weather. No cane down the street! My future?
When Dom the neurologist let me know I probably have it, I was not shocked- it just explained what was going on, and I had something to blame the odd clumsy moments I have been having over the years. Or do I?
I do not know what he expected me to do at that time. He being a very proper Brit I suppose, was polite and quiet, whereas I was pretty chuffed at that it was only MS, a few little pea sized shadows of scarred tissue in my head, and not anything else. In his and Ernest's opinions anyway.
The kids are healthy/fed/clean/sheltered/clothed/washed/laundered, their schooling good. Bedrooms are a shocker but.
LIFE is rolling on almost fine at the moment apart from it not living a) UP to my expectations or b) OFF a lotto win. And the bee sting feelings in the joints that my dad says is "arthritis, son". The poverty line is RIGHT THERE... Come on back oilpatch...
The few people who have been told of what I have have been a little shocked, but my obvious, self evident confidence that MS is not currently affecting me has won them over that I am okay. I think. My little family and MS news was not horrifying to them either. The larger family. Hmm. My father wants me to make notes or a MS Diary on episodes of recurring symptoms, to diarise it sort of. Well, here we go... (and that reminds me of Raising Hope TV show, ho ho ho)
Or is my self delusion of being diabolically witty and cynical blocking a self awareness of being on a down hill run into a frightfully smelly pit? So what. My will was done shortly after Tarn was lost, and the super is fixed up too. Hopefully, as it occurred to me yesterday, I will get to hold a grandchild one day. That would be nice I reckon.
"Sounds like you should see a general practioner [medical doctor:GP]"
This was her reply to my telling her of a weird feeling in my left leg when I nodded my head, like when you knock your elbow, but repeatable, and without pain.
So I booked a consultation with the local doctor. The next nine months was a time of some uncertainty, and inevitably, a [probable] prognosis of multiple sclerosis. A new road: Daggy Dad & MS
Possible symptoms as I look back or any sign before Easter 2011?
90's to 2006
When I think about me, I think I am fit enough for a fifty something bloke. I do not do anything like gym workouts, or jog, or any sports apart from windsurfing or speedsailing on my windsurfers. Or trying to teach it. The career change of raising kids and then doing that and having a part time delivery job instead of working on a drilling rig as an oil/gas exploration geologist leaves me plenty of time to stay fit. Leaves.
I think back and try to see whether MS was coming on earlier with any recognisable signs. My dad's sister, who I have never called "Aunty" or "Aunt" as far as I can remember anyway and is about twelve years older than me, was diagnosed in the mid 90's, [as my late grandfather told me c.a. 1999], from memory. So maybe it is in the family.
In the late 90's, I noticed I was tending to easily get sprained ankles, is that a symptom? I dunno, but I was pretty care full at work and when windsurfing after that time. I once half filled a fresh jar of coffee with boiling water instead of my mug, but I was trying to do two things at once, as I told my sister who was on the phone at the time... Not a symptom really, but funny at the time.
2006 to 2011
During the late noughties:
I had funny numb spot near [one ] of my knees, I thought that was weird, but not worth telling anyone. I could tell I was brushing my leg, but it felt different from the same spot on the other leg, skin wise anyway..
Numb spot on a left hand finger- weird, but, a/a.
I noticed that I was seeing colours differently between left and right eyes. Red colours were not as bright with the right eye compared to the left eye, and overall vision was greyer(?) as well in the right.
When I walk down steps, I have an odd stance or feeling, like I am not bending my knees enough or properly- but I do not want another ACL or joint scraping job done either.
With the colour thing, I told my optician on the usual "I dropped a twig in my eye doing the garden" visit, who sent me off for a special batch of tests in the big smoke, which resulted in Nothing Out Of The Ordinary Sir...
I was sitting at work in my delivery van, bent my head down to switch radio stations, and BANG! there was a strange feeling down the left leg from bum to foot in a couple of spots, like if I had hit my elbow and got that same strange feeling, but it was in a few but only finger wide spots. That is, I could touch the spots, not like a line down the leg in it.
As well as the feeling [twitches?], I had a sore neck at the time too, relieved by some rolling the noggin around and back stretches and cracking the spine, and sometimes relieved by a chiropratic session.
In addition was an occasional weird sound that could be tinnitus in the left ear. Like a mis-reading of a CD, a sort of random on/off static or clicking like sound, not annoying, but there.
Easter 2011 at The Gurk, I was telling people about it, the eye trouble was a repeat from a previous year, with no comments as to what it was, apart from my sister. Ree said, see a GP, soonish!
Seeing the doc
Well, I was later that month at the local clinic, the doctor was new to me, the usual family GP was not in. Start the spiel...
After describing a few things to her, she wanted me to get x-rays and an MRI. Just in case there was something going on.
From the x-rays done on my neck, it looked like there might have be a boney growth in a neck vertebrae nestling up too close to the spinal cord.
The doc said, "Easy, we can get in there and get rid of that".
Wow, "we" are not comfortable with "us" diving in with a file there!
In any case, the doc wanted me to see a neurologist on the clinic's list of available specialists, and one was at Monash in The Big Smoke. [great, more travel...]
After buggerising around, as the guy she had on her list was actually in another state, the clinic people at Monash finally got around to sorting that problem out and booked me to see Dominic, mid year.
Unfortunately, I had my fan club with me (my twin pre-teen gels) when I saw Dom. Which, was not a problem just I felt odd. We talked over what was going on with me, what was odd and sorting out age and MS related symptoms and all that, and Dom said that I should get a MRI scan done soon.
Well. There was good and bad with that. The lesions in my neck from the x-ray were enough, a possible solution with out surgery!
Lucky enough, there was the 'portable' MRI on a Semi-trailer visiting the local country hospital in a month or two (...!) and I was booked in.
In the mean time I was booked back into the Monash neurology clinic for some tests a few weeks later. Okay then. I wanted to get to the bottom of it all.
Another two hour city bound trip for... a thirty minute eye test! As a scientifically interested person, it was fun to see in action how my brain was working. Or not.
From the MRI images it "looked like MS" to Dom when I saw him again in September. They were not excellent images according to Dom, as if the radiologists in the portable unit were useless! But readable enough for him to confirm what he thought was clear indications of a slight to mild case of MS.
The eye test was also a confirmation too, there was definitely a problem with the right eye signals, and maybe a little bit with the let one.
I was to start thinking about possible treatment courses. Two types, one with some side affects
My aunt told via Skype when she was travelling in the US, to get on to a treatment as soon as possible, as that she regretted not taking it up as soon as she could have.
In February 2012, I saw Ernest, a neurologist specialist in MS at the Monash MS Clinic in the Big Smoke. Another city trip for a twenty minute consult. Half the day gone in travel.
Yep, he told me I had a slight to mild case of MS. Daggy Dad & MS, the new road.
Hmm. Do I need to go to medication? A treatment plan?
No was the answer. Not until a definite progression over the next year can be seen, i.e. from another cranial MRI about August and another consult next February .
Ah well, a new adventure. PS my sister thinks she might have it too, a numb tongue...
The rain Page here has been updated again. And again- fancier?
I see that the rain pattern appears to be changing IMBY since the mid 2000's. Of all my hobbies started since kids arrived... it has been pretty satisfying to see what goes on IMBY and locally and regionally.
Playing with my excel graphs of monthly recorded rain IMBY [not daily- I think it would have to be re-arranged and not going there as yet...] it looks like the three cycles of rainy/drier has been changed since I have been recording it in the backyard.
Would you agree, or want to see more data? The B.O.M. has a lot, maybe if you want you can see if it tallies up as far as a trend change goes. Fair warning, nearest weather data collection to us lies a few kilometres from away.
With a Muttley-like smirk or chuckle, or hiding embarrassment too, but, um, ah, am I right? Am I right?
Besides the 16month moving average cycle, it is the average over time that is also interesting. The drought in SE Australia looks to me to have ended maybe the first half of 2008 or earlier by my records?
At least IMO, these last few years of data shows me that it is heading towards a wetter climate here in SE Oz. IMBY IMHO that is!
Having weather station is nice to have- automation of data collection is a boon, what?
But I am not going down the road of temperature collection, as too many variables may affect the data collection, and I maybe should have started that at the same time as the rain recording, cos I do have and have had a MinMax mercury type thermometer since 1983... The many thermometers I have never agree anyway*...
I hope moving the rain collector gauge won't affect the data a lot, but that was a self imposed OH&S thing! In any case, I wanted to eliminate extra splash from the roof or nearest trees, but I do not think that has happened. *marvined? Also, have to update that page- the magnificent measurement obsession has got some new additions!
I mean Red Wine Vintage 2011 LABELED Three takes and done
Well, I bottled the blended Red Wine Vintage 2011 vintage of Shieaz and Pinot Noir, the whole NINE yards bottles.
As there was some special oil used to protect the wine whilst in vitro while maturing, 'cos I like 12 months bulk aging prior to bottling, I had to sacrifice the last bottle.
For tasting and to have with some cabonara penne!
Well, it was Good, thank you, and I will enjoy sharing the bottles of the 2011 special blend over the next couple of years with family and friends for sure. Smooth and tasty, not as peppery as it was freshly made last year. Slightly tannic, short lived, and nice nose, not sweet.Rounded and warming At 12%, the Red Wine Vintage 2011is perfect. IMO.
Eight left over
Setting the label up was a bugger, as I only do it once or twice a year, and the previous year's label was lost... But I had saved the 2008 label, so changed it up, and printed it off the laser first- by mistake. Then printed it in colour on the ink-jet. With the sheet upside down, as per laser... In the end- you can see, done.
From the recycling and hoarding instincts of a some what very diluted Scottish heritage(?), I decided that the 2011 Red Wine Vintage blend of Shiraz/Syrah and Pinot Noir will be bottled in recycled screw-tops.
Hmph! I hear you say. Well, being a Scrooge, I like to satisfy the independence and unconformity thing I have too you know! Well, if you don't, you will over time.
The screw-top type bottles are accruing faster than normal corked types these days. There is enough to satisfy 'demand' for at least three years at the moment. Not much use for corking if possible- laziness is the mother of invention?
Sunday- prepared and washed and scrubbed and rinsed out and sanitised nine bottles. Yeah, I know. Nine.
Racked over the 2011 vintage into a larger container and added PMS for future protection against vinegar and other nasties. Leave it overnight to settle out some lees that went in, slackarse.
This time of the year is probably the only time I can walk in and out of the Alcoholery without tripping over anything or everything. Press, crusher and de-stemmer moved out to the backyard. When used and filthy, easier to hose out!
This year, it looks like I have got a sort of mixed wine of about 12% alcohol.
One could call it a "rose" type if generous enough.
Compared to last years vintage, made only about seven litres. This will be nearly nine bottles this time next year if it tastes as good as it does at the moment.
Taste. Mmm. Well, not as Foxey as I expected, the wee half litre or so of Pinot Noir added has made an improvement on the standard very-exotic-perfumey style, sort of rose, actually, and it is sort of thin, like not enough acidity. Maybe a brandy base?
Process- clean out the vat, press, transfer gear, scrub with sanitiser and then SMS the lot too. Never too much SMS when cleaning, less to add when bottling! Then tip the fermented grapes into the press and turn the screw, collect every drop through a sieve as seeds and mush do not add to the taste whilst it ages in vitro.
Voila, hey presto, a demijohn of wine plus.
Time taken. Netting: 10 minutes. Watering: rainfall only from garage roof. Harvest: 30 minutes. Fermenting: setup, 10 minutes and wait since last Wednesday two weeks ago- eleven 17 days on skins. Pressing: preparation 20 minutes, pressing 10 minutes, clean up...
All up, about an hour or so actual hands on for... eight bottles.
I read a blog- Bad Astronomy. And another This week there was a recommendation. See The Rings Of Saturn! Oh boy, this weegen, okay then! Some backyard science again! Tonight (14 or 15 Apr 12) he said, is the best view, if you have a good telescope, of the Rings about midnight. As Earth is between the Sun and the planet. Dutifully I waited, and as usual, oh shit, it's midnight and ran around looking for the gear. Set it up in the dark IMBY, with a laser light. The gear is cheap. About eighty bucks at the post office a few years ago. But I have seen the moons of Jupiter with it, and Lunar seas and Mountains and craters, so the Rings of Saturn should be a go. It did take a while, but no rings. This Year. For Moi. Alas.
The cheapness extended to me too- there was only one medium power eyepiece. I could not put my hands on the rest of the eyepieces of the set! Preparation.... But I think, it maybe too cheap, as there was awe-full distortions, like colour distortions, which reminds me of cheapo binoculars I have had in the past, not glass but plastic lenses. Ah well, I did try.
Ever tried to really catch a planet in a telescope? They are bastards! They move!
Looking for the Rings Of Saturn
Bugger, getting the dang gear to find Saturn was hard enough, then to try to focus in? Oh, the marvined factors; Bad neck and back this week; street light into the backyard. Ended up using the garden table, garden chair and the garden umbrella and a sack of topsoil to sit on to keep track without visual distractions.
If I had me druthers- I would have picked up a better, but still cheap, reflecting 'scope at Aldi that had a motor and GPS for about three hundred bucks, but hey, that was last year.