Windsurfing and MS

Windsurfing and MS

Now that I have combined all blogs into one, means titles are going to be even more cryptic... And hopefully descriptive as to whether it will be worth reading through. As the SEO spammers keep on at me about! So there will more stuff on the family, and then hobbies like windsurfing, my state of health coping with MS, and the weird and wonderful rants and being Marvined of course. Maybe being Marvined means nothing to you now, but then when birds of a feather congregate, sparks may fly. [That's where the weirdness comes in, by the way.]

Selfie

Storm

Some Pelicans

The Prom

Since I have been back from the the drilling rig in desert - my MS symptoms seem to be at low ebb, which is good, apart from the loneliness feelings or paranoia of not being kept in or deliberately kept out of old friends or family loops of information flow. I know I like doing things myself, but really- am I that crappy to be with? And/but looks like I am going to need more help as when and or if the MS attacks become more often or severe or both. So where will that support come from? Flying backwards and forwards to work is okay IF there is going to be regularity and time off to wind down. With people- do I have to chase all the time, or be told no time, maybe sometime else. Retchereding. Look that up!

But then the winding down has to be put off as getting home means re-adjusting to the reality of rearing two young women and a young male adult. Which seems is not as easy as it was with the eldest child just a few short years ago! Having the friends of the YA around too much is wearing too, means the house is FULL- and EMPTY stubbies/tinnies (beer containers)  appear SUDDENLY on my - well it is not that neat but anyway- COFFEE table. AND things go missing while I am away- like the brand new remote control for the brand new EXPENSIVE blue-ray disk player/PVR! AND the relatively expensive yankee can opener is missing too!  AND the poor old portable grape vines were not that well looked after- the bunches are going to be the runts of the year- on all fifty pots! The ppo wee hoose was not looked after properly either- #2Son needs to be reminded that friends are not just there to tidy up after him! Even though they are staying over for freebies- Should I stop it?

BLAH BLAH- whinging and whining, and not appreciated. Just getting started- NO just relieving myself- I mean releasing some pent up up crappiness.

"Need money for this Daddy..." "Going to the pub with the mates, seeyas..."

THAT'S being Marvined- having a brain the size of a planet, and being used as the bank and cleaner.
But still I am doing it.

Being Un-Marvined, 

but still marvined as well, the last three weeks I have put nearly three tanks of fuel towards WINDSURFING and a thousand kicks on the vehicle's speedo, while actually being on the water for about sixty minutes all up. Yep, twelve hours travel for one hour on water time. To be fair, the wind was shitty or not there, or I was too tired(?) to stay out too long. My MS advisors have mentioned that- BE ACTIVE, be AWARE of tiredness too. Hmph. Bloody off putting the whole thing, I want to go SPEEDSAILING and am not up to it anymore. Throwing money at the shop for better gear means it will be worth more down the track cos it probably wont be used.... Ache and belly...

But I still do it.

AND today was a good day today- 30 minutes flat out after the wind came in at 1:10pm (2 hour wait... had nearly gone home at 12:10pm).  Very nice on the new board with the new sail and the new boom and new mast insert and new wetsuit and new floaty jacket, less time IN the water this time- bliss to be up to date almost- so now I need a new mast and another sail (a  5.5m). Then the wind relented so I packed up and and   and had a nap, as the tide was RIGHT IN! Again I had badly miscalculated, thinking that last weeks' high tide time would have occurred earlier today- idiot- NO. Ah well, very peaceful, puffing on a ciggie and drinking a packet of UHT coffee flavoured milk. Watching the pelicans and gulls floating in the shallows. Strange day, only me and two cars turned up, one a boater and the other a dad and son looking around- NO ONE else sailing. Bugger me.

Wish I were more positive- maybe I am normal- or just normalising things out. Wish the kids were just a little more house proud- not that I am a great example. Did do some retail therapy this week too though. New mower- self-propelled expensive little beauty, a new whiz bang Weber, a pole chainsaw for the bloody trees. Had the family wagon's electrics fixed up a bit for a grand... still needs more work!  And then I have my sister's wedding to look forward too, and all that jazz, going there in #2Sons new old car- nice it is too. And I have another desert job next week- means I miss xmas and the Boxing Day Cricket match at the Gee with the two boys, ouch, Ozzies V The Poms. Bugger.

PS the pics today were with a lens kit for the android phone- works well and as a macro for work, should be excellent too.


/*Retchereding- being pissed off at people and doing nothing about it as the effort may mean loss.

post august '13 consult- not too bad

post august  MS '13 consult- not too bad

Dr 'D' says of the last MRI in July, a new pea sized lesion in the brain. The post august '13 consult- not too bad after all!

Great. Well. Well. Well. Three holes in the desert... Was there a little superiority noted by self when the doc could not see how to view three CD's of MRI images at once? Yep. But she did appreciate the tip- if a program is on disk, then copy it and data files to temp folder, and use it to resuscitate a "dead" imaging file on a "faulty" CD, and then go and compare the annual file images- Voila! Well, it took a little time out of the following patients time  I reckon, but then, learning never hurt anyone... Unless a diagnoses learnt does... Argh.

Was nice to say to her that since I have been on one of the recommended treatment that there has been no significant relapses since the left eye deal last year, the week before the new consulting job.

The last few months have been relatively free of the numb and tingly symptoms too, but have noticed that there is a slight relaxation in the bladder control after urinating, the last few drops manage to spoil things, and this is rare, and after dinner too. Weird.  A fold of the willy in the jocks is a fix I think..

Which means that the post august '13 consult- not too bad result is good. It is still only a mild onset of MS.  The capoxone may be holding off symptoms- just think that a oral tablet treatment would be less stressful and worrisome when working in the desert if more work comes up- keeping it cool may be a hassle.

Tomorrow a new start

Prescription for a New  Start

A prescription arrived today. For Capoxene medicine.

paper attached recommends to start with some help-like a partner or doctor or nurse.

Well, a] cannot do, b] why? and so c] is at 10:45am...

It will not be traumatic... just the start of a new treatment to alleviate the next effects of my MS.

Hmm, a new Start for sure.

lil old visit

Visit to the neuro today

Another 3 hour trip to this side of The Big Smoke to see what I can do with the last episode still dimming my sight... and only two and a bit back, Not Speeding, and was a lil dampish road-wise.

Hooray- Ernie said I can go on MS meds- capaxone looks good at 30% reducing the effect of an episode, but there is a new one that can be said to be 50% effective- Gelany

Just the side effects... could be fun trying it all out I spose, this dim sight could be frightening next time.

I haf sum nuus

Good and bad news on last status-

Thanks to my aunt, I have gotten onto my neurologist's clinic, and got a booking earlier than January  this week in fact.

de bat nuus- still not 60% in the left eye- the orange street lights are now just grey glows in the dark.

It was not good to be on the first geology job with a bung colour filter I tell you. I had to ask one of the fellas if some clay was brownish or reddish, that's what I'm losing out on- colour judgment.

If it is just "optical neuritis", there is still the chance that it will come back to normal. I can nearly read this screen properly now, with funny after images chasing the words across the page, distracting me in shades of blue and yellow, through a greyish filter.

Crossing my fingers that it will all be okay in a few more weeks, it's been three weeks so far... Maybe I can go onto capaxone[?] sooner than later, as joan wants me too.

WHAT THE?

That's Not Quiet Right!

After I got up to make coffee this morning, after the howling fighting horde had whizzed off to school, I looked out at Tarn's jasmine bush with its white flowers tumbling over the...

WHAT THE?

It was foggy smoggy and weird. I rubbed my eyes to clear them up as I had done since I was a kid.

The Same...

Oh oh.

Yes, the right left eye had lost definition  as if some pixels could not recognise all the colours of the white flowers.

The sky and well everything was like seen through a smoked and vaselined lens.

Bloody bugger!

Looks like another MS episode.

Or macular degeneration.

Got on to the eye doc, my aunt with MS and the local doctor.

Nothing to do, looks like the neurologist needs a call and get onto the "capaxone" asap?

left eye

right eye

I tried to see what I could do to show what was wrong, and may add to it-

wet Toe dry boot

Yes, a Wet Toe, but fresh dry sock?

Dry boot too.

Is it me or the boot?
Maybe I need new boots?
Just a daggy dad looking for nothing bad... Just onset or mild MS?

But three pairs of footwear [bootish style] and the strange feeling of having a wet big toe or half the left foot feels like it's wet. Sometimes.

When I am sitting usually. Here at the desk like.

Wet toe dry foot. 

Or maybe while watching the teev in the Moran Armchair that is not quite right lumbar-wise;  the cat is drippingly purring all over my pot belly while I try to switch channels or reach the wineglass without upsetting her...


And sort of nearly stumbling sometimes, you know, tripping over the toe of your shoes/boots and looking back for that crack on the path or floor that you KNOW was not there anyway.

Is this what it means to have a slowly spreading build up of scarring scabular neurons in the head (where else stupid?). A numb feeling, strange feeling, or what?

Note from mid may 12 
next symp 
cold wet toe while in comfy socks and boot
strange cold? numb feeling while seated in car for a while


left ring fingre- tingling at end


on top of the 'cracking' knuckles a lot.


My dear brother is encouraging me to speak to my aunt that has had MS for about twenty years, she would be good to talk to- I do not know, we skyped once while she was overseas earlier in the year and she wanted me to go on meds straight away and the neurologist I have met about that, one consult mind, said, "Nah not yet".

Dunno. Yet. Feels too personal, even sort of avoided everyone this year at the annual cousin party in the country at Easter so not to feel 'special'.

It is not like last years episodes of when I nodded in the van and I had patches of tingly feelings down the left leg from the bum cheek. Which turned out repeatable over a few months only, thanks for asking... That's the scientist in me- has to be repeatable!

Oooooh-wah?
LEFT side?
Maybe related to the MS after all! Just a fake wet Toe dry boot?

PS to me- Just noting what's goin' on man, watching for symptoms?

PS2 Later on- I figured the strange feeling, which tonight seems to be spreading  to my thigh on both legs is like a menthol rub, cold type.

Floored

Not Hygenic

I like to make dinner, and early. Especially if the descendents have to go out.

Late yesterday afternoon, I spent some time making a quiche.

Once cooked, removed it from the oven with a cloth.

Repeat, A Cloth.

So burnt myself and dropped the lot, on the floor, where a cat had been waiting impatiently for scraps about 20 minutes beforehand.

Binned. Shrug. Have to.

A descendent removed retrieved some frozen party pastries, and why not, the oven was still hot.

I put them on a tray.

I came back to see if they were cooked.

I had not put them in the oven, and descendent was to be at band hall soonish as well...

So there was no band hall practice- the sore foot was just the final excuse not to venture on the road.

Was it due to MS somehow? A clumsiness inherent in the dis-order?

Dunno.

Maybe this should be filed here instead, like, bad luck to be born a duck, or filed here under overcooked, over worked and underpaid?

Note to self May-12 a

note this
is it a- what?

I have been feeling off key the last month or so, and it probably doesn't help I stay up late catching up with recorded programs, a Lot.

This week- feeling like my legs may give way if I don't concentrate, like a weakness in the knees?  Concentrate sounds weird, but I am trying to notice more than usual, any unusualness in everyday activities. Is it symptoms of MS?

And my right foot is Slapping the pavement. I know I hurt myself at Easter by a short run without a warm-up. And possibly a few years ago when trying not to drop a very large heavy netting [fruit] box on my foot in the winery. But different boots...

The back is better, the neck- not too uncomfortable to sleep with. Does the osteopath help?

The bee sting like feelings in the knuckles not so intense, but still cracking them a lot to relieve the feeling, which may return or not with in the hour once or twice more.

Or is it just old age.

Why blog the slippery Slope of MS

Why blog the slippery Slope of MS, a Motivation For This Blog

MS arriving 

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?

Told

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?

Reaction

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)

Real?

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.

Hence Why blog the slippery Slope of MS.

Daggy Dad & MS

Easter 2011...

My sister said...

"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:

1. 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..
2. Numb spot on a left hand finger- weird, but, a/a.
3. 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.
4. 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...

February 2011

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.

next consultation

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.

Latest consultation

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 [2013].

Ah well, a new adventure.
PS my sister thinks she might have it too, a numb tongue...

Don't know if it is real yet

I am yet to tell if MS is a real thing to me as yet

As previously told, a few interviews, xrays, eye-brain test and MRI scan are what I have had the last few months for the neurologist to suggest I have MS.

I have not delved too deep into the www to see what is going to happen, but I think the progression in my opinion so far is that I better keep saving for some weddings in a few years.

My awful sense of humour- refusing to face reality while it kicks me in the head- will keep me chugging along.

This blog is my stories of family related incidents, events, happenings, you know, anything I can have some fun with. The other blogs are exactly what they are too, refusing to face reality on its terms and making the world do the right thing on my terms. Should I start another dealing with this MS reality?

The gels and boyz know that I have been told what I may have, and gel#1a looked it up, and sort of understands.

The weird thing is that my eldest boy used to do the MS-Readerthon nearly every year- a horrific thought to participating sponsors as the little bugger loved to read...

I aint stumbling about nor driving into traffic, but now I understand that spilt milk is not just clumsiness anymore. Or that is a way to look at it. Covers up or explains a fair bit the last few years- aint grief anymore either?