... .... ... wobbly teetering blogging

astray...

2013-12-08T16:25:00.002+11:00

Apologies to those who are getting random repeat sends of old posts from this blog.

I have developed a terrible rash of blood sucking spam of late: the interwebs tell me, it is my own fault for not having really posted the last few months. Queue sulky face...

For the three (or so ;) ) of you who are real who are still dropping by, I thank you heartily for your fortitude :)) and you will be noticing the changed layout no doubt too. Sighh, another world of gremlin mishaps: I thought I was just trying a 'preview' template and now can't get back to Kansas (you can never go back as someone once told me ;)) ) and this new template is terribly shaky ... wobbly even!

Mind the gap (S Sheriff original)

mind boggling wobbly teetering

2013-11-30T18:02:00.001+11:00

The Arabian 1002th Night Guo Pei Haute Couture (2010)
(You need to click into the actual post to be able to play the video clip.)
Good grief! Come and have a look.

knife's edge

2013-09-01T17:27:00.005+10:00

Wobbly teetering in extremis from Javier Pérez with 'En Puntas':

Javier Pérez - EN PUNTAS (extracts) from Javier Pérez on Vimeo.

ramp refused because she will 'probably die soon anyway'

2013-06-23T21:31:00.000+10:00

Things have to be pretty desperate to resort to putting your problem in the hands of a show like Today Tonight and I know Meg did so out of desperation.

Having lived in and owned her place for decades and having ms for decades she asked the body corporate that oversees where she lives to put in a ramp in place of the three steps that she has to traverse to access to her front door. A pretty simple sounding straightforward request you might think. She even offered to pay and yet the body corporate has repeatedly refused her, even trying to tell her that people would lose value on their properties if a ramp was installed. [insert exasperated expletive at this juncture]

Her situation highlights big gaps in the Disability Discrimination Act 1992 and the Access to Premise Standards 2011.

The Today Tonight video includes the revolting letter from Bruce Haddon, chair of the body corporate stating:
'Meg is in very poor health and may not live long ... when she passes away .. we will remove the ramp'

Interestingly enough he has been described by a judge as having a "considerable capacity for self-deception, and that he lacks insight into the way in which he conducts himself, and its impact on others".

And yet our laws are such that the discriminatory actions of such a man get to hold sway.

Here's a picture of him in case you were ever planning on going to one of his business 'motivational' talks and might want to pose a question or two to him:

Bruce Haddon discriminatory? you bet

And here's one of his self-help videos, where according to him the only things anyone needs are 'creativity and imagination' - compassion and empathy apparently not so. Hasn't someone led the sheltered privileged life of a middle-aged middle-class ableist white guy?

pimp your ride?

2013-06-16T12:20:00.000+10:00

Hmm entrepreneurial spirit in a consumer neo-lib world?

Keegan Lewis is lending advertising space on his power wheelchair in order to raise funds to acquire an all terrain wheelchair.

Keegan is a 17 year old teenager who is about a lot and who stands out so your rest assured that your material will be seen!

via the always eloquent Walking is overrated.

what we talk about when we talk about ms...

2013-06-03T18:07:00.000+10:00

Here's my talented spunky-rama friend Sophie being interviewed for World MS Day last week (29 May) on local radio.

She covers a lot of territory (that often gets skimmed over in other quarters) from:

the self-doubt of initially not being believed with the array of wacky early symptoms,

to contending with blatant employment discrimination,

to overcoming built barriers to get to her grad classes,

to the bearing chronic illness and disability have on identity ...and flexing resilience.

Click on through.

Mind the gap

have rollator, will camino mkII

2013-05-26T13:10:00.001+10:00

Consider popping over to Syl's Amawalker page to offer the caracoles peregrinos some encouragement and cheer as they have been braving and bracing the rain, dodgy pasta and wonky, weary bod's. Pilgrims indeed.Buen camino.

One scooter to go thanx?

2013-05-26T11:35:00.001+10:00

Today as I hobbled from the supermarket with carry bags in one arm and crutch clomping under the other, a lady zipped past me on one of these:

It looked niftier than the pic - she gave me one of those smiles as she zoomed past - she knew I was wondering. I did think about stopping her and asking for more details but thanks to the wonders of the internet I think I may have found some of what I was after:

Called the 'Travelscoot', looks like the supplier is in the US but there are agents in Australia (just outside metro melb's even, WA too).

There's two models: the standard at around $1600 in either currency and the more upmarket model (sturdier perhaps?) for more $2300 or so plus cost of a back up battery.

It did look more like a scooter from the school of scooters that were in fashion with kids a few years ago rather than the world of heavy duty heavy mobility land scootering - hey??

The trade-off obviously the flimsiness but hey at the mo' the bind for yours truly is needing a scooter that can be loaded and unloaded from the car as I am too far from accessible public transport (yes even 6km from the city centre shame on you Melbourne and countless state governments). It seems to bundle into a fairly tidy bundle, although degree of effort and difficulty a lil hard to judge.

Hers looked particularly sleek and shiny and I think she might have had one of these caddies as there was definitely a flash of red.

It's hard to tell from the website how long the battery lasts and some unnerving comments on the website about their potential to catch fire if they get to warm - hello Melbourne 8 months of the year, especially the car!

Thinking it might do the job for indoor sorts of roaming ala galleries, insanely oversized shopping centres and perhaps even getting to airport gates that assume walking as the sole option.

hmmm

neuro enhancing/fatigue alleviating: recommended reading

2013-05-04T12:20:00.004+10:00

MJ Hyland article regarding using Modafinil (or 'neuroenhancers') to minimise the impact of ms fatigue:

hmmm alien thinking?

'...
That's when Paul told me he'd used the drug, and changed my life.
Talbot's article, like many published since the mid-1990s, turned, in part, on the fuzzy ethics of the use of neuroenhancers. These controversial drugs, strictly licensed for the treatment of narcolepsy, sleep apnoea and ADHD, have become immensely popular among users without prescription because they promote a keen sense of wakefulness and sharper cognitive focus.
...
It's not known how many people are using neuroenhancers: the drug remains strictly off-licence in the UK and the US. But on 9 November 2011, the BBC's Newsnight tried to get closer to an answer by running an anonymous online questionnaire. There were 761 replies, from New Scientist readers and Newsnight viewers: 38% said they'd taken cognitive-enhancing drugs, 40% said they'd bought the drugs online, and 92% said they'd use them again.
These numbers are crude and anecdotal, and that's because, as Newsnight discovered, it's nigh on impossible to find hard data.
...
In the first weeks of using modafinil, I felt a bout of happiness, a steadily upward-moving mood; a strange and sustained euphoric effect. I doubt this heightened state was caused by the drug's pharmacological workings. It's more likely to have been brought on by pure relief, perhaps even the power of placebo. After more than two years of being made sluggish and clumsy by MS, my mind muddied and muted, I was wide awake. In the stuffy, darkened house of my head, all the windows and doors seemed to have been flung open and the air was crisp and cool.
...
I'm not cured of MS, of course – my right hand (and leg) still flags, still stiffens, still weakens – but the effects of modafinil have a way of sacking off the urge to quit. The mysterious workings of the drug seem, somehow, to trump or override physical weakness, and the effects allow me – compel me – to push through the pangs and the pains, and the pesky failings of my right hand.
In this hard-to-describe way, modafinil has revealed something more complicated.
...
In the US, modafinil has been trialled for MS patients (albeit on a small scale) and the results have been positive. Yet the drug remains off-licence, and in the UK there's still no sign of any major randomised controlled clinical trials.'

Full article at the UK's Guardian

She mentions people stopping using them because of the 'too good to be true' factor that begs caution in a Brave New World kinda way to my mind but the below the line comments also reveal the frequency and degree to which the general population tend to conflate cognitive and fatigue impacts with psychological variances.

Curiousier and curiouser
Anyone dabbled? And/or heard of 'neuroenhancers'?

have wheelchair assistance, will travel

2013-04-28T23:52:00.000+10:00

Museum of Old and New Art Where in the world??

Back at the start of the year, while cocooned in a never-ending stultifying summer lockdown, my friend msged me to say one of the domestic airlines here in Aus had tix on sale: 'let's snaffle some and get ourselves to David Walsh's MONA in Hobart town?'
Hell yeah.
For those farther afield than a sunburnt country, allow me to add some background:

Hobart lies across a wee strip of ocean from Melbournia (definitely Portland's wannabe cousin) and in this neck of the woods yr last significant city on your way to antartica - and significantly in MS speak: it stays cool!
You start to see where my impulsive 'hell yeah' came from? No matter that our tix were booked for April, three months and a whole season away.

The obligatory dodgy airline bit: thanks Jetstar
All to quick we found ourselves on the tarmac (so much for the online selection: why yes, I would like airline assistance that includes a wheelchair AND a staffer).

Alas my photo snapping abilities are about as adept as JETSTAR's ability to follow through on the 'type of assistance' it insists you select from - and nowhere near the efforts it employs to rort money out of punters booking 'onsale' tickets through an online system. Why sure, add an arbitrary $17 to my bill after I hit 'confirm' for an 'online administration fee' that wasn't mentioned at any earlier point.

I admit, the warning signs that this would not in fact be a 'cheap getaway' in lieu of taking travels to exotic foreign lands were there. If only I had held my gaze.

Here's a not-brief perspective from a 'why yes, how thoughtful, assistance would be dandy' perspective of an Easter sojourn to the Apple Isle:

Iconic Salamanca Markets
The first day we were there, the de rigeur Salamanaca Markets were on as they are every Saturday in Hobart. To boot our hotel was so close we could hear and see the bustle.

My friend went off on reconnaissance to find a way to blend my wobbly teetering with the mega popular touristica bustling anxiety-inducing crowds. We were pleasantly surprised to discover the Hobart Council offered a free wheelchair service. Let's just say, you get what you pay for:

Nothing says incapacitated like... an incapacitating chair

chair post 'modifications'

...
...
.....
These are the 'after' shots: after one of the two left foot plates had had some impromptu work done to it to make it a 'right' foot plate.
Yes, this is in a pub.
Why yes, that is my bag, not me, getting a free ride.

Sadly for you, thankfully for me, there are no images that captured me hanging on for dear life as we trundled about. I did have at least three people ask if I wouldn't mind if they prayed for me. Coincidence?? Or hobby of the region?

Desperate times, desperate measures. Above is the day's special at said pub.While tempting, we settled for one of the specialities of the region (!): chili mussels with hot chips and a pot of beer. Highly recommended for those conquering dodgy council loan wheelchairs.

In the interests of sharing the ambience: here's one of the 'authentic' stained glass pictures that adorned the bar:

Look closely at your own peril

We were so late getting back to the information booth, that it had been packed up and 30 seconds later there would have been no sign even of an information booth. Maybe they have been wanting it to get 'misplaced'??

Moody Musing MONA

The windswept lawns at MONA (with pyramid installation)

This is what we had come for, after all.

First (well, second, everyone else had gotten off at the real entrance):The low rent landing dock for wobbly teeterers (click to check out the main 'james bond vilain island' landing!)

The golf buggy highway for wobbly teeterers to the entrance - again contrast with the main James Bond villain entrance

The deceptive entrance to the main event: abstract mural or distorting mirror? ... or both?

No happy-snapping inside the gallery: you get given an ipod as you arrive that curates you around the art as it can 'read' where you are in the gallery and conjure up the lowdown on the works nearest to you. Categories include: 'Wank' and 'Gonzo'. You are meant to 'save' the items you liked (or wanted to remember) as you go along and it will email the whole bunch of them to you. Sadly, in my haste to escape the complimentary humunguous wheelchair, I forgot to do so before handing my ipod back.

True this wheelchair did come with the theoretic advantage that someone in it might actually be able to wheel themself. However, I kept having the discombobulating sensation that perhaps I had stumbled down Alice's rabbithole (rather than descended the James Bond lift to the third level where the gallery has everyone begin) and had drunk some of Alice's DRINK ME potion (or is it the EAT ME) that shrinks her but my gwds I had never been in a wheelchair of such breadth.

And not just breadth: it was hard to stay from slouching and sliding out of the chair - and casting me far more decrepit looking than was the actual case as a consequence - while my friend generously tried to push it (and me and our gear) around because my feet couldn't properly touch the foot plates (thankfully there was a left and a right foot plate this time, yay for small mercies) which meant it was awfully hard to stay in the chair ... or focussed on the art for that matter...


giving said chair some room to move

I decided it would be easier if I got out and used it as a kind of ginormous unwieldy walker. It sure got people out of my way and plenty of sidelong glances. I suspect some people thought I may have been one of the eccentric installations pushing my empty gi-normous wheelchair around...

Alas so wide, at one point there was a musical tunnel I entered - again rather Alice-like - at the other end the exit out was rather smaller than the entrance in had been (although the self opening glass doors I entered through had been no mean feat either). I'd thought it must have been the way to the lift and the way back to the main entrance. (I'd long lost my friend in the low lit subterranean galleries.) Actually, it lead into a series of even smaller spirally passageways filled with people and certainly without room to turn back plus the distinctly unpromising prospect that going forward was A Sensible Thing. People were looking at me with some consternation - if there'd been room they would have lent away. Eventually I was relunctantly rescued by a black-clad MONA person who cleared the way I had come of punters while I s-l-o-w-l-y reversed myself back to the tunnel... Good times!

Wim Delvoye's cement truck scultpure: it seemed a necessary addition at the time

the Tasmanian tiger: a bit of australiana MONA style

Token obligatory foodie shot at Smolt

Special mentions:

Oysters
Fab local artisan and fresh food is Hobart's other ever growing fame it is claiming. Half price oysters day at the bar attached to our accom before our late flight back meant I ate as many oysters as I had probably eaten in my entire life prior to the trip in that trip - sooper yummo and fresh they were gone every time long before I would remember to get my camera out. :P

Pick up stick
The design fault of sticks everywhere - you know the one, sure you do: tangling in people's feet no matter where you put them, turned out it could work as a winning pick up line: who knew? Again, perhaps a Tasmanian thing... not to play to sterotypes :)) but let's just say oyster farms and his murky connections working for David Walsh made for a veryily entertaining evening once I had ever so daintly tripped him up with my stick. Ha.

Contraptions to get me back to Melbournia: going up? (Perhaps better known as a 'forklift')

The red-eye flight back cabin staff were a hoot; benefits of our up the front seating - if you are also requesting assistance don't bother to pay for a seat as Jetstar try to get everyone to do, as you will be put in the second row irrespective ... seats that otherwise cost a premium to book, such be the ways of the world. It also meant we got the fall benefit of the flirtatious (with each other) stewards and as we were last off the whole crew revelled us with airline cabin staff urban legends: 'trust me'.

At Melbourne airport again the ground staff abandoned us once we were off the tarmac and left us to our own devices to wheel the deserted halls and departure lounges and concourse - again, irrespective of the option selected that a staff member assist, apparently not, if you are on Jetstar's last flight in for the evening. In fact, we could have packed the wheelchair in the car - I guess they know they are not very tempting for would be wheelchair theives??

Wow managing to look blind as well as 'wheelchair-ridden' lol: Don't be fooled by the abstract art/distortion mirror entrance making the chair look slimline - yes the same entrance pictured earlier above.

Many thanks to my partner in crime, the fab Ms P for suggesting the jaunt in the first place - and I wouldn't have seen half as much without her adept wheelie manoeuvring skills under extreme conditions!!

things afoot!!! (excessive exclamation mark usage required)

2013-04-23T20:26:00.003+10:00

oooh big adventures afoot, folks

On to the adventurers whose plans I have mentioned in ghosts of posts past (Dave here & here and Slomo camino here) but now the real deal is about to unfold, feeling the anticipation, even as a couch potato well-wisher :P

The sloooow way? Way way ... or no way :))

Sil's Slow Camino-ing pilgrims over at Amawalker are just a couple of weeks off kicking off and even though I am not able to join them (play smallest violin in the world for me at this juncture), I find myself reading about the amazing camino-ing Sil has woven together with an increasing sense of anticipation. Can only imagine how excited they all are with the countdown to May.

Like my trip - in fact it must be the ~~two~~ eeek three-year anniversary since my trip, time flies hey - they will be starting in Sarria in order to walk the final 100km of the ancient Santiago de Compostela camino.

potential line in camino footwear??

Her latest post gives a bit of background to the feisty peregrinos doing their last minute hiking stick checks, poncho and hiking shoe perusals ... could it be true?? perhaps even a rollator or two??... who will be joining her, which only adds to that sense of anticipation. Let alone the postcards back if the rumours that a Trionic Veloped might be making the journey are true???
Buen camino, peregrinos.

Flying leaps of faith Oz style
Almost at the same time, Dave starts on his epic flight around Australia come April 29. Yes: REALLY soon, something like five more sleeps!! It is not so much a raising funds exercise (although donations are always welcome) as to raise mainstream expectations of what people with quadriplegia are capable of (and others with disabilities and impairments too). It's been five or six years since he first started toying with the idea - I can't begin to imagine how excited he and his team must be as they head into the countdown.
Get the low down at his blog and website On A Wing And A Chair.

(Should be just the armchair travel to mollify yours truly's dreadful lapse in letting my passport run out last month AND motivate me into the paperwork traipse to rectify that disconcerting lack , eek)

Blue skies, adventurers: Wishing you grins ago go!!

pleasure and pain: no saccharine

2013-04-22T20:35:00.002+10:00

Vale Chrissie Amphlett, one sassy lady of rocknroll who never fell for the saccharine :

"Unfortunately the last 18 months have been a real challenge for me having breast cancer and MS and all the new places that will take you," she wrote.
"You become sadly a patient in a world of waiting rooms, waiting sometimes hours for a result or an appointment.
"You spend a lot time in cold machines... hospital beds, on your knees praying for miracles, operating rooms, tests after tests, looking at healthy people skip down the street like you once did and you took it all for granted and now wish you could do that.
"I have not stopped singing throughout all this in my dreams and to be once again performing and doing what I love to do."

More at the ABC news website.

Here's some vintage 80s Divinyls telling it how it was and still is:

hospital revolution ...with velcro

2013-03-28T10:00:00.000+11:00

Anyone who has spent any time admitted to a hospital knows this indignity all too well so
not before time:

A new Velcro suit for hospital patients could spell the beginning of the end of the traditional backless gown, according to its designers.
Health chiefs at Birmingham children's hospital have unveiled the suits being used on some of its wards.
The Dignity Giving Suits for patients are the first of their type to be used in British hospitals. They have been universally welcomed by the hospital's doctors, surgeons, nurses and also patients, who have been trialling them.
The wraparound suits, designed and made by a UK company, have Velcro button fastenings along the seams, doing away with the flimsy tie-backs of the traditional backless gowns.
Chief nurse Michelle McLoughlin said she had wanted young patients to feel "protected, safe and secure", and the old gowns were failing to do that, so hospital chiefs authorised a replacement.
When it became clear there was no off-the-shelf solution, they started from scratch, she said. The process from idea to manufacture took 18 months.
McLoughlin said the suits were proving so popular children have been asking to take them home while parents have been bemoaning the fact they are only available to children.

more at the UK Guardian

tots ridic: insurance company declares chairs 'should be destroyed or dumped'

2013-02-17T10:16:00.000+11:00

Via the Sydney Morning Herald

PEOPLE with a disability protested at Bondi Beach ... against a plan by Surf Life Saving Australia to ban its clubs from providing beach wheelchairs that help them in the water.
Beach wheelchairs are fitted with inflatable tyres that allow them to travel over sand and float in the surf. The wheelchairs have been donated to several surf clubs by councils and charitable organisations.
The Disabled Surfers Association says SLSA has plans to force clubs to return or discard the wheelchairs because they make the clubs' liability insurance too costly.
Emails seen by the Herald, which were written by John Provan, of Jardine Lloyd Thompson, SLSA's insurance broker, direct clubs to return the chairs to donors or ''have them destroyed or dumped'' because of liability concerns.

Guessing a gaggle of these lil numbers would REALLY freak out the likes of Jardine Lloyd Thompson:


the little known 'inflatable' walker, hmm

Update Feb2013: thankfully SLSA are declaring it a ridiculous thing - oh but only after the Disabled Surfers Association of Aus protested to them about it, sheesh

'I think differently' car parking toolkit

2013-02-10T11:20:00.001+11:00

lerrrv this - from the Aotearoa NZ Social Change Toolkit via the always fab Rolling Rains report, taking a 'don't get mad, get even' philosophy:

windscreen notices ago go

Here's how it works:

The toolkit has three key purposes:
To reframe and rename disability in order to focus on uniqueness and resilience rather than abnormality and deficit.
To put into practice Gandhi's idea that, in order to change the world, we must first changeourselves to reflect the change we wish to see in the world.
To find new ways for people who experience disability (and those who don't, yet) to interact with each other.

Head over to Rolling Rains to download your own notices to have at the ready to place on rogue windscreens. Noice huh?

fampridine active ingredient and less expensive pathways

2013-01-28T16:27:00.003+11:00

... namely via compounding pharmacies (ala ldn) with a script for 4-Aminopyridine (potassium channel blocker).

This from an older article over at medscape:

On the basis of nonclinical evidence suggesting that the drug enhances action potential conduction in demyelinated nerve fibers, fampridine has been compounded in pharmacies and used off-label to improve walking in a number of neurological conditions for more than 20 years. "That off-label use was not based on substantial evidence from adequate and well controlled studies," the document notes.

Hmm, I kinda suspect Biogen and its concern for our walking does not extend so far as to mention that aspect.

Given, as I have previously mentioned, fampridine as Fampyra is really just a re-branding and re-purposing (and not of course the first drug in ms land to pop up with accompanying price hike in such a manner), this means if all you are after is the generic active ingredient..... rather than the expensive pharmaceutical marketing factor then it seems there is the possibility to get yee self with a generic script to a compounding pharm, hand over a more manageable $80 or so buckaroos a month and you are on your way??

Albeit still kind of pricey for an ongoing basis but decidedly less than the marketed version - even with its 'fourth month free' offer through a very specific online pharmacy that demands a heightened amount of personal info and history to do so. (Who knows, here in Oz if you have extras health insurance and if it is available on a private script then it might even be possible to get some of that back - don't quote me on that!)

MSNZ have a helpful page about it, including compounding pharmacy contact:

4-AP can be obtained from compounding pharmacies as a slow release formulation by compounding it with Methocel. But there is still a risk of inconsistent and excess dosing so it is recommended that the dosage is ramped starting on a lower dose and that you are careful to be aware of any side effects that you may experience.

Neether, neither...??

While that may minimise the current cost dilemma associated with it (not being on the subsidised PBS here in Oz), the many other dilemmas associated with it remain:

- dodgy side effects
- danger of seizures if dose is too high or too soon
- bird poison into one's body on an ongoing basis
- what happens if you want to stop? Will it mean a rapid deterioration from what it has been 'buffering' against?
- how long can it be useful for? Presumably if you are getting progession and this helps buffer against that at some point it becomes moot the difference it is making, yeah?

Plus some new questions, like:
- where the hell IS my nearest compounding pharmacy?
- do I know a doctor who is open to this sort of prescribing? (I suspect most neuros are too square to contemplate it.)
- who can I rustle up if my doc is a no goer?
- (in Aus) why did the PBAC refuse to place it on the PBS subsidised listings?

A google search doesn't take long to find more info from compounding pharmacies already doing this. Perhaps this way of accessing it is common knowledge around the cyber forums grapevine too?? It was mentioned to me word of mouth (I know, I know that old chestnut communication tool :D). Here's one in the Melbourne area familiar with fampridine requests.

Here is the PBAC's response to the last question posed above:

The PBAC rejected the submission on the basis of unclear evidence of clinical benefit and that the economic analysis did not provide sufficient basis to conclude that treatment with fampridine is cost-effective.

Now if 'they' were promising some (ahemm keep yr pantz on), big-hair boot-walking results a lil more like this, I might be a lil more motivated to bother :))

One of these daze these boots, big pharma, one of these daze ... :))

(For a comprehensive writeup on just how far back the history goes on this drug check out Lisa's 2008(!) post about it over at Brass and Ivory. Veryily interesting reading.)

I also wrote in July 2012 about my experience using the branded version.

gaits style: in a fashion

2013-01-27T13:33:00.001+11:00

From the Smart Set at Drexel University, some discussion on gait norms from an historical perspective:

...

In truth, it’s not a very sensible way to get around (goose-stepping injuries weren’t uncommon among soldiers), but it was taught to instill discipline among the troops. More so, it served well in ceremonial public displays — to demonstrate a leader could turn men into machines. The step invariably involved boots brought down in unison, smartly and loudly, giving a platoon the invincible sound of a well-lubricated machine. Message: Resistance is futile.

...

The debate over walking styles spilled over into civilian circles in the early years of the last century, when long-distance walking enjoyed a brief mania. “The correct step may be learned in the drawing room,” instructed one 1903 British manual. “There is no difficulty about it. It may be tried now.” The book was comprehensively entitled, How to Walk, Describing the Whole Art of Training Without a Trainer. Full Instructions and Hints for Those who Intend Entering Walking Contests Either for Short Or Long Distances, and a Special Chapter on Walking for Women.

...

That’s not to say we’ve lost the vocabulary: there’s shamble, shuffle, stroll, tramp, tromp, slog, saunter, amble, trudge, plod, dawdle, march, stride, traipse, and mosey. But they tend to exist now in a sort of vocabulary ghetto, employed chiefly by hard-up novelists looking for a shortcut to describe two things at once: mood and mobility. (“Marching toward Bethlehem” is a much different proposition than “slouching toward Bethlehem.”)

,,,

Our natural gait, it turns out, defines us as humans. Not speaking broadly — that we’re only truly bipedal mammal on the earth, blah blah blah — but as individuals. Researchers are increasingly convinced that how we walk can identify us as unique individuals, much like a fingerprint or retina scan.

Hmmm I've never thought to try goose-stepping as an alternate gait since my 'natural' one wandered off....

While I still walk, I can do not do all those types of walking listed above: dawdling, ambling, strolling, meandering, wandering, hurrying... I haven't tried lately (:P ) but pretty sure marching is off the cards theza daze...

Anyone else resistant to the idea of an identifying 'natural' gait? What does that say about people whose gait has changed or wandered off?

*[bolds my adds]

have crutch tips, will beach comb for beach bounty

2013-01-13T15:36:00.001+11:00

the Australian standard

It's beach time of the year in this corner of the world (yeah, yeah, bushfires too). I've missed going to the beach. Up til last summer (when I ventured to one for the first time in nearly a decade), I had just decided it was too challenging a terrain in theseza daze of wobbly teetering ... and to just errck 'suck it up princess', knowing how integral it is to the summer socialising and holidaying here. So, yes, lots of social consequences of wobbly teetering too at this time of year.

In my cabin fever lockdown over the 40C barrage daze of the last few weeks, I've had plenty of time to rummage around in cooler cyberspaces for what others have come up with to keep them in the great outdoors without the angst I've attached to it.

WIP
It's a mixed bag and not possible at this stage to do an equal comparison of the Good, the Bad and the Ugly, as not all that I have found seem to be available in all locations. While online ordering is an option, some of them are things that are difficult to judge just from a pic and to have to commit to purchase on such a basis. :P

Snow mo' too?
For those more concerned about snow at the mo', interestingly some of the options have potential both for snow and sand (and otherwise challenging surfaces).

I love the sound/look/style of the Sidestix.
For now I have ordered a Flexifoot, which have just come available in Australia in the last year or so - albeit this does not address the get thee to a beach factor, oops :))

On a side note:
Raaathr pleased to note the improvements on the NSW Independent Living Centre which now has some good, clear and easy to access info on general cost and locations of sellers (mostly in NSW and Victoria) and to relevant websites in Australia.

Shame the Victorian one remains less user friendly with its poor navigation and endless click throughs to actually get to the info you want but, at least, they too have improved the info it is populated with and are including cost info even if other aspects remain somewhat limited and frustrating.

Beach bounty?

Fetterman tips

for crutch or walking stick at the beach

Availability:
Only through the Fetterman site in the US as far as can tell.

Fetterman's beach tip: yay? nay?

Looks a bit odd to me. Has anyone tried these out?
Cost: USD$20 each

Sidestix

accessories for beach and snow
but not sure if adaptable for crutches other than theirs
(their crutches look ace but $$$ and only available in North America as far as can tell :(( )

Available:
Retail locations in Canada and USA only.

Sandstorm Sidestix for beach and snow... possibly even mud??

Cost: CAN$150 for a pair

Snowshoe assembly Sidestix for fresh snow, ...beach sand mebbe too??

Cost: CAN$200 for a pair

Fetterman's Tornado tips

For non-slip stability and shock absorption rather than beach or snow, but at least expands capabilities on more uneven, slippery and sloping terrains.

Tornado tip for sturdiness and shock absorption, rather than snow or beach

Cost and availability:
USD$17-58 via Fetterman's depending on which sort you choose
CAN$30 a pair via Sidestix
AUD$42 (not clear per item or if as a pair) via NSW ILS for more details
Sorry Brits and Europas can't find your local suppliers but should be able to order via the US.

Flexifoot:

Not for beach or snow, but hey, on uneven surfaces and sloping cambre meant to be superior to the standard crutch tip.

Available in the UK, Europe and Australia.
(Not yet available in USA but you can leave details to be notified when they do.
Canadians can order through the UK site.)

Flexifoot crutch tip for uneven surfaces

Yours truly is awaiting delivery to try these out. Stay tuned for lowdown ... umm true that still doesn't help get me to the beach in time :O

Cost:
AUD$34 each
UK £11 each (which suggests ordering through the UK site would have been a better idea!)
USD n/a

Europas, Canadians and Scandinavians ordering can check UK site

True other more standard bog uglies that are available in Aus to help with shock absorption and stability but not for beach or snow (or mud!)...

Bog ugly: seriously, could it be any more depressing??

And so, while - heartened that there is a search to be had; at least for now, the beach bounty search continues ... :))

get your motor running .... with a wing and a chair

2013-01-11T13:33:00.000+11:00

I blogged awhiles back about my friend, Dave, who is planning to fly solo around Australia. He has quadriplegia so by doing so he will also become the first person with quadriplegia to achieve such a goal.

The start of this year saw him undertake a mini-practice trip taking off from the outskirts of Melbourne, going via the foodies' paradise that is King Island and over to South Australia amid diabolical weather and bushfires and then doing the trip in reverse. You can read his recent very engaging posts about it over at his blog and on the facebook page 'On a Wing and a Chair'.

He's also done a bit of press at the major dailies in Melb's to kick off the year.

On a Wing and a Chair: Herald Sun article 4 jan 2013

What a difference an adequate support scheme makes
A tad disappointing that the media coverage has focussed on his mantra of: 'You are only limited by what you think you can do' (The Age, 4/1/13) without any acknowledgement or context of the significant bearing having access to an insurance scheme has meant for him having adequate support for his circumstances (such as carers in his home every day and home renovations) - and how vitally this underpins achieving the ordinary goals before the extraordinary goals can be contemplated.

TAC compensation scheme
Here in Victoria, because Dave's quadriplegia was the result of a vehicle accident he had and continues to have access to Transport Accident Commission no-fault compensation, introduced into legislation in this state in the mid-80s.

National disability scheme
Here in Australia, in July of this year, the federal government is about to launch trial sites of a national disability scheme that is also about providing adequate supports to those who need it, but significantly eligibility goes far beyond only those who were in a vehicle accident, indeed how the disability/disabilities were acquired is not part of eligibility. (The full rollout, funding pending, is anticipated by 2018.)

The NDIS scheme, as it is known, is of course A Very Big Deal as the Every Australian Counts campaign has been at pains to raise awareness about and there is much still to be sorted about it. I find it hard not to view Dave's experience and plans as a prime example of just what a difference such a scheme has the potential to make for many more people.

At present, unlike Dave, most people with disability in Australia live at or below the poverty line (45% compared to 22% in the general popl'n) and are more likely than not to be unemployed (21st ranking out of 29 of OECD countries). Indeed were discouraged from even thinking about working. I know even with an insurance scheme, Dave has battled to convince others of what he is capable of and to be given the same sort of chances most take forgranted, that is the opportunity to demonstrate what he can do, rather than just assume what he can't.

Wishful thinking for most
For many people with disabilities just getting access to a carer so they can shower every day is kept from them, not by any limited thinking of their own - again, something the vast majority take for granted when they take a shower.

Similarly, many young people are being inappropriately placed into aged residences because they can not get adequate supports or the needed adjustments to make their home accessible.

Indeed another friend of mine of similar age to Dave and who like Dave owned his own home and was working full time (admittedly he never purchased a modified a light plane), has over the same time Dave has been planning his trip been forced into a closed aged care facility on the outskirts of Melbourne. This has meant having to give up his employment and has strained reasonable access to many of his social activities that were previously accessible by public transport from his home.

Extraordinary opportunity to be treated as ordinary
Sure an ambitious plan to fly around Australia is extraordinary but what a shame that Dave should also be thought extraordinary for wanting to work, own a home, get married and have an expensive hobby.

While one's thinking can limit one, the danger in only promoting this aspect - to what is a largely ignorant mainstream when it comes to disability - is that it implies a simplistic relationship that the difficulties people with disabilities face just require the individual to try harder or be a bit more ambitious.

It also has the danger of perpetuating entrenched stereotypes about people with impairments that there are only two extremes: one of the 'oh gosh! superhuman overcoming odds' variety or 'what a shame and a pity' variety. Both are belittling and deny people's normality as active members and contributors in their communities because in both extremes the person is only being defined by their disability.

As the Reuters article on 'zombie titles' that I posted prior to this exemplifies, often the mire people find themself embroiled in is far more complex than just a matter of the individual concerned changing their thinking...

Best wishes to Dave as the main On a Wing and a Chair event takes off in Autumn (29 April here).

How cool would it be if it is reported in context of the other launch that is hot on its heels come July 2013: the National Disability Scheme? ... or even just about the community and government's capability to re-think 'normal' as that of ensuring all have access to the opportunity to achieve the ordinary and that aiming for the extraordinary becomes an optional extra?

Just like Billy Bragg says: waiting....

just appalling

2013-01-11T11:13:00.000+11:00

'Zombie titles'

I find this incredibly bleak but vital reading.

I post it because in the several examples drawn on the person concerned is also having to cope with serious illness - and the 'zombie title' is impacting dramatically on their access to medical help.


Wishful thinking? on 16th and Vine Streets, Philadelphia, Zenos Frudakis' 'Freedom'

As if the lows the multinational and US banks stooped to - and largely got away with - during the financial crisis weren't bad enough, this is even more disgusting; who are these people that decide this is okay to show such a lack of responsibility and disdain for fellow humans?

(Reuters) - Joseph Keller doesn't expect he'll live to see the end of 2013. He blames the house at 190 Avondale Avenue.

Five years ago, Keller, 10 months behind on his mortgage payments, received notice of a foreclosure judgment from JP Morgan Chase. In a few weeks, the bank said, his three-story house with gray vinyl siding in Columbus, Ohio, would be put up for auction at a sheriff's sale.

The 58-year-old former social worker and his wife, Jennifer, packed up their home of 13 years and moved in with their daughter. Joseph thought he would never have anything to do with the house again. And for about a year, he didn't.

Then it started to stalk him.

First, in 2010, the county sued Keller because the house, already picked clean by scavengers, was in a shambles, its hanging gutters and collapsed garage in violation of local housing code. Then the tax collector started sending Keller notices about mounting back taxes, sewer fees and bills for weed and waste removal. And last year, Chase's debt collector began pressing Keller to pay his mortgage, which had swollen, with penalties and fees, from $62,100.27 to $84,194.69.

The worst news came last January, when the Social Security Administration rejected Keller's application for disability benefits; the "asset" on Avondale Avenue rendered him ineligible. Keller's medical problems include advanced liver disease, hepatitis C and inactive tuberculosis. Without disability coverage, he can't get the liver transplant he needs to stay alive.
"I can't make it end," says Keller. "This house, I can't get out."

...

WITH IMPUNITY

The Kellers are caught up in a little-known horror of the U.S. housing bust: the zombie title. Six years in, thousands of homeowners are finding themselves legally liable for houses they didn't know they still owned after banks decided it wasn't worth their while to complete foreclosures on them. With impunity, banks have been walking away from foreclosures

...

By walking away, banks can at least reap the insurance, tax and accounting benefits from documenting the loss — without having to take on any of the costs and responsibilities of ownership, according to a 2010 Federal Reserve paper. A walk-away also enables them to "sell the unpaid debt to debt collectors, sometimes noting to the court that the loan has been charged off," according to a Case Western Reserve University study released in 2011.

No regulations require that banks let homeowners know when they change their minds about a foreclosure. So they rarely do, according to housing court judges, homeowners' lawyers and academics who study foreclosure problems. "The banks do not answer inquiries, they do not answer phone calls, they do not answer letters," says Judge Patrick Carney of the Buffalo, New York, Housing Court. His zombie-title caseload has swollen in the past few years to well into the hundreds.

Full indepth Reuters article available here

Michael Leunig's No Understanding

Have all terrain rollator, in a word: ... 'bloody excellent'

2013-01-07T22:01:00.002+11:00

**And now for the lowdown on all things all-terrain with the Trionic Veloped from guess poster, KB^:**

... oops, that's two words I think (compromised brain :-) ).

Short answer to the question, "Do I like it?" is an emphatic "Yes". I credit it and the hour daily dog walks with assisting my legs to lift better, etc. (only cos there is nothing else to credit in this regard) ... as evidenced during my weekly Tuesday personal training sessions.

I took it recently to Life Tec (assistive technology provider in sunny Queensland). I rang, suggested they view the Trionic website, and asked if they wanted to see it. I then met with fully seven(!) interested OTs who probed, prodded, gasped and gleefully pronounced it to be, categorically, A Fab Thing. By the way there's quite a few photos on facebook .

KB headin for the great outdoors with his brand spankin new 'bloody excellent' wheels*

But yes, an update, on the Velociraptor (er, Veloped) ... have had it for two days now, been going down along the creek (one of Brissie's main dog parks, a long one). I found y'day (day 2) that if I leave my scrawny fingers touching the sides of the brakes I can really hoover along, and when I snare my feet (as happens every 10 to 20 metres) instead of tripping I can just jab the brakes and I'm good as gold ... and this allows me to walk rapidly by my previous standards. I'm also getting used to again being able to walk looking straight ahead and not having to stare at the ground to see where my stinky big feet are at.

So 10 out of 10. It is largish to lift into the boot of my car, but not difficult for me, and that's with the wheels on. To take wheels off is brilliant, literally a second ... brilliantly engineered.

I bought the touring model; the lock I think the only accessory. Cost varies with current currency fluctuations, and I rationalise that at a squeak over AUD$1k many bicycles cost exponentially more these days.

If I'd been home on Wed it would have arrived then .. ie only 6 days from Sweden to Australia, AND pay after delivery. (Stefan, the inventor/owner is a great guy, very trusting and top guy to deal with.) After problems with agents (and no doubt, margins) he/Trionic prefers to sell directly these days.

Trionic is a Swedish company (in Uppsala, a university town noted for its medical research) .. but latest models are manufactured in Germany. (Stefan tells me he used to work for German companies.)

I'm a very happy camper with it ... the Veloped Tour just bumps along over the broken ground, and I zip along at a blinding pace :-)

toodles, KB

You know it :)) *

*all images courtesy of KB.

^ no commissions, kickbacks, monetary exhanges or otherwise were involved in the unbridled enthusiasm of this post: just a keen desire to keep exercising matched with appreciation of good design.

You can check out his ms blogging action too. G'onnnn you know you want to :))

Muchas gracias, KB!

Trumpets please: best ms blogs in 2012

2012-12-31T10:09:00.001+11:00

The trumpets of course are all mine, mine, mine but hey, not the worst way to finish off a rather topsy turvy year (even without the Mayans' dire predictions) :))

The folks over at Healthline popped my, yes my, wobbly teetering blog into their Top 20 for the year. Hahaa. (Umm rather curiously, and upon closer inspection, it seems it is a 'Top 18' and actually I am listed at No. 19. Nonetheless, aren't I chuffed and bemused in a Cheshire cat kind of way?!)
Illustrious ms blogging company, to say the least, to have scraped in with, and more than a lil tickled by the Healthline eds' spiel about yours truly, I can't help but share:

Artsy, spunky, and more than a little bit fun, this shoe-obsessed blogger takes MS to task on Wobbly Teetering Blogging. Che Koala brings her musings, MS updates, and crazy shoe photos to readers with some major pizzazz.
From rollators to conferences to majorly high-heeled travel shoes, Che dishes and deals the MS world a new one from her home in Australia. Learning and living the best life possible despite her condition, this diva dominates her online realm and offers readers a real treat.

Thanks spunky Healthline ed folk. It's not every day one gets called a 'diva'!

Actually, some well overdue rollator updates have been lying in wait ever so patiently - I even have a guest post-er popping over to give his lowdown on this lil baby:

The Trionic Veloped (although this be the 'golfers' model pictured)

In dem mean times, Happier New Years for all - much cheer.

I think this is a fitting film to find myself seeing on the last day of the year :)) :

hope yr all ready out there

2012-12-24T11:28:00.001+11:00

Somehow I think of this about this time of year:

Lots of Merry Christmas cheer, so glad whenever you drop by here :))


Collins st, Melbourne

hot summer nights in Melb's (St Kilda)

Get on yer bike

2012-12-23T10:18:00.003+11:00

Another one from the backlog, this one from the UK's Guardian 2 October:

Paralympics show how cycling fits almost any impairment

From tandem time trial bikes to hand cycles, bikes are just about the most adaptable sports equipment you can get

...

...it took 11 days of covering Paralympic cycling for the Guardian to fully appreciate how incredibly flexible the bike is when it comes to catering for disabilities....

Just in the velodrome, bikes were adapted for a huge range of body types. At one end of the scale, riders like Britain's famously sweary (and, in my view, utterly robbed) Jody Cundy require little more than a prosthetic leg fitted with its own pedal cleat.
Meanwhile, in the C1 class, for those with the most severe impairments, Spain's Juan Jose Mendez has a single-sided hadlebar and an adapted saddle on which to rest his partially amputated left leg. There's not many 48-year-olds who can ride a standing kilometre in under 1m 17s. Doing so without an entire arm and most of a leg, the result of a motorbike accident, seems almost beyond belief.
There was still more variation in the outdoor road events, with lightweight racing trikes for those whose balance makes using a traditional bike difficult – generally those with cerebral palsy – and, of course, the hand cycles of the sort used by ex-F1 driver Alex Zanardi to win two gold medals.

...
had two main responses from my week-and-a-bit of Paralympics cycling. Well, three actually, if you include dumb, awestruck admiration for Sarah Storey, perhaps the most dominant athlete I've ever seen perform.
Firstly, the bike geek in me was desperate to try out some of the exotic machines on show. I was particularly taken with the tandems, used by blind or partially sighted athletes along with a sighted "pilot". If the track versions looked fun, the time trial tandems were amazing, making an almost jet-like whoosh as they shot past.I also had renewed admiration for the bicycle and its endless possible variations. I can't think of another sport which can be pursued by such a range of people all doing, to greater or lesser extents, the same thing.

....
For a wider story I've written about a post-London 2012 boom in all Paralympic sports I spoke to Sue Blandford from Wythenshawe Wheelers, one of the bigger disabled bike clubs in the country. She filled me in on the even greater variety of machines available for leisure riders, including four-wheeled quads, side-by-side tandems and even bikes with a platform for a wheelchair.

...

Find the full story

What are you looking at?

2012-09-23T14:34:00.002+10:00

Here in Melbournia we do indeed rather like to think of ourselves as groovers and the heart of all things artsy fartsy and groovearmada festivally in the country. So I guess, it's not really surprising on that basis that it is the home of the only disability film festival in the country: The Other Film Festival (a title, that is itself a bit of an injoke for anyone who knows Melbourne's other other (quite inaccessible) film festival).

Tardy post, there's only a couple of sessions left before this year's wrap up.

I'm off to the final session this eve, called 'Walk a Mile in My Shoes' with a French film about a single girl in the city called 'Left Foot Cinderella' and a Mozambique doco, Body and Soul about three people navigating the physical and social obstacles that surround them.

I've nicked their promo for those further afield to give you a bit of a taster of the vibe:

Melbournia's Other Film Festival

Here's their link to Other Other Festivals in other parts of the globe, in case you are not in Melb's this fine afternoon. Yeah? yeah.