Well I tried the Across software and I didn’t even need the 30 minutes trial. It basically just makes whatever device you are controlling just becomes an extension of the computer you are using kind of like having 2 monitors, and allows you to drag your mouse from your computer screen to a little very hard to see dot on your iPhone and you use…

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The 2 factor authentication stuff where they send a code to your phone is literally one of my biggest roadblocks at the moment. Earlier this year I lost the use of my hands so everything is on PC and voice controlled now. It took me awhile just to use a computer again but I got that down pat and now it seems nearly everything I do requires me…

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“Roll hard or roll home!”

“I used to have a somewhat negative view of life with SMA and a disability. But I’ve been able to see that life truly is beautiful, especially with SMA. It makes those sweet moments that much sweeter.”

Does it? How’s someone whose always had SMA make that call without having experienced an alternative?

Sorry to be cynical but if she woke up… Read more

Great question. I’ve been wrestling with the same thoughts but around cooking. I have cooked and loved cooking since I was a little kid. All my mum, grandparents, aunties, uncles etc. could cook but by about 17 I was better and that became my thing; family gathering? What’s Adam got on the menu?

It took me ages but I loved preparing… Read more

Absolutely bad mood right off the bat! As if being hungry doesn’t make you grouchy already you just wanna hop outta bed & go cook/order something & devour it. But by the time I’m up & ready for any of that I’m over it.

Yeah, I think I always dream but only remember maybe two or three every few months. They are very vivid while others just seem to fade away in my memory no matter how much I try and recall them when I wake up.

Dreams fascinate me. Like your brain is powering along while you’re out cold, with almost no control over any of it, your brain is… Read more

Very well put, Susana.

Simple fact is there is no vay-cay from this. In fact going on “vacation” is more stressful than just staying in the holding pattern of everyday life.

I try make everyday a holiday; sleep late, drink too much, eat what I want, whatever – I aint getting any healthier anyway & life isn’t gonna improve as I age. Eating is difficult now & booze… Read more

Always driving or at least in my chair in a vehicle. Whenever in a vehicle almost always the driver is the cab driver who drover me to school & back for 7yrs. He killed himself nearly 20yrs ago.

When just in my chair I’m either really skilful (usually back playing sport) or my battery is dying and I’m traveling uphill and I can’t do something… Read more

Never heard of it. A whole month hey? Everyday here seems devoted to a cause with its own colour ribbon so I tune out.

I used to hate International Day of People with Disabilities (or whatever it is) when I worked. Became like a mascot and it felt like people went out of their way to engage in pointless conversation with me.

Personally I… Read more

I despise the wasteful commercial aspect of xmas & refused the trading of meaningless crap with others for a while now.

The festive season is also peak drought & fire season in Oz so I make donations to places that help the injured wildlife or deliver water to farmers.

The best way to let people know would be to tell them you’ll be making… Read more

F Is For Family on Netflix.

Cartoon by Bill Burr set in 70’s. If you like his comedy you’ll like this.

They showed up 2hrs early because the vax was gonna reach it’s “too long outta deep freeze” or something. I was in bed still.

2nd shot knocked me round a bit for 24hrs. Worth it but, now I get awesome 5G and Bill Gates talks to me in my sleep.

Guys with MD I played sport with 15+ years ago used gel like pouches they’d snap to release heat & you could boil them or something to re-use.

I found a chemist a couple years ago that had these little tea bag like things you rub in your hands & they get hot for 50cents each. I brought em all. They helped warm my right hand to help my left… Read more

Yep totally get you.

Especially “It hasn’t clicked that if they put the cup in a specific spot now it means they won’t have to get me something to drink down the road.”

Take an extra minute now to get it right & you won’t have me complaining later. Simples!

As Blake says they’re being paid too. Sometimes its hard not to raise your voice &… Read more

I headbutted my family doctor when I was like 8 in an attempt to stop him taking a blood test while my mum & grandfather held me down. My veins have always been hard to hit too so never was a quick or easy process. They’d make me push my manual chair around the car park for ages beforehand to try get the veins pumped up & easier to find.

Jab… Read more

I told my needle giver “I’m gonna look over here & continue rambling & you just stick me without any warn-” and she says “all done!”

I have an irrational phobia of needles. Anyone describing how far its going in etc. would have to chase me down the street! I had 3 beers, some weed & meditated before they got here to calm the nerves lol

This sounds like an absolute clusterfu … umm, schamozzle. Like no one who should know knows anything or are just passing the buck hoping you shut up & go away.

In situations like this I hit the phones & break balls until I get answers. If I don’t like the answer I become a pain in their bosses arse. Threaten things like going to the… Read more

I’m in a whole different country so I have zero knowledge in regards to your particular situation.

Personally I’d take the place and tackle the other BS if/when that crops up. You’ve already done a lot of working & waiting to get this far, I wouldn’t flush all that too easily. Right now you got no unit & a potential problem – you could have… Read more

I figure I’m toast if I get C19, that’s almost certain to happen without the vax. The vax like anything has risks too but the odds are much better. I’m more likely to die in a road accident on my way home.

I’m interested to know what “I did my own research” involves for people who say that. Like, you been slaving away in the laboratory… Read more

Ketchup every day – 3 times daily even is preferred over hitting dog crap once! Ketchup doesn’t smoosh into the tread of your tires and need to be picked out with a stick. Ketchup will rinse away under the hose. The smell might linger but I’ll happily sniff & even eat ketchup, I’m not going near dog poo.

Bit like Alyssa, never been stung so dunno if I’m allergic. My grandfather was highly allergic to bees.

Neither a bee or spider will hurt you if you do nothing but while both would make me squeal I’d prefer the bee.

Spider will look for somewhere dark & warm & can only run. It’ll likely crawl into my shirt. If a bee lands on me its taking… Read more

My room is a sauna. Rest of the house do whatever temp ya want just don’t expect me there.

I’d rather be warm & alone than cold & social.

Absolutely. Like I’m good for a chat, argue a point whatever but I’m at a distinct disadvantage having just woken up & you’re discussing something that happened while I slept. I realised these people aren’t interested in conversation, just like having their opinion heard.

1 dude was awesome at his job but couldn’t stop with US politics.… Read more

People asking my mum what I thought or how I felt when I was sitting right there drove her up the wall.

I got a pretty sharp tongue & quick with a joke so I’d back myself to make the baby talker look like the dickhead they were.

Probably nothing angers me more than being ignored. Or seeing people ignored.

I hate conflict but I’d rather the opportunity to engage & fight than be ignored altogether.

I’m the same. I’ve gotten rid of 2 support workers in the last 8mths because they couldn’t shut the *cough* up.

Just put me in the sling, hose me down in the shower & pump me full of coffee. Then we can say “good morning”.

I don’t think that is unreasonable; most people get up & shower before interacting with others.

I remember when I was 11 or 12 I sorta reasoned with myself that OK I’ll be physically weak but I’ll always be mentally strong.

I fell way short of that and fell into deep depression for years after some big things didn’t go well. I just didn’t care. Now I’m not as depressed and do care a bit so anxiety & regret has taken over.

Personally… Read more

Great post, Losmi.

I get it mate. Absolutely. I’ve always been my harshest critic but have eased up a bit. Every time I can’t do something but drives me mad and I usually wind up frustrated swearing at myself. If my body kept up with my personality it’d be great. It doesn’t. Overall I’d hate myself more than I loved me.

haha it’d be great! Ask someone to pass something then move it just as they go to grab it. They’re like “you see that?” you’re like “see what? you’re crazy!”

I’d be at the casino playing dice games for sure.

I like messing with people so I’d absolutely go for moving things with my mind.

Also who needs physical abilities when you can shift things with thought? I’ll levitate my chair up stairs or mentally command that rib to hover in front of my mouth while I gobble away at it hands-free.

A few years back I went on a health kick. Nearly choked to death 3 days in on a bloody multi-vitamin!

The few moments I couldn’t breathe the only thought I had was how ironic it’d be dying taking healthy pills.

I grabbed a beer & a cigarette & got back in my lane lol.

Deepheat? Dencorub? Not sure what the US equivalent is.

Ya rub it into sore spots & it’s got a cold hot soothing. Keep away from eyes & genitals. You know the sorta stuff.

But TB has some Asian (I’m feeling its Malaysian but can’t remember) magic in it. Just the smell is calming.

Absolutely that makes sense, mate. Been there myself more than once on various things medically & recreationally. Especially if you dunno what you’re in for the panic is a natural reaction and oh boy its full on.

I’d say have a dabble if you’re curious & think it could help. A mild blend indica dominant and small dose worst that’ll happen is… Read more

How did I forget Tiger Balm? Awesome stuff!

Hot wheat packs. I’m guessing same or similar to your heat pads. On real crook days I’ll have 2 nuclear hot under my back, 1 down my sternum & 1 at the back of my neck/base of my skull. That’s real bad days but where ya can’t even entertain getting outta bed.

Other days when its bad but manageable its again hot wheat packs. Taking pills makes… Read more

Wrap the towel over the new thing?

Never had skin probs till recently. Mum said the other day “your toes look like 50,000yr old crocodile skin at a museum”. I looked down & she wasn’t wrong lol I just don’t care anymore. Used to be a gelled hair, cologne drenched, dressed up pretty boy with a fat head but now I’m good in trackies… Read more

Wheelchair reps are generally good people happy to provide a good service but really bloody difficult to nail down.

Like that friend who says they’re 5mins away but ya know they’re not even outta bed yet lol.

Keep on ’em DeAnn. Squeaky wheel gets the oil.

Wow! Yes!

I had my best mate stay for a week & he remembers so much that I don’t. But he doesn’t really remember my rough times.

Not really. They’re a reminder. They represent an identity I don’t have anymore.

Same with jewellery. I love it & spent heaps on it but it doesn’t “fit” me any more.

Becoming a lot less about material things.

Organisation has never been an area I’m good at. But I know where everything is unless someone moved it.

“That thing 3 things to the left of the roundish thing … nup .. nup.. your other left and down a bit. Aye! That’s it!”

I’ve always had a good observation. My grandmother was a snoop and I’d always know if anyone had been in my… Read more

You’re not wrong, mate. Great community here.

Minestrone please lol

Cheers DeAnn. Absolutely! My god I miss being able to clench a proper fist let alone the strength to throw it at a wall.

It’s beyond ridiculous. Like do we lose a key ingredient to being worth help after our 18th bday?

Spinraza is still the same.

That does make me feel better a bit & yeah I’m resigned to be a thorn in their sides for… Read more

Thanks Alyssa. TBH here’s the only place I vent that stuff & feel anyone has any idea what I’m saying. This news dropped 2 days into having my best mate travel 2000kms to come spend a boys week full of beer & fun & it pissed me off extra for putting a downer on me. Can sorta tell him but at the same time I hate to put my shit on anyone else -… Read more

Australia has recommended Risidiplam for patients with SMA 1, 2 & 3 … if they’re under 18.

That means it’ll be massively subsidised and therefore affordable.

They did the same with Spinraza.

I’m happy as a pig in shit for the young ones but I’m 35 & a rotten mix of absolutely fucking furious, disappointed & worth less (not “worthless”… Read more

Full disclosure; I’ve had a few beers & girl scouts cookies (if ya know ya know) & right this moment listening to

After my back surgery & how much I lost from that at 10 I decided I was done with doctors. I’m 35 & haven’t seen a doc off my own bat for anything more than a prescription for a… Read more

Never really bothered unless I was gonna be out in decent rain for a long period like a football game/outdoor event. Only time I had a problem was nearly 20yrs ago in high school some water got in because the rubber skirting around the joystick was ripped up. Otherwise never had a chair complain about the rain.

But I don’t do shitty… Read more

I’ve got a back scratcher that’s extendable almost 2ft. Originally purchased for it’s obvious use but I’ve found the claw scratchy bit hooks things well so I can slide a tray, plate, remote etc closer. The handle is a slightly textured rubber so I can flip it & use it to press light switches since its grippy & doesn’t just slip off the… Read more