stroke

All posts tagged stroke

Hot Off the Press – 19th May 2020

Published May 19, 2020 by helentastic67

Hot off the Press!

Sometimes, blogging about the here and now and the most important reason to blog gets lost in all the detail. So, being careful to consider someone else’s privacy.

Imagine being 29 and all you want to do is survive, to thrive, with a pre-diagnosed medical condition, you have a stroke!

Again, not my story, but a friend.

After over a month in hospital, being tested for everything including CoVid19 and with no answers. Sometimes, this is the way. No answers.

Being kept company by parents, day and night so nurses give the best care. The same care they would give to anybody without disabilities or pre-diagnosed medical conditions. No matter what they are. A short stint in in-patient rehab, where physio appointments went cancelled because of the low expectation of recovery. Parents needing to still be there to advocate for their child to make sure they get what they need.

What to do now?
Well, the hospital and the patient, to be fair want the patient discharged ASAP. The patient obviously very keen to be home where his parents can arrange the best for their child. Well, adult child and the parents could get a reasonable night’s sleep, to continue to love and care for their child as only parents can.

So, in a perfect world, a caring parent/advocate/carer applies to the NDIA for a change in circumstances, so the patient can go home. Extra carer hours can be utilised to provide adequate care in the home. Plus, some much needed respite for the parents. And sufficient physio and Occupational Therapy to return to at least the bare minimum or return to the same level of independence my friend had in the comfort of their wheelchair, not so very long ago. Is it too much to ask? Is it even possible? I guess we don’t know until my friend is in the best environment for this to happen. Which is clearly at home.

They can’t go home until these things can happen.

I don’t know about anybody else, but I don’t have the funds to pay for these kinds of things, so the NDIA, a government organisation should prioritise these things, no? Let’s see how long it takes for my friend to be able to go home.

And lastly, I’ll leave you with this great quote that I only know about because a great Aussie disability advocate used it.

Disability is seen this way………
“The soft prejudice of low expectation!”

Please share through your networks to show your support. While these stories go untold people get away with providing sub-standard care. Let no single person with a disability be left behind!

Cheers,
H

Sleep

Published July 1, 2019 by helentastic67

Sleep

I feel I’ve had a lifetime of sleep deficit, because I’m always trying to catch up. Sleep! Sleep! Sleep! Never enough, but it’s also somewhere (bed, anyway) where you think it’s the most comfortable place to be. Except if your only disability is depression. (Not discrediting the darkness is depression, however) Get up, move around.

So, for me going to bed to sleep is pure heaven, until, but wait.

For those older (I didn’t say old) I said older and more traditional stroke, it might require two people (cheers) to roll them over partway through the night. I can’t comment too much about that, as thankfully it hasn’t been my experience.

Early day’s I gave up my flannelette sheets, I think the first winter. HARSH. But necessary as I refused to give up my flannel PJ’s because when I rollover it’s like Velcro. The top sheet would get stuck to my PJ’s and covers would just go with me and a cool breeze would go down my back.

There was a lesson I learned pretty early on and I have only had to be reminded another two times. Try this, lie on your back and roll over to one side, as you do it, try to single out and remember all the parts of your body you utilize to roll over.

Now, what happens with your arms?

Allow me to tell you what happens with my left arm when I roll over, say to my right side, my left arm will fall behind my back, which is more than a little unpleasant. Because I can’t reach behind me to grab my left arm to pull it to the front. I literally have to roll back over onto my back, onto my arm even and I almost have to keep rolling to sit up over the edge of the bed to get my arm back in front of me.

Are you feeling my pain yet? No? Ok, let me next level it for you. In the early days of my disability, I fell over at the front of my house. My left foot got caught behind a post (a supporting post) of my front fence at the terrace house I was renting. I went down like a sack of (shit) potatoes and I smashed my head against the side of the wall and my left shoulder.

Behind me the screen door was closed, the front door open and down the hallway in the lounge was my mum. She heard the meowing I let out and came down, by the time she got to me, I had levered myself up onto the fence and noticed across the street, the creepy-but nice dude in the public housing flats on his balcony. He had seen me fall and I could tell he was concerned and was contemplating coming to help me. I gave him a wave to tell him I was OK. Mum appeared at the door “what have you done?” she demanded.

Have I mentioned my mum is NOT my Italian parent, yet this is how she responded, I know she cares and the noise I let out was just awful, pain and surprise, all rolled into one.

Now, in short, my left shoulder (to this day) mum is angry that it’s dislocated and no one wants to put it back in. Officially it’s not dislocated, but it kinda is. If I’d hit my right shoulder, it would be dislocated, but my left one has the muscle tone of an old worn elastic band. So, when I hit the wall it all just move and stretched.

Again, it’s not in its kind ‘out’ but can’t be put back ‘in’ because there is no muscle tone to hold it back in place. I’ve seen a private shoulder specialist who said he could ‘fix it’ (I imagine Frankenstein and bolts) but, he said I would have ‘other’ issues across my back.

So, when I ‘forget’ my arm, when I roll over and end up lying on it even briefly, it twists just a little in my shoulder, making it a little extra ‘special’.

Every single time I go to roll over to my right side, I grab my left arm at the wrist and bring that arm with me taking it in comfortably in front on me for safe-keeping.

Generally, every morning I’ll get a little bit of sleep on my left side and it’s very comfortable, well from the belly button down, my left arm I have to straight-jacket down my other arm so it doesn’t creep up every time I yawn.

Oh yeah that, when I yawn, it’s an involuntary thing, all the muscles in my face (cheek) neck, shoulder all tighten up and my left arm comes up,  my hand flares open and it is kinda weird, but I digress, when I even briefly sleep on my left shoulder when I get up and sit on the edge of the bad, I have my left shoulder click back into place.

So sleep Blessed sleep Yeah.

And don’t forget the T.O.S. (Thorasic Outlet Syndrome)

I generally wake up several times each night with a numb right hand or pins and needles, which is part of Carpel Tunnel Syndrome and it takes a bit of upright and moving around to have these symptoms to disappear. But it’s just another thing to add to the list.

Please like and share

 

I’m More Than Just a Stroke

Published March 29, 2019 by helentastic67

More than just my stroke

I’m More Than Just a Stroke

There is so much judgement to having a stroke. Normally I get it by just a look sent my way from someone in passing. I usually notice it and go for the wry smile anyway. I prefer to kill with kindness.

The look

Sometimes others witness this judgement and they take care of it too. To be clear my mum personalises every single slight that happens to me. So, she reacts like it’s all happening to her. She can’t help herself.

Mum

But the carer while arranging her social engagements for the Sunday afternoon, she told her friend she had me in the morning. She described me as and in the context of “Helen’s forty-five and had a stroke.” Something about the tone she used, I responded with a “Yes?” with the end of the word lifted. Raised my eyebrows some. She sniggered a little and seemed reluctant to share.

Sniggering 1

Her friend’s judgement was swift “forty-five and had a stroke? That’s young for a stroke.”

I reminded her I’d been in my late thirties, but she informed me that he had put him (her friend) in his place, that I hadn’t been a drinker or a smoker.

Drinker and Smoker 1

Big love her way. Bless her cotton socks.

But I reassured her, I’m used to that level of judgement from complete strangers. I told her it was fine, I wasn’t even offended. I had a fairly thick skin in some ways these days and I will growl a questioning grumpy “What?” at someone who gives me a look of disrespect or I will give them a “FUCK YOU” if needed.

Fuck you

So, there are times, it’s just not worth it to need to advocate every single time someone disrespects me or I wouldn’t leave the house or answer the phone or deal with family. I would just stay home and wait to die.

Waiting to die

I do of course reward and thank people who take the time to simply step out of my way, so I can pass and I don’t make a big thing of it, so I incline my head slightly and give them a quiet thank you in their direction.

Thank you

 

Adapt

Published March 11, 2019 by helentastic67

Adapt

Adapt

Now, for some light and shade. If you just turned ‘twenty-three’ it was pretty dark times. Although this story stems from a purchase from back then.

Improvise

When I finally got a queen-sized bed (my dad made me a sleigh bed) but more about that later. I bought some affordable pine furniture to fill my bedroom, two bedside tables, a tall boy with a large blanket drawer down the bottom and an upright bookcase with nice moulding on the top.

Pine furniture

Now, I said it was affordable, I meant cheap. However, I added some raw amber water-based paint, some patina (antiquing medium) and some polyurethane in a satin finish and more than a single effort with the sandpaper and what can I say? Carpenters daughter, right here.

Painting

Anyway, that’s the background, the tall boy in my current home lives in the ‘return’. File under ‘apartment living’, all new builds must have a window to every bedroom. That means my bedroom has a hallway like space to the window, where I have put my DVD, bookcases and the tall boy (and anything else that didn’t fit anywhere).

Bookcase

So, being one handed and because I don’t stand in front of the tall boy to get the draws open and closed (I did say cheap right? The draws aren’t on runners) making opening one-handed painful and the trials and dilemmas on being one handed and having limited space. I reached down and was hitting the drawer on both ends to get the thing closed.

Open draw

That’s all background you need so next is the punchline so I hope you stayed with me.

So, recently late one night, putting my clothes away, thinking I might even make it to be by 1am. (Yeah, it’s a realistic goal, even if it’s not one that makes my shrink happy) I obviously hit the tall boy draw one too many times, rather vigorously and the candle stick on top fell off and connected with the top of my head. Yes, it really hurt and yes, I used my favourite word. AND rather than slow it down, it seemed to gather speed as it hurtled towards my foot.

Kicking furniture

Which foot? I hear you ask. For those who don’t know or don’t remember, my left foot has been affected by my ‘stroke, not stroke’ as I like to call it.

Stroke no stroke

So, of course it landed on my right foot, because I can fucking feel that one. Sweet Jesus, it hurt so much. Lots of swearing as I hobbled to bed and even days later, here is a photo of my bruised toes.

Bruised toes 1Bruised toes 3

 

 

 

 

 

 

 

 

 

 

Solution? Need to update the tall boy to open with drawers on coasters for easy sliding and good OH&S. Adapt! Adapt! Adapt!

Adapt and learn

When Disability Becomes Embarrassing – Part 3

Published September 24, 2018 by helentastic67

When Disability become Embarrassing 3

When Disability Becomes Embarrassing – Part 3

Stacey

The following day, I went looking for a particular speaker and topic at the conference, that others in my group were looking for.

It was something about “sex after ABI” for example. I find the right room and joined some fellow guys I already knew. This won’t be awkward right? Since he had given me his business card, the night before.

Sex after ABI

The guys I knew and I looked around thinking we were in the wrong place because it seemed everybody else in there were “industry-types” service providers, whatever.

Industry Types

Then in came the presenter.

That’s right, Stacey!

She started by recognising there were more industry-types there than she expected. I suspect she had wanted to empower people with ABI’s that sex could still be a natural part of life post ABI.

Sex is natural

Here’s an example:

Stacey2 (not related to Stacey) had, had a stroke. She had her stroke while having sex (a little rumpy, humpy) with her husband.

Stroke during sex

There was a moment of sadness in the room when we heard this. Apparently, the married couple had a very healthy sex life before the stroke.

Healthy Sex Life

So, when in hospital, when she was able to get up and move around, they attempted to have sex in the hospital.

Sex in the hospital

Must put this one on the bucket list.

Bucket List

We were made to understand it was perfectly normal and for them vitally important to be able to continue and maintain a normal sex life for them as part of her rehab and existence.

Sex in Rehab

You might ask how they did this?

Stacey informed us they did it standing in the bathroom with her holding onto the handrails. And success apparently.

Sex in the Bathroom

Now, Stacey 1, asked us a question. She asked us, what happens when we reach climax? (or orgasm). The room was dead silent.

What happens when you orgasm

I piped up,

“What? Your muscles tighten?”

Stacey was impressed and said I was correct. The industry-type people checked me out wondering how I knew.

How do you know

Exactly!

So, I struggled a little and said,

“It’s been a while, but……”

It's been a while

The following day, at the end I walked Stacey out because I had enjoyed spending time with someone ‘normal’ as you do surrounded by numpties all the time. She thanked me for being her “Conference Friend” Sad face…

Sad face

Stay tuned for the lesson I gave Fred.

Hand

Published June 23, 2017 by helentastic67

 

HandHand

Sensory deprivation is a weird thing. But I can best describe it as this; When I was about 23 years old having a tickle fest with a boyfriend, I was much less ticklish on my left and that was before my “stroke, not stroke.”

stroke

There have been times I’ve been leaning forward digging around my front loader washing machine and I go to slam the door shut and I have an intense pain in my left hand. Crap! My left arm has dangled forward and my hand has found its way inside the door, minor problem, but other times like yesterday, I took an oven tray from the oven, put it on the stove top and moved slightly to the right to work on the small amount of bench space to the right of the stove.

Took me a moment or three to feel an annoyance to my left hand. It was an annoyance until it hurt and I stopped what I was doing to investigate. My left hand was leaning against the tray I removed it and continued with the task at hand. (no pun intended).

Hours later, I was sitting on the couch (seriously, 7 hours later) and I was scratching at an annoyance on my left hand, then I stated rubbing it.

Left Hand burn

Finally, I looked at my hand, yes, I had burnt it and I’d broken the skin.

Cream, bandaid and off to bed.

 

Don't itch

 

So, this is often how sensory or sensation awareness plays out particularly when you’ve lost some…

sensory awareness

 

Botox

Published September 23, 2016 by helentastic67

botoks_allergan_ilac

Botox

I’ve had Botox! Four times for free! Ask me how!

Okay, this is how I like to break the news to people because the only thing people have heard of Botox being used for, is to pump in the lines on their faces to get rid of the wrinkles.

But people get it for other things.

They might get it injected into their scalp, armpits or even a woman’s bladder. http://www.webmd.com/urinary-incontinence-oab/news/20150515/botox-overactive-bladder

sweat-glands

The bladder, I’ve not heard much about, but the first two I hear it helps with perspiration problems.

Keep in mind, in no way, shape or form am I doing a sales pitch for Botox (botulinum Toxin)

https://en.wikipedia.org/wiki/Botulinum_toxin

Hear me when I say this; it is the MOST TOXIC THING YOU CAN PUT IN YOUR BODY.

But anyway, I haven’t been lucky enough to want/need it for vanities sake!

I’ve had it out of necessities sake.

Twice in my arm and twice in my calf for what’s called Spasticity!

bent-wrist

People who suffer ‘stroke’ or ‘stroke like symptoms’ like myself will have an arm that won’t relax and straighten. In extreme cases, some people will have a hand that will not open.

Imagine what happens if you can’t wash or dry your hand. It can lead to other problems, like a stroke is not enough. Broken skin conditions don’t help.

They are very careful with where and how to inject exactly the right muscle for the best effect…

In the correct muscle in the arm, it relaxes other muscles lower down in the arm and ideally the hand. It’s ideal to have a good STRETCH OF THE hand to be able to work on the hand.

It’s every important to do a lot of OT at this time to maximise the benefits of the Botox.

Because after 3-4 months the Botox wears off and hopefully when the muscles that were ‘relaxed’ by the Botox wake-up there is a better balance between those muscles and the ones exercise have been working on.

You generally don’t have Botox all the time because you can build up an immunity to it.

I always like to use the example that one day all those faces in Hollywood will simultaneously drop. Sad face?

I might do a You tube demo to show what Botox in the calf is for…………………………….

injection-sites

injection-calf-muscle

 

Auditory

Published August 8, 2016 by helentastic67

Auditory 1

Auditory!

Have been having many auditory issues of late. While my stroke/not-stroke has affected the left side of my body from my toes to my face, my brain still functions very sharply. I manage my own appointments and day to day stuff, I pay my own rent and bills and I negotiate much of my own services and whatever! My home is clean and tidy (mostly) and I may be one handed, but I’m always moving around the unit with something in my hand keeping everything in its place.

I am considered a high-functioning ABI! It’s because I’ve had no trauma, which is rare! I’m not saying I’m special, but I am “she says tongue in cheek!” High functioning for me is because I’ve managed to avoid trauma to my brain. No surgery (cutting) and my memory has remained intact. I consider I have a very good memory, long and short term. My mum would disagree, but she would be wrong.

But lately my sensory issues have made me a little fuzzy and it’s starting to bug me.

auditory-training

I can go out and do my own shopping, pay my own bills, do that ‘stuff’ and even reschedule appointments ‘on the fly’ if I’ve got a busy schedule or am early for an appointment and have a little wriggle room but it can all go to shit when someone’s around re talking in my left ear or distracts me somehow.

My concentration becomes harder to keep on track, my self-processes and coping skills can all go to hell in a second.

And no matter how much I plan ahead to have things go smoothly at the end of the day from that moment on, I’m going to get a migraine.

 

Radiation

Published July 25, 2016 by helentastic67

Face mask 1

Radiation!

For me I’ve been aware of everything that
has ever happen or
been done to me. I’ve been part of the decision making and
conscious throughout
treatment etc. Some people don’t have that
luxury.

They might be in a car accident or have a
stroke and they
only become aware of this when they wake up in
hospital. Or even after they wake from a coma. That would be very ‘Ordinary’.

My treatment was only about 30 minutes every
day over the
course of about 2 ½ weeks.

Mum and I caught a bus across town to my
hospital and within
an hour mum and I were on the same bus heading
home.

Day one! Turned up to wait for my
appointment.

Think it was about 8am! And it wasn’t long
before a nice
nurse was standing in front of me with a medicine cup held up
with a little white pill in it.

I’ve never been one to just reach for
medications and
considered I wasn’t sick, I was here for
treatment. So, I questioned the need for this medication.

I looked toward my Specialist who was the
Radiologist/Oncologist
who just happened to be coming out of the consultation room
with other Neurosurgeons,
etc and I gave him an appropriate questioning look.

And that was the first dose of the steroid
‘Dexmethazone’ I’ve
ever had.

The treatment was delivered with me lying on
a table and my
head bolted to it with a mask.

This is someone else’s mask (mine was
destroyed) and after the
treatment the mask would leave an itchy honeycombed pattern
across my forehead. (Sexy)
that would take some time to go away. Making me very
self-conscious.

The first night I recall I didn’t sleep. I
may have managed to
get to sleep for an hour or 2 before the alarm went off and
I had to get up and
repeat the process…

Face mask 1a

Day two! Of my treatment the little pill was
presented to me
again. And I asked if I really needed
it?

I explained I hadn’t slept all night. It
was a precaution for if I suffered any brain
swelling. As I had not had a headache after my first treatment I managed to evade more steroids during my treatment faze.

That night, no steroids, slept like a baby.
Overall the
treatments were no drama what so ever. I was very
tired.

Didn’t notice anything unusual until a few
days after my
treatment ended.

At the time I had a boyfriend and some
weekends we has his
daughter stay with us. She was about 4 years
old!

My scalp had been itchy and as it was a Sunday
morning I took
my hair down to wash it and found some mattered bits at the
back of my neck. I
brushed my hair in the shower when I had conditioner in it.
This has been my
practice since I was about 16.

Cure

Published July 22, 2016 by helentastic67

Face mask 5

Cure!

So, let’s get to the ‘thing’!

And I’ll premise it by saying, sometimes its good time has passed because I cannot get caught up in the details. Maybe.

And I can streamline the “thing!”

After a period of seeing a few different Neurosurgeons and a period of time thinking I would have to find money to go to Europe to seek treatment because my AVM was deemed surgically inoperable. I was referred to a hospital across town and it seemed the only treatment I could have to ‘fix’ the problem had come to Melbourne and was covered by the Public Medical System! Yeah!

My AVM, still inoperable could be treated with radiation. Asked what to expect?

In simple terms, I was told I might lose some muscle tone, which I was amused by because it told me they assumed I had muscle tone. I thought I had better get to the gym and get some…

They told me my hair would “thin”.

To be clear my definition of thinning and theirs are completely different.

And they asked if I liked reading? Because I might lose some eyesight.

On the upside, I would potentially obliterate the risk of 2% a year I might suffer a stroke, bleed or worse. I’m not a gambler however if it would ‘fix’ the AVM and I would be able to  illuminate the risk of a bleed, stroke, possible death, then my mum and sister were on-board to have the radiation.

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