Technology’s amazing, but there’s no substitute for sheer hard work!

 

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As usual I am waking up with an itching desire and need to offload my mind!

Forgive me for diving into a random subject!! But it’s one that’s been bugging me for a long time. I have to talk about it, as I got a phone call from the US, from a young guy building interphase technology!  He’s putting together these headsets that read your brain patterns and can actually read what you are thinking – bloody amazing!!!

Why I want to discuss this is to document my thoughts, as he wanted to know my thoughts on it being used for LIS, you see. I was very honest and just spoke straight from my heart as I always do. “I said look, what you young guys are doing is totally amazing and you’re changing the world!! but…..!!!!!!

And it’s a big but!! We’re forgetting that we can’t count on this technology to fix us; all it’s doing in some cases is taking away the need to try moving and speaking for ourselves, which in turn fixes us! Here’s what I think today’s problem is, and I’m sorry this will be a long blog, but those people I know who read these blogs will be interested in my thoughts.

It’s very simple to me! A baby cries for a reason for years of its life, developing speech by exercising the voice box, the lungs and muscles in the diaphragm – this we know, yeah? It’s not rocket science!! So why are we looking to bypass the habits of a baby to regain speaking with interphase or iPad apps? We know by constantly trying to pronounce a letter or word it improves over many years. What I’m afraid of is, those who could otherwise regain the power of speech are not going to be trying anymore! They’re simply given a clever system and put back in the community!

If I was given this at the point when I couldn’t speak, I tell ya now there’s no way I would be speaking now, no way!!!! The brain will take the easy way every time!  You give your 1-year-old an iPad with a speech app and do you think it would keep developing? No way!

The other thing I want to touch on is, I met a couple of guys here in Australia – Shri Rai and Fairuz Shirataddin from the School of Engineering and Information Technology, Murdock University – who are working on some awesome computer game therapy, so I just had to see it in action….

I watched my mate and fellow stroke survivor Craig try to play this game; he was hooked up and, like Batman had to fly though these rings. He tried to move his affected arm to lift his (virtual) wing! It was really making him try (this part I loved about the game) but I could see him having so much trouble lifting – he was lifting his shoulder incorrectly.

I explained to the team how I got the use of my arms back – through pulley systems and counter-balanced weights. This gave them an idea to improve the game.

My theory is: You take away, say, nearly all the 4-5kgs weight of an arm and instead start the game with the arm trying to lift the weight of a box of matches. Then simply add more weight as time goes on. This allows for correct rotation, training the arm to move correctly without damage to the shoulder joint.

Hope they listen. I strengthened my arms by using homemade pulley systems (without games) in my back garden for years – and it worked!! I had to be strapped in at first, as my hand couldn’t hold on, so had Velcro straps to strengthen my grip.

Me and the guys exchanged emails and I hope to get this game adapted further to help strokies like me. I’m excited about the advances I see around me in the stroke world; a lot of positive gains are being made with physiotherapy. We’re on the edge of great times!

I wanted to document this blog, as I know Curtin Uni read my blogs and so do LIS sufferers!

Ok I can sleep now. Thank you for reading!

Night 😴

They thought I’d need care for life. Instead I’M the carer!

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3.30am and still awake, remembering the excitement of yesterday!!!!

Yesterday was a special day indeed for me, a day when dreams and thousands of little goals finally became reality!!!
I applied for a job in care in the community last week (not expecting to get it of course)
After my story confidence in the work force in a new career isn’t my strong point.

Would rather not mention where, but blow me down I got it!!! Well… part time hours to begin with, but anyway it’s the little break I needed.

The day started with smashing an assignment at my college, and then I got the unexpected phone call! The news was the best I’d had in months and welcomed by the whole community care group – me, from a “blink with no hope” to a job helping disabilities in the community!!!

Me !!! Wowhooooo!!!!!

39 and starting again wasn’t really my life’s plan of course – ha ha – but I’m so happy right now (if I was rich in money  couldn’t be happier.)
I have always considered myself an underdog of life- a struggling failure at school,  cancer, then stroke – but just lately I feel I can do anything!

I am not an underdog; I am a English-cum-Aussie pit bull of life. And I’m winning it back!
They thought I would need a high level of care for the rest of my life but, through my defiance I am gonna GIVE care for the rest of my life!! And I’m just getting started!

Never listen to what you’re told you can’t do: Can’t is as it says “Can with a ” T” for Told ya so!!!!!!”

Fat finger syndrome, but still strumming!

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Few believed I could hack the army.

I wasn’t sure I could beat cancer.

They said I may never recover from the stroke that left me paralysed, and even if I did, I’d need high care all my life.

Some laughed at me when I said I was going to write a book, with my poor writing and spelling skills.

I was told my fingers were too fat to play guitar.

This blog is to say in the politest way…..

BIG HAIRY BALLS!!!!!!

IF YOU WANT IT, AND YOU’RE PERSISTENT. GO AND PROVE ‘EM WRONG!!!

I’m still crap, but I’m still trying. So, never NEVER give up and, if you have a dream, keep kicking till you get results!

 

Not great, but listen here!

Taking the plunge! Back to school and learning new strokes.

 

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No matter how old I get, I still get anxious when it comes to classrooms. From pre-school to college, it never sits well; I would prefer to do anything else but paperwork!! Always been the same!!!

Tomorrow is my second semester at college. It was meant to be just 6 months, but I was struggling with the whole speed of things.

Focusing for 6 hours in class then homework n assignments, plus the odd presentation on body parts – I couldn’t keep up! I felt stupid!!! But I have to remember nobody else has been through what I have and come back from a coma, so I might be going back with new people. But I’m still trying to give it a crack.

After working at Aegis Retirement Home I’ve learned that an Occupational Therapy Assistant may not quite be the path for me, so I’m gonna try Disability next and gain volunteer experience there!

Either way, I need my Certificate 3 to move forward, and I must complete this bloody course!!!

God willing (& Pete willing) I WILL!

 

Batting back into the swing!

Peter tennis ball

I feel the need to document my rehab in the hope somebody somewhere might benefit. Although I’m pretty sure regular everyday people are sick of my ‘Eye’ on Facebook and how I write about stuff, I really wanted to share my new goal with you.

I’ve taken on a lot this last year: Guitar playing, study, trampolining – all quite impossible it seemed until I actually tried. No doubt about it, I’ve overcome massive MASSIVE challenges since waking from coma after the brainstem stroke which left me locked-in – from learning to breathe air again, swallowing, getting my eyes moving from left to right, bowel and prostate problems, eating food without choking to death, talking again, movement, walking, emotional control and so on and on and on…If you’ve read my book you’ll know all that!

But this is about my present stage and my latest goal that I really REALLY think is gonna be amazing for my rehab:

SWING BALL TENNIS!!!

Since my recovery began, I’ve tried many things to rehabilitate myself; most of which I’ve found (at least for me) were best on my own after hospital, as I don’t take to well to disciplined regimes – I need to take control Haha! Can’t help it.

This swing ball tennis is s-o-o-o hard after stroke; frustrating is too kind a word.

Gym, trampolining and walking can only do so much. For my arms I need reaction, speed and coordination back! So I’ve set myself up for some frustrating months ahead, it seems, the ball is so hard to hit. It Hits my knuckles more that the bat! But for improving my stance and strengthening my legs, hand, arm and eye-coordination, nothing comes close, I tell ya!

Best 12 dollars I’ve spent this year, I think!

Had to share this, as I know holding the bat on my bad side and gripping hard is still a challenge yet it will help for sure. So, if you’re at that stage of your rehab, feel ready for a challenge and can put up with the bruises, this is by far the swing ball to the next level! But please approach with caution until you get into the swing!!!

It’s hard, but I feel ready! And though I’m no Andy Murray (yet!) I’m convinced that trying will “set me free”!

Keep batting, strokies!

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Signing off at Goodlife Kingsway Gym. Thanks Buddies! You’re the best!!

Pete & staff at Goodlife gym

I hate to be a big girl about this!!! But this week I left Goodlife Kingsway Gym!!…..”My  church !!…..my salvation!! “…..my way out from this locked-in war!!”

I don’t wanna disrespect the church by saying that, but it was. I prayed more in there than anywhere and held back a lot of tears through my fight with my limbs and my divorce – not to mention poverty!!! That’s always fun of course!

Over the last 4.5 years I put a shit load of hours into that place, I tell ya – pain, sweat n tears, with bucket loads of focus.  Two years of pool till I could get upstairs to the gym. Even then it was the cross trainer for 6 months…. I used to look at everyone on all these machines n dream of using ‘em someday, And I did!!! All except the big bloke corner!!!

4.5 years of the same staff really connected me to ‘em, for sure! They’re probably thinking, “Thank God for that – Pete’s left! Yay!!!!

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I’ve just moved house with help from my Dad and his wife Noi (thank you x). “A change is as good as a break,” they say. Well, I needed it!!!  I’ve seen every crack on the streets, and entered the gym that many time I swear the door hinges are loose!!

New area, new start, new gym. A whole fresh outlook….it’s a bit overdue I think!

I’ll miss ‘em all and, even though this half decade was hell, the people I’ve met through it are now embedded in my heart! The right staff makes a good gym and I sure had the best!!!  (in my totally unbiased opinion, of course – Hahaha!)

On my last day, I found out who donated my 10 free lessons too! Never guessed it either –  it was a guy I’d d known in the gym called Anthony Carcione (sneaky sod!!) Thank you so much mate! I didn’t know what to say!!  People in this world are amazing but you only find out who they are when you fall!!! I owe ya a big steak, buddy!

Thanks for the pain, Cheri – my personal trainer towards the end, but I’m grateful to all the staff sorry I can’t name you all; there are too many of you, but you know I will do anything for you all – Just ask me!

Privileged to know each and every one of you, truly!! So, to all at Goodlife Kingsway, Pete is signing off & signing out with a cheesecake of love coming right at ya! xxx

Pete - cake for goodlife gym

Thanks a million!

Pete

95-year olds put a spring in my step!

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Look at the picture above then read on…

Never thought I’d ever be writing this! I’ve walked 1000s of kilometres, been trampolining, had years of pool rehab,  gym, weights, blar blar,  you know how dedicated I’ve been…..

Well! After all that, who’d have thought a day at an Aged Retreat would leave me so exhausted?!!! The little old ladies had me up dancing! Today we did a quiz and I had a morning natter to a few of the residents…Funny, some of them! Hahaha (real funny!) And it’s all part of my work experience!

Yes, I really like my new volunteer job on Thursdays; It’s certainly different to my Friday sessions at the hospital.

As some of you may know, I’m going back to finish the last part of my course in July, so I wanted to gain as much experience as I could in my new chosen field as an OTA (occupational therapy assistant). Over the years I’ve come across many new conditions, such as:

Stroke and Locked-in syndrome (obviously); Guillain  Barre syndrome (where nerves are attacked by the body’s own immune defence system);
Multiple Sclerosis; Aphasia  (communication/speech problems); and Head Injury. I’ve also encountered Melanoma,
amputees, Diabetes…let’s leave it at that, ey. My point is, one thing I’d never been involved with was Dementia and I wanted to learn more about it!!

Well, I believe in fate and, while I was on my Tafe course, I met a lovely fellow Manc (Manchester) lass called Alicia Walker. We hit it off straightaway and became friends, even catching up over a juicy steak. That sealed a long-term friendship, I’ll tell ya! Nom nom nom! Just so happens she worked in care for the aged and pumped me into the pipeline at her place.

I’ve only had 2 days at this retreat but I’m under OTA’s wings and trying to get hands on and be helpful. Well, like I said, the ladies had me dancing, something I haven’t tried to do for years – and, Yes, I still suck! Haha! But I really got a lot out of it. The enjoyment the residents were having stimulated me too; it was wonderful seeing them smiling and coming to life!

I love the way OTAs can find ways to get people moving. As I’m all too aware, movement is everything when it comes to stimulating the brain and mood. OTAs also give back a sense of purpose – an aspect I’m particularly interest in and hope to put to good use in the future.

Meanwhile, I’m not sure whether this will be my direction, but I had a good few days at the care home, even improving my general knowledge during the quiz! Did you know Asia is the biggest continent!? It’s in there now – go on ask me another!!!!  Our team came second in the quiz too, with very little help from me! They were pro!!!

Altogether, a great day! I never dreamed I could get up and dance with 95-year old ladies and bring smiles to their faces….not after my story. Think they all liked me, despite my two left feet; but, hey, let’s not be doing the tango before I can two-step! It’s only been a couple of days so, “Easy Pete, easy lad! Let’s not get too excited!”

Thanks Alicia – It’s been a pleasure so far. And thanks to all the team at Aegis Aged Care Group!

You’re the best!