“The stroke survivor support group, UW Stroke Club. We have about 10-20 attendees each month and the group is open to anyone and everyone.
During this month's meeting today, the survivors wanted to see if there are any other stroke survivors with one-handed skills to share their journey and experience embracing life with limb function issues.... we were wondering if you are available to join us for ~30 mins to share your journey after your stroke. ''

Intro:

The AVM-stroke (Arteriovenous Malformation) happened to me in 1995 – an abnormal tangle of vein and arteries deep in my brain, which ruptured causing a massive Brain-haemorrhage, 9-hour Open-Brain surgery by Neurosurgeons who saved my life, and life-long major deficits. It was congenital, i.e. since birth, a time-bomb waiting to explode at any time.

The AVM ruptured in 1995 when I was 34 years old, and the results were I couldn't: talk, walk/stand, read, write, or remember; I was wheelchair-bound, paralysed on my right, had severe aphasia, sublux shoulder, and footdrop… and had to relearn English.. the list goes on.

Queries and Answers during the Zoom session:

Q: how do I fly around the world after stroke?

Firstly I was in a wheelchair when I first flew, a 2 – 2.5 hr trip – a lot of fussing around to get my wheelchair onto the plane, and out, as the plane was parked on the tarmac. I saw a few examples of vehicle scissor-lifts being utilised to carry more infirmed passengers from the plane, years later on.

Nowadays especially, there are 'special Assistance' lanes at major airports for the travelling public but it does depend on countries and which part of the world you are travelling to – to assist passengers who might need some aid. Generally assistance would be given, if airport staff are aware of the challenges some passengers have.

I'm slow in walking - uneven gaited-walk, to the departure gate, then down the ramp to the plane - I ask for priority boarding from ground staff at check-in as well as at the gate. They allow me to board with other not-so-able or wheelchair-assisted passengers, and families with young children, before normal-gait passengers. Alternatively ask for wheelchair assistance at check-in.

Q: Airplane. On the plane, the aisle seat is preferable, and hope that the other passengers in my row of three or four (a longish, 8 – 10 hour journey) don't need to use the bathroom too often. Or book seating near the toilets, if you can. Previously, quite some time ago, when you wash hand(s) on the flight – on some planes, the tap-mechanism required pressing of 2 levers for tap-water to issue – perhaps, not ideal if a passenger has only one usable hand.

Coming off flights, I have had swollen, impaired foot, even in the legbrace on many occasions, especially long-haul like Auckland-UK-Spain, my right impaired foot has slow blood circulation. Flight-socks, flight-pantyhose, have helped over the years – at times they work well, others not so much. I do flight-exercises in my seat: stretches, leg-raise, etc. and hope that they help – drink plenty of water after the flight. On long flights with minimal time to get to connecting flights & bigger airports to traverse, we ask for wheelchair assistance –'running' to catch flights before departure gates close, is not quite possible at this stage.

Q: Pottery - prior experience or not? I was learning to throw on a potters-wheel, before my stroke, and went to evening-classes with friends, in London. After the stroke, subsequent one-handedness and many years after that, we returned to NZ. Friends encouraged me to try potting again – could I do it with one hand?

I found I could - fun to build items from scratch from raw clay, glazed them as well, amazing and challenging – I couldn't do too much at one go, my body ached quite quickly, with the right-side very tight, bending low to glaze/paint item with my left hand. Later, I had tutorship for 1 term to 'throw' on the potters wheel only using my left hand – doable, although very taxing.

'Wedge' –clay needs to be kneaded for air-bubbles to escape and it is smooth & pliable, to be thrown to be a pot. With only one-hand, wedging is challenging: left-shoulder sore, right-shoulder is sub-luxed very quickly. SubLux – shoulder-joint partially dislocates; manipulation back into place takes time and great effort. At times I can do it by myself, mostly Murray has to do manipulation of the tight, right shoulder to get it back into position.

I had balance issues standing the whole time, though very satisfying when the pot is completed. Now I hand-build clay items - with many rest-breaks in between, it could take months instead of days.... and finally, voila!

Q: Silk painting, draw straight: 'Gutta' is a resist - it's used to draw the outline of an image on silk like a border, to prevent bleeding from colour to colour. Except I couldn't draw a straight line after my AVM-stroke. Firstly, I had to re-learn to write & paint with my left hand, as I was right-handed person before my stroke – writing my 'signature' could be very tricky after stroke.

Q: Shaky hand: Even now, I'm very shaky drawing-with-gutta before applying dyes or paint colours, especially big silk paintings – concentrate really hard, and not allow my attention to wander, was a start. A few years ago I tried to draw and paint a PopArt facsimile. Silk-paints do their colour-magic, only 'gutta'-lines needed to be drawn with a steady hand versus PopArt: all should be drawn with precision with acrylic paints. I tired easily trying to keep it all together. Focus on drawing straight lines with curves, especially trying not to get acrylic paint on my impaired hand, as I don't know where it is (loss of sensation on my rightside, due to stroke) – is great practice.

Q: Other Art/Craft: relaxes the mind and lets creative juices flow, in the search for other craftwork for me - I decided to compete in: article >>> WOW 2018 – World of WearableART. It was a challenge to myself, and Murray got roped into the project (oops, sorry!). Garment - fabrication and amazing designs? - many different, little challenges needed to be thought-about, addressed, resolved & then 'made' throughout the whole design activity; only to be revised again...ad infinitum...

'Worbla' Thermoplastics, is a term that is well-known to the Cosplayers' community (costume play: dressup as a character from comic book, video, etc, fashion accessories and more), one can make an infinite number of gorgeous items. Helmets, headpieces, armour, jewellery, corsets, sculptures, masks – was fantastic to me to do. Having had no prior experience of dealing with Worbla, during wet weekends trialling materials and making them – is fascinating, no wonder Cosplayers find it really irresistible.

Q: I was asked how I keep fit - not able run/jog, walk-fast, and my sub-lux shoulder gets very tight quickly, lack of balance was an issue. Many years after the stroke, we moved from the UK to Spain, to Elche which is near Alicante. A far better environment of 320 days of sunshine, 10 mins drive from beaches ..less crowded lifestyle than central London - gave us the opportunity and space to improve my stroke-rehab.

After I was wheelchair-free - I had put on a lot extra weight - the Mediterranean way of life is what we'd adopted. No/less snacks, lots of fresh vegetables and fruit, olive oil; try to walk more. We were busy renovating our home, too busy to think about snacks or titbits daily. Mirror-finished polished-floors of shopping centres, walking on sand down to the beach-waterline, or rocky terrain - definitely a balance challenge.

When we moved from Spain to New Zealand, we were presented with new challenges. In Auckland, we've had various type of homes: townhouse with 4-half-levels of stairs, standard 2-storey home, even highrise apartment living.

My basis of fitness is what I knew from childhood, as conventional exercises I'm not able to do. Sit and stand; move legs sitting down or raise them up and down; at a desk jiggle your whole body – to keep circulation moving, I do it constantly. Having impaired short-term memory, I tend to forget a lot of things daily. When I do remember to jiggle and move about, I would do it twice/three or four times repetition. Put washing out, stretches in bed before one gets up – all contribute towards 'exercise'.

Q: Core exercise? Recently, at University of Auckland, see article: (UoA) my participation train-Physio-program-2022, to be a test-subject for training of new physiotherapy students, one of the physio-students made a surprise comment: ''..ah, 'core exercise' ..''.

Not being able to feel much or see what I'm doing on my right side – 'moving my body' was just something I tried to do... and hoped it was the correct movement. A challenge to know how to move, if you have great sensory impairments and/or loss – it is not automatic any more; also, balance is crucial, after stroke..

Strengthening muscles, back muscles, abdominal.. normal try-to-do actions to walk better after stroke. I googled exercises to do with core muscles, things like plank, Russian Twist, half-kneeling wood, Dead bug...= imaginative names..? - I couldn't do even one. Perhaps the student physio at UoA, recognised it for what it fundamentally is – Core exercises after stroke, had more information of use, ahhh...

Q: Intervention: AUT (Auckland University of Technology) some years ago during a research project that I was participating in, researchers used EEG (electroencephalogram) to record brain-activity. In conjunction with EMG – Electromyography, measure muscle response - I was asked to do certain exercises; later on researchers would then deliver the FES- Functional Electrical Stimulation to boost my own brain activity, part of this study – like a sci-fi movie, in real life? - very cool. Article: my participation in Research at AUT:EEG&EMG.

It is an exciting prospect, I'm glad to be able to play a little part in future research to aid Stroke Survivors return to normal-life a little easier. Many more are in the pipeline around the world, I'm sure – I wonder if there are research-studies to do with impaired-arm-movements?

*I had the massive AVM-Brain Haemorrhage/Stroke 28 years ago, in 1995: the clinical-assessor came to our 1st-floor flat in London: she was very dismissive: ''.. she doesn't need our assistance; no home-help required..'' : ie, Murray was at work all day, everyday; I had no voice or mobility, could only transfer from my wheelchair to a sofa, or to toilet, back to the wheelchair; I couldn't cook, or wash myself without help; stairs were a challenge..: trapped in my wheelchair, hazily recall thinking her pronouncement unnecessarily harsh.

>> Perhaps that was my Eureka(!) moment – … I will show her, them, e-v-e-r-y-body!!

I submitted a video entry for 25 July 2020 Life In a Day – many thousands of video-clips from around the world were sent to film-producer Kevin Macdonald & Ridley Scott, part of the crowd-sourced documentary shown at the Sundance film festival that year. We video-filmed an entire day of my life, ..I didn't get selected but my own realization was profound(!). I did a lot more activities in 2020 than I thought possible, versus 1995, when I had the AVM-Stroke: Relearning Life from scratch, ..it seemed wholly undo-able, at that point-in-time. Another video is in the pipeline, 2023 Revisit: Life in a Day that we filmed just recently, which will be available later this year.

''Concealed behind the everyday-mask could be the untold nameless faces of Stroke Survivors, whatever creed, colour or race, at times voiceless, on the road to recovery - a caterpillar transforms into a butterfly: rejuvenated, stronger, resolute; - change- be the light of a new dawn...''

This was an illuminating Zoom-session as a guest speaker to UW Stroke Club, Seattle. I hope the Stroke-Club team found insights in the Zoom-session with Murray and I, about life after stroke.

One day at a time, positively - my stroke-rehab journey continues. Thank you for the opportunity for me being a guest-speaker & to share with you (virtually), at Harborview Medical Centre, UW, Seattle; also thanks to you for sharing your stories with us. Keep in touch.

Many thanks to:

Anna Kwak-Callen, MN, RN, CCRN-K, CPHQ
Pronouns |She, Her
Manager- Comprehensive Stroke & Telestroke Program
Harborview Medical Center | UW Medicine
 
Tammie English
BSN, RN, SCRN
Stroke Resource Nurse
Comprehensive Stroke Center 

...also Best Wishes to UW Stroke Club members with their stroke-rehab endeavours.