Just after we'd returned from overseas holidays, an email arrived for my perusal asking if I would like to participate in AUT (Auckland University of Technology) physio 1st-year student teaching, as the lecturer wanted to video-film a stroke-survivor subject; playing myself.

The video will involve a 20-25 minute interview followed by a couple of short clips of  physical function (walking, standing up from a chair, arm function etc).

During the interview the interviewer will ask questions about my health condition, including what effect it has had on: (i) physical ability (arm and leg function, strength, balance, coordination) , (ii) ability to do usual daily activities e.g. working, leisure activities, other everyday activities (household chores).

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The students will watch the video and are then asked to source suitable tests to assess your function.

Here were fresh, newly-minted for higher education, 1st year physiotherapy students.  I was stroke survivor of 23 years; of a catastrophic AVM brain haemorrhage, out of the blue; requiring emergency hospitalisation and open-brain surgery for 9 hours, which I barely survived, in 1995.  I was a mere 34 years old then, with a whole lifetime still awaiting to be enjoyed.

Unbeknownst to me, I was born with this condition; happy and healthy one minute, struck by a stroke, the next; significantly not-so-able, any more.  The AVM-haemorrhaged/exploded in my brain, at work as an IT  computer analyst programmer, during our extended overseas experience in London; unconscious within seconds, in 1995.   And radiosurgery six months later to cauterize the remnant AVM still within my brain.

After the emergency surgery at Charing Cross Hospital in central London, also a teaching hospital, I was inpatient for three months. I lay prone in the hospital bed, everything had to be done for me; unable to turn left or right.   I had to have bed-rails for sleep, just in case I accidentally managed to turn and fall down to the hard floor.  I was paralysed down one side. 

My face was droopy on the affected side and it was difficult to speak.  When I did try to speak, largely unintelligibly, I couldn't pronounce the words, if I could remember them – I had drastic short-term memory loss.  The timetable was set: physiotherapy twice a day, a change I welcomed each day. 

Even though my left side was unaffected, I couldn't move without help.  My body was like a lump of concrete, almightily heavy; too heavy to move on my own without help of the nurses.  Much, much later, I would learn to recruit my muscles, the ones that hadn't atrophied by then; motor control, muscle strength, to enable stroke rehabilitation.

I was part of a ward of 6 - 8 people.  I had catheters, drips, and other bits protruding from me.  Bed wash (or bed bath) was normal practice was severe stroke patients like me.  When I was more able, and could sit semi-upright, the nurses would wheel(chair) me to brush my teeth and have a daily wash at the sink, one-handedly, in an oversized bathroom.

Once a week, nurses would wash my hair, in this gigantic bathroom – only then did I realise why the massive space.  It was to accommodate an old-fashioned, very bulky crane (lift) for lifting patients out of wheelchairs into the bath!  It was a bit of a mission on hair-washing day, in a wheelchair.

The aftermath of my AVM-stroke, I've had to Relearn Life: to talk, walk, read, write; my short-term memory had been obliterated, had severe aphasia; paralysis on my right-side, sub-luxed right  shoulder, foot drop & clonus; wheelchair-bound.

I couldn't speak at will, had difficulty moving my lips, and trying to imitate the sound of any kind of speech; the sounds came to me, in fuzzy, faraway, manner.  It was as if through layers and layers of deadening obstruction; it felt quite strange.  Locked into saying the same word even though I knew that the word had changed - in fact, I had difficulty saying anything out loud.   One exercise by a clinician who visited me at home after my discharge from hospital, was a clinical psychologist: reading out loud was what she prescribed, and was a real challenge.

The interviewer asked about stairs; I managed quite well.  First of all, I had to get onto my feet, ... using a standing frame at the hospital.  My body felt like 10 tonnes of weight, as I struggled to stand, one-handedly; from sitting still in the wheelchair.  Excruciatingly, screamingly painful, the muscles which had been dormant were now asked by my body to do something.  It got easier with time and a lot of effort.

As we've lived in different homes throughout my 23 years of DIY stroke-rehab, I've devised ways of coping with clothes/sheets washing.  In London, drying rack in the house very close to the heater, was what I could manage in my wheelchair.  In Spain, we enjoyed 320 sunny days every year in our part of the country– I hung washing outside in the fresh air; we put up washing lines that were suitable for my height; wheelchair-free.  In NZ, the standard washing lines, like the rotary hoist ones, are too high; I've used A-frame airers instead.

I was asked about cooking, in the interview.  When I first returned home in London, Murray, my husband cooked the dinners, for a time.  For lunch when he went to work, I could make toast or  sandwiches, etc. use Dycem pads & one-handed chopping board

I was itching to get back to normality, with one usable hand; still being in a wheelchair, having very little speech; only able to transfer from the wheelchair to the bed, to toilet, and very little else.  After many mistakes when I couldn't recall recipes (I had to learn to read again) or remember what I put in a dish, like salt or sugar (drastic memory loss); it provided light-relief as Murray would eat the meal stoically.

From two years after discharge (when I was still an outpatient, off and on, at the hospital),  I was completely on my own, with my husband i.e. my carer.  Thus began my own DIY Stroke-rehab.  When we moved to Spain, there were new things to experience, walking on slippery floors, or on sand...we lived less than ten mins to glorious beaches and airport.  Perfect...

I've in fact written two cookbooks, many years after my stroke.  Not a  Spanish cookbook but I did write them in Spain.   I'd always been interested in cooking and was a proficient cook before my stroke.   After it, suddenly a vacuum, no recipe came to mind; reading, and reading of recipes was suddenly a challenge.  Just taste the dish and add more seasoning, or detract next time; exactly how I cooked before the stroke.  Surely it couldn't be all that difficult, to write a cookbook? 

In Spanish cuisine, freshly cooked was the key;  tapas to taste, each day, vegetables not from a green grocers, but from <huge outdoor markets; Saturday market in Santa Pola was an eye-opener.  Anything and everything could be bought; gigantic vege & fruit market; household items, gifts, clothes, shoes, bikinis, wraps; deli items from a huge trucks; salted/marinated-fish... even fur jackets and coats!  Churros were a national favourite snack, there were queues every week, waiting for hot, fresh churros just done.

Writing using my left hand (was a right-handed person before my stroke was one thing).  I now had to learn the ingredients in Spanish – great: a stroke-rehab exercise.

How to accessorize, when the dishes were finally cooked?  Placements and presentation.  Luckily, pottery was reasonably priced, as the whole area is geared for tourist trade and ceramic tableware were nice and cheerful.   The visual element of the cookbook... another challenge.  Photography...

Weight?  When I was in the wheelchair – I put on weight and girth, more than several sizes in fact.  No physical exercise, eat and not expect to put on weight?  Also no treadmill, gym workout doing circuits, cycle, play frisbee, etc.  I had an uphill battle. 

Still no physical exercise, when I was wheelchair-free – couldn't walk fast, jog, run, etc.  You can still do a lot of passive exercise, to get your heart going and metabolize (even in a wheelchair, I later realised)...  Even jiggling on the spot, or fidgeting, burns up calories. Tapping your foot, cooking, moving about preparing food; exercise while you sit, standing exercises, hanging the washing out – a fantastic way to tone muscles.

Stiff subluxing shoulder, and able to turn only part way to view the back?  Driving – presented a danger to myself and other road users; after my stroke I don't drive anymore.  In Spain because of the warmth, helps muscles to relax more, and with shoulder-manipulation and massage my sub-luxed shoulder is less stiff.

At the AUT interview, I was asked to stand and walk for gait analysis - posture, balance, clonus and foot drop: mount steps, bringing a glass of water when walking, step on foamy cushion while walking...  The physiotherapist lecturer interviewer investigated my affected right arm: it makes a difference, whether it is winter (cold) tight muscles, or summer (looser muscles) able to do more. 

Some of the video-filming and talk are shown here: 

 
 

 
 

Many thanks to Physiotherapy Lecturer Nicola Towersey, AUT for this opportunity to participate in 1st year physio student teaching.  And Digital Media Developer Reza for his great video-editing.

Murray + I have filmed walk-2018 in Bangkok and Penang, plus many more topics,  now available on YouTube.  Walk on entire-glass platform suspended 68 floors up; cross busy Bangkok street on my own without stoplights; walk un-aided in swimming pool and more, we've also entered WOW (World of Wearable-Art) award Show 2018, Wellington and submitted a garment: lots more challenges to be addressed and a milestones achieved.