We arrived at the Auckland University of Technology's (AUT) Akoranga Drive campus early, and were met and welcomed by a project team member, 4th year physiotherapy student, Oscar. The research team were conducting a usability study of a new upper limb rehabilitation device.

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My participation was for stroke-rehab; to trial the device so the feedback would be incredibly useful to help shape future prototypes and develop its rehabilitation capabilities.

The primary objective of the study was to observe stroke rehabilitation experts and chronic stroke patients while they used the device, and then interview them to find out what they thought.

Evaluate the device to ensure that it can effectively be easy-to-use for those in the New Zealand population who have been affected by stroke.

We chatted as we walked to the examination room, where a camera was setup with the rehabilitation device. Other props and recording devices were ready. The rehabilitation device was a revelation.

Could I somehow manage to use it and test its workings, was my initial thought. No drugs to be administered, no Botox injections, etc. Some products on the market or in research are not suitable for me to trial. The researcher sat me down and went through documentation, asked initial questions, answered my queries; introduced me to physiotherapy researcher leading the trial, Dr Nada Signal.

I demonstrated some of my challenges: my subluxated shoulder (muscle weakness, characterized by the upper arm bone dropping out of the shoulder socket), which need to be massaged into place when it is misaligned. Very tight arm and hand, and so on. Then, I was ready to begin.

It must be said that it brought back memories of the AVM brain haemorrhage in London (doing our extended overseas-experience travel), more 21 years ago. At that time, we had just been for a glorious holiday in Turkey. Pristine, secluded bays in Akyarlar; scrambling-up the amphitheatre ruins in Bodrum; on the trip to Dalyan, ancient Kaunos Lycian rock tombs and trying invigorating mud-baths; tasting delicious moussaka and delectable baklava....

bodrum waterfront, turkey

bodrum waterfront, turkey

fabulous bay+beach, akyarlar: bodrum peninsula, turkey

fabulous bay+beach, akyarlar: bodrum peninsula, turkey

ancient tombs at kaunos: dalyan, turkey

ancient tombs at kaunos: dalyan, turkey

head to toe mud pack at the dalyan mud bath, turkey

head to toe mud pack at the dalyan mud bath, turkey

amphitheatre ruins in the hills behind bodrum, turkey

amphitheatre ruins in the hills behind bodrum, turkey

gulets off the beach, bodrum peninsula, turkey

gulets off the beach, bodrum peninsula, turkey

Back to London after a marvellous break, when was the next trip...?  There was just a niggly fly in the ointment; this persistent migraine that wouldn't go away. But, I had had this sort of migraine and headaches before, off and on. Ahhh, it must have been stress from work.... I brushed it aside.

Then... my world exploded with the AVM haemorrhage – unbeknownst to me, I've had this rare condition since birth. I've had to relearn life from scratch as I couldn't: walk, talk, read, write, or remember; was wheelchair bound, and paralysed on my right side.

Hospitalised for 3 months as an in-patient, I had twice-a-day physio appointments at the gym in hospital, speech therapy as well. It was excruciatingly slow progress - but progress it did over the years when I was doing my own DIY stroke-rehabilitation, 99% of the time, after the 2 years of initial hospital out-patient treatment.

One of the only people that exercised and limbered-up my right affected arm was a physio from NZ who was a hand specialist, at the London (teaching) hospital. 

She tirelessly worked on my hand and arm whenever she saw me at the physio sessions at the gym. Then she was moved to other departments within the physio group and that's the last I saw of her. Many thanks, wherever she may be, now.

permanent reminder of the surgery; the purple colour *did* fade and my hair has grown back

permanent reminder of the surgery; the purple colour *did* fade and my hair has grown back

6 years later (2001) I finally got out of the wheelchair for good.

6 years later (2001) I finally got out of the wheelchair for good.

The other therapist who took a special interest in my arm and hand, is the hydrotherapist at AUT on our return to NZ, who worked on my affected arm for a time.

The warmth of the hydrotherapy pool invigorates and relaxes muscles. I've spent numerous sessions at AUT exercising in warm water to loosen the fascia, and enabling my muscles to be more malleable, more pliant. Warm water will relax muscles and facilitate active rather than passive movement, even my hand and arm will loosen slightly, after an hour. Passively helping my right arm to do all the ranges of motion that were necessary but couldn't do it at the point in time.

The hydrotherapist did what a lot of clinicians possibly would have given as a secondary thought: work on the less receptive part of the body, (which could still be of benefit in the long run) with stroke rehab. Think laterally, not linearly; doing activities in all ways, not just straight forwards and backwards. Forwards and backwards when cycling using the pool-cycles; then cycling freely using a pool-noodle (pool-aid). She stretched my arm in warm water when doing exercises, and she unclenched my hand, very difficult to do on dry land. Many thanks to her too.

Back to the testing of the prototype. Good, practical activities to the future patients using the further-improved device for rehabilitation. With my right (affected) arm, I was able to use the prototype to do quite a bit more than just hanging down on my side, immovable. I was able to move my right hand a little bit, to the left and right, with the help of the device. I used visualization techniques that required immersing yourself into the action, and repeat, and repeat.

Had I done enough? The time limit for the participation session was up; there is nothing to say that you've done great today, no medals had been won... but...

..., there was the feeling like a warm tingle on my right arm; could it be the start? Already my arm and hand are slightly warmer at the end of the session (they were very cold at the start) – meaning that the muscles have actually done some work. Also, I could feel the slight stretch, and my arm was looser; able to fall more to my side

Many thanks for my participation in your study, Oscar Dolk-Arcus {4th year student at AUT}; the best of luck with your trials.

And to Research Supervisors: Professor Denise Taylor and Dr. Nada Signal.   Our best wishes to the team at AUT, for furthering research into a vitally important area.

In the meanwhile, some innovative thinking of my own - in early 2017, we filmed stroke-rehab videos, for ''How-to with One hand''. Recently, we also brought out South of Spain & Beyond videos for walking. Bring on the next phase of testing!