I was asked to take part in a 'walking study' after stroke, using an EEG device, a study-trial by a student PhD physiotherapy researcher at Auckland University of Technology (AUT) at their North Shore campus. This came at the interesting time when I had a few volunteer participation sessions on the go, with other different groups, also with different universities. The coordinators all managed to juggle the schedule so that I fitted perfectly into the slots left in the timetable.

It was a brilliant day, just a hint of a wisp of breeze, bringing with it a refreshing cool lift. The physiotherapist researcher who commissioned this study, was professional, friendly and helpful. I had some concerns with the devices that they might potentially use on me - some research treatments or products are not possible or advisable for me to test out...

A team of researchers from AUT University and Exsurgo Rehabilitation, are developing an intervention aimed to improve outcomes for people with stroke. In laboratory based studies this intervention has been shown to increase activation of motor cortical brain cells associated with movement and promote recovery of leg function after stroke.

Exsurgo Rehab Ltd together with AUT researchers are intent on creating a smaller, lighter, portable version of the laboratory device which can be used in clinical settings. The technology has three components an EEG headset, an electrical stimulation unit and an exercise app, which presently is used during task related training of the lower limbs.

The study is funded in part by AUT University, the MedTech Centre of Research Excellence (PhD studentship) and Callaghan Innovation (C-Prize finalist money). This study has ethical approval from the Health and Disability Ethics Committee.

The researcher-physio gave a very concise yet descriptive overview of the process that I would go through in the following few weeks. That's all very good, but for someone with a stroke who had challenges with memory, she was brilliant.

Repetition works wonders, and she always described it in a slightly different context, which meant that I had new ways of deciphering what she meant.

As part of the walking study the physio researcher would tailor the exercises to what she felt would most benefit me based on our decisions about real life situations that I felt were physically challenging. But first things first, the EEG (electroencephalogram) machine. I was introduced to another researcher who was involved in building the back end of the device. All wires, electrodes and sensors, bound together in a headset, reaching over my head like my very own skullcap. This then was attached to a monitoring device. The EEG is a new machine for me, for stroke-rehab. I was asked to do a few simple exercises to begin with to calibrate the EEG, plotting gizmo graphs. Just like in the movies – cool!

I was reminded of the time I saw a TED Talk on YouTube about brain research. In that presentation, the speaker showed a volunteer visualizing something happening to an object - the volunteer wore a headset and was connected to a computer, on which had a picture of a 3D-cube. First some calibration to ensure base-line, then..., after a couple of goes, the volunteer managed to make the cube disappear. Incredible. Other robotics could help a paralysed person to walk, using only the power of his mind. Amazing... nigh on impossible...not in our lifetime? The technology is already here in NZ.

In the 1980's and 90's I was intrigued by new age consciousness and visualization techniques; I read books, and attended courses that promoted this idea. Visualization techniques came in handy, like setting our own body clock to wake up at a certain time without the use of alarms, in whatever country we happen to be in; memory pegs, etc. Then, I was struck by an AVM brain haemorrhage, out of the blue; requiring emergency hospitalisation and open-brain surgery for 9 hours, which I barely survived.

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 analyst programmer, during our extended overseas experience in London; unconscious within seconds, in 1995.  The ambulance came almost immediately, but it took two hospitals and at least seven hours before neurosurgeons performed the life-saving operation...  And radiosurgery six months later to take care of the remnant AVM still in my brain.

The pooled blood increased pressure on nearby brain tissue, which reduced vital blood flow and thereby... killed a lot of brain cells.  And left me with the challenges I have today. I lay prone in the hospital bed, everything had to be done for me. I was paralysed down one side. 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.

The aftermath of my AVM-stroke, I've had to Relearn Life (21st Birthday day video): to talk, walk, read, write; my short-term memory had been obliterated, had severe aphasia; paralysis on my right-side, sub-luxed right shoulder, wheelchair-bound. One day, I suddenly remembered my previous dabble in visualization. Not a lot was happening in the first few years. 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 felt quite strange. Or thoughts would come to me, hours even days, after the conversation had passed.

I kept at it anyway, trying... and re-trying. It may not be detectable, but the intention to speak well, walk, remember, etc, was foremost in my mind. Murray and I had to play ''charades'' for real, each and every day, as I would forget my train of thought within seconds of having uttered and slurred only a few words. The more I visualized and did all the actions to bring about the 'change', the easier it got over the years, I believe.

Back to the TED Talks video with EEG; the speaker had presented a powerful message – when someone is thinking about something, you are able to see-it-in-action, through a device that reflects what your brain is doing – very cool! The basic premise was if you honed-in on a thought to the exclusion of all else, i.e. keeping all distraction to a minimum; playing soft music, and concentrated on doing-the-activity,.. perhaps, you also could do -magic- ! Some impressive research in various countries of the world as well as in NZ. This was exciting...

The walking study: I was introduced to two of the team at Exsurgo Rehab Ltd, who would be monitoring and tweaking the application, as well as taking photos & video-taping the process. The exercises to start off with were keyed into the application that is aligned to the headset. The tasks were set to challenge me under the guidance of the therapist, and paired with an FES (functional electrical stimulation) device. Basic movements to start off with, then slightly more speed and complex routines, varying the parameters.

Mounting steps, backward and forwards walking; dismounting, steps in-between higher steps, going up, and going down and balancing whilst carrying a cup of water; floor foam pads of various softness, even dance steps! The researcher physiotherapist put a lot of thought into challenging me more each session, with my level of capability. I felt stretched after each session, as tasks that were perhaps too comfortable at that time, were made harder the next session. The scope for physiotherapists to alter parameters and difficulty for unique tasks, is great.

….cosmonaut time again: ready for lift-off?

….cosmonaut time again: ready for lift-off?

The walk-study team at AUT and Exsurgo Rehab took photos of me, and video-taping, 3 weeks or so, in total. We captured a selection of videos of tasks, 'before' ... and 'after' the intervention with the EEG-device, on the last day of my walking study. Together, they possibly form a convincing picture of my walking, from the balance, strength, coordination of movements. The physio researcher performed final outcome tests; a resounding confirmation - from: marginally .. to quite an improvement. I had an interview with another clinician on my thoughts of the intervention with the EEG-device later.

 
 

What was it that they said? Raindrop falls on dry earth, runs down a hill, will create a rivulet after some time; then a river over eons. If you throw enough mud at the wall, sooner or later, some of it will stick. I remembered what it felt like to speak only in halting, slurring words, listening to the sounds and trying to imitate them to pronounce words; the thoughts I could remember for just a split-second while I struggled to bring out them into the open before they vanished into thin air - patience, perseverance, persistence, is the key.

Wheelchair bound for quite some time after my stroke, shopping on ground level were the mainstay of clothes shopping, in very tight confines for my wheelchair. To go up the stairs in a 2 or 3 level building was a challenge, lifts were few and far between in UK at that time, except for larger shopping centres. Grocery shopping? Sitting in my wheelchair while everybody else was on their feet, rushing from aisle to aisle, people with missions, somewhere else was calling; I was always conscious of being in the way of shoppers.

First time using the escalators when I was wheelchair-free? I thought: great, ...but... My clonus-affected right leg would trigger and I’d get the involuntary thrum-thrum effect of muscle spasms disallowing me to step onto the escalator, to ascend or to descend, when I was shakily relearning to walk, taking very, very minute steps in case I fell. Bannisters were great if you could find it in stores. Putting weight on my affected leg, more and more, helped; weak muscles had to be stronger. Suddenly I managed to do it, <mount the escalators> and stay on. And <travellators, later on> - it just takes effort and time... 

Similarly with walking, a task undoubtedly challenging. Some of my muscles was atrophied due to non-use when I was in the wheelchair. The neurosurgeons and doctors initially had mentioned that within 2 years, if anything were to come back, it would have; after that it's anybody's guess. I was hospitalised for 3 months during the initial bleed, then on my own apart from physiotherapy outpatient services at the hospital and speech therapy once in a while, in spurts, for 2 years... I had to re-learn motor-skills, walking and develop some more ability, dexterity and strength; 23 years on, it's going great.

We went to the French Festival over that weekend. As we entered, we faced a stand advertising a dinky little electric car from Renault, the ‘Twizy’. Next to it a photo-booth to take a picture of you inside this very small car – a good marketing strategy.

Unfortunately, the Renault Twizy was on a podium, about two feet high. That’s a huge step…upwards. Normally I’d dismiss it, but after going through those walk-study sessions that slightly increased my 'reach', I decided to give it a go, with balance support from Murray… bit of effort but I made it. Job done - chalk up another milestone. And, we have the photo to prove it.

From 1995 when I had the stroke, till 2018, I've come along in strides over the last 10 years; and in the last 3 weeks under the guidance of the physio researcher, in the walking study at AUT using the EEG-device, the future technology. Little by little, and do the actions required; one day at a time. It could take decades, .. it could be a few years – stroke recovery is non-definitive. If you believe you can, you're already halfway there.

DSC_8287 - cp+sml.JPG

We'd very much like to thank:

  • Gemma Alder MSc BSc Doctoral Candidate AUT University

  • Professor Denise Taylor, Health & Rehabilitation Research Institute, AUT University

  • Dr Nada Signal, Senior Research Fellow, AUT Health & Rehabilitation Research Institute, AUT

  • Usman (Rashid) – Doctoral Candidate AUT University

  • Richard Little – Chief Executive Officer, Exsurgo Rehab Ltd.

  • Faisal Almesfer – Chief Technology Officer, Exsurgo Rehab Ltd.

  • Scott Brebner – Software Design and Developer, Exsurgo Rehab Ltd.