As time goes on more opportunities present themselves: in this case it was to participate in a 'Health Hackathon' here in Auckland NZ, for the first time.  Perhaps there was an opportunity for us to collaborate on Stroke at this event in Auckland?

What is a Hackathon?  According to wikipedia:

A hackathon (also known as a hack day, hackfest or codefest) is an event in which computer programmers and others involved in software development and hardware development, including graphic designers, interface designers and project managers, collaborate intensively on software projects.

What is a Health Hackathon?  According to Health Informatics of New Zealand (HiNZ):

 It's a free weekend event that brings together healthcare and technology professionals to brainstorm, collaborate and develop solutions that will benefit the health sector.  Hackathons bring together people with a wide range of skills from many different backgrounds, who would not usually get the opportunity to work together.

You don’t need special technical skills to attend. If you wish to have fun while making a positive difference to the New Zealand health sector – come along. If you think you’ll be out of your comfort zone – come along. Everyone can make a positive contribution to a hackathon.  What happens here?

After (short) welcome speeches anyone with an idea for a product makes a 1 minute pitch and seeks team members. Teams form organically and work on solutions for the rest of the weekend. There are mentors available throughout the weekend to help out and offer advice.

Our Pitch:

Lets see: stroke victim, where the event occurred twenty years ago, has some progress but not 100% recovered, still has disabilities. What has the medical world come up with so far that can help improve the situation - other than the Wild West of stem-cell research, there really isn't much.  Or is there?

Despite not having medical training, I've noticed that over time that if affected limbs/muscle-groups were aided in movements according to the patients conscious will to move them, there appears to be some traction in muscle movement which suggests brain plasticity is still possible after so many years after the stroke.  We've assumed that once a new neural path is established, some motor skills can be restored.

So instead of another person aiding, the approach is for a patient to self-repair by wearing a biotech frame on both sides of the body, where movement on the well side of the body is the control, and it is instantly reflected in the power-assist in the bio-frame on the affected side; this can be in sync (eg. two arms out at the same time) or contrary (e.g. alternate leg swing in normal walking).  The more this is done, the more the eyes, as the biofeedback mechanism, are convinced that what they are asking their body to do actually happens, gaining confidence.  If sensors on the biotech detect less resistance to movement on the affected side, then the relevant body muscles are being engaged by the brain.  Next step is to then reduce the power output on the assisted side.  Rinse and repeat.

The Approach:

Since the stroke affected population in New Zealand is invariably insignificant compared to others affected by lung cancer, breast cancer, and other major ailments, a simple pitch had to be done in the context of the patient. 

After much thought prior to the weekend, Jackie'd decided to really ''stand up and be counted'' – she would do her bit of our PITCH that we would present to the Health Care personnel who were gathered there at the Hackathon. Before her stroke, she had given speeches to groups of people during her work-life. Even before that, as part of the school choir she sang, arranged music, sometimes conducted and accompanied the choir on the piano. Jackie was on stage and giving performances routinely.

But, ....THIS was the FIRST time since Jackie's stroke, that she'd been given an opportunity to speak to the public. There were at least 50 personnel there, who didn't know her from scratch. Given that she still has challenges with short-term memory, slurring her words, being able to get the pronunciations correct especially with difficult words and losing the train of thought, ... etc, she thought she did remarkably well. Click here to read her PITCH which is actually her story..

Murrays bit: I took up the second slot with a rather simplified explanation of our pitch (they are all medical, I am IT...).

We were casting the net for bio-mechanics graduates, or those doing research in that area, but came up short many other initiatives were well-established and had a larger impact base in NZ, which in the context of a Hackathon you always back the efforts that will have the most impact on the greatest number of people.  Bit of a long shot, but it gave us the opportunity to forge connections that we can work with. 

Jackie was approached by some medical trainers, to explore giving a similar sort of talk to groups of students, as most students don't get anywhere near understanding patients challenges and dilemmas in the formative years of their training; even less so regarding stroke patients since the numbers are very low that have enough confidence to share their challenges. 

Example: out in a shopping centre in 2011, we were stopped when a woman tugged on Jackie's sleeve.  This older lady struggled to talk to her but her speech pattern was in fits and starts: Jackie and I both recognised that she had had a stroke, and was trying desperately to communicate.  After what seemed like an interminably long time, she rummaged in her bag and produced a small card.  It said:  "I had a stroke 9 years ago - I have aphasia - please be patient with me".   She appeared very timid and withdrawn, but desperate to communicate.  Jackie had a short but understanding chat with her.

When a person has a stroke or other injury that affects the left side of the brain, it typically disrupts their ability to use language.  It could be a mild disturbance ... or it might almost sever communication of our inner thoughts, desires, intentions and motivations, and understand what others say.  A very stressful, debilitating isolation where the patient has to deal with and hopefully progress through it.

As part of other ongoing rehab sessions another engagement emerged quite by default where Jackie took part as the patient in a diagnosis exercise for 3rd year physiotherapy students at AUT - the first session was discovery, then a week later methodology and approaches to be used.  The students gained knowledge from our experience in those two sessions they could never get from textbooks, and the irreplaceable value of putting learned theory into practice, prior to actually going into practice for real.

Another is Professor Duncan Babbage, Director of the Centre for eHealth at the AUT, who actually specialises in neuro-rehabilitation research. {Duncan is the guy in the photo with Jackie at the top of this page}.    We're on the radar now looking for research opportunities to get involved in.

Popcorn philosophy: don't get through the day, get from the day.  Pass the popcorn.

Jackies' Pitch

Hello. This is not a pitch, per se; it's to introduce me, to you, and let you know where I'm coming from. 

My name is Jacqueline Hynd. I'm an alumna of University of Auckland and … a recovering, Stroke Survivor.

Back in 1995, I had a massive brain haemorrhage, at work as an analyst programmer, and collapsed, unconscious.

Emergency admittance to 2 hospitals later, I had Open Brain Surgery for 9 hrs. The culprit was an AVM – ArterioVenous Malformation – an abnormal tangle of arteries and veins. Unbeknownst to me, it was a birth defect and it had ruptured. Exploded in my brain, catastrophically.

– When I woke up in hospital, I found I couldn't : Walk, Talk, Read, Write, or Remember. Short-term memory was obliterated; … my mind was so silent; a complete blank.

- I was paralysed on the right-hand side, had severe aphasia + was in the wheelchair.

– 6 mths later, I had radiosurgery. A device/machine called Linear Accelerator, used a calibrated, stereotactic frame, attached to my skull, to zap the remnant AVMs.

I had a re-learn everything from scratch, even English.

  • to try + stand... later, a shuffling walk ensued;
  • brief, fleeting touches of memory : I couldn't quite capture it, before the thought dissipated ...;
  • to speak without slurring or stuttering: in the beginning, words of only 1 or 2-syllables;
  • alphabets+numbers were foreign to me; to write with my left hand; to cook; list goes on.

For me, nearly 20 years later, the most pressing things to consider: is being able to walk properly and having a usable right hand+arm. Clonus ie. muscle-spasms; Sub-lux shoulder; Footdrop, hence the legbrace, etc, is a daily occurrence, but doesn't stop me doing things.

My recent history includes:

  • writing Two: 'Stroke- / -Travelogue-Cookbooks';
  • being a Model for a Day, in a charity, Credit Crunch Calender;
  • was fortunate enough to be interviewed by the: UK's Flagship disability, lifestyle magazine;
  • the exhibition of my Pottery & Sculptural Artwork / silk-painting / mosaic-ing; ..created with 1 usable hand.
  • Milestones; along life's busy road to recovery.

I offer, a unique, insider perspective of: on-going, post-Stroke Rehab; as I journey forwards towards a better me.  GOALS - in concrete, PLANS - in sand. 

Thank you


Karen Day was the main organiser of Health Hackathon 2015:

Karen Day, RN, RM, MA, PhD, FACHI
Director, postgraduate programme in health informatics
Senior Lecturer, Health Informatics
Health Systems Section, School of Population Health, The University of Auckland

The above pitch is also included in her online blog.