Kristin Harley: Communicating in the ICU with NeuroNode

Kristin Harley, diagnosed with motor neurone disease in early 2013, makes the tough choice to have a tracheostomy. While she has been using the NeuroNode at home for the past several months to control text, text-to-speech, emails, and more – she now needs it as she recovers from surgery in the ICU at Macquarie University.

SYDNEY, AUSTRALIA – Dec.3, 2018 – Dr. Kirsten Harley made the toughest decision of her life late last month: diagnosed with motor neuron disease (ALS/MND) in early 2013, she faced complete quadriplegia and dangerously deteriorating ability to breathe, with enormous courage, humour and a prevailing will to live as long as possible with her dearly loved husband Densil and daughter Kim.

Her choices were stark: to continue to live relying for breath on a BiPAP mask, but risk dying in her sleep; or have a tracheostomy that preserved her voice but involved increased risk of choking, aspiration and pneumonia; or to have a tracheostomy and laryngectomy that enabled her to breathe and swallow safely, but lose her voice.

communicating with Kristen Harley

She settled on the latter: choosing to savour every moment with Densil and Kim, her extended family, and a widening circle of friends.

She had been communicating for some time with NeuroNode, controlling text, text-to-speech, emails, programs and her exceptionally eloquent and honest Facebook log, controlled through a small sensor on her wrist.

Now, following her surgery in the last week of November, she writes, “I won’t have to be left in an uncomfortable position, or needing my weebag emptied or to be put on the bedpan, helplessly waiting for a nurse to notice and interpret my silent cry. I will be able to tell my family that I love them. And I will be able to keep sharing my experience of living with MND, developing my role as an MND advocate, raising awareness that is essential for attracting funding to support people living with, and research towards a cure for, this arsehole-with-haemorrhoids of a disease.”

We provide 24/7 support for all NeuroNode users, and since Kirsten’s surgery, have added some neat apps she can launch on her iPhone: one enables her to select a Shortcuts icon with NeuroNode and Switch Control which immediately rings the phone on the Nursing Station in the Intensive Care Unit at Macquarie University Hospital where Kirsten is recovering.

Another sends a text message to the ICU Head Nurse’s cell phone asking for assistance.

“This means we can respond in seconds,” a senior nurse says, “instead of minutes… and that is critical.  This is a game-changing invention.” 
Kirsten’s exceptional grace and courage, and her eloquent postings, written with NeuroNode, are helping develop even more applications for everyone else with ALS/MND and other profoundly disabling conditions.

We are humbled by her courage and inspired to be able to work with her, and everyone like her, around the world.

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