Philip O'Keefe blazed trail for people with MND, trialling brain computer interface

A former Greendale man who recently lost his battle with Motor Neurone Disease has left a legacy that will improve the lives of countless others across the world.

Philip O'Keefe was 63 when he chose to end his battle with amyotrophic lateral sclerosis (ALS) through voluntary assisted dying on May 25.

He was an advocate for ensuring people had the choice to end their suffering.

But it was his decision to take part in a world-first trial that will pave the way for other sufferers to regain independence.

In 2021, Philip agreed to have a stentrode brain computer interface (BCI) inserted.

He had been diagnosed with ALS in 2015 and his quality of life was deteriorating.

The bluetooth implant - incredibly - allows the user to control a computer with their thoughts.

Philip had been living in Greendale after leaving Warrnambool at age 19.

Philip's brother Terry sums it up well.

"It's sort of like science-fiction, it's extraordinary," Terry said.

The two grew up in Winslow with their parents Des and Sheila, who had 10 children.

The couple's oldest was Trish McMillan, followed by Jennie Shepheard, Terry, Brian, James - who is known as Jock and still lives on the family's dairy farm at Winslow - and then Philip, Claire Pritchard, Maureen, Joanne Egan and Richard (deceased).

Terry said Philip was always a very philosophical man and when he was asked if he wanted to take part in the trial, he happily accepted.

When he was first diagnosed and given a prediction he had five years to live, he was determined to do everything in his power to live life to the full.

"He wasn't going to allow it to stop him," Terry said.

"He worked full-time (in logistics) right through until 2019 and then he worked part-time for another two years."

Terry said his brother was told the procedure to insert the BCI was high-risk.

"It was a fairly risky procedure and he was told he may not even survive it," he said.

"But he was happy to take the risk because he could see it could open up a whole new world for him."

At that stage, Philip's mobility was incredibly limited and he was no longer able to use his computer.

"His capacity to use a keyboard was almost non-existent," Terry said.

However, that all changed after he had the BCI implanted.

"He was able to master the technology to the point where he was sending emails, online banking - basically using the computer like anyone else does," Terry said.

Philip was the first man in the world to tweet a direct message through thought.

"No need for keystrokes or voices. I created this tweet just by thinking it. #helloworldbci," he wrote.

Philip spoke about the BCI in a video for the University of Melbourne in 2021.

"From day one I was very keen to get involved in any sort of trial to prolong my life or find a cure," he said in the video.

"I had the procedure to implant the stentrode into my brain, my motor cortex and the device into my chest.

"The stentrode sits in a major vein from my motor cortex and your motor cortex is the planning part of your brain."

Philip spoke about his decision to have the BCI inserted.

"I've always been conscious that this probably won't be a great help for me as an individual in the short-term because I won't get enough control to do what I could with my hands," he said.

"But those who come behind me will get that benefit. So I'm excited that we can help others."

Philip made international news with CBS reporting about his stentrode. I thought, 'this is science-fiction-type stuff'," Philip told CBS at the time.

Philip demonstrated his computer skills to CBS News by writing a note, his thoughts focused on a mouse clicking letter by letter, the article said.

"I can sort my emails. I can surf the web," he said.

"This gave me a reason to keep on living. And it's just been the most exciting two years of my life."

Terry said he knew his brother was delighted to be able to use the technology and improve his quality of life.

But more than that, he wanted to do it to help others.

"He wanted to leave something that was going to help others," Terry said.

When he died, he was surrounded by family and friends at his Greendale home.

"He gave us notice of that and we were all able to be there," Terry said.

Philip is survived by his wife Triss and his twin children Bianca and Liam, 18.

He attended Winslow State School and then Christian Brothers College in Warrnambool.

He played football for Grassmere in the Warrnambool and District Football League.

Philip was involved in Fight MND fundraisers in recent years.

On June 17, two of Philip's mates - Neal Morgan and Nick Myrianthis - will take part in the Big Freeze at Bacchus Marsh.

Philip had nominated the two to take the icy plunge before he died.

A memorial was held for Philip last week.

A number of people shared kind words about Philip on the Michael Crawford Funerals website.

"Blessed to have you as a big brother," wrote Philip's sister Maureen and her husband Dennis.

"We are humbled by your example of wisdom, generosity, strength and courage and will love and miss you always.

"Quietly spoken but many achievements. We admired your strength of character, intellect, dignity and bravery," another tribute said.

Philip had written some final words he wanted shared on the day, thanks to the technology he had become a a pioneer for.

"Life is beautiful," he wrote.

"Not because of the things we see or do but because of the people we meet and allow in our lives."

Philip encouraged everyone to live life to the full.

"Take note of the butterfly, the small child, the smiling faces. Smell the rain, feel the wind and fight for your dreams. Live your life: not someone else's idea of what your life should be."

Philip was philosophical about his journey coming to an end.

"My ticket is spent and has been returned: torn, tattered, creased, folded, covered in stains, some I recognise, others I will choose not to.

"Could have done more but I am content. Yours however is not yet spent.

"Therefore make certain your grip on your ticket is firm, your mind is open and to paraphrase incomparable Katie Webster, 'Use it, until you have used it all up', or the words of Rudyard Kipling, 'Fill every minute with 60 seconds worth of distance run'.

"So until our paths cross again I hope your God, whoever or whatever you conceive that entity or construct to be, guides and protects you on your life journey.

"And never let the bastards get you down!"