Peter: The Human Cyborg: Scientist diagnosed with motor neurone disease opens up about journey

A scientist diagnosed with motor neurone disease teared up as he heard his new robot voice singing Gene Wilder’s Pure Imagination after losing the biological ability to do so.

Peter Scott-Morgan, 62, from Devon, appears in Channel 4’s documentary Peter: The Human Cyborg tonight, which documents his battle over two years to save his life by turning himself into the world’s first cyborg using technology.

The scientist, who lives with his husband Francis, was particularly concerned about losing his voice, saying: ‘I really want, when I’m, locked in, to sound a bit like me and convey some of the emotion and hopefully gain a bit of the empathy from people in my current state. Without that, I think I’ll feel very very isolated.’

In one particularly emotional moment, Peter and his family gather to hear his new ‘robot’ voice, which will be his main way of communicating after he is locked in.

The family are overwhelmed with emotion when it is revealed the scientists have programmed the voice to sing, an ability which at that stage, Peter has already lost.

Peter Scott Morgan, 62, from Devon, appears in Channel 4's documentary Peter: The Human Cyborg tonight, which documents his battle over two years to save his life by turning himself into the world's first cyborg using technology (pictured with his husband Francis)

Peter Scott Morgan, 62, from Devon, appears in Channel 4’s documentary Peter: The Human Cyborg tonight, which documents his battle over two years to save his life by turning himself into the world’s first cyborg using technology (pictured with his husband Francis) 

Peter was first diagnosed in November 2016, after noticing that he couldn’t shake his foot while getting out of the bath.  

After a series of tests, he was diagnosed with motor neurone disease in 2017, which destroys the nerve cells which control muscles. 

He explains: ‘Being locked in is not ideal. It’s not what I had planned or wanted. It is what it is. It is a shock. 

Meanwhile his husband Francis says: ‘It is, how do we deal with this. I’ve shed a tear. I’ve thought how on earth am I going to do this? It’s traumatic.’

The scientist remains determine to use technology to transform his body before being 'locked in' by the condition

The scientist remains determine to use technology to transform his body before being ‘locked in’ by the condition 

Peter dreams of transforming his body into part human, part machine, in order to help improve his quality of life when his condition deteriorates.   

As part of the transformation, and to prevent suffocating, he will breathe through a tube that emerges through his throat.

However he will be mute and needs a synthetic voice that sounds exactly like him in order to be able to communicate  

He says: ‘There is no technology I would not consider. This is cyborg territory and I am willing to be a human guinea pig to see just how far we can turn science fiction into a reality.’

At one stage, Peter has a laryngectomy to reroute his throat, disconnecting his lungs from his mouth and allowing him to breathe through a tube above his chest. However, he also loses his biological voice in the process

At one stage, Peter has a laryngectomy to reroute his throat, disconnecting his lungs from his mouth and allowing him to breathe through a tube above his chest. However, he also loses his biological voice in the process 

By summer 2018, less than a year since Peter’s diagnosis, he is beginning his transformation to become part human and part machine.  

He speaks with an Edinburgh based computer scientist, Matthew Aylett, who can make synthetic voices.

WHAT IS MOTOR NEURONE DISEASE?

Motor neurone disease is a rare condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages.

It’s caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It’s not known why this happens.

Having a close relative with motor neurone disease, or a related condition called frontotemporal dementia, can sometimes mean you’re more likely to get it. But it doesn’t run in families in most cases.

Early symptoms can include weakness in your ankle or leg, like finding it hard to walk upstairs; slurred speech, finding it hard to swallow, a weak grip, and gradual weight loss

If you have these sympthoms, you should see a GP. They will consider other possible conditions and can refer you to a specialist called a neurologist if necessary.

If a close relative has motor neurone disease or frontotemporal dementia and you’re worried you may be at risk of it – they may refer you to a genetic counsellor to talk about your risk and any tests you can have

Source: NHS UK 

 

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Peter explains: ‘One of the big problems when I email people who are locked in, they say of all the faculties that they lost, speech is the worst. The most traumatic. the one that made them feel most disabled. 

‘It is impossible even if they use text as speech. 

‘They aren’t communicating their personality, they aren’t able to convey their emotion.’ 

Before Matt attempts to clone Peter’s voice, he needs some raw materials, so Peter spends weeks in a recording studio speaking in as many different ways as he can.  

Six months later, he and Francis sit down to listen to the voice he will be hearing for the rest of his life for the very first time.

But the couple are stunned when they heard the robotic and disjointed voice, with Francis saying: ‘I think that sounds a little robotic. I think we can do better.’

And later, he told the camera: ‘His voice, he did put on a brave face, but at the end of the day what we heard we were hoping for a lot better. 

‘We’d hoped to be in a slightly better place than we are at the moment. Bit disappointing. Seems like we have a lot more to do.’

But time is running out and at the rate Peter’s MND is progressing, he will be completely locked in within a year.

He says: ‘It’s about as stressful as anything I’ve done in my career.’

Meanwhile Francis says: ‘Physically it’s obvious his muscles are wasting away. It’s a lot quicker than we thought. 

‘We were assuming we wouldn’t be here for – we were hoping for two or three years. Maybe longer. But this is where we are.’

Weeks later, Peter’s health deteriorates further and the couple are forced to make some tough decisions.

He decides to type out what he wants to say using his eyes by using cameras that will track his pupils as he looks at a computer screen.

Peter undergoes a series of operations throughout the documentary in order to embrace technology and transform into part human, part cyborg

Peter undergoes a series of operations throughout the documentary in order to embrace technology and transform into part human, part cyborg 

He says: ‘If I didn’t have faith that technology would allow me not just to speak but to interact as a human being, this would be a huge deal.’  

When the cameras next visit Francis and Peter, his paralysis has now reached his neck and he is struggling to swallow and cough.

He plans to have a laryngectomy which will reroute his throat, disconnecting his lungs from his mouth and will breathe through a tube baove his chest.

Though the operation could save his life, he will never speak again with the surgeon explaining: ‘I have a number of patients who would rather die from cancer than have laryngectomy.’

The scientist decides he will communicate using his eyes to type out words and phrases which will be spoken by a synthetic, robot voice based on his own

The scientist decides he will communicate using his eyes to type out words and phrases which will be spoken by a synthetic, robot voice based on his own 

Meanwhile Francis adds: ‘It is a lot to come to terms with. Just having a conversation is going to be very different.

‘It makes you value your relationship more because doors close more. Our challenge is to keep the doors open as much as we can.’

What is a laryngectomy? 

Peter underwent a laryngectomy, meaning he lost his physical voice, but in doing so, he will avoid the added danger of saliva potentially entering his lungs, due to his condition.

A laryngectomy is the removal of the larynx and separation of the airway from the mouth, nose and esophagus. 

In a total laryngectomy, the entire larynx is removed (including the vocal folds, hyoid bone, epiglottis, thyroid and cricoid cartilage and a few tracheal cartilage rings).

 

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And, after a disappointing first attempt at the voice, Matt is aiming for something less robotic. 

With just two months before Peter is due to lose his voice forever, the clone is ready, and the family gather to listen to a sample.

Matt wants to show what the voice is capable of and programmes it to do something Peter already can’t – sing.  

Peter is amazed as he listens to the robot voice singing, with tears in his eyes, calling it ‘unbelievable.’

Meanwhile Francis can’t contain his emotion and bursts into tears, saying: ‘It’s just amazing. Incredibly clever.’

Peter says: ‘I can hear…getting back something that I never thought I would.’

37 minutes IN 

By the autumn of 2019, Peter feels he has done all he can to give his cyborg the power of speech and goes into hosptial to have his voice removed.

He undergoes a laryngectomy, meaning he lost his physical voice, but in doing so, he avoids the added danger of saliva potentially entering his lungs, due to his condition. 

Francis explains: ‘It’s an odd combination because obviously we’re going to lose his biological voice but on the other hand, it’s a life saving operation. 

‘Without it, he would not survive another winter.’ 

And the morning of the operation, Francis is determined to be positive, telling Peter; “From tomorrow we can start planning a new chapter and put this behind us.’

Meanwhile the scientist also creates an avatar of himself in order to show his emotions in a way he won't be able to when he is fully locked in

Meanwhile the scientist also creates an avatar of himself in order to show his emotions in a way he won’t be able to when he is fully locked in 

And as he was wheeled into the operation, Peter says his last words aloud: ‘I love you.’

The operation to re plumb peter’s throat is a success, with Francis acknowledging: ‘It’s the biggest challenge that I’ve ever had to deal with and I think you’ve ever had to deal with as well, really. But I’m getting used to the silence and the quiet.

‘That takes some doing after 40 years of Peter going a lot. We’re in as good a place as we can be, given the situation.’

Meanwhile the moment of truth arrives with the technology he has been working towards since he was diagnosed arriving.

By the end of the programme, Peter is overwhelmed with the robot voice created for him and is left in tears when it sings for him and his family

By the end of the programme, Peter is overwhelmed with the robot voice created for him and is left in tears when it sings for him and his family 

He appeared overjoyed and overwhelmed when it arrived and hopes it will be a major break through in living with extreme disability, giving him and all others who are locked in a brighter future.

Using the new robotic voice, which he can control using his eyes, he says: ‘It feels like I woke up on another planet.’ 

He continues: ‘From the very beginning, Francis and I knew it would be a journey, not just for us.

“It is alright to feel scared, it comes with being human. We can fight our fears and progress will then accelerate. I am increasingly turning into a full cyborg. 

‘I will never stop being human but maybe I will help to change what it means to be human. It is a hugely exciting time to be alive. Now is not the end of anything, now is when the fun begins.’ 

HOW DID HE BECOME A CYBORG? 

Roboticist Peter Scott-Morgan has undergone many changes on his journey

Roboticist Peter Scott-Morgan has undergone many changes on his journey

Peter Scott-Morgan has undergone a complex journey to extend his life in the face of motor neurone disease. 

  • He built a life-like avatar so he can express emotions after his facial muscles have wasted away.
  • A top-end wheelchair lets him move around quickly, stand and lie flat.
  • Laser eye surgery has given him perfect computer-using vision. 
  • Eye-tracking technology will enable him to operate computers.
  • A feeding tube has been inserted directly into his stomach.
  • In a similar fashion, a catheter and colostomy bag take care of his toileting needs.
  • Most recently, the expert had his larynx remove to stop saliva entering his lungs.
  • A voice box — with his pre-recorded speech — will talk for him.
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