Now, Dr Peter Scott-Morgan, who was given until this year to live after his diagnosis, is endeavouring to replace all of his organs with machinery. He has had his voicebox removed and his voice recorded, and installed a catheter, a colostomy bag, and a feeding tube so that he no longer either eats or excretes.
He moves around in a specially designed electric wheelchair that allows him to be seated, standing upright, or laid down.
Recently, he's created an avatar of his own face so that he'll still be able to use a range facial expressions as the disease progresses and he loses control of his facial muscles.
The scientist, who lives in Torquay with his husband Francis, will control the avatar with artificial intelligence and resembles his own face before he was struck down by the wasting disease.
There are also other machines within their home such as a hoist and a moving bed that Peter controls with movement of his eyes.
He's committed to the task, too. He had a procedure recently that saw him lose his physical voice - he had a laryngectomy - in exchange for potentially years more life.
You see, now that he's not got a voicebox, saliva can't enter his lungs and cause him to suffocate.
The day before the procedure, he declared the end of 'Peter 1.0' and the beginning of his life as a 'Full Cyborg' and 'Peter 2.0'.
Writing on his Twitter account, he announced: "This is my last post as Peter 1.0.
"Tomorrow (Thursday October 10) I trade my voice for potentially decades of life as we complete the final medical procedure for my transition to Full Cyborg, the month I was told statistically I would be dead.
"I'm not dying, I'm transforming. Oh, how I love science."
Peter has used his years of top-level scientific experience to make this amazing transformation, and has called upon some cutting-edge technology and expertise to help him along the way.
He told the Daily Mail: "I'm about to be turned into Peter 2.0. And when I say 'Peter 2.0', I mean 'a Cyborg'.
"And when I say 'Cyborg', I don't just mean any old cyborg, you understand, but by far the most advanced human cybernetic organism ever created in 13.8 billion years.
"I'm scheduled to become the world's very first full Cyborg."
He continued: "Almost everything about me is going to be irreversibly changed - body and brain.
"It goes without saying that all my physical interaction with the world will become robotic. And naturally, my existing five senses are going to be enhanced. But, far more importantly, part of my brain, and all of my external persona, will soon be electronic - totally synthetic.
"From then on, I'll be part hardware / part wetware, part digital / part analogue.
"And it won't stop there; I've got more upgrades in progress than Microsoft. Mine isn't just a version change. It's a metamorphosis."
As well as allowing himself to still enjoy life despite his condition, Peter and Francis have also established the Scott-Morgan Foundation, which will aim to use technology to improve the lives of those 'restricted by age, ill-health, disability, or other physical or mental disadvantage'.
On the foundation's website, he added: "We are within touching distance of changing - everything. I'm not dying - I'm transforming!
"This is terminal disease like you've never seen it before. And as far as I'm concerned, bring it on.
"MND hasn't even begun to bring me to my knees. And even long after I'm locked in, I will still be standing tall."
"Thanks to HiTech - I will talk again. I will convey emotion and personality. And I'll reach out and touch the people I love. And I will not be the only one.
"Over time, more and more with MND, with extreme disability, with old age, with a passion simply to break free from their physical straight-jacket, will choose to stand beside me.
"And we will all stand tall. And we will stand proud. And we will stand unbowed. And we will keep standing, year after year after year after year after year.
"Because we refuse simply to 'Stay Alive'. We choose to thrive."Featured Image Credit: Twitter/Dr Peter B Scott-Morgan