'I couldn't give a thumbs-up - I realised it wasn't normal'

A former soldier who was diagnosed with a rare, incurable condition after he was unable to give a thumbs-up to a colleague has revealed that he now has the hand grip strength of a 90-year-old person. Clive Phillips, 50, originally from Birmingham but now living in Hope, New Zealand, has always taken pride in his fitness and health, enjoying activities such as mountaineering, walking and cycling.

He began experiencing some "unusual" symptoms in his late 30s – a weaker grip on pint glasses, difficulty lifting bags and struggling with buttons – but since these were subtle changes, he initially "ignored them". However, the "tipping point" came when he was unable to give a thumbs-up at work, leading to his diagnosis of multifocal motor neuropathy (MMN) in December 2019 – a rare, incurable neurological condition causing loss of motor function.

Clive, who now works in healthcare, said his condition has stabilised with regular treatment, but he still lives with residual symptoms, such as muscle wastage and reduced dexterity. According to the National Institutes of Health, it can take more than six years on average to receive an accurate diagnosis for MMN, and Clive said the symptoms are often mistaken for motor neurone disease (MND), which is fatal.

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He has since launched a social enterprise called Making the Most of Now, inspired by the initials MMN, dedicated to improving understanding of the condition and "giving patients voices". Clive has opened up about the moment he realised something was seriously wrong.

He said: "I was walking down the corridor at work and trying to give someone a thumbs-up with my left hand, the most natural action in the world, and I couldn't do it. I'm going 'hang on a minute, I can't do that', and that was the moment when I realised that this isn't normal. I was almost looking at my hand, willing it to do things, so that was the moment when I thought I need to see a doctor... and the rest is history."

Born and raised in Birmingham, Clive initially trained as a geologist before joining the Army. He served in Germany, Iraq, Afghanistan, Northern Ireland and other parts of the UK, before transitioning to his first desk job.

He met his wife Ann, they tied the knot in December 2010 and soon relocated to her homeland of New Zealand. There, Clive began working in defence and later moved into "emergency management and humanitarian work".

However, from 2013 onwards, Clive started experiencing some "unusual" symptoms – which he would later discover were due to MMN. "The first thing I remember was trying to hold a knife and fork and my hand shaking," Clive recalled.

"I must admit at the time, shaking of the hands just brought Parkinson's disease to mind, but it wasn't that obvious, so I put it to the back of my mind."

Around two years later, Clive said he had a skiing accident and "whacked" his left elbow, causing nerve pain. As the discomfort continued and he noticed the strength in his left hand diminishing, he visited his GP, who suggested that the injury should heal itself with time.

"I remember seeing the doctor and him saying the thing you don't want to hear, 'maybe it's just age catching up with you'," Clive said. "So he said, 'do some exercises and get some rubber bands to strengthen your hands'."

Clive and his wife decided to relocate back to the UK in 2018, and this is when he began to notice the symptoms "on a regular basis". "The first was realising that I could no longer hold three pints with two hands," he said.

"Then I started to notice that, sometimes, when I was trying to do something with my left hand, I would brace my elbow against my body to give it extra strength. This was mainly evident when I was getting on planes.

"Trying to reach up with something in my hands, I'd start to worry or feel like my arm was collapsing because I'd lost strength, so I was always afraid of putting my bag into the overhead locker. But that wasn't enough to send me to the doctor."

It was only in early 2019, when he attempted to give a thumbs-up at work and failed, that he realised "this isn't normal". After moving back to New Zealand that year, he consulted his GP again.

His doctor expressed concern, saying "that's not right", and Clive soon developed foot drop, a condition which caused him to "trip over". He said he was initially referred to a hand specialist and then a neurologist.

Following a series of tests and examinations, including a nerve conduction study, a lumbar puncture, MRI and blood tests, Clive's MMN diagnosis was confirmed in December 2019.

"My diagnosis, in some respects for me, was easy compared to many people," he said. "MMN is often mistaken for MND in the early phase... and if it's an average of six or seven years to diagnose it, many people will be misdiagnosed two or three times in that period. I guess I just took it one day at a time."

Clive began intravenous immunoglobulin (IVIg) therapy, which is made from donated human plasma. The treatment involves a day of hospital infusions usually once a month.

According to Inflammatory Neuropathies UK, IVIg is the only treatment for MMN approved by the Food and Drug Administration (FDA) and regulatory agencies in Europe and Canada.

The occurrence of this extremely rare disease is estimated to be 0.6 cases per 100,000 people, according to the organisation. By Christmas Eve, Clive was able to give his wife a thumbs-up again, and from that moment, he thought "wow".

He said: "I'm incredibly lucky. I started on treatment once a month, I responded well to that and pushed it out to once every six weeks."

His hand strength began to return, he no longer had difficulty with foot drop, and his symptoms have since stabilised – although he admitted his left hand now has the grip strength of a nonagenarian. Determined not to let the condition define him, Clive returned to cycling – a lifelong passion – and established the Making the Most of Now project to raise awareness and understanding of MMN.

He embarked on a series of increasingly challenging bike rides to help fundraise for MMN research, including a 22-day cycle in June this year that retraced the route taken by the first British Tour de France team.

"There was a time when I thought I might never ride again," he confessed. "I felt like I'd been given a second chance, and I wanted to do something meaningful with it."

Clive hopes that, with time and more funding, the "journey of diagnosis" for MMN will be quicker and easier and there will be more targeted treatments in the near future. He said there is an "incredible community" of MMN researchers and patients, and he hopes he can inspire and give "hope" to others.

"I'm incredibly grateful for everything I've got," he said. "I'd say to others, don't isolate yourself, connect (with people) and be your own advocate.

"You are the expert in you and your condition... so take ownership of your own symptoms, your own condition, and don't be afraid to call bullshit when they won't listen to you."

To find out more about Clive's social enterprise, Making the Most of Now, visit makingthemostofnow.co.nz