A former military serviceman’s two-year journey to a motor neurone disease diagnosis highlights the need for greater awareness and support for patients.

PETALING JAYA: At 60, Ahmad Nurzahid Mohd Yusoff never imagined he would one day struggle to move his own hands. A former military serviceman with 25 years of service, Ahmad Nurzahid once led an active, physically demanding life. Sports was part of his routine, and golf was a passion. Physical strength was something he had relied on all his life.

Today, he is living with MND – and serves as a committee member of Motor Neurone Disease Malaysia, advocating for others walking the same path.

“Most people don’t even know we have MND. Even some doctors initially think it is something else.”

Like many patients, Ahmad Nurzahid’s symptoms began subtly. Both his hands grew weaker. Simple movements became difficult. For someone who had spent decades in military service, it was alarming.

“I couldn’t play golf. I couldn’t do many things I used to do,” he recalled.

When he sought medical help, he was first referred to orthopaedics.

For nearly a year, doctors investigated whether the weakness was related to bones, joints or muscular injury.

“I believe many patients go through the same experience. You are sent from one department to another.”

During that period, he underwent five MRI scans, multiple CT scans and numerous blood tests, yet there were no clear answers.

Eventually, he was referred to a neurologist where he underwent an electromyography (EMG) test – a procedure involving fine needles and electrical impulses to measure muscle response and nerve function.

“You cannot simply be told you have MND. The doctors have to repeat the EMG two or three times. They need to see how your muscles respond. Only then can it be confirmed.”

By the end of 2022, after nearly two years of medical investigations, his diagnosis was final.

The moment of diagnosis remains etched in his memory.

“When you are told, you don’t fully understand. You don’t know what MND really is,” said Ahmad Nurzahid.

Doctors informed him that the average life expectancy after diagnosis ranges from one to five years, depending on how aggressively the disease progresses.

“It depends on how fast the symptoms move.”

Then came the silence – the overwhelming mental fog that many patients describe.

After receiving his diagnosis at Kuala Lumpur Hospital, Ahmad Nurzahid did something unexpected.

“I walked home,” he said. Home was in Taman Maluri, Cheras – several kilometres away.

His wife was stunned when she learned he had made the journey on foot.

“I was lost at that moment. I didn’t know what to process,” he said

For many patients, he added, reality only sinks in later – often after researching online and understanding what MND truly means.

Instead of retreating inward, Ahmad Nurzahid chose to become part of a community.

As a committee member of MND Malaysia, he helps support newly diagnosed patients who may be going through the same confusion and emotional shock he once experienced.

“The main thing is the feeling. Everybody will go through it. Depression, fear, uncertainty.

“When another patient speaks to you, it’s different. They understand.”

Ahmad Nurzahid believes greater awareness among both the public and medical professionals is urgently needed.

“Many don’t know what MND is. Sometimes even doctors may first suspect stroke or other conditions.”

The delayed recognition can cost valuable time – emotionally and medically.

Now, as both a patient and advocate, he hopes his story encourages earlier detection and stronger support systems.

“MND changes your life. But we are still here. We are still living.”

For Ahmad Nurzahid, the journey is no longer just about managing a diagnosis; it is about ensuring others do not walk it alone, even if, like he once did, they start by walking home in silence.

 The Sun Malaysia