Dad suffers years of purgatory living with twisted neck

A Renfrewshire dad who has lived with an excruciating “twisted neck” condition for decades has issued a plea to the Scottish Government to do more for people with “invisible” neurological conditions who are falling between the cracks.

- GEMMA RYDER

Donald MacPhee, from Bishopton, suffers from spasmodic torticollis, also known as cervical dystonia — a neurological disorder that causes uncontrollable muscle spasms in the neck, twisting his head painfully to the side. The retired Gaelic development officer, who first developed symptoms while working abroad in his 20s, says the condition has robbed him of confidence, independence and everyday comfort. “It's like being stuck in purgatory,” Donald said.

“You want answers, but you know they’re not there yet. It's tough, but you have to live with it day to day.”

The 65-year-old relies on regular botox injections and physiotherapy, but says even specialist neurological centres have offered little in the way of meaningful long-term treatment.

“Every NHS professional I've met has been caring— but the lack of knowledge of dystonia, especially at GP level, was clear. It has improved now but that’s because they've learned it all from me.

“People don’t realise how much it affects you. It’s not life-threatening but it is life changing. Things like eating or driving become hard, and you lose confidence to go out. Even simple tasks around the house are quite difficult.