I was completely locked in, says mother who was paralysed by rare condition

A Scottish mother who was left completely paralysed for weeks by a rare condition has backed calls for improved access to rehabilitation.

Lynsey Macdonald, from Denny near Falkirk, has described being “locked in” her own body, unable to move, after falling ill with Guillain-Barre syndrome, which affects the nervous system.

The 42-year-old said she “couldn’t move” and “couldn’t speak” when the syndrome suddenly hit her.

She spent three months in intensive care, having been healthy beforehand, and said her motivation for recovery was to get back to her 10-year-old daughter.

Ms Macdonald said: “I had Guillain-Barre syndrome, which I’d never even heard of. One minute I was fine and the next minute I was critically ill.

“At first, the only thing I could move was my eyes. Then I lost even that.

“I was completely locked in.

“I could hear what was going on around me, but I couldn’t move, I couldn’t speak and I couldn’t communicate. It was terrifying.

“I was in a coma for two weeks and, when I started to come around, I still wasn’t really aware of everything for a long time. I could hear people around me and I knew what was happening, but there was nothing I could do.”

Lynsey’s gradual recovery was motivated by her 10-year-old daughter. PA Media

She continued: “The one thing that kept me going was my daughter. I’m a single mum, which is hard enough without having something like this on top of everything else.

“I knew I had to keep fighting because I had to get home to her.”

After three months in intensive care, Lynsey was learning to talk again but she remained paralysed.

At this point, the NHS Forth Valley Specialist Rehabilitation Unit at the Bellfield Centre in Stirling became involved in Lynsey’s recovery.

She gradually regained her motor functions and was eventually able to brush her own teeth after four months.

Lynsey said: “When everything has been taken away from you, being able to do one ordinary thing for yourself means so much.”

The trained massage therapist is not yet back at work, but has recently completed an award in education to enable her to teach.

She and colleagues recently organised a fundraising event which raised £2,200 for the Bellfield Centre.

She said: “The team went through everything with me.

“They saw me arrive on a stretcher, paralysed and needing people to bathe me, and they saw me get all the way to walking out of there.”

Ms Macdonald now hopes that by sharing her story with MSPs, other people facing devastating illness or injury will have the opportunity to regain the level of independence she fought so hard to recover.

She is supporting a campaign from the Right to Rehab Coalition, which has said that access to rehabilitation across Scotland remains inconsistent, delayed or unavailable.

The Right to Rehab Coalition says better access to rehabilitation could help people recover independence and leave hospital when they are medically ready, but services remain underfunded and fragmented.

Kenryck Lloyd-Jones of the Chartered Society of Physiotherapy, said: “Lynsey’s story shows what rehabilitation can make possible, not just helping someone recover movement, but helping them reclaim their independence, their role as a parent and their life.

Lynsey went on to raise money for the NHS unit who helped her. PA Media

“But access to rehabilitation in Scotland remains too inconsistent.

“Where you live, the services available and when you can access them should not determine whether you get the chance to rebuild your life.”

Community care minister Alison Thewliss said: “The Scottish Government is committed to ensuring all adults who require rehabilitation have timely access to the right information and services, in the right place, to support them to participate as actively as possible and enjoy the life they choose.

“Lynsey’s remarkable story demonstrates exactly how access to high-quality rehabilitative care can be life changing.

“In the last Parliament, the Scottish Government established the National Advisory Board for Rehabilitation to advise us on a national approach across Scotland.

“National principles for rehabilitation and recovery support were published in 2022 and we expect all health boards to take those forward.

“Our focus is now on implementing this work to ensure high-quality rehabilitation accessible to everyone who needs it, supported by our Allied Health Professional workforce, which has increased by 37.3% since this government came to office.”