{"id":792154,"date":"2026-10-05T00:08:13","date_gmt":"2026-10-05T00:08:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/uk\/792154\/"},"modified":"2026-10-05T00:08:13","modified_gmt":"2026-10-05T00:08:13","slug":"functional-neurological-disorder-families-open-up-about-living-with-lesser-known-neurological-condition","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/uk\/792154\/","title":{"rendered":"Functional neurological disorder: Families open up about living with lesser-known neurological condition"},"content":{"rendered":"

Scots living with a little-known neurological condition are calling for greater awareness and more funding for research into the disorder.<\/p>\n

Functional neurological disorder (FND) affects an estimated 10,000 to 12,000 people in Scotland. However, those living with the condition believe the true figure could be higher due to the challenges of diagnosis, with many spending years searching for answers.<\/p>\n

FND affects how the brain sends and receives signals, disrupting normal body function despite there being no structural damage to the brain.<\/p>\n

FND is a problem with how the brain sends and receives signals, affecting body function without any physical damage to the brain\u2019s structure.<\/p>\n

Common symptoms include tremors, muscle spasms, mobility problems and non-epileptic seizures, even when scans and other tests show no physical damage.<\/p>\n

People living with the condition say they are often misunderstood and accused of faking their symptoms.<\/p>\n

\u2018I thought I was the only person living with FND\u2019\"PamelaSTV NewsPamela has FND STV News<\/p>\n

Pamela Carmichael tries to highlight her condition with a touch of humour on TikTok.<\/p>\n

But living with functional neurological disorder isn\u2019t fun and games.<\/p>\n

She first noticed something wasn\u2019t right during Covid after she began regularly tripping over.<\/p>\n

She was initially told by doctors it was suspected motor neurone disease (MND). It took four or five years before her diagnosis was later changed to FND.<\/p>\n

\u201cI take seizures, involuntary movements and tics, which are very stressful because you don\u2019t know what\u2019s coming out of your mouth at times.\u201d<\/p>\n

She says she has to manage her seizures without treatment as they are non-epileptic.<\/p>\n

\u201cI can\u2019t speak for a couple of hours after a seizure, and my hands and feet turn in. My husband has to help move me to and from my chair.<\/p>\n

\u201cI can hear everything going on around about me. I joke to my husband \u2018watch what you say as I can hear.\u2019<\/p>\n

\u201cWe make fun of it so it doesn\u2019t get depressing and bring you down.\u201d<\/p>\n

\"The<\/p>\n

Pamela says learning she had FND was incredibly isolating \u2013 and there was also a lack of understanding from others.<\/p>\n

\u201cI\u2019d never heard of FND in my life before. When I was diagnosed, I thought I was the only person who had it.<\/p>\n

\u201cThere\u2019s not enough information and knowledge. One day I can work perfectly, and on other days I can be in a wheelchair.<\/p>\n

\u201cPeople look at you as if you\u2019re faking it, thinking \u2018How can she be okay one day and in a chair the next?\u201d\u2018<\/p>\n

But Pamela has found many others like her, including Kelli Meikle, through the Glasgow FND support group.<\/p>\n

Kelli says they are among many people in the group who say they are accused of faking symptoms.<\/p>\n

\u201cNothing is what it seems. Our walking and talking can be okay, then an hour later we\u2019re in our chair. It\u2019s as if they look at you and think, \u2018Why is she like that?\u2019 People can be very judgmental.<\/p>\n

\u201cOur software is completely gone. The information that our brain sends us to eat or blink is all wrong. You\u2019re telling yourself to walk, but you can\u2019t. We have no control over it.\u201d<\/p>\n

\u2018I lost control of my body \u2013 it was scary\u2019\"KelliSTV NewsKelli Mekale STV News<\/p>\n

After a successful career in business, mum-of-three Kelli Meikle re-trained in law, but two years ago woke up with pain in her back, and numbness in her left side \u2013 throwing everything into disarray.<\/p>\n

\u201cI started losing control of my legs and arms and couldn\u2019t walk. Some days I couldn\u2019t speak, and even when I could speak, it was like spaghetti junction.<\/p>\n

\u201cThat\u2019s pretty scary, especially when they\u2019ve given you a whole lot of other illnesses they thought it could be.\u201d<\/p>\n

After several hospital appointments and trips to A&E, she was told by a neurologist it\u2019s likely she has MND. She is now waiting news of further treatment.<\/p>\n

In the meantime, she has been forced to adapt her daily life, including giving up running and cooking.<\/p>\n

\u201cI\u2019ve always been really active. I used to run marathons. We\u2019d go climb a Munro. But I\u2019m limited now. I\u2019m not allowed to climb the stairs if I\u2019m in alone. It\u2019s a huge change.\u201d<\/p>\n

FND groups want to see more funding and research put into the condition \u2013 and more support offered to people like Kellie and Pamela.<\/p>\n

\u201cI would like to think there\u2019s a lot more research into it and how we can manage it more.\u201d<\/p>\n

\"ProfessorSTV NewsProfessor Jon Stone STV News<\/p>\n

NHS consultant neurologist and honorary professor of neurology, Jon Stone, has focused on FND since the late 1990s.<\/p>\n

He says understanding and treatment has come a long way since then.<\/p>\n

\u201cThere are various groups in the UK doing a lot of clinical research, including our own. Clinical trials are important to show some of these therapies can be effective.<\/p>\n

\u201cThrough various forms of rehabilitation therapy, physiotherapy, occupational therapy and psychological therapy, we\u2019re finding ways to retrain the brain so it works better.<\/p>\n

\u201cWe have an FND pathway recommended to health boards which sets out how they assess, treat and manage patients. People can have this condition for a long time, so long-term follow-up studies are important. It\u2019s a hard condition to improve from.<\/p>\n

\u201cWhen I think back to my own time training, it\u2019s hard to imagine we would have made this progress. It was almost completely invisible in training and textbooks at that time.<\/p>\n

\u201cWe\u2019ve got a long way to go, but we\u2019ve made some progress.\u201d<\/p>\n

A Scottish Government spokesperson said: \u201cIt is vital that people with neurological conditions feel properly supported and involved in their care.<\/p>\n

\u201cThrough our Neurological Care and Support Framework 2020-25 we provided \u00a3148,863 to projects which specifically aim to improve the information and support available to people with FND in Scotland.<\/p>\n

\u201cThe Centre for Sustainable Delivery published a national pathway for FND in 2024, to support clinical staff to more effectively diagnose and manage FND and provide better access to evidence-based treatment.\u201d<\/p>\n

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