“In February, 2021, I got what we assumed was a new tic,” says Niamh Cummins, who lives with both ASD (autism spectrum disorder) and Tourette syndrome. “My arms were shaking, and this in time went on to full body tremors and a very strange walk. Mum sent a video to a member of the Camhs [Child and Adolescent Mental Health Services] team I was under, and they were adamant it wasn’t a tic but couldn’t say what else it could be.
“I had also begun to get really tired, which was unusual as I was always a very ‘busy’ child, constantly moving around, and dancing – but suddenly I found myself coming home from school and just wanting to go to bed. I had no energy to do the simplest of tasks.
“Things progressed quite quickly and one Saturday lunchtime I had a huge seizure which was like the body tremors but I was unable to stop them and was lying on the ground shaking. I was terrified and my mum, who said afterwards that she was really worried, managed to get me into the car and straight to our local A&E, which was 45 minutes away. They gave me some medication which eventually stopped the seizure and I was admitted for three nights. I had numerous tests and many visits from different doctors – but no one could say what was wrong with me.”
The 19-year-old was discharged with a referral to a neurologist who, after setting her a few tasks, “grabbed a piece of paper and wrote ‘she has functional neurological disorder’ [FND] on it” before handing it to her mother, Catherine, and advising her to look it up online, saying the condition “will disappear after Niamh reads about it”.
“Mum looked dumbfounded as she had never heard about this and asked if we could book in a follow-up appointment, but the neurologist said it wasn’t necessary because the FND would go away after I read about it. I remember walking out of the hospital looking at my mum, who was trying not to cry. She rang one of the team from Camhs to tell them and they said, ‘well, that’s a great diagnosis’, but she replied by asking: ‘What part of not being able to function, move or walk and just offering a website to cure me was great?’”
FND occurs due to an issue within the function of the nervous system, which impacts how the brain and body receive and send signals. According to FND Ireland, despite about 9,000 people living with the condition in this country – and it being apparently the second most common reason to visit a neurologist (headaches are the most common) – Ireland is the only country in western Europe without a specialised FND service. The HSE describes it as a condition which arises primarily from a disorder of nervous system functioning, rather than identifiable pathophysiological disease.
“I was still experiencing extreme fatigue and seizures; school was very difficult, with threats of them keeping me off classes until my FND went away due to health and safety,” says Niamh. “But after a meeting with Mum and my Camhs psychologist, they were very supportive of me. Mum then made contact with a professor in England who had a big interest in FND and she found it very beneficial.
“Following that, she made an appointment for me with a physiotherapist, but it wasn’t much help, so she then decided to find a personal trainer for me – and since then he has been such a benefit to me as my walking improved really quickly and over time my fatigue has lessened.
It’s important to do some research and talk to people who are in a similar situation. There is a Facebook page that people can join which will help them to know they are not alone. Because that is the hardest thing for Niamh – she doesn’t know anyone else with it
— Catherine
“It is now four years on and I’m doing okay – I finished my exams last year and passed them all, despite having seizures every day – and I’m taking a year out before, hopefully, going to college. I am currently on work experience in a local hair salon, which I love, and still attending the personal trainer. However, I can be in quite a bit of pain after work [two half-days a week] but I really enjoy it – and I get free hair cuts. I have become quite good at managing some of my FND symptoms, but I have sadly accepted that, sometimes, doing things like a weekend away means some days of pain, exhaustion and seizures.”
Her mother, Catherine, who also has an older daughter, Aoife, says that Niamh has been through quite an ordeal over the past few years, which has left her exhausted, needing to use a wheelchair, experiencing paralysis in arms and legs to the point where she would “literally drop to the floor” and unable to use her hands as they would become “claw-like”.
Despite all of this, she did “exceptionally well” in her Leaving Cert and is coping admirably with what life is throwing at her, but she is unsure of what lies ahead.
“Her plan for the future is very hazy, because she’s very aware of her condition and her limitations, and the fact that there is absolutely no support now that she’s an adult – in fact, it’s even worse than when she was under paediatrics,” says Catherine. “There is nothing the GP can do, there’s no OT [occupational therapy], no psychology or physio – there is nothing at all.
“She started doing work experience in a hairdressers, but I don’t know how much longer she’s going to keep going with that, because heat is one of the things which can set her FND off. So I don’t know what her plan is for the future – because even though she is interested in law, she can’t study the traditional way by reading and writing, she learns by doing – so maybe she could do an apprenticeship in law. So she is really restricted.
“I think it’s very unfair that she is in this situation and that there is nothing for her – there is no point in just having proper treatment in Dublin as we don’t all live there and can’t get access to things or have some kind of normal life. This needs to be available countrywide.”
The mother of two, who lives in Longford, says she would advise anyone else with a loved one going through something like this to try to find some sort of distraction.
“This is how she got through in the early days,” she says. “Crochet and crafting were the main thing – and I would talk to her about something random to distract her. It’s also important to do some research and talk to people who are in a similar situation. There is a Facebook page that people can join which will help them to know they are not alone. Because that is the hardest thing for Niamh – she doesn’t know anyone else with it.
“So it’s very lonely and has been since the beginning when we were handed that crappy piece of paper with a website on it and told that it would go away, and not to come back. It was a very lonely time and she was very scared that she wouldn’t get her life back.
“Now, fortunately, she’s doing really well, but I’m worried that she’s just going to be stuck here because she needs to push herself, but she can’t, because if she pushes herself, she’ll end up paralysed with seizures and not being able to function. So we just have to see what the future brings. But she is in a good place, which is the main thing, and things are changing – maybe slowly, but at least there is some hope.”
About FND
- FND is a condition which can present with a wide range of neurological symptoms, most commonly functional weakness, functional tremor and functional seizures, but many other symptoms exist.
- FND occurs when there is a problem with the functioning of the nervous system, and this impacts how the brain and body send and receive signals.
- It is a genuine condition which can occur alone or coexist with other illnesses and neurological conditions.
- At present, Irish data on the prevalence of FND is lacking; however, going by international figures, it is estimated that the incidence rates are comparable to multiple sclerosis (MS) and that approximately 9,000 people are living with FND in Ireland.
- International research has shown that FND is the second most common reason to see a neurologist.
- Anyone can be affected by FND, but it is more common in women than men.
- It can occur at any age, but in the main affects a young, working-age population.
- The condition is increasingly diagnosed in teenagers but uncommon in children under 10 years.
