Stammering starting in adulthood: Craig's suspected FND journey

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Craig and Stephanie (inset)

When Craig started stammering in his 40s for no apparent reason, his speech & language therapist Steph Burgess put it down to Functional Neurological Disorder (FND). But what exactly is FND? Steph explains it all before introducing Craig's story.

As a Speech & Language Therapist (SLT) specialising in stammering, I have been receiving more and more requests to help people like Craig, whose story is below, who have developed a stammer as a result of Functional Neurological Disorder (FND). FND is the term widely used for problems with the functioning of the nervous system when a specific cause isn't found, such as a stroke, head injury or neurological conditions such as Parkinson's. 

What helps me to understand FND is to compare the brain to a computer. With a stroke or head injury, there can be structural damage to the hardware of the brain. With FND, however, the hardware remains intact but the software can glitch, affecting the messages and signals sent and received by the brain. 

One of the most difficult things for people with FND can be the lack of understanding, including among medical professionals.

Although it's labelled a disorder, it feels more helpful to me to refer to it as functional neurological symptoms. Nevertheless, FND can affect any function which is controlled by the brain and can produce physical, sensory and cognitive symptoms. This could potentially produce difficulties with speech, memory, movement, vision, bladder and bowel function and sleep, among other things. Symptoms can also include migraines, tics and seizures. All of this can obviously be extremely frightening for the person. 

The absence of a specific cause for FND does not mean that the symptoms aren't very real. One of the most difficult things for people with FND can be the lack of understanding, including among medical professionals. Currently people are often waiting many months or years to be given an explanation or to receive help. People have been told "it's all in your head" or that they're putting on the symptoms and could control them if they wanted to.

• Find out if there's a local stammering group near you

Fortunately, I belong to some great supportive networks for SLTs, which have helped me to better understand the very real impact of FND and how we can help people. I am very appreciative of SLT colleagues, especially Debbie Mason of North Bristol NHS Trust, for generously sharing their knowledge and experience of working with people with FND. For anyone who'd like to know more, The FND Hope website has lots of really useful information.

When I met Craig and he described what was going on in his life, it seemed pretty clear to me that he was describing FND. I am very grateful to him for courageously telling his story below, which I hope may help other people going through the same thing.

Craig's story

Over the last five years I have noticed some strange things happening to my brain and body. First of all, I developed a mild stammer and over time it got progressively harder to speak the more conversations I had throughout the day. Facial tics soon followed both around the right side of my mouth and right eye. Weirdly I was able to stop stammering when singing, and I didn't know then how great a respite that would be. 

I had no idea what to do, who to speak to, or whether it was a real thing or not that was happening to me. I looked online for possible answers to help me understand. I started to withdraw from society and friends, and began to fear speaking in busy places, afraid that people would stare and make fun of me. I made a conscious decision, even whilst wearing a face mask, to stop making an effort to speak in places like my local chemist. I began to take a notepad and pen everywhere I went and asked friends and family if they wouldn't mind text messaging rather than calling me as my head began to get sore after trying to push through the stammering when conversing.

Steph explained that I shouldn't feel like I have to apologise all the time for my sometimes very alarming stammers, confusion and facial tics; and that how people react is not my fault.

After a couple of seizures from speaking and my speech getting increasingly difficult, amongst other physical issues, I was accepted for speech therapy. I was very worried going into it as I had no idea what to expect and I feared the outcome. I met Steph on video call. After a short conversation, she knew what the possible issue was and explained functional neurological disorder. I felt like someone had lifted a huge weight from me. Could this actually be what I'm experiencing? I thought. I discussed with Steph all the various issues I was having and it all pointed to FND. I didn't know how to feel. On one hand there was a real illness that explained the changes I was going through. On the other, if it was FND, how would I manage going forward?

Steph explained that FND is a software issue that creates a glitch in the brain, causing it to create all these new, weird illnesses. She showed me how speech patterns are formed and helped me realise that some aspects of my life would have to change. Finally, it felt like someone understood and had answers. Everything she said made sense. I couldn't wait to learn more and with each session we had, the more I understood what was happening to me. I became more confident to open up to Steph and it was always managed with the greatest of understanding and patience. Why can I sing when I can't speak? I asked. Why do I suddenly switch accents? Why do I get confused so much and feel like my head is pulsing?

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Speech therapy also made me realise that whilst my life is now different, I'm still the same person and with some changes I can still live a fulfilled life. Most importantly, Steph explained that I shouldn't feel like I have to apologise all the time for my sometimes very alarming stammers, confusion and facial tics; and that how people react is not my fault — it's also not theirs because they don't yet understand. I'm still a person at the end of the day. That made such a difference. 

Whilst I'm still in the early stages of acceptance and understanding, and I'm rearranging certain aspects, things are still hard to come to terms with. The truth is, if it wasn't for Steph's help, I would be none the wiser and would be figuring all this out alone. It is very easy to feel disillusioned with what's next, having FND arrive in my 40s. But after my sessions I feel able to make specific changes that will enable me to live with it as best as possible. 

Slowing down is important. Learning to not take on too much. Recognising when I've talked for too long and need to rest and reset. Making time for enjoyable things like seeing a show, gigs and most importantly making time to see people who love me no matter what. Understanding that singing can actually be of great help to break down my speech difficulties. I really enjoy the fact that I can sing something I know even when speaking is tough. I can't sing but in that moment I think I can and it feels so good! 

There is a future, living with FND, and that's the most important thing to remember.

Have you started stammering as an adult? See What Causes Stammering? for information and help. 

You can meet others and get support through our Adults New To Stammering Group, which meets online every month.