Graeme Otway knew there was something wrong but every medical test he had came back clear. He lived with this for more than a year before finally being diagnosed with Functional Neurological Disorder. The Pakenham resident tells RUSSELL BENNETT what it’s like to live with the condition.
GRAEME Otway collapsed at work about 15 months ago. He was taken by ambulance to the hospital, only for all his tests to come back clear.
“They tried to discharge me and I couldn’t even walk – I couldn’t even get off the bed,” the now 39-year-old recalled from his Pakenham home recently.
“I just stumbled and was holding on to things and the nurse came out and got the doctor to get me back to bed.
“They did more tests and all my signs were coming up normal. I said there was something not right – I couldn’t even hold myself up.
“I’ve gone through so many doctors it’s not funny, because everything comes up clear so I’m put into the ‘too hard basket’. But there’s something definitely wrong.”
The FND Hope website describes Functional Neurological Disorder in an incredibly apt way – “FND is fundamentally quite hard to understand, and is certainly easy to misunderstand … the symptoms it produces are real, not imagined or put on”.
FND’s symptoms often resemble those in degenerative neurological diseases like Parkinson’s, but instead it’s not thought of as being either progressive or degenerative.
“I wasn’t right for quite a while,” Graeme said.
“It was like I’d had a stroke – my left side wasn’t working. I couldn’t use my arm, my left leg was dragging – it was terrible.”
More doctors and hospital visits followed and at one stage he was told to see a psychiatrist. With his tests continually coming back clear, some didn’t believe Graeme’s symptoms.
“I had to have my speech recorded because my doctor wouldn’t believe me,” Graeme said.
“I was talking all out of one side of my mouth, I couldn’t concentrate and my memory was shot. I just had memory fog and I went in and he took a video of me in there and he was just blown away by it.”
Still, it took him eight months to be properly diagnosed by a neurologist – Professor David Williams at The Alfred.
“Within 10 minutes of him (Dr Williams) coming in he said I had FND,” Graeme said.
“I didn’t know what FND was.
“He said ‘don’t worry, it’s not MS’.
“I was relieved at that, but then he said it was Functional Neurological Disorder, where the brain and everything is normal, but it’s not functioning properly.”
Graeme described it as “a computer that has all its hardware, but something still isn’t right.
“You open the back of it and everything looks fine but there’s something not working. It’s a software problem.
“The messages are getting mixed up from the brain to the nervous system and the rest of the body”.
Graeme still doesn’t know what caused his condition. From 15 months ago until the end of last year he went undiagnosed.
“And I’m one of the lucky ones,” he said.
“There are some people who haven’t been diagnosed for 10 years.”
Sudden noises, bright lights, and cognitive changes – these are all triggers for Graeme.
“I get affected by quite a few things, actually. It affects my speech, walking, cognitive function and I have trouble writing.
“It’s misunderstood a lot because the tests come back clear all the time but there is a problem.”
In a way, Graeme was relieved when he was eventually diagnosed – he finally had a name for his condition. But there was still so much of the unknown to wrap his head around.
“Now that I know what I’m dealing with, where do I go from here? How do I improve or how do I live with this situation?” he said.
“It took so long … I went into depression because I didn’t know how to get over that hurdle of having a condition like that, and how to live with it. It was really hard to wrap my head around it and I felt so isolated.
“You don’t know what’s going to go wrong with you until it happens. You don’t know if you’re going to have a good day, it just changes all the time. You can’t do too much – you have to break everything down to manageable things.”
Graeme admits that, at one stage, he was suicidal.
“I was thinking of a way out – from doctors saying it was all in my head, to all the tests coming up clear, to having to totally give up work – it was too much,” he said.
“It’s amazing the people who give you funny looks when you go to the bank or the post office.”
But through social media, Graeme has been able to connect with other people living with FND.
He’s also formed a close bond with some members of the local men’s shed, which he originally joined to help others.
On 13 April from 7pm at the Living and Learning Centre in Pakenham, Graeme – a keen artist – will hold an exhibition of some of his works. His theme is about the stages of FND, and the emotions that go along with it.
But, crucially, the night also doubles as an introductory evening – one Graeme hopes will lead to forming a local FND support group.
“I’m wanting carers to come along as well as people with the condition so they’ve got more of an understanding of what’s going on,” he said.
“It’s really for anyone who wants to find out about FND because it’s so prevalent.
“There must be someone you know with symptoms but their doctor doesn’t know what it is. This might be helpful for them.
“I’d like for us to help each other, because we all know what each other is going through. It’s about other people knowing, and understanding.”
FND Awareness Day is on 13 April. For more information, visit www.FNDhope.org.
