Functional Neurological Disorder (FND) is a medical condition that affects the functioning of the nervous system and how the brain and body send and receive signals and according to the National Institute of Neurological Disorders and Stroke, an estimated 4 to 12 people per 100,000 will develop FND.
But for 52-year-old Airdrie resident Jo Cook, it would take several years to be properly diagnosed. Prior to her diagnosis Cook experienced back pain as well as unexplained nerve pain and weakness in her left leg.
“I was originally diagnosed with conversion disorder, which is a psychological, mental health issue. But the functional neurological disorder is a physiological, nervous system issue,” she said. “FND is actually the second most common reason why people go see a neurologist. The problem is, it's dismissed as trauma.”
Eventually, Cook was diagnosed with FND and has been living with the disorder for six years now. April is World Functional Neurological Disorder Month and Cook is sharing her story to raise awareness about what she says is, “the most common condition you probably have never heard of.”
Those who suffer from FND can experience anything from problems with walking motion to extreme slowness and fatigue. This wide array of symptoms is also why it can make it hard for doctors to diagnose patients with FND.
“I have obvious mobility issues. I have to use a walker, I have chronic back pain and chronic fatigue and I also have seizures,” Cook said.
The seizures she experiences are deemed non-epileptic seizures; hence she is not able to control them with medication. At one point, Cook said she was having such seizures every day.
“They [the seizures] usually are, are combined with full-body muscle contraction. So, like a full-body Charlie horse,” she said. “And those can last about 15 to 45 minutes.”
At one point the fear of having a seizure left her completely bedridden, however, Cook who is fiercely stubborn and determined and had a wickedly dry sense of humour took it upon herself to continue living with her illness, rather than letting it control her.
She hired an artist to customize her helmet, which she must wear when she isn’t strapped into her wheelchair and in public. Cook also decked out her walker.
“I'm like if you’re going to look at me, well look at me. I put eyes and a mouth on my walker. I also have alopecia, so I am bald,” Cook said. “So, these poor people see this bald woman with a walker, people are looking at me like I have one foot in the grave. So, I'm like, Okay, fine. I'll put a happy face on my walker. Let's have some fun with it.”
While Cook’s husband, Tim Yorke shares his wife’s stubbornness and determination, he admitted there is also a great deal of worry he deals with.
“[I’m] terrified to know that I can't be with her every minute of the day and I can't protect her. You know, somebody you love is having an issue and you're supposed to be able to help,” he said. “And to me, it just never seemed like I could do enough. So now I'm at the point where I worry still, it never goes away, but it’s tempered.”
It’s tempered by the fact that over the past several years Yorke and Cook have bought medical equipment meant to keep Jo as safe as possible.
“We’ve got Jo a power scooter, we’ve got her a power chair. We do have walkers and we did have a wheelchair outfitted with a strapping system. So, we've done everything we can to try and keep her safe.”
Cook also has a service dog to help her.
“I did get a service dog last July and that was two years of training and waiting for him and he helped me with the pain, the stress of all of it,” Cook said. “When I come out of seizures, there's a high anxiety response and he’s helped me reduce that, especially if we're in public.”
And even though everyday tasks for Cook can be a monumental challenge, she underlines that perhaps the biggest challenge and trauma of what she has been through is when medical professionals didn’t take her seriously at the outset of her symptoms.
“At first, it’s terror; pure unadulterated terror because I didn’t know what was happening and then I’m being patted on the head like an irrational child and sent back to class,” Cook said. “So there’s terror and then anger and to have that happen for three years? It’s devastating.”
Cook also said that once she was diagnosed, a part of her, identity was lost amidst all of it, something she has had to fight to get back.
I realized I want to be me again because there's a part of you that gets lost with sudden disability. You don't know who you are anymore because you can't do anything,” she said.
Airdrie’s city hall will be lit up in orange and blue on April 13th to raise awareness and support those living with FND.
Send your news tips, story ideas, pictures, and videos to email@example.com