Casey’s shower routine is so mentally exhausting that she will avoid having a shower for days at a time rather than struggle through the time-consuming repetition of her routines; the washing routine, the drying in the shower routine, the leaving the shower routine.
Depending on the day, Casey’s shower routine can take two hours. This is an example of obsessive compulsive disorder (OCD) and the impact it has on 500,000 people in Australia. It can occur at any stage of life but it usually develops in late childhood and early teenage years.
QIMR Berghofer researcher, neuropsychiatrist Dr Philip Mosley worked with neurosurgeon Associate Professor Terry Coyne and Neurologist Professor Peter Silburn from St Andrews War Memorial Hospital to conduct the first placebo-controlled clinical trial of deep brain stimulation (DBS) for severe and treatment-resistant OCD. This was the first clinical trial of its type in Australasia and was funded by the Queensland Brain Institute.
“Deep brain stimulation is an established therapy for movement disorders like Parkinson’s disease and has been around since the mid-nineties. Our centre in Brisbane is the largest centre for DBS in Australia,” Dr Mosley said.
“What we’re now seeing in psychiatry is the translation of this established therapy to severe conditions where all conventional treatment options have failed.”
The trial recruited nine participants with OCD who had experienced decades of disabling symptoms to assess the benefits of deep brain stimulation.
“Seven of our nine participants showed clinically significant levels of response. In practice, this means participants tell us their thoughts are less distressing, they don’t have that horrible panicky feeling in their chest and they can begin to challenge their rituals.
“One of the best things you can do in medicine is treat someone whose life was abysmal and make their life liveable again.
“OCD prevents people from leading normal lives. I’ve seen middle-aged people who need help going to the toilet because they’re so consumed by their thoughts,” Dr Mosley said.
Casey is disabled by her OCD. “I can’t work fulltime because of my disruptive thoughts and fears (obsessions) and the extensive time spent with repeating routines and rituals (compulsions),” Casey said.
“I’ve had to record for my psychologist how long I spend on obsessions and compulsions. Really distressing thoughts and fears can consume me for eight hours a day and I can spend three to eight hours checking off and repeating tasks,” Casey shared.
“People think I’m extremely organised and always prepared but what they don’t see is the struggle to even get out of the house because I’m repeatedly checking off my lists.
“In the past, I didn’t want people to know the reality of how much I struggled. I’ve kept it a secret and this has been really hard on my family who haven’t been able to share how it impacts their life.
“I didn’t see for a long time, the toll it’s taken on my loved ones. That’s one of the most difficult things, how distressing it is for those close to you,” Casey said.
Diagnosed with OCD in 2004, after years of trying to manage it on her own, it became so severe and crippling it led to a complete breakdown in 2009 and she was diagnosed with depression – and later long-term treatment resistant OCD. She sees her psychiatrist and psychologist every month, both of whom specialise in OCD and she has been on antidepressants for over 10 years.
“When people view it casually and trivialise OCD that hurts. I’ve heard people say “I’m a bit OCD” as if it’s a quirk. That wouldn’t happen with other illnesses, you don’t say I’m a bit cancer.”
According to Dr Mosley, there is a common misunderstanding about OCD.
“People might say I’m a bit OCD because I’m a perfectionist, I like my kitchen to be tidy or I cut up my vegetables into equal sized shapes. That’s not OCD, that’s being a perfectionist. OCD is a distressing disorder, profoundly interfering with all aspects of daily life,” he said.
“The most common treatment for OCD is anti-depressant therapy supplemented with psychological therapy. But we know for some people conventional treatments fail.
“Deep brain stimulation is resource intensive and expensive so it will never be a first line therapy for people with OCD, but it does give hope to people like our participants who had explored multiple treatment options over many years,” Dr Mosley said.
Casey is hopeful of new discoveries of treatment and therapies that can be life-changing.
“I would be willing to try anything because that’s how much it impacts my life.
“Medical research is fundamental in discovering new treatments that give hope to people like me about our future,” Casey said.
*Name changed to protect privacy.
Casey finds nature good therapy.
OCD follows a cyclical chain of thought that can be difficult to break.