For Neil who is living with dystonia, fundamental research offers hope and partial relief.

Neil Merovitch is an impressive and resilient young man who has very personal reasons to believe in the importance of fundamental research.  At a young age, he was diagnosed with dystonia, a devastating disease in which normal movement is impaired due to neurological dysfunction. Individuals with this condition deal with sustained or repetitive, and often painful, muscle contractions.

Yet from the moment you meet Neil, his passion for fundamental research is clear. “I’ve always been interested in research,” he says. “It’s fascinating for me to explore the link between brain and behaviour each and every day.”  And dystonia does not prevent him from pursuing his goal, which is to obtain a PhD in neuroscience and physiology from the University of Toronto.

As dystonia has no cure, it has been part of Neil’s everyday life since childhood. Despite the perseverance of his parents to find treatments, medical professionals could only resort to medications to help alleviate symptoms and pain, and fusion of the cervical spine to correct his posture. Although these interventions had some benefit to his quality of life, they were far from perfect. “Some treatments had side effects, such as allergies, fatigue, and mood changes. Whenever this happened, I had to move on to another option. I went through a list of medications with only a few ever showing promise.

In 1999, Neil’s parents were referred to Drs. Anthony Lang and Andres Lozano at Toronto Western Hospital’s Movement Disorders Clinic. Dr. Lozano was working on adapting a technique known as deep brain stimulation, or DBS, to treat dystonia. The procedure involves implanting microelectrodes in a part of the brain which is responsible for the control of motor neurons. The electrodes are connected to an implanted device known as a neurostimulator, which sends timed electrical pulses to this region of the brain. This helps control muscle contractions. In the interim, Dr. Lozano and his colleagues Drs. Jonathan Dostrovsky and William Hutchison at University of Toronto were working towards refining the use of DBS.

Later, Neil and his parents met with Dr. Rob Brownstone, a neurosurgeon and researcher at Dalhousie University, who was also performing deep brain stimulation. He welcomed them into his clinic and eventually performed the surgery on Neil in 2005. As Neil points out, the timing was perfect. “Other symptoms were worsening and it became clear I needed a new intervention to prevent further loss of my range of motion. Without the advancements in research during those six years, I might have never have experienced the benefits of DBS.”

But Neil gained more than a treatment; he developed an appreciation for fundamental research thanks to his interactions with Dr. Brownstone. “Dr. Brownstone is a neurosurgeon but he is also a fundamental researcher. He illustrated to me why basic research is so important for medicine. I wanted to follow a similar path of pursuing basic research to improve our understanding of the brain.” says Neil.

The surgery was a general success and as the months went on, Neil regained some muscle control and range of motion. And it has made Neil a strong believer in fundamental research, and in its potential to help him and others with similar conditions. “DBS wasn’t a cure by any means but it halted the progression of certain symptoms. It means I can continue to pursue my dreams of being a researcher.”

Read the original research article about developing Deep brain stimulation as a treatment for dystonia (subscription required):

Kumar R, Dagher A, Hutchison WD, Lang AE, Lozano AM. Globus pallidus deep brain stimulation for generalized dystonia: clinical and PET investigation. Neurology. 1999 Sep 11;53(4):871-4.