For Mario Della Grotta, time was a commodity more precious than gold. His days consisted of a long, agonizing series of ritualistic routines involving counting, memorizing, organizing books and papers, checking and re-checking, over and over again. Mario was one of millions of Americans suffering from a devastating form of mental illness called obsessive compulsive disorder (OCD). At the height of his OCD symptoms, he lost the time to be with his family, to pursue his college studies, and to enjoy living. The OCD totally consumed his life. Although he usually woke up early, around 5:30 am, he would spend hours thinking about his plans for the day. "I would just lie there and review what I was going to do that day," he explains. "I would just go over and over and over my plans."
Once he was finally out of bed, it would take another two hours to shower, shave, and brush his teeth. He felt an overwhelming compulsion that everything be done in a certain way, and a certain order, and couldn't stop until things felt "just right." He would often wash and re-wash his hands, even though he had just taken a long shower. By this time, Mario had been awake for about five hours, the morning was half over, and he was barely ready to begin his day.
"There was no time to eat breakfast," he says. "After the shower, a new ritual would start. Bathing rituals were always the same, and I would get done with those about 10:30 am. Then there would be worries about papers or books being properly aligned, or calculations and handwriting being perfect. I never ate breakfast and never stopped for lunch. I only ate the dinner my wife cooked for me."
Mario's day would end pretty much the way it started, with a two or three hour routine of repeatedly reviewing what had happened that day. Sleep, like so many other things in his life, was lost to him because of his OCD symptoms.
A bad dream of a life
Mario recalls that his "bad dream" of a life, tormented by OCD, began in grammar school when he became obsessed with numbers. As he grew older his obsessions expanded to include grooming habits, dressing, and counting money. He recalls taking six hours to count the Sunday worship donations at his parish.
And then there was the incident with his wife.
"When my wife was pregnant with our first daughter, she fell down the front stairs to our house during a snowstorm," Mario recalls. "She asked me to go to the hospital with her to make sure the fall did not cause harm to the baby. As I lay in bed ritualizing, my immediate response was that I could not go. I did not tell her why, but she knew the reasons; it would have interfered with my OCD rituals. I went to the hospital only after reaching a point when I felt comfortable with my ritualizing. Living with OCD has been like having a third person involved in our marriage. How do you choose between your spouse and your OCD? Believe me, it was very difficult."
For the longest time, Mario's wife Sheri had been insisting that he seek the help of a psychiatrist for what she believed were behaviors that appeared to be obsessive compulsive. Sheri worked at Butler Hospital and knew of a team of psychiatrists, Drs. Ben Greenberg, Steve Rasmussen, and Jane Eisen, who were world-renowned experts in treating people with severe, incurable forms of OCD. In Sheri's mind, Mario fit the profile of the kind of people the doctors were trying to help. He agreed to talk with them and began taking medications and going to weekly therapy sessions. In the majority of cases, this two-pronged approach can have dramatic results. But there is a percentage of OCD-sufferers who, for reasons not understood, do not respond, and Mario was one of them.
Mario felt time was running out for him. His life "was a mess." He was depressed and had to drop his college studies. His OCD rituals were consuming 15 to 18 hours each day. He remembers feeling so hopeless about his condition that suicide became a consideration.
It was then that he heard about an experimental treatment being tested in Belgium called Deep Brain Stimulation (DBS).
Drs. Greenberg and Rasmussen were about to begin the first tests of that technique in this country.
"We knew the risks involved," recalls Mario. "My wife was scared because the doctors would be working in my brain. I took a different perspective on this. This surgery was going to help me, and in turn it would help others. I knew by committing myself to this surgery, I would be paving the road for others suffering with OCD."
At Butler, Mario was carefully screened by a team of clinicians who, after documenting his inability to respond to all other forms of therapy and medications, approved him for DBS.
In February 2001, he underwent surgery to implant the DBS devices. Two weeks later, the devices, sometimes called "brain pacemakers," were turned on and adjusted. Their purpose is to change the workings of brain pathways involved in OCD. Mario was the first person to enroll in a DBS for OCD research study funded by Medtronic, Inc (the device maker) and the National Alliance for Research on Schizophrenia and Depression (a private foundation).
Four years later, Mario says the stimulation has reduced his OCD symptoms by about 70 percent. He is hopeful that as he continues his behavioral therapy, that he might see more improvement. But right now, his life, and the lives of his family, are so much better.
So much better
"When I think of what life was like before the surgery — it's just a wonderful feeling now," he says. "I remember that I told my wife before the operation, 'If I have a 10 percent improvement, this will all be worth it,' but I feel so much better than that." His wife Sheri is happier and says she sees a difference in his behavior. Mario now has more time to spend with his wife and his second daughter who was born earlier this year, and to pursue his college degree.
During a three-month period during the spring and early summer, Mario was able to function with the DBS device turned off. This was a significant and unexpected development. Dr. Greenberg believes that the procedure may have reduced his symptoms enough to enable him to fully benefit from the behavioral therapy techniques he has learned for controlling the OCD. The OCD research group is continuing to monitor his successful recovery.