Art with wife, Debbie
May 24, 2016
When Art was diagnosed with multiple sclerosis in the summer of 2000, it didn’t take the energetic entrepreneur and software engineer long to swing into action. Frustrated by the slow progress toward a cure, Art founded the Accelerated Cure Project to identify research needs and serve as a repository for information about Multiple Sclerosis.
“My one word to describe myself is ‘passionate,'” he says. “I was always up, always energized about something. If a barrier was put up, I could just bounce through it, around it or over it.” But in the months following his MS diagnosis, he found his passion waning. He started declining invitations for him and his wife Debbie to socialize with friends and spent increasing amounts of time surfing the Internet. Debbie noticed he would sit on the couch and stare into space, something he wasn’t likely to do before. He occasionally had thoughts of suicide.
“But I wasn’t really noticing,” he says. “One day Debbie said, ‘I can’t take it anymore; you’re so depressed.’
“She really snapped it into focus,” he says. “It was like, ‘Oh yeah, I didn’t used to be like this.’ But my depression prevented me from wanting to fix the problem. That’s when I decided to talk to my neurologist about it.”
People with MS experience higher rates of depression than the general population. Scientists aren’t sure exactly why, although evidence points to multiple factors, including physiological effects of the disease on the central nervous system; the psychological impact of living with a chronic, often debilitating condition; MS medication side effects and sleep disturbances.
Although Art has a history of depression in his family, he hadn’t experienced it himself until he began taking an interferon-based drug soon after his MS diagnosis. Interferon is known to cause depression in some patients. His neurologist prescribed an anti-depressant, one that had worked for a relative of Art’s. It helps, but he still has spells of depression, only they’re not continuous.
Debbie says she first noticed that Art’s “spark” was missing. “I just looked at Art and realized something had changed,” she says. Depression raised a lot of emotions for her as well. “I felt frustration.” Prior to his diagnosis, she attributed his lack of interest in their usual social activities as being uncooperative or difficult. Now that she has a better understanding, she often feels anger at the situation, but sadness for Art. “You hate to see the person you love in pain.” She says she stops short of feeling resentment. “I think we give depression the credit it deserves. We don’t push it. If Art doesn’t feel like doing something, we don’t do it.”
In addition to taking his medication, Art says he has learned to recognize the signs that he’s going into a depressive state. “I recommend using a structured approach to monitoring your depression, especially when you are first getting a handle on it,” says Art. “For example, the Families for Depression Awareness Adult Depression Wellness Guide, has an excellent section on monitoring with sample worksheets.” Today, when he identifies a change in how he’s feeling, he warns his wife and tells himself that it’s going to go away in a few days or weeks. “It seems weird to think I didn’t notice, but in the beginning, I just couldn’t tell when it was happening.”
In addition to monitoring his mood, Art has also found that keeping a seven-day pillbox next to his bed helps him maintain his medication regimen. “I was bad about forgetting before I started doing that. I’d forget for several days and then feel really bad.”
Debbie says she is grateful for his high level of self-awareness and how direct they can be with each other. “As soon as I raise the question, ‘Are you feeling depressed?’, he’s very quick to acknowledge that, ‘Yes, this is the depression I’m feeling; it’s not directed toward you.”
For Art, the hardest part about depression has been “accepting that it’s not something I can use willpower to push through; it’s not like being sore or tired or stressed out.” At times he is fearful about the future. “I feel like it’s turning me into a different person and not necessarily a person I would like. I’m concerned about how my relationships will be impacted if I’m not me–or who I consider me to be.”