Brad showed signs of TSC very early in his life. Although he has experienced physical symptoms of the disorder, his most troubling symptoms in adulthood have been the cognitive limitations and mental health and behavioral issues caused by TSC. Brad suffers from depression, anxiety, and poor impulse control. However, medication, cognitive behavioral therapy, and a variety of daily strategies have helped Brad manage these difficulties and have allowed him to enjoy life more fully.
Brad began experiencing seizures when he was nine months old. Although doctors put him on medications to control the seizures, they weren't able to determine the seizures' underlying cause. By the age of three Brad was having about 30 seizures a day, despite the medications he received every three to four hours. During a hospital stay when he was three and a half, Brad was diagnosed with TSC, but at the time his doctors knew little about the disorder. Because of cognitive delays, it was suggested that Brad was autistic and should be institutionalized. Despite these recommendations, his parents persisted with speech and physical therapies and eventually enrolled Brad in a special needs school.
At the age of nine a severe allergic reaction landed Brad in the hospital for a three-month stay, during which he was weaned from all medications. He also stopped experiencing seizures and has not had one since that time. And although his cognitive limitations continued, his parents saw steady improvement in other aspects of Brad's development, including hand-eye coordination. He was soon able to engage in typical childhood activities, such as riding a bike and throwing a ball.
Mental Health and Behavior
Throughout his life, Brad has had ongoing treatment for the physical and neurological manifestations of TSC. He sees a dermatologist to treat his facial angiofibromas and the periungual fibromas on his fingers and toes. He has also had kidney surgery to remove angiomyolipomas (AMLs) that were bleeding and causing pain. In adolescence and as an adult, Brad's most troublesome TSC symptoms have been related to mental health and behavior. Like so many people with TSC, Brad has difficulty with anxiety and other symptoms, including attention deficit, hyperactivity, impulsivity, and depression.
When Brad reached adulthood his parents supported his wishes to live on his own. Because of his cognitive and behavioral difficulties, Brad's parents knew that he would need some assistance. They looked for a roommate who could offer Brad not only companionship, but also support with many of his day-to-day responsibilities, such as paying bills and cooking. They posted a notice at a local college offering room and board in exchange for care, and were contacted by a student there named Keith. Brad and Keith have lived together for more than 12 years now and have become more like family than roommates. Keith has since married and now both he and his wife, Kim, share a home with Brad.
Managing Mental Health Issues
Keith and Kim have become an integral part of the multidisciplinary approach used to manage Brad's mental health and behavioral problems. Brad takes medications to help with impulse control, anxiety, and depression, and he meets regularly with a psychotherapist. Some of the most important work Brad does falls within the realm of cognitive behavioral therapy. The goal of this kind of therapy is to help the individual recognize feelings, like anxiety, and develop strategies to help cope with them.
One thing that has worked very well for Brad is a system of lists devised by Keith and Kim. In the past, Brad called Keith each time he had a concern, sometimes calling upwards of 20 times a day. Now Brad keeps a list of things he wants to talk about with Keith each evening. Brad also lists his daily activities on a calendar so he doesn't over commit himself, something he knows causes him a great deal of stress. And he keeps a food journal to help prevent impulsive eating and to keep his weight under control. He has also developed personal strategies to help alleviate stress, such as taking the dog for a walk, using the computer, and talking with friends on the phone.
All of these strategies have helped Brad feel less anxious and have made it easier for him to interact with family, friends, and colleagues. They have also allowed him to exercise more independence and take on more responsibility both at home and at work. He now has a busy but manageable social calendar and two part-time jobs. Brad says, "I feel good, very good."