"TSC and mental health issues often go hand in hand, and are quite under diagnosed, and under recognized, both in providers and certainly in families, and people who suffer from TSC." - Nicole Danforth, Psychiatrist
Brad: My name is Bradley and I am 40 years old.
Brad: I live with Kim and Keith and the dog Abby. She's a chocolate lab five years old. I'm excited for all of us because Kim and Keith are expecting a baby on the way.
Keith [Brad's Roommate] : Any more names that you can work with?
Brad: There's William. Ted. What did you have for names, Kim?
Keith: Kim's not telling anybody.
Keith: I needed a place to live while I was in graduate school. Brad and his family were looking for someone to live with Brad to help to provide some support, some structure and some oversight.
Kim [Brad's Roommate]: So Brad how was your day?
Brad: My day was good.
Kim: Yeah?
Brad: How was yours?
Kim: Not too bad.
Brad: Yeah?
Keith: Seven and a half years ago I got married to Kim.
Brad: I did a couple of house mail pickups and I did Calsman's job and I did patient mail. I help out, I do everything that they want me to do. Things are going really well. I'm a team player.
Keith: That contact. That dinner of sitting down to share the good times, share the anxiety or concerns of the day is very, very important. That's part of the whole structure of what we do.
Dr. Elizabeth Thiele [Neurologist]: Hey Brad.
Brad: Hi Elizabeth.
Dr. Thiele: How are you?
Brad: Good. How are you?
Dr. Thiele: Good to see you. Have a seat.
Brad: Nice to see you.
Brad: I have tuberous sclerosis.
Keith: Physically, TSC has affected Brad with the, with the tubers on face, He has the little fibromas on his toes and on his feet, and on his hands.
Dr. Thiele: So here are the periungual fibromas here and here.
Keith: He's had to have kidney surgery, but I think the main implications of having TSC in Brad's case are cognitive limitations, as well as the behavioral component and the poor impulse control.
Dr. Thiele: If you're e-mailing someone a lot, kind of, you can tell if maybe it's more than you should be doing it or is it something you talk about with ...
Brad: I talk with Kim and Keith about it and sometimes it might get me in trouble, sometimes it might, you know?
Dr. Nicole Danforth [Psychiatrist]: TSC and mental health issues often go hand in hand, and are quite under diagnosed, and under-recognized, both in providers and certainly in families, and people who suffer from TSC.
Brad: Sometimes I get worried, variety of different things when I can't, when I have a whole bunch, when I have a list for my roommate and I don't get it all taken care of, you know?
Dr. Danforth: In many studies it's somewhere between 50 and 70 percent of people with TS will have behavioral difficulties.
Brad: I turn people away if I call too much.
Dr. Thiele: Well, I anybody would, but I think awareness, again the fact that you're aware of that is a really powerful thing.
Brad: Sometimes it's hard for me to sit still. Sometimes it's hard for me to wait, to wait for appointments.
Dr. Thiele: What medicines are you taking now?
Brad: Risperdal, Propranolol, and Buspar.
Dr. Thiele: And why do you take those?
Brad: Impulse control.
Dr. Thiele: And do you think they're pretty helpful?
Brad: Yes.
Dr. Danforth: The treatment for anxiety, is both medication and therapy. And certainly with an older person with TS, if they're able to engage with someone around the feelings of anxiety, you can do some cognitive behavioral work.
Dr. Thiele: Bye-bye Brad. So, take care of yourself.
Dr. Danforth: We try to encourage structure in a therapeutic way. It's not really talk therapy in that sense. It's more sort of behavioral therapy.
Brad: Are you scared. You scared, huh?
Brad: When I'm feeling stressed, I go out, talk to the people who I know in Coolidge Corner, go out, take a walk, I go meet my friends, take the dog out. I either use my computer or listen to my scanner. I have a police and fire scanner that I like to listen to.
Brad: I got plans with a friend around 7:30, quarter to 8, I'm going to, I'm going out to dinner.
Brad: Use my cell phone.
Brad: I know. All right. All right. Bye. Bye.
Brad: Write down in my food diary.
Brad: Had a sesame bagel with butter on it and a diet coke at 6:45 a.m. yesterday?
Kim: Was that your treat
Brad: Yeah.
Kim: The diet coke?
Brad: Yeah.
Brad: Kim works on helping me with writing my food log.
Brad: Today at 11:40 I had an apple juice.
Brad: I used to have a lot of anxiety, where I'd get upset and depressed and I would, I used to eat a lot;
Brad: I had a teriyaki hamburger with lettuce, tomato, sandwich and ketchup on it.
Brad: The food log helps me figure out what I did good and what I did wrong. I know if I have a candy bar, that's not very good; I know if I have a, a medium frozen yogurt, I know that's good.
Kim: You did pretty well, I would say and how's your weight this week?
Brad: Today was 194.
Kim: Okay.
Brad: My goal of the food log is to hopefully get down to 185.
Dr. Danforth: The thing that's so hard about an anxiety disorder, is that it really affects all aspects of your life.
Keith: Brad, you ready to do finances?
Brad: Yes I am.
Brad: I make a list every Tuesday. I write it down and then Keith and I go through the list.
Brad: Keith, can we add extra 20 for food shopping. Keith, more minutes for cell phone.
Brad: The list helps me figure out what I need. What I need to do. What checks I need to do. What I need to purchase. And how I can express myself in the lists too.
Keith: Why don't we go over them one by one.
Brad: It helps me figure out what I need to think about.
Brad: Order more checks. I'm getting, I have two boxes. It's almost time to start ordering more, more checks again.
Keith: When we start on the last box, that's when we order the new checks, okay?
Brad: Okay.
Keith: Okay, so not yet.
Brad: Okay.
Brad: The lists have helped me felt less anxious when I talk to Kim and Keith about what I'm doing.
Dr. Danforth: The treatment, you know, really can make a change in one's quality of life. One can actually feel better. And you know, relationships that might have made someone upset or agitated, can become actually more pleasurable.
Brad: Work is fantastic.
Brad: William, do you have any more? Any more patient mail? Here you go, I can't find these.
William [Brad's Colleague]: Okay.
David [Brad's Colleague]: Brad?
Brad: Yes, David.
David: I have a few things to bring to the Wang building if you don't mind.
Brad: That'd be great. Here I come, right now.
David: This is going to Dr. Foster. They like seeing you up there.
Brad: Okay.
David: 634.
Brad: My anxiety is much better than what it had been before.
David: Okay, we'll see you when you get back guy.
Brad: Because I get along with everybody, and I'm willing to do extra work. In the past, I wasn't really much of a team player. But now I'm a team player. I ask to do other jobs that other people can't do. I do mine, but I do other people's jobs besides mine. I'm doing great. I'm taking on more and more tasks. And I chip in. And my supervisors are very happy about that.
Brad: Have a good day Catherine.
Catherine [Brad's Colleague]: You too.
Brad: Gary, have a good weekend.
Gary [Brad's Colleague]: Yes, my friend.
Brad: Overall, I feel good, very good.