Case Study 3: A Daughter's Tale SARAH WALSH Is that you? JANET WALSH That's me. SARAH WALSH How come you go so many places? JANET WALSH Because my father took us every single weekend, every single vacation we went somewhere and he documented everything. And we just spent the days walking around. Look at that goat eating my dress... I wasn't so bad looking, was I? Uh, naked. Don't look, Andrew. Don't look. Look at how tiny I was, huh? ANDREW WALSH You were a cute baby. JANET WALSH Thank you. Uh, oh, this is Rockaway Playland. This is 1959... SARAH WALSH How many girls were there? JANET WALSH I don't know. I figure about 7 or 8 of us. ANDREW WALSH It looks like more. SARAH WALSH Did you win? JANET WALSH I came in second. I was runner-up, Little Miss Rockaway. Here I am. And that's my mother walking across the stage. JANET WALSH My memories are so vibrant from my childhood and from all the good things. If I didn't have the most perfect childhood up until age 14, I don't know if I could have survived from 14 to 25, with Alzheimer's disease and my father, because once the process was over, I was able to kick into going back and remembering all the wonderful things. My dad was great, he was a lot of fun. He was strict, and if you followed the rules, you had a lot fun, and if you didn't follow the rules, you got to sit in the car. I spent my share of time in the car. ANDREW WALSH How old was he? JANET WALSH Here? If I was three, he was 48 years old. SARAH How old was he when he got Alzheimer's? JANET WALSH Well, he was 58 when he first started, you know, showing signs that something was wrong. SARAH WALSH Do you think he could have had it earlier, it just wasn't like, clear? JANET WALSH Maybe. I think he was pretty sharp, though until about 58. It wasn't until he was 62 that we actually got the diagnosis of Alzheimer's disease, and that was only because he struck my mother, and he wasn't the type of man to ever hit any of us. SARAH WALSH Alzheimer's is a disease that affects your mind and when you get older. You forget things and it'll cause you, after a while, you die. My granddad got Alzheimer's disease, and he got sick and after awhile, he passed away. JANET WALSH And that's my Uncle Julius. I loved him. That's our next door neighbor, and there's my mom. SARAH WALSH She has glasses. JANET WALSH Yup, and then she got contacts. There's Zena, remember Zena? SARAH WALSH She looks like a warrior princess. JANET WALSH No, not Zena, a warrior princess, Zena, our neighbor next door. ANDREW WALSH I think we already know that my mom's going to get it probably, and we're just hoping it's when she's 85 or older. JANET WALSH I don't want my children going through what I went through as say, a daughter of someone with Alzheimer's disease at such a young age. It almost was nightmarish. When I was about 19, my dad was in the bathtub, and I was washing him, and he was soaking, and the telephone rang. I literally went 20 feet away from him to answer the telephone and you know, immediately told whoever it was that I'd have to call them back. And went back to the bathroom to find my father fully submerged in the tub. And I panicked, and I grabbed him by his shoulders and pulled him up. And I screamed, what are you doing? And he looked at me with crystal blue eyes, and I hadn't had a real crystal look from him in a long time, he said, I'm trying to kill myself. At that moment, my heart just broke, because I didn't know how to handle that, you know, here this man really wanted to kill himself. If I knew that he had seven more years and what he would go through, I would have helped him. ANDREW WALSH If my mom gets Alzheimer's, I think everyone in the family's going to take care of her. I think we'll all take turns. STEVE WALSH Thank you. Nice going, Andrew. Backboard. STEVE WALSH When we started to date, I didn't know anything about Alzheimer's, I'd never heard of it. Her father was in the final stages of life, and she would tell me about how her life changed, not being able to go away to college, her father, basically spending all the money. And she would tell me these stories, and the 13 years in the V.A. hospital and the trips, and having at 13 begin to care for your father without knowing what it is. I didn't think about it in terms of, that it would ever have an effect on us, or our marriage or our children, and quite frankly, I haven't really thought about it in those terms of it personally affecting us in our life, our lives. I haven't really thought about it until now. DR. GARY WADLER Well, that looks perfect, so everything checks out, so... any questions, Janet? JANET WALSH Well, I've really been thinking about genetic testing, you know, my background with Alzheimer's disease, and how I feel that there's the possibility it could run in my family, and I've been reading a lot and doing a lot of research on what's available, and I recently come across a doctor in New York, working in out of New York Hospital, that is working on a research protocol. And I believe for me to become part of that protocol, I would need your support. GARY WADLER I'm an internist. I've been taking care of Janet now since about 1988. GARY WADLER And obviously, not going there to simply say, here's my arm, take some blood, send me back the result. JANET WALSH No, I need you... GARY WADLER That's exactly right. I think we have to have a coordinated plan here. GARY WADLER When Janet asked me whether I would participate in testing her for Alzheimer's disease, I had lots of things going through my mind. One was my own lack of knowledge and information on the field. Secondly were concerns regarding the implications of the results. And no matter how strong somebody thinks they are, when presented with information which might be devastating information, one has to be comfortable that the individual can deal with it. JANET WALSH How do I feel about knowing this? You know, once again, I've always assumed that I'm going to get Alzheimer's disease. I think that it's my legacy and I want to be well prepared. I want to know what I want to do. I don't want to have the same situation that I grew up with. GARY WADLER How about your family? How about Steve, the kids? JANET WALSH I think Steve's heard it for a very long time and is very well aware that this is something that I've wanted for a long time. As far as my children, I would have to think about that. I think that they're very level-headed kids. I think that, I don't want them to worry. One time last year, actually two times, I picked up Andrew a little later than I was supposed to at school, I forgot that on Fridays, they get out at 2:10. And he turned to me, and he said, do you have Alzheimer's? GARY WADLER And to which you retorted... JANET WALSH I said, not yet. GARY WADLER All right, Janet, You're in good health. I have to do my homework, and what I'm willing to do now is give Dr. Relkin a call and chat a little bit about what we talked about and move forward. Great seeing you. JANET WALSH Thanks. JANET WALSH I'd like to get tested for the Alzheimer's gene primarily because I'm someone who wants to know. ANDREW WALSH My mom wants to know everything. I can't even get a secret from her unless I trade information. She's an information highway and there's a toll to get on. You have to give her a secret to get a secret. It's, if there's ever a problem in school or something, she's, I don't know, she's gotta fix it. She's got to make everything right. WOMAN ON PHONE The problem is that, you know that my mom isn't so sure that she wants to accept that there is a problem. You know, she kind of pooh-poohs it and says, oh, not to worry, it's part of him getting older and he's getting a little forgetful, and... JANET WALSH Well, I think that, you know, the first thing with older people is when things like this happen is the scary word Alzheimer's does pop up. JANET WALSH In 1988 I helped found the Long Island Alzheimer's Foundation with four other women who had either a parent or a grandparent with Alzheimer's disease. JANET WALSH I think that, armed with the knowledge we'll give you today, you'll be a little more knowledgeable to go to mom... JANET WALSH There's an estimated four million Americans with Alzheimer's disease, with an estimated four million to eight million additional caregivers affected by this disease also. They're talking about in the next 20-30 years, that multiplying to almost 14 million. JANET WALSH I want you to take action, and I want you to get him to the doctor and as quickly as possible, and from that moment forward, we will take care of the rest... JANET WALSH What's the name of this game? SARAH WALSH Memory Madness. JANET WALSH I don't know, I've never played this game. SARAH WALSH You have, you just don't remember. JANET WALSH OK, well, let's begin. We'll see what happens. My turn, right? OK... JANET WALSH I don't believe anyone could have loved their father as much as I did, any more so, but it became something that I didn't want to do, and it became something that made me angry. SARAH WALSH Things you find in the glove compartment. CDs. ? Cassettes. ? Flashlight. ANDREW WALSH A gun. JANET WALSH OK, car registration. JANET WALSH I know that I don't want to wear diapers. I know that I don't want someone bathing me. I know that I don't want someone feeding me, and I don't want my family suffering. And when my quality of life is no longer the way I want it to be, I would like to end my life. And I've thought very long and hard about that. DR. NORMAN RELKIN Dr. Relkin. GARY WADLER Hi, this is Gary Wadler out in Manhasset North Shore. I just finished seeing Janet Walsh, a patient of mine. Well, can you just give me a little bit of a background of the program? Janet sort of explained... NORMAN RELKIN Sure, sure. We're basically doing research on the issue of how to appropriately counsel people who are undergoing APOE genotyping because of the association between APOE and Alzheimer's disease, but what we're trying to do is develop the appropriate protocols for the future, so that when and if APOE genotyping does become part of the standard of care, we'll have an appropriate, responsible way of delivering the information and protecting against its misuse. There are basically three varieties of APOE that occur in most people: APOE 2, E3 and E4. NORMAN RELKIN We each get a copy of one gene from each of our parents. You can have any of six combinations. NORMAN RELKIN That's a good example a light 2-2 band with a dark 4-4 band. GARY WADLER Well, the question that clearly comes to mind is whether Janet in fact is a good candidate. NORMAN RELKIN I think you've known her a long time and have a better sense than we can of her candidacy, and I certainly want your input. NORMAN RELKIN The risk of Alzheimer's disease relates to how many copies of APOE 4 one inherits, so if you have no copies of the gene, you have less risk than if you have one, and less risk than if you have two. I think when you add to that the complexities of interpreting a genetic test which has six possible outcomes, and in which there are age and other factors that have to be calculated in, you have a very, very difficult job, one which I think is a major problem for the average physician, and we hope, through what we learn in this program, that we'll be able to encapsulate that into something that you, perhaps, will be doing in your office a few years down the line. NORMAN RELKIN OK, Gary, well, we'll be in touch then. Bye. JANET WALSH Come on, Andrew. Get up there. Went the wrong way. We're going to borrow that from Justina, right? ANDREW WALSH Yup. Continue to A Balancing Act.