A Family's Struggle with Alzheimer's Disease Continues with the Next Generation

Show: FRESH AIR
Date: JULY 14, 1998
Time: 12:00
Tran: 071401np.217
Type: FEATURE
Head: Coping with the Alzheimer's Gene
Sect: News; Domestic
Time: 12:06

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

Janet Walsh has been immersed in the world of Alzheimer's disease since she was a teenager. In 1971, her father, who was then 58, started exhibiting some of the symptoms of Alzheimer's, but little was known about the disease then and he wasn't diagnosed until four years later when he was 62.

Alzheimer's disease was then considered rare. Walsh helped take care of her father for 12 years, then she co-founded the Long Island Alzheimer's Foundation to help patients and their families. Recently, she participated in a medical study that enabled her to take a genetic test that would indicate if she was genetically pre-disposed to get Alzheimer's. The results indicated she is at high risk. She and her family have been learning to live with that.

She was featured in a PBS documentary about genetic testing. I asked her what it was like as a teenager to see her father develop symptoms of Alzheimer's before the disease was diagnosed, when she had no idea what was happening.

JANET WALSH, PRESIDENT AND CO-FOUNDER, LONG ISLAND ALZHEIMER'S FOUNDATION: Well for a long time, the house became a little bit of a war zone because my parents would argue. My mother would sense something's wrong, not being able to put a finger on it, and argue with my father about it. And he was being unreasonable about certain things.

So for a long time, I really thought my parents were getting a divorce. You know, that was the direction they were headed. A quite peaceful home all of a sudden became a home filled with agitation.

In addition to that, you know, my father would have sometimes periods of bizarre behavior, which embarrassed me as a teenager, and I really didn't understand that it was a disease, and I felt he was doing these things personally to me.

GROSS: What kind of things?

WALSH: Well, he would come downstairs while my friends were around, dressed inappropriately. He would come back from an outing and address my friends by different names. He would go outside and fight with the neighbors over the fact that they stole his wallet, when that wasn't true. So there were a lot of different -- I mean, hundreds of different incidents.

There would be long periods of time when he would be fine, and then there would be an incident. And it's quite scary as a kid, not understanding what was going on. My mother was frightened also and it was very difficult. He started losing his job, complaining about his boss.

Eventually he did lose his job. He was a union man, so I had the opportunity of escorting him down to the union offices where he proceeded to say he wanted another job. And that was what the union was set there for and they helped him find another job.

And we couldn't find a doctor that would label his disability, so he wasn't labeled disabled. We weren't able to get disability benefits, so my father had to keep working. And each time, within two weeks, he'd lose that job.

GROSS: How was he actually diagnosed?

WALSH: Well unfortunately, it all came to a head one day when he struck my mother. My father was a man who never struck any of his children; never struck his wife; was a peaceful man. And he wanted out of the house and my mother was trying to keep him in the house. This is already into our fourth year of this situation. And he struck her.

What we did was -- my sister happened to have been dating a neurologist at the time at a local hospital. She just called him up. He said bring him right over. We brought my father over to the local hospital, where he proceeded to have a fistfight with a male nurse -- actually put the male nurse in the hospital -- and remained for six weeks in a straitjacket while -- because that was the only way they could keep him there -- and sedated -- until a diagnosis was made. And this was back in 1975.

At that time, nothing was covered. My father was only 62 years old. We went quite quickly through my parents' life savings, and eventually the diagnosis of Alzheimer's disease, a rare brain disorder, was given to us. And also, we were told that we could never bring him home; that he would be, you know, uncontrollable because he was physically so strong and so well, and there were only us girls at home.

So, fortunately he was a veteran and was able to get into the North Port (ph) VA Hospital, and that's where he spent the following seven years.

GROSS: Tell the story of what happened to you when you were around 19 and you were bathing him.

WALSH: Well, after he was -- medication was regulated at the VA hospital, we had the opportunity to bring him home on weekends and holidays. And you know, because I was in school all week and my mother was working all week, that was the opportunity we had to be with him. And we would bring him home.

And over a couple of years, as the disease progressed, he was less able to take care of his own bathing and dressing and feeding, and a lot of that fell onto not only my mother's shoulders, but my shoulders also. And one of the things that I did to help relieve my mother was every now and then I would help bathe my father.

And at this one particular case, I was bathing my father. He was in our bathtub, and the phone rang. And I was waiting, obviously, for a call from a friend, and I literally walked about 10 feet away from the bathroom to pick up the phone and just say: "look, I can't talk now. I'll call you back."

And when I came back to the bathroom, my father was fully submerged in the tub. And I just, you know, grabbed him by his shoulders and yanked him up, and you know, at that point, I just yelled at him. I said: "what are you doing?" You know, "what were you trying to do?"

And he looked at me and I hadn't really had a clear sensible statement out of him in a very, very long time. And he just looked at me and he said: "I'm trying to kill myself." And it was just a real unbelievable moment in my life because -- I don't know -- I don't believe he probably could have killed himself in the tub. I don't know if someone can do that. But -- I mean, just submerging yourself, I guess your body eventually would bring yourself up.

But for me, it was the point in time where I recognized that even though my father had very less and less times where he was coherent and less and less times with us that we recognized him as the man he was, he was still there. And he realized what was happening to him, not in its full blown picture, but he knew that he was losing his mind. And he was -- he didn't want to live like that.

And unfortunately, he had seven more years to go after that.

GROSS: Do you think that they were seven miserable years for him? Do you have any way of really knowing what he was feeling?

WALSH: Well, I know that there were times where he didn't want to go back to the VA hospital. And he would -- he would plead not to go back in there, but you know, as a kid, I had no choice but to bring him back there, because the doctors were telling us that we couldn't have him longer than a two-day period because of medications. And he had to be watched, you know, seven days a week, 24 hours a day. And as I said, I was in school and my mother was working to support us.

It was the time of the end of the Vietnam War. He was in a psychiatric unit. Many of the patients that were there with him were young Vietnam veterans who had come back with a severe mental illness from that war, and also physically very strong individuals. And there'd be times where, you know, he'd come out -- I'd pick him up and he'd have a black eye or, you know, bruises.

And you know, I'd know he got into a -- you know, the nurses would explain that there was a fight. You know, he -- my father always had to have a watch on and a little money in his pocket, so actually for a while I think my parents -- my family supported Timex because we'd buy so many Timexes so that each time we'd go there, he'd have a watch on his arm; and give him a couple of bucks in his pocket so that he could go to the canteen where he could buy candy and things.

And he had a lot of freedom there because they really didn't understand the disease; so much freedom that one time he did escape the VA hospital; actually got off the grounds. And some woman who ran into a deli to get, I don't know, a pack of cigarettes, a quart of milk or whatever, left her car running outside. And my father got in the car and drove off.

And fortunately, he was driving erratically and the police pulled him over. And he almost, you know, got away with it. He was almost convincing until the police recognized his hospital band. But more frightening was that there was a child in the backseat of that car, and to this day, that is just, you know, the thought of what could have happened is so frightening.

And I know it's going on with people today, with people with Alzheimer's disease who still remember how to drive, but don't realize that they have lost a lot of their skills at driving, and will get behind the wheel of a car and drive off.

GROSS: When did you realize that there was a genetic component to Alzheimer's disease and the fact that your father had Alzheimer's meant that you might be more likely than the average person to get it yourself?

WALSH: Well, I would have to believe that, for a long period of time before it became news to the rest of the world, I had a feeling that Alzheimer's disease was genetic, simply because of the stories that would be told. My mother would describe bathing my father's mother. Now, you know, and you'd say: what did she die of? Oh, natural causes. You know, but why would someone have to bathe her, you know, or dress her or feed her?

So, I knew that there was a possibility that my paternal grandmother had Alzheimer's even though nothing was described. And then as my father's disease progressed, three of his sisters came down with the same symptoms, although, you know, one was described as senile and one was described as "she had gone crazy" and the other -- the symptoms were all there; very, very clearly the same type of disease.

And so, I felt that I knew that there was something going on in my -- in my father's side of the family. And then I knew that my maternal grandmother, who lived with us at -- around -- when I was around age five, you know, they used to say she was senile. And she lived with us until about -- I was about 10. And she was very different from my father.

She was, you know, much older. She was in her late 70s, early 80s, and she was very happy and contented; you know, sweep the house and you know, pat my little heinie as I went by as a little child. And you know, she was a very calm and unaggressive "senile patient," as they called her.

Where my father, you know, at age 58 when this disease first started to take its toll on him, was physically strong, active, and a very independent person. And he wanted to be out. So, you know, it was two different versions of the disease, but it was both the same disease.

GROSS: My guest is Janet Walsh, president of the Long Island Alzheimer's Foundation. We'll talk more after a break.

This is FRESH AIR.

My guest is Janet Walsh. She is the president of the Long Island Alzheimer's Foundation.

Well, a lot more is known about Alzheimer's now than it was when your father first was diagnosed. What does the genetic test measure for now? What does the genetic test let people know?

WALSH: Well right now, they have clearly identified four genes associated with Alzheimer's disease. Three of those genes are mutations, which means if you have those mutated genes, you are going to get Alzheimer's disease. It's so rare. It's less than 1 percent of the world have this gene. It's really very, very rare. I think they've identified something like 150 families in the world that have these mutated genes.

The fourth gene which is APO-E (ph) gene, is a risk factor for Alzheimer's disease. It's not a guarantee. And that represents about 2 percent of the world of Alzheimer's disease. And that is the test that I chose to go for, which was the risk factor.

GROSS: So by taking this test, you would find how at-risk you were; what the odds were that you were actually going to get it?

WALSH: Right. And there were different levels, and there was also the opportunity to have a protective factor. So, while I was pretty sure going into this whole process that I was going to have the Alzheimer's gene from my father's family; my mother's family, while my maternal grandmother I knew had Alzheimer's disease, none of the nine children had Alzheimer's disease. And so, I was hoping that somehow a protective factor was passed down through my mother's side so that I could have a wash-out, basically.

GROSS: Not many people to my knowledge have had this test, and you certainly didn't have to have it. You chose to have it. Why did you want to have it? I mean, were you hoping to be reassured that you'd be not as at-risk as you feared you were? Was that what you wanted? Reassurance?

WALSH: Well, there were several reasons, but just to clarify one thing: a lot of people have had this test because originally this gene was discovered for heart disease. And so, there are a lot of people out there -- in fact, that was a dilemma when they realized it also is a predictor for possible Alzheimer's disease. What do you do? Do you go back and tell thousands of people that were tested for heart problems that they also have a possible chance of getting Alzheimer's disease?

So there's a lot of people in the world that have been tested for this, but just don't have -- that weren't told about the Alzheimer's side of it because it wasn't known at that time.

GROSS: Mm-hmm.

WALSH: For me, one of the reasons, I'm just curious as a cat. I am a frustrated scientist; never got through what I wanted to do in college and become one. So, I was very interested in that aspect.

Number two, as my role -- my role as president and founder of the Long Island Alzheimer's Foundation, I was hearing from a lot of families who were concerned about the genetic process. So, I felt if I went through the whole process, I could clearly make good suggestions and good -- help people walk through the process.

So that was -- part of it was professional; part of it was curiosity. And the third part is, I'm someone who really likes to be in control of my life, and if it was that I did carry the Alzheimer's gene, I wanted to be able to make decisions, while I was in my full capacity, that could be carried out when I wasn't able to make those decisions.

GROSS: What kind of counseling and screening did you have before-hand?

WALSH: Well, it was part of a National Institute of Health research protocol at New York Hospital. And at the first meeting, we had a -- it was a large group of people and some slides were shown, and the doctor -- the researcher explained the whole process and why you would go through this process, and what they were trying to achieve with the study.

And then I met with a neuro-psychologist. I had met -- a lot of testing done. They wanted to clearly make sure that number one, I wasn't in the stage of dementia already; and number two that I wasn't suffering from any form of depression, which this information might really be devastating to me.

So I went through quite a bit of counseling and it's interesting -- when I went -- finally met with the researcher to go over my family history, which is an important aspect of it, he said: "well, who in your family, you know, has had Alzheimer's disease?" And I went into my pocketbook and ripped out one of these long family histories, and I said: that one, that one, that one, that one. I think that one.

And he was very impressed. He said I think you're a good candidate. And that's how it went forward.

GROSS: Janet Walsh is my guest. Her father had Alzheimer's disease. She was genetically tested for it. And she's also the co-founder and president of Long Island Alzheimer's Foundation.

What did you tell yourself your reaction was going to be if you got the worst results? If you found out that you were very likely to get Alzheimer's disease?

WALSH: Well, I'll be honest with you. With all the counseling and all the prep work, I never really focused on the final outcome. For some reason, I've been such a lucky person all my life, and I felt that I had worked so hard in the field of Alzheimer's that, you know, I'd get lucky. And somehow either have the gene from my dad, but have a protective factor from my mom; or, maybe it just passed and skipped me.

So when it -- the information did come to me, I was devastated -- devastated to hear that, not only did I get the gene from my dad, but I got the gene from my mom also. What even, you know, made that situation even worse was I -- for some reason, and I don't know if it was told to me during the counseling sessions or I just didn't -- I blocked it out. I didn't listen, was number one I didn't listen to the fact that it also put me at risk for sudden heart attack, because this gene was originally discovered with heart disease. And number two, that I automatically pass this gene down to my children.

So those were two things that just totally blew my mind, and I wasn't prepared for -- and I'd say for a good month, I was very, very down and upset about it, until one day I just woke up and I said: hello -- this is just a risk factor; even if you do get Alzheimer's disease as young as your dad, I still had at least, you know, 17 more years, 18 more years at that point. I feel that we're at the most hopeful period in my lifetime in the world of research with Alzheimer's disease and what's being discovered every day.

So I said: knock it off. Stop feeling sorry for yourself and let's get out there and get rid of this thing.

GROSS: So what is your risk factor now?

WALSH: I carry a 15-times greater chance of getting Alzheimer's disease than the average person, which comes out to almost a 90 percent chance of me getting Alzheimer's disease sometime after 65.

GROSS: OK. So...

WALSH: Not very good.

LAUGHTER

GROSS: Well, the percentage I read -- tell me if this is right -- that you have a 50 to 90 percent chance of getting Alzheimer's disease by the age of 85.

WALSH: Yes. Alzheimer's disease tends to be more prominent as people age. If you look at the general population, you're looking at approximately 10 percent of the people over 65. But if you're looking at people at 75, you're looking about 17 to 18 percent.

And when you go to 85, you're looking about 48 percent. So close to 50 percent of people over 85 have an Alzheimer's-type dementia. And that's really the population that's growing the most in this country is the 85 and over population.

GROSS: Right. So the 50 to 90 percent chance of getting it by the age of 85 -- that doesn't sound that extreme. Do you know what I mean? Since like we should be so lucky to live to 85 in the first place.

WALSH: I'll take 85 right now.

LAUGHTER

You know.

GROSS: So, how did you tell your children the results of your test?

WALSH: Well, when I came home from the hospital that day, I -- my daughter was -- had a friend over. And when I walked in, I decided that this wasn't the right time and she came out of her room and greeted me and she said: so what were the results? And I said oh, you know, we'll wait -- and she followed me into my bedroom. She said: I need to know now.

And I told her and explained the fact that it was only a risk factor and et cetera; that I wasn't happy. It wasn't the results I wanted and we had a long chat about it. And my son never asked. We -- you know, I asked him if he'd like to talk about it. He said no. And he said it doesn't matter; he wouldn't believe them if it was true, and if it was false, then he'd believe it.

So he really took an attitude of "I don't want to hear it." And didn't even watch the PBS special when it was on the air, and that's basically the way he's handled it.

GROSS: What do you make of that reaction?

WALSH: You know, it's hard for boys. Still to this day, he has a heart of gold. He's very sensitive and you know, at this age they're still very attached to their mom and he doesn't want to think about anything that could ever possibly go wrong with me.

And you know, he -- that's how he deals with things. He just pushes it off and, you know, believe me -- you know, he -- in no way, shape or form, went in and cleaned up his room or did anything, you know, that would indicate that he was nervous about what was going to happen to me.

He's just gone through life like it's -- it doesn't even exist.

GROSS: Janet Walsh is president of the Long Island Alzheimer's Foundation. She'll be back in the second half of the show.

I'm Terry Gross and this is FRESH AIR.

This is FRESH AIR. I'm Terry Gross.

Back with Janet Walsh. After caring for her father who had Alzheimer's disease, she co-founded the Long Island Alzheimer's Foundation. Recently, she participated in a research study that enabled her to take a genetic test to see if she was genetically predisposed to get the disease. She found she's at high risk. I asked her what she's gained from taking the test now that she's had a chance to process the results.

WALSH: Well, my father finally passed away in 1981. I did not get an autopsy on my dad. I did not have autopsies done -- the family did not, on my aunts that had Alzheimer's disease. So, this confirmed it was Alzheimer's. OK, so that was very important to me because as you -- I -- it's a disease where every single person is unique. It's very rarely that I find two Alzheimer's patients react to this disease the same way.

So, this confirmed number one that I'm -- you know, I'm -- the work I've done for the past 15 years on Alzheimer's was for the right disease. Number two, it allowed me to be more vocal about how people should learn to live with the disease and long-term planning is so important.

And how, as we diagnose earlier and earlier, you really could have a great life. You don't have to live like we lived with my father, which was locking him in, trying to keep him safe, trying to keep the world away from him.

We've realized now that that's the direct opposite thing to do. So I feel very good about that. I immediately got involved with three research projects at NYU. I had a spinal tap taken. I had an MRI done and a PET (ph) scan -- all of which are baseline for me and they'll -- I'll do it again, in fact I'm up probably to do it again shortly, to check the different parts of my brain and my spinal fluid to see if there are any signs of Alzheimer's disease now.

So, I did get a clear bill of health a year and a half ago, and so that's exciting. So I know that I have at least -- at least another 10 to 20 years to work on this, and I think that's -- might be enough.

GROSS: You know, one way of looking at this would say: well, what do you have now that you didn't have before the test? You still have uncertainty...

WALSH: Right.

GROSS: ... 'cause you have the odds, but you don't know any outcomes for sure. But you have more fear than you did before, 'cause now you're more certain that you're likely to get it than you were before.

WALSH: Oh, I don't think I have more fear. I always knew that for some reason or another, I was going to get Alzheimer's disease. I always felt that. So this just confirmed it for me, in that sense, that I have a greater risk for it. And you know, as a New York City kid, you know, we grow up fighting, you know, for whatever we need and I just feel that I'm going to fight this thing to the very end.

And I've already started on my memory cocktail to push off and prevent it, so I feel very comfortable about that.

GROSS: Wait -- wait -- what's the memory cocktail?

WALSH: Well memory cocktail is just a cliche that's been coming out. It's just a matter of what's going to work to prevent Alzheimer's disease for each individual. So a memory cocktail might be different for you than me. I know for a fact that I have spoken to my gynecologist and when I do begin menopause, I will immediately start hormone replacement therapy, which has shown estrogen can deter Alzheimer's disease.

In addition to that, I started taking my anti-oxidants, my vitamin E, my vitamin C, which -- and anything I say on here, please, everybody has to speak to their physician about any of these things. Even a natural product can affect medications or your lifestyle.

But so I take my anti-oxidants, my vitamins. And I am waiting now -- there was a study on anti-inflammatories, which was very promising. They did a study on twins, and they found why did one twin get Alzheimer's and other twin didn't. What they found was the twin that didn't, you know, generally had a disease such as arthritis that was -- needed anti-inflammatories and they had been taking those for many years.

Unfortunately, my stomach cannot tolerate any of the over-the-counter anti-inflammatories that are out there right now such as, you know, Advil and Motrin et cetera. But there is hope and there is research being done right now on a designer anti-inflammatory, which will give me all the benefits of an anti-inflammatory, but none of the gastrointestinal problems or kidney problems.

So my memory cocktail isn't complete just yet, but it's information and it's started, and I feel very comfortable, by doing all of these steps, and some new ones that are coming out along the way, and there are some far-out ones that I'm not even going to mention because there's no proof that any of them are accurate or real. I believe that I can possibly take my probability of Alzheimer's after 65 and maybe push it off 'til 85 or 90, which would be wonderful for me.

GROSS: You come into contact with a lot of people who have Alzheimer's in the family, as president of the Long Island Alzheimer's Foundation. People must ask you all the time whether you recommend that they should get the genetic testing. What do you say?

WALSH: I've seen some families where they could fall into that category, and it's very rare, of being part of that 150 -- those very, very rare mutated genes where you almost -- you're -- if you have this gene, you're guaranteed to get Alzheimer's disease. I have long conversations with those people and you know, we basically come up to a conclusion of yes or no. And that's really a private matter with them.

The general public -- absolutely not. There is no reason -- you've got to realize, the gene that I carry represents only two percent of Alzheimer's and the other mutated genes represent less than one percent. So 98 percent of Alzheimer's disease is still unknown why it happens. So if you have a primary -- you know, a parent or a grandparent that had Alzheimer's disease, that's no reason to get tested.

For me, having five relatives in my immediate family with Alzheimer's disease, made me a good candidate. But even so, it's still a risk factor. There's no guarantee and quite frankly no, I really do not counsel families because knowing as much as I did walking in for that test, and when I got that information and the floor came out from under me, I would say that the average person, it would be very hard for them to handle.

GROSS: You saw your father go through Alzheimer's in the '70s. The medical profession was treating it very different then than it is now. It was a horrible experience for your family. You're now planning for the possibility of having it yourself. What kind of plans are you making? What kind of documents are you drawing up or talks that you're having with your family?

WALSH: Well, I not only included my family, but I've also included my attorney. I have, you know, my husband and I have revisited our wills; revisited our health care proxies; living wills; very defined information in that.

In addition to that, I have released the burden from my family in determining when I can't handle my affairs any longer by allowing them the choice of three to four people who are in the field to help make that determination.

So in addition to that, you know, I have made some very personal choices on how long I want to live in a different state. I know that right now, my opinion on living with Alzheimer's disease is totally different than my opinion was 10 years ago.

Ten years ago, if I had a diagnosis of Alzheimer's disease, I probably would have said I wanted to end my life immediately. Ten years later, working with a lot of the programs that we run, number one, people in the early stage of Alzheimer's disease still are having a great time. I mean, OK, they can't remember what they had for breakfast maybe, but they love to watch old movies; love their grandchildren; love to take walks; play tennis; go to Broadway shows; be active; still tinker around in the basement, you know, carving wood things.

You know, there's still a lot of living to do. And with new chemicals that are out -- coming out, chemical compounds, we're able to stabilize them longer in the earlier stages of the disease. In addition to this memory cocktail we spoke about, we're able to keep them at a much higher cognitive level, and living more independently for a much longer time.

And really for me, I've made the determination for me, when I can no longer eat solid food -- is a very important aspect of my life -- and when I can no longer toilet myself and bathe myself and do those types of things, that's when I really don't want to live any longer, and that's when I'd really like to make the determination. The problem is, it's too late in the disease to be able to take care of that.

So that's my dilemma right now, is how I work out so that if I do get Alzheimer's disease, after all my preventive measures, and I can live for a very long time in the early stage and then the early-moderate stage, how do I prevent myself my really dealing with the final stage? And I'm a chicken. You know, that's really what it comes down to. I don't want to live like that.

Too often, I hear families struggling, giving up everything, because mom or dad said to them "never put me in a nursing home; never, you know, ever let anybody take care of me; you have to take care of me." These burdens that are being placed on this generation, and I'm talking about this generation being as much as -- I have 70-year-olds taking care of 90-year-olds -- it's very tough. And I don't want my children -- I want my children to be enjoying their children and enjoying their lives.

And when I've lived my life, I've lived it.

GROSS: So are you planning for some kind of assisted suicide?

WALSH: Well, I certainly am a proponent -- only me personally, not the Long Island Alzheimer's Foundation -- that there should be physician-assisted suicide in certain cases. And I think people should have the ability. I don't want to have the cost to society and government and my family of hundreds and hundreds of thousands of dollars for me to remain in a situation where I need round-the-clock care and there's no chance of any reversal. And that's my personal decision. And I am still figuring out how I -- how I take care of that decision.

I certainly know that it's a dilemma for me right now.

GROSS: My guest is Janet Walsh, president of the Long Island Alzheimer's Foundation. We'll talk more after a break.

This is FRESH AIR.

Janet Walsh is my guest. She's the co-founder and president of the Long Island Alzheimer's Foundation. Her father had Alzheimer's disease. She got the genetic test for it and found that she does carry the genetic code for Alzheimer's disease.

Has finding out that you have the genetic code for Alzheimer's affected your health insurance?

WALSH: No.

GROSS: Do they know? I mean, you're public about this. You speak about this.

WALSH: Yes.

GROSS: You were in a documentary about it. It's not like it's a big secret.

WALSH: Mm-hmm. Right.

GROSS: But do they officially know? Have they asked?

WALSH: No, they haven't asked. Actually, insurance companies ask all the time because they're going to ask you: What did you parents die from? And I've always been very honest in immediately saying, you know, my mother died of cancer and my father died of Alzheimer's disease. So that has been in my record since, you know, day one. Any physician office I walk into, I fill that out.

But no, there's never been a question of "have you been genetically tested." And it's my understanding that a law was passed -- actually, it's -- I know at least 26 states have a law that you cannot be discriminated against because of your genetic makeup, by insurance companies or employment. And I know New York is one of those states.

GROSS: You're in your 40s, and I think it's so common for people in their 40s to start becoming a little more forgetful; to have a little more trouble remembering names or titles or where they put the keys.

When you get one of those forgetful moments, do you worry that this is the sign of Alzheimer's?

WALSH: No, I worry more that I'm overworked. It really isn't -- you know, the difference that -- when we talk about memory loss and Alzheimer's disease, it's really just -- it's not -- I lose my keys once a week. I go into another room in the house, and I forget why I went into that room. That happens all the time. That's call preoccupation, you know, with phones, faxes, computers, kids and our lives today we're very, very busy.

That is not Alzheimer's disease. Alzheimer's disease is, you know, clearly, you know, losing that piece of information. You know, when -- from the first signs are, you know, not remembering how to get somewhere; you know, getting lost; forgetting that you made a phone call or had a conversation. It's really -- it's not the losing of the keys or the forgetting an appointment. I mean, we all do that.

It's clearly losing that whole bit of information.

GROSS: As the population of older people grows, and it's going to keep growing as the baby boomers get old, are there any policy issues regarding Alzheimer's disease that you think we ought to be dealing with?

WALSH: Some of the things I'd like to see happen is I'd like better education for physicians to recognize the disease. It's still too often misdiagnosed, and then it waits too long for us to help them, you know, keep them in a higher cognitive level. So I'd certainly like to see the hospital and medical curriculums include a lot more about Alzheimer's disease, so first of all physicians are more aware of what's going on.

In addition to that, I -- I really feel that people should take responsibility about these type of diseases much earlier-on. And that's one of the dilemmas we have with Alzheimer's disease. We don't want it classified as a disability. We don't want it classified as a mental illness. It is a disease, just as heart disease, diabetes, et cetera.

Right now, there's very little support in the way of financial or government support for someone with Alzheimer's disease, unless you get broke and get on Medicaid. And that's really not the answer. So I really would like a, you know, in the perfect world, I'd like to see people plan for their long-term care; become aware of the fact that, you know, retiring on a beach somewhere is really not optimum. You really have to keep that mind going. It's important to stay active. It's important to educate yourself.

I just read in the newspaper of a woman in her 80s that got her high school diploma. I think that's great. We have to open up opportunities for our senior citizens to continue working; continue being active. I mean, not at the same pace as, you know, those of us in middle age, but certainly keeping active. And I think that that should be a policy. We had this policy for a long time: you work a certain amount of years and then you retire and you play golf all day.

Well, it's not going to work that way. We really have to keep active.

GROSS: Do you end up counseling people who are dealing with a lot of guilt because they have a parent or a spouse who has Alzheimer's disease and they've placed that parent or spouse in a full-time institutional setting because they were just unable to cope with caring for them any longer -- but they feel terrible about the decision anyways?

WALSH: I deal with that all the time. You know, I applaud anybody that recognizes what they can and can't do. There are so many people who will try to do all the caregiving themselves, and what happens is not only does the person with the disease get -- not get the quality of care they deserve, but the person -- the caregiver loses their own health.

And that's the situation we're not recognizing. In most cases, the primary caregiver of someone with a long-term illness such as Alzheimer's disease ends up with a stroke, heart attack, pneumonia. So they forget to take care of themselves because they're caregiving for seven days a week, you know, 24 hours a day.

Anyone who recognizes, you know, that they are incapable of being -- we're all not caregivers. You know, there are caregivers and there are, you know, people that, you know, want to go out and work and pay for caregiving. And I think we have to recognize who we are in that group. And at 19 years of age, I should not have been bathing my father. I should not have been spending my weekends watching him. But we had no choice. It was -- we had no place to take him or be with him, or we had no answers and no support.

I think everybody has to take a good, clear look at how they are, and anybody that has aging parents and hasn't thought this process out already: shame on you. You have to think about this. You have to think about it and talk to them -- ask them how they want to be treated; what they want done; what they feel; how they feel.

And one of the key issues that we're dealing with, at least on Long Island, that I talk to people a lot about is, you know, you have someone who's 85 years old living alone in their big house. And that's the worst thing. They're not stimulated. They don't have any social activities.

So, the idea of living forever in your own home, even though that concept works great when you're physically well and don't have the fear of falling and breaking your hip or not being able to get out fast enough in case of a fire or an emergency -- you have to take responsibility and let your family know what you'd like done, but be reasonable. Don't say to your family: never, ever put me in a facility; never ever let me leave my home.

You know, it just doesn't work.

GROSS: Janet Walsh, thank you very much.

WALSH: Thank you.

GROSS: Janet Walsh is president of the Long Island Alzheimer's Foundation.

This is a rush transcript. This copy may not
be in its final form and may be updated.

Dateline: Terry Gross, Philadelphia
Guest: Janet Walsh
High: President and co-founder of The Long Island Alzheimer's Foundation, Janet Walsh. As a teenager, she watched her father suffer with Alzheimer's. Later, when genetic testing became available for Alzheimer's, she took it and discovered that she is at the highest risk for genetic predisposition to Alzheimer's. Walsh will talk about how she chooses to conduct her life with this knowledge, and her efforts to make the lives of Alzheimer's patients better.
Spec: Health and Medicine; Alzheimer's; Family; Genetics
Please note, this is not the final feed of record
Copy: Content and programming copyright 1998 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1998 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Coping with the Alzheimer's Gene
Show: FRESH AIR
Date: JULY 14, 1998
Time: 12:00
Tran: 071401np.217
Type: FEATURE
Head: Florence Harding
Sect: News; Domestic
Time: 12:55

TERRY GROSS, HOST: The name Florence Harding doesn't usually leap to mind as one of the 20th century's most popular first ladies. Yet in 1922, when Mrs. Harding's kidneys failed and she lay near death, Saturday matinees at theaters across the country were interrupted by prayer sessions for her recovery, and thousands of people jammed onto the grounds of the White House to hold a vigil for her.

Florence Harding miraculously bounded back from that attack of kidney failure and through the efforts of biographer Carl Sferrazza Anthony, she's now bounding back from obscurity.

Book Critic Maureen Corrigan has a review of the new biography "Florence Harding."

MAUREEN CORRIGAN, FRESH AIR COMMENTATOR: According to the old saw, behind every great man stands a great woman. But what happens when a great or more precisely, an exceptional woman, stands behind a loser. Well, if history's treatment of First Lady Florence Harding is anything to generalize from, the woman, no matter how dazzling her attributes, will be blotted out by the dim, gray mediocrity of a man teetering in front of her.

Warren G. Harding's only claim to distinction is that most historians would probably rank him as the worst president this country ever had. An inept chief executive whose administration was riddled with corruption, the sickly Harding devoted much of his limited energy to guzzling bootlegged booze and seducing any maiden who wandered onto his radar screen.

"It is a good thing I am not a woman," President Harding once joked to reporters. "I would always be pregnant. I cannot say no."

Ah, the good old boy days. Even back then, however, the accumulated weight of Harding's offenses would surely have crushed him had he not conveniently died in office in 1923. When Florence married Warren back in 1891, she thought she was hitching her wagon to a star. Instead, she shackled herself to a quick-burning bit of space debris.

But in his new biography called Florence Harding, Carl Sferrazza Anthony has leapt to the rescue, blow-torch in hand, ready to set Florence free from the embarrassing Warren and reintroduce her to readers as an icon of the first modern, proto-feminist first lady.

She certainly was an unusual woman for her time. Florence's father, a well-to-do businessman, raised his first-born child to be the boy he wanted. Growing up in Marion, Ohio during the 1860s and '70s, she rode horses, clerked in her father's hardware store, and received a classical education.

She also received a crash-course in the facts of life when she became pregnant at the age of 20 by a neighbor, Henry DeWolfe (ph). Florence and Henry lived together for a couple of years in a common-law marriage. When he deserted her, she supported herself and her son by giving music lessons. Eventually, Florence's own father informally adopted the boy, leaving her free to chase down an already-engaged younger man, Warren G. Harding.

Incredibly, the American public never knew of First Lady Florence's early fall into sin. The existence of her son, and by then her grandchildren, was a well-kept secret. Anthony describes how the Harding's marriage from its earliest days defied convention.

When Warren suffered a couple of nervous breakdowns and checked into Dr. Kellogg's famous Battle Creek Sanitarium, Florence took over as the business manager of the newspaper he owned. She never wore a wedding ring, declaring: "I don't like badges."

By many accounts, Florence was the engine that propelled a wishy-washy Warren into politics. And once she became first lady, she busied herself with veterans affairs, animal rights, and suffragist causes. According to biographer Anthony, Florence also pioneered the use of Hollywood stars as campaign tools, and like Nancy Reagan, relied on astrologers to chart her and Warren's actions.

In his effort to rescue Florence Harding from the ashes, Anthony unearths a wealth of jazzy anecdotes that make his comprehensive biography as lively as a night at one of Warren's stag parties. Granted, sometimes Anthony strains himself, claiming too much for Florence. Her nice practice of shaking hands with black kitchen help doesn't exactly put her in the same class as Eleanor Roosevelt when it comes to civil rights activism.

But as Anthony convincingly demonstrates, if Florence was no Eleanor, neither was she just a distaff Warren Harding. When I closed this biography, I heard the same phrase echoing in my head that I always hear when I meet certain couples: what is an interesting woman like that doing with a dud like him?

GROSS: Maureen Corrigan teaches literature at Georgetown University. She reviewed a new biography of Florence Harding by Carl Sferrazza Anthony.

This is a rush transcript. This copy may not
be in its final form and may be updated.

Dateline: Maureen Corrigan; Terry Gross, Philadelphia
Guest:
High: Book critic Maureen Corrigan reviews "Florence Harding" the new biography of First Lady Florence Harding by Carl Sferrazza Anthony.
Spec: History; Warren G. Harding; Scandals; Adultery; Florence Harding
Please note, this is not the final feed of record
Copy: Content and programming copyright 1998 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1998 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Florence Harding
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.