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with Jeffery Lyons
 
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LOU-ELLEN BARKAN: Jeffrey, we are so pleased to have you with us today. What led to your interest in our work?

JEFFREY LYONS: When my Dad became ill, he suddenly aged five years. He started dragging his foot and had behaviors we had never seen before.

LEB: What was the diagnosis you received at the time?

JL: They said he had a form of dementia.They may have said Alzheimer’s, but they said it was part of the aging process. He suddenly became an old man.

 

LEB: When you say suddenly, over what period of time did this take place?

JL: At first, he just began to slow down and then, in 1974, after he began to slow down, he finished forty years of writing his column, “The Lyons Den,” to the very day. Two years later he died. He was only seventy.

LEB: Do you remember when it all started?

JL: It started just after he and my mother returned from a trip to Africa. Who knows? Maybe he picked up a bug there.We don’t know enough about this to say that it wasn’t that. But all the symptoms kicked in and it progressed over a three to five year period.

LEB: Once you understood that he was declining, were there resources that helped you?

JL: He got heroic care from my mother and eventually went to Peter Bent Brigham. That was thirty years ago — a different time.

LEB: Jeffrey, the story you’re telling is very familiar. There may be better diagnostics today, but there is still no treatment that stops the progression and no cure. A lot of families are facing exactly the same situation.

JL: But today, people don’t try to hush it up the way they did back then.

LEB: There was definitely a change in public acceptance after President Reagan died.

JL: The first person was Rita Hayworth. Her daughter, Princess Yasmin, brought the disease into the public eye. She courageously took care of her mother, just like my mother did for my father. But my mother tried to keep it quiet.

I don’t know whether it’s true or not, but I have been told that the odds are 50 percent that the children of an Alzheimer’s patient will have the disease. In our family there were four boys. Does that mean that two of us will become ill or that I have a 50/50 chance?

LEB: It’s unclear. We’re still learning a lot about the role of genetics in Alzheimer’s disease. Did your father live at home the whole time, or was he placed in a nursing home?

JL: Oh, no — we kept him at home.

LEB: How did you make that decision?

JL: My mother — she would not have it. Not that there isn’t good work done at these institutions, but my mother never wanted that.

LEB: Did she also have help at home?

JL: Yes. And that was helpful to a point.

LEB: So I guess the four boys pitched in.

JL: By that time we were all adults, and I was helping my dad with his column. The column was very important to him. You know,my father was the most beloved Broadway columnist of his era. Carl Sanburg said if you had written “The Lyon’s Den” during Lincoln’s time, history would’ve known what really went on in New York. He was given the highest honor by Mayor Lindsay at City Hall. In fact, my parents dined with President Truman in the White House on Truman’s last night in office and he appointed my father, who was a lawyer, as a federal judge and my mother as Ambassador to Mexico. And they resigned at dessert! He spent Shaw’s 90th birthday with Shaw. And he broke the story when Mary Hemmingway found the body. My father was not a New York columnist — he was THE New York columnist!

LEB: I would certainly agree.

JL: My father never printed a nasty word about anybody. He had 700 people at his funeral. Now I’m just a son protecting his father’s legacy. I hope for all of us that 30 years after we’re dead that if our name is besmirched or demeaned in any way, albeit unintentionally, our children will come to our defense. You know,my father never used the word “celebrity” in forty years. He was a journalist, who would have written about his sister Rosie in Brooklyn, if Rosie did something newsworthy.

LEB: Agreed. Let’s call him a public figure. When public figures do not disclose that they have the disease themselves, or that they have a relative with the disease, it is counterproductive for all of us.

JL: But these days, everyday the stigma gets less.

LEB: The other story that’s been helpful for us is the “Baby Boomer Story.” With so many people aging at once, we predict that in less than 50 years, one out of every five New Yorkers will either have this disease or be taking care of someone who does. If we don’t make meaningful progress on the search for treatments, a cure and more accurate diagnostics, New York City and the country are going to have a serious problem. Wherever I go, whether I’m in Bloomingdale’s buying a dress, riding in a cab or talking with a friend over lunch, everyone seems to know someone with Alzheimer’s disease — a relative, a friend, a neighbor, a colleague... And the question is, do you hear stories like that, too?

JL: Yes. I do hear these kinds of stories, but you tend to hear more if you are attuned to the issue. So you may hear more because you do the work.

LEB: An important part of our work is building public awareness —making people comfortable talking about Alzheimer’s and dementia. We talk to a lot of people in the entertainment industry, about all the films and television shows that have Alzheimer’s written into the story line. This is very helpful for us.

JL: My friend Robert Wuhl had an episode of “Arli$$,” his HBO series, and Ed Asner played a sportscaster with dementia.

LEB: Exactly. I actually remember that show. We are hoping that there’ll be more of these scripts because the popular media and the performing arts really help us get the word out to all New Yorkers.

JL: I’m hoping stem cell research will also make a difference.

LEB: Stem cell research holds much promise for many diseases, but it may not have any immediate prospects to help people with Alzheimer’s disease. But I am confident that with all the terrific work that is currently being done, we are making progress.

JL: Something tells me that if we make progress year-byyear, 10-15 years from now we will be able to stop the progression of the disease if it’s caught early enough. And I’ve heard that we have a better understanding of the early warning signs.

LEB: One reason we’re trying to build public awareness about this is so that people will come for help as early as possible. The most important thing is for people to recognize symptoms that affect the way they think and behave and come to us quickly for support.

JL: And what are the symptoms?

LEB: The most obvious is a change in familiar behavior — and the person most likely to notice is usually a family member or a colleague at work. One example might be that I always make coffee in the morning, but my husband notices that recently it seems to be taking me much longer and I am making mistakes. I might forget to grind the beans or turn on the pot. Maybe I go out on a very hot day wearing an overcoat or I can no longer balance my checkbook. These examples are very different from forgetting where I left my glasses or forgetting the name of someone I was just introduced to.

JL: Well, let me tell you, I almost never miss “Jeopardy!” I call it my anti-Alzheimer’s show. It’s exercise for your brain.

LEB: There are a tremendous number of theories about brain exercise and about eating the “right” foods, but there is very little hard scientific evidence — although I think we all know that it is better to eat blueberries than whipped cream. However, we do encourage these studies. In fact, we encourage scientists to work in more diverse streams of research. And scientists in every context — at the NIH, in large pharmaceuticals and in small biotechs — are motivated by the terrific economic opportunity for their organization and for themselves if they find the cure.

The nice thing about the Alzheimer’s community is that people who go through this with their families are so helpful and so generous with their time. Each year in the fall we have a “Memory Walk” and invite the community to join us. Next year, Jeffrey, I hope to see you there. So on a closing note I thank you for taking the time to talk with us today.

JL: My pleasure.


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