[ad_1]
It's a story about the most cruel disease you've ever heard of. This is what is called frontotemporal dementia, or FTD. And given the devastating number of victims and their families, it should be much better known than it is.
The FTD is the most common form of dementia in Americans under 60 years old. Its causes are unclear, but it attacks the frontal and temporal lobes of the brain, which control personality and speech, and is always fatal. This is not the Alzheimer's disease, which degrades the part of the brain responsible for memory.
With FTD, people display such bizarre behavior that their loved ones can hardly recognize them or lose the ability to recognize themselves. As we had announced for the first time in May, this is what happened to Tracey Lind a few years ago when she was in a public restroom.
Tracey Lind: I washed my hands and looked at myself in the mirror and did not recognize my own face.
Bill Whitaker: You did not recognize yourself.
Tracey Lind: No. I looked in the mirror and kept looking, and I remember that I kept looking at this woman who was wondering "who was she?"
Here's what she was: the very reverend Tracey Lind, Dean of the Episcopal Cathedral of Cleveland, Ohio, one of the city's most prominent preachers and civil society leaders. She was 61 when she and her wife, Emily Ingalls, started noticing problems with things Tracey had always done very well. like finding the right word, recognizing the faces of the faithful and friends, and of course his own.
Tracey Lind: It was at that time that I said, "Oh, man, I have to go see a doctor."
Bill Whitaker: When that happened, were you – were you scared?
Tracey Lind: Oh, I was scared to die.
Bill Whitaker: Emily, what did you think was happening?
Emily Ingalls: I thought something was wrong with his brain.
On polling day 2016, Tracey Lind was diagnosed with frontotemporal dementia. It has what is called the "speech variant" of the disease, which attacks, among other things, the part of the brain where the language lives.
Tracey Lind: Sometimes you just … you're fine. And then there are other times when the words do not come out. I mean, even if I know the word, sometimes I sometimes feel like playing bingo. And when I find the word, it is – I – I shout it. I feel like a fool. You know. Apple. Oh yes! Apple. That's it. And I'm excited.
This is extremely painful for Tracey because her ability to speak effectively and efficiently has always been at the heart of her identity.
Bill Whitaker: One of the first things you did once you got this diagnosis was to resign from your position as Dean at Trinity …
Tracey Lind: Okay.
Bill Whitaker: – Cathedral. Why … why … why did you take this step so quickly?
Tracey Lind: Basically, I knew that I was starting to fail, even though I was pretending very well.
Since their departure, Tracey and Emily have traveled the country and the world, speaking and preaching about her FTD. Or as Tracey says, "telling the story of the insanity from the inside to the outside."
Tracey Lind in pulpit: I was determined to live what I preached for over 30 years. that pain comes joy.
Tracey Lind: I'm going to deal with this disease called FTD that I've never heard of before, and I'll see what I can do with it.
Bill Whitaker: I do not know if you know how unique this is because you are at the heart of this decline in dementia and yet you are so able to say what it is.
Tracey Lind: I'm aware of that. I think my curiosity is what makes me go through. Because otherwise, Bill, I … I … I … I'll go to bed and – and – and – and roll myself into a ball.
Tracey says that she has good and bad days. Just in our interview, there were times when she was completely in control and moments when she was not there.
Tracey Lind: … and I do some … you know, I … I … I … I … I know that there is no .. .
Emily Ingalls: Do you want help?
Tracey Lind: Can you help, please?
Emily Ingalls: Agreement.
Dr. Bruce Miller: That's how this very sad disease presents itself.
Dr. Bruce Miller is perhaps the world's leading expert in frontotemporal dementia. He directs a laboratory at the University of California at San Francisco that conducts cutting-edge research on the two main forms of FTD – Tracey Lind's speech variant and a behavioral variant that attacks personality, judgment, and the like. 39; empathy.
The day we visited Dr. Miller's clinic, he and his team met with FTD patient Thomas Cox and his wife Lori. At first glance Thomas seems to be fine, but he is not.
Thomas Cox: I have FTD.
Dr. Bruce Miller: Okay. And that has affected you so far?
Thomas Cox: No.
In fact, Lori Cox says that in recent years, Thomas has lost interest in her, their son and his work, to the point that he was fired from his job. At present, he is virtually reduced to watching pictures on his phone.
Thomas Cox: It's Bugatti (PH).
Lori Cox: It's our dog. (TO LAUGH)
Dr. Bruce Miller: Ah. Your dog.
Lori Cox: I can blame the disease. I can say that sickness stole my … my husband.
Dr. Bruce Miller: Yes.
Dr. Bruce Miller: When a family sees a person with this disease, they do not recognize it. This is not the person I married that I love. It is not my father or my mother.
Bill Whitaker: You said that FTD attacks people against the very soul of their humanity.
Dr. Bruce Miller: It's profound as anything that can happen to a human being. It deprives us of our very essence of our humanity, of who we are.
According to Bruce Miller, since so many cases are first misdiagnosed as a mental illness, it takes an average of three years and several expensive brain tests to get a diagnosis. correct FTD diagnosis.
Dr. Bruce Miller: So 20,000 new cases every year, 100,000 or 200,000, we still do not know. But in young people with neurodegeneration, frontotemporal dementia is a major problem.
Bill Whitaker: So if you see someone who is suffering from younger dementia …
Dr. Bruce Miller: Very – strong – probability it is FTD.
Dr. Miller showed us this composite picture of two of the major degenerative brain diseases.
Dr. Bruce Miller: Frontal temporal dementia, in blue, Alzheimer's disease – in red. So a very different geography, very different clinical manifestations.
Bill Whitaker: What does blue indicate?
Dr. Bruce Miller: The blue indicates that there is a tissue loss. When we notice a loss of tissue in this area of the brain, we know that people have lost their interest in life, their motivation. They do less, they care less about others.
According to Miller, this loss of empathy can produce dangerous, impulsive, and even criminal behavior. And those with behavioral behavior are rarely aware that something has changed.
Amy Johnson: He had become a caring and devoted father and husband, and he just seemed to have turned off a switch. And he had no idea that he had changed. He had no idea.
Amy Johnson and her husband, Mark, married in 2006, settled in the small town of Windom, Minnesota, and now have four young children, three boys and a girl. Four years ago, Amy said that Mark seemed suddenly to stop caring for her and children.
Amy Johnson: It's the first time I really remember to be saying, "What happened? Where did you go?"
Amy remembers the day she left Mark responsible for their sons, then three and two, only to go home and find the boys playing outside, alone on a busy street, while Mark sat watching television, unconscious . On other days, he began to display a compulsive behavior that she had never seen before.
Amy Johnson: He could not stop eating. I started to lock up the food. He went to the grocery store and bought more. I took his credit card. He went to the grocery store and stole food.
Bill Whitaker: And those changes you saw, did you ask him, "What's going on?"
Amy Johnson: Yeah. And he just said, "Oh, I do not think anything is different, is it?"
C & # 39; was. Mark began making inappropriate remarks to a colleague of the company where he worked as a manufacturing engineer.
Bill Whitaker: He was fired?
Amy Johnson: Uh-huh (AFFIRM). And his reaction was, "Oh – oh, I guess that's good, so what's for dinner tonight?"
Bill Whitaker: What was your reaction?
Amy Johnson: I was just devastated. I was seven months pregnant at the time with our daughter.
Bill Whitaker: With your fourth child.
Amy Johnson: With my fourth child.
Bill Whitaker: So as the situation evolves, what will be the end result?
Dr. Bruce Miller: The result is always death. They-
Bill Whitaker: Still death.
Dr. Bruce Miller: Still death. We still have no way to intervene to slow down the progression.
When the FTD corrodes the brain, it also causes the closure of bodily functions, resulting in death. But Bruce Miller is optimistic, pointing to promising research in his lab and funded by NIH grants to scientists in the country.
Dr. Bruce Miller: We have sudden interventions and ongoing research that gives me great hope.
Bill Whitaker: When could you expect a breakthrough?
Dr. Bruce Miller: I hope that in the next five years we will have very powerful therapies in some variants of frontotemporal dementia that could stop the cold.
Tracey Lind and Emily Ingalls do not know if a breakthrough will come in time to help them. Otherwise, Tracey will eventually lose the ability to speak and then the ability to swallow.
Tracey Lind: Not being able to swallow a game; that's what's really scary. I'm trying to live in the present moment.
Emily Ingalls: I'm not very good at living this moment, so I worry a lot for the future.
Tracey Lind: Are you worried about taking care of me?
Emily Ingalls: Yeah. I'm worried about taking care of you. Sure.
Tracey Lind: What will be the hardest part?
Emily Ingalls: I think the hardest part will be the loss of the relationship.
Bill Whitaker: Did Emily ever tell you that?
Tracey Lind: No. I do not think so. (EMILY SUPPORTS HER HEAD INDICATING WHAT A)
As you can see, caregivers suffer as much as patients. For months, Amy Johnson kept Mark at home, even though she had four young children and held a full-time job. But his symptoms got worse.
Bill Whitaker: When did it become clear to you that you – you had to put him in an institution?
Amy Johnson: I went to an appointment with a nurse practitioner in psychiatry. And she says, "I think it's time for you to look for a different place, because now when he thinks of something, the part of his brain that tells him" it's a bad idea " does not work anymore."
When we met him, Mark Johnson was in an assisted living center about an hour from his home. He had earned nearly one hundred pounds because of a compulsive diet. Amy has since moved to another facility where he needs individual care. Amy says it costs her $ 13,000 a month.
Bill Whitaker: In your pocket?
Amy Johnson: in your pocket. It would be devastating to know that this is where his retirement savings are going and that they are not going to his family.
Families with FTD often have debilitating costs and it is often difficult to find a facility to care for patients such as Mark Johnson. The assisted living industry is not designed for 40-year-olds of six feet three.
Bill Whitaker: Hi, Mark.
Amy Johnson: How are you? This-
Mark Johnson: Hi.
Amy Johnson: … is Bill.
Bill Whitaker: How are you? Nice to meet you.
Amy visits Mark as often as she can and invites us to come one afternoon. He told us that he would just like to go home.
Bill Whitaker: Do you think you need help?
Mark Johnson: No.
Bill Whitaker: So you understand why you're here?
Mark Johnson: No.
Bill Whitaker: Do you think everything would be fine at home?
Mark Johnson: Yes. (TO LAUGH)
Bill Whitaker: I think Amy thinks … I do not want to put words (CLEARING THE THROAT) into her mouth, but I think she thinks it's the best place for you in this moment.
Mark Johnson: Agreement. (TO LAUGH)
After a minute, Mark says, "Okay, see you soon" and we leave him.
It's clearly painful for Amy to see what FTD has done to her husband and to know what he's going to do.
Amy Johnson: And they gave him two to five years to live. And-
Bill Whitaker: Two to five years?
Amy Johnson: Two to five years.
Bill Whitaker: How are you now?
Amy Johnson: It depends on the day. I miss him a lot.
You can find more information and resources about FTD at the Association for Temporal Frontal Degeneration
Produced by Rome Hartman and Sara Kuzmarov. Associate Producer, LaCrai Mitchell.
[ad_2]
Source link