60 minutes rewind
this is a story about the cruelest disease you have never heard of it's called frontotemporal
dementia or ftd and given the devastating toll it takes on its victims and their families
it ought to be much better known than it is ftd is the number one form of dementia in americans
under the age of 60. what causes it is unclear but it attacks the frontal and
temporal lobes of the brain which control personality and speech and it's always fatal
it is not alzheimer's disease which degrades the part of the brain responsible for memory with
ftd people either display such bizarre behavior that their loved ones can hardly recognize them
or they lose the ability to recognize themselves that's what happened to tracy lind one day a few
years ago as she was standing in a public restroom i was washing my hands and i looked in the mirror
and i did not recognize my own face didn't recognize yourself no i looked in the mirror
and i kept looking i remember i kept looking at this woman wondering who was she this is who
she was the very reverend tracy lind dean of the episcopal cathedral in cleveland ohio one of the
city's most prominent preachers and civic leaders she was 61 years old when both she and her spouse
emily ingalls began to notice trouble with things tracy had always done very well like
finding the right word recognizing congregants and friends faces and of course her own that's
when i said man i got to go see a doctor when that happened were you scared oh i was scared of death
emily what did you think was happening i thought there's something not right with her brain
on election day 2016 tracy lind got the diagnosis frontotemporal dementia she has what's called the
speech variant of the disease which among other things attacks the part of the brain
where language lives sometimes you're just you're fine and you're on and then there are other times
that the words just don't come out i mean even if i know what the word is sometimes
i feel like i'm playing bingo and when i find the word it's i shout it i feel like an imbecile
you know apple oh yeah apple that's it and i get all excited
this is acutely painful for tracy because being a powerful effective speaker has always been at the
core of her identity one of the first things you did once you got this diagnosis was to
resign from your job as dean at trinity cathedral why did you take that action so quickly
mainly it was i knew i was starting to fail even though i was faking it pretty well
since stepping down tracy and emily have traveled around the country and the world speaking and
preaching about her ftd or as tracy puts it telling the story of dementia from the inside out
i was determined to live what i had been preaching for over 30 years that out of pain comes joy
i'm going to face this disease called ftd that i'd never heard of before
and i'm going to see what i can do with it i don't know if you are aware of how unique this situation
is that you are in the middle of this decline from dementia and yet you're so able to articulate
what that's like i am aware of that i think my curiosity is what's getting me through it
because otherwise phil i i'm just gonna lay down and
and and roll up in a ball tracy says she has good days and bad days just in our interview
there were moments when she was completely in control and moments when she wasn't and i'm doing
some you know i'm i'm um
i know there's no
oh do you want help can you help please okay this is the way this very sad illness presents
dr bruce miller may be the world's leading expert on frontotemporal dementia he runs a lab at the
university of california san francisco that's doing cutting-edge research on the two main forms
of ftd the speech variant that tracy lind has and a behavioral variant that attacks personality
judgment and empathy pleasure to see you both again on the day we visited dr miller's clinic he
and his team met with ftd patient thomas cox and his wife laurie at first glance thomas seems fine
but he's not i've got ftd okay and has it affected you so far no i'm not in fact laurie cox says that
starting a few years ago thomas lost interest in her in their son and in his work so much that
he was fired from his job by now he's pretty much reduced to looking at photos on his phone
that's bugatti that's our dog your dog i can blame the disease i can say that the disease stolen
my husband yeah when a family sees someone with this illness they don't recognize them this is not
the person i married that i love this is not my father or my mother you have said that
ftd attacks people at the very soul of their humanity this is profound as anything that can
happen to a human being it robs us of our very essence of our humanity of who we are
bruce miller says because so many cases are first misdiagnosed as mental illness it takes an average
of three years and several expensive brain scans to get a correct diagnosis of ftd so whether it's
twenty thousand new cases every year a hundred thousand two hundred thousand we still don't know
but in young people with neurodegeneration frontal temporal dementia is a big one so if
you see someone who is suffering dementia at a younger age very strong likelihood that it's ftd
dr miller showed us this composite image of two of the major degenerative brain diseases
from a temporal dementia shown in blue alzheimer's disease as shown in red so very different
geography very different clinical manifestations what does the blue indicate the blue indicator
is that there's loss of tissue when we see loss of tissue in that brain region we know people
have lost their interest in life their drive they do less they care less about other people
incredible that loss of empathy miller says can produce dangerous impulsive even criminal behavior
and those with behavioral ftd are rarely aware that anything has changed he went from
being a caring doting father and husband and it just seemed like he'd flip the switch off
and he had no idea that he changed he had no idea amy johnson and her husband mark married in 2006
settled in the small minnesota town of windham and now have four young children three boys and a girl
three years ago amy says mark suddenly seemed to stop caring about her and the kids
that's the first time that i really remember thinking to myself what happened
where did you go amy recalls a day when she left mark in charge of their sons then
three and two only to come home and find the boys playing outside alone by a busy street while mark
sat inside watching tv oblivious on other days he began to display compulsive behavior she had never
seen before he couldn't stop eating i started locking the food up he would walk down to the
grocery store and buy more i took his credit card he'd walk down to the grocery store and steal food
i mean these changes that you saw did you ask him what's going on yeah and he just said oh i don't
think anything's different is it it was mark began making inappropriate remarks to a female co-worker
at the company where he worked as a manufacturing engineer he was fired and his reaction was oh
well i guess okay so what's for supper tonight what was your reaction i was just devastated
i was seven months pregnant at the time with our daughter with your fourth child with my fourth
child the story will continue after this so as this progresses what's the eventual
outcome outcome of this is always death always death always death we have no
way of intervening yet slow the progression as ftd corrodes the brain it also eventually causes
bodily functions to shut down that's what leads to death but bruce miller is optimistic pointing
to promising research both in his lab and funded by nih grants to scientists around the country
suddenly we have interventions and research that are going on that give me great hope when
might you expect a breakthrough i'm hoping in the next five years that we will have
very powerful therapies in certain variants of frontotemporal dementia that may stop it cold
tracy lind and emily ingles have no idea whether any breakthrough will come in time to help them
if not tracy will eventually lose the ability to speak at all and then the ability to swallow
the not being able to swallow part that's what's really frightening
so i try to live in the present moment i'm not very good at living in the moment so i worry a
lot about the future do you worry about taking care of me yeah i worry about taking care of you
sure what's going to be the hardest part i think the hardest part is going to be
the loss of the relationship as emily told you this before i don't think so
as you can see caregivers suffer as much as patients for months amy johnson kept mark at home
even as she mothered four small children and held a full-time job
but his symptoms got worse and worse when did it become clear to you that
you had to put him in a facility i went to an appointment with a psychiatric nurse practitioner
and she said 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 that's a bad idea
doesn't work anymore mark johnson now lives in a facility about an hour away from home he's
gained nearly a hundred pounds due to compulsive eating even walking into elderly residents rooms
and taking their food amy says his care now costs her nearly seven thousand dollars a month
out of pocket out of pocket he would be devastated to know that that's where his retirement savings
are going and that they're not going to his family crippling costs are common for ftd families
and it's often tough to find a facility to care for patients like mark johnson the assisted living
industry is not set up for six foot three forty year olds how's it going this is bill
how are you very nice to meet you amy visits mark as often as she can and invited us to
come along one afternoon he told us he'd just like to go home do you think you need help no
so do you understand do you understand why you're here no
i think you'd be okay at home
i think amy thinks i don't want to put words in her mouth but i think she thinks this is
the best place for you right now okay
after another minute mark said all right see ya and we left him big hug
it's clearly painful for amy to see what ftd has done to her husband and to know what it will do
they give him two to five years to live and two to five years
two to five years so how are you doing now it depends on the day
i miss him a lot