POLICE
POLICE ON
POLICE ON THE BODY OF A MAN IN THE SAME AREA.
THEY ARE NOT DIRECTLY LINKING
THE CASES.
THE CASES. THEY SAY THEY DO NOT BELIEVE
THERE IS A CURRENT DANGER IN
THE COMMUNITY.
THE COMMUNITY. >>> THIS IS A DEVASTATING AND
MYSTERIOUS DISEASE, TAKING
PEOPLE IN THE PRIME OF THEIR
LIVES.
LIVES.
LIVES. >>
LIVES. >> IT IS CALLED FRONTOTEMPORAL
DEGENERATION, OR FTD, AND IT
IS ALSO CALLED MIDLIFE
DEMENTIA.
DEMENTIA.
DEMENTIA. IT CONTROLS YOUR SPEECH
IMPERSONALITY.
IMPERSONALITY. ALMOST NOTHING IS KNOWN ABOUT
IT.
IT.
IT. >>
IT. >> NICOLE IS INTRODUCING US TO
THIS BAFFLING DISEASE, AND ONE
WOMAN WHO IS ON A QUEST TO
EDUCATE THE WORLD ABOUT IT, AND
SAVE OTHERS FROM HER PAIN.
>> THIS IS BEEN CALLED THE
CRUELEST DISEASE YOU'VE NEVER
HEARD OF.
HEARD OF.
HEARD OF. THE SCARY PART IS THAT YOU
PROBABLY WILL NOT KNOW IF YOU
OR A LOVED ONE HAS IT.
♪ [ MUSIC ] ♪
>> WALKING, HIKING, TRAVELING.
WE ALWAYS HAD BARBECUES.
>> Reporter: THIS IS A PICTURE-
PERFECT LIFE.
PERFECT LIFE. THIS IS THE LIFE WENDY WILL
CHERISH.
CHERISH.
CHERISH. >> ♪ [ MUSIC ] ♪
>> Reporter: THIS IS HER
HUSBAND TODAY, AT AGE 55.
>> THIS IS THE ONLY TIME WE
HEAR HIS VOICE IS WHEN HE IS
SINGING.
SINGING.
SINGING. HE DOES NOT TALK.
THIS IS THE BEST CONVERSATION I
CAN HAVE WITH HIM.
IT IS ONE-SIDED.
♪ [ MUSIC ] ♪>> Reporter: THE
PART OF HIS BRAIN THAT CONTROLS
CONVERSATIONS IS GONE.
THE REASON FOR THE
TRANSFORMATION IS A RARE
DISEASE CALLED FRONTOTEMPORAL
DEGENERATION, OR FTD, ADD
50,000 AMERICANS ARE DIAGNOSED
WITH IT.
WITH IT.
WITH IT. MANY OF THEM, LIKE ROB, ARE AT
FIRST MISDIAGNOSED.
FIRST MISDIAGNOSED. >> YOU CAN GET CONFUSED FOR
DEPRESSION AND OTHER
PSYCHIATRIC DISORDERS LIKE
SCHIZOPHRENIA.>> Reporter: THIS
IS THE NEUROLOGIST AT BARROW.
SHE IS ALSO ROB'S DR. FTD
STARTS WITH ODD BEHAVIOR.
A PERSON CAN START MISSING
SOCIAL CUES.
SOCIAL CUES. THEY MAY STOP RESPECTING
PERSONAL SPACE ARE MAKING
OFFENSIVE COMMENTS.
OFFENSIVE COMMENTS. >> THAT PART OF THE BRAIN IS
MUCH SMALLER.
MUCH SMALLER. >> Reporter: THE BEHAVIORAL
SHIFT WAS SLOW BUT DRAMATIC.
HE LOST JOB AFTER JOB,
SEEMINGLY WITHOUT A CARE.
HE MOVED OUT TO IOWA, NEARLY
LEADING TO A DIVORCE.
>> IF WE GOT THE EARLY
DIAGNOSIS, I NEVER WOULD'VE LET
THEM GO.>> Reporter: IT
NORMALLY OF AFFECTS THOSE
BETWEEN 45-65.
BETWEEN 45-65. THERE IS NO TREATMENT.
TYPICALLY, AFTER DIAGNOSIS, THE
PERSON HAS 5-8 YEARS TO LIVE.
>> THE BRINE WILL EVENTUALLY
SHUT DOWN.
SHUT DOWN. THE MOST COMMON CAUSE OF DEATH
WAS PNEUMONIA.
WAS PNEUMONIA. >> Reporter: WITH THE SCIENTIST
KNOW IS ONE OF TWO PROTEINS,
PROTEIN CALLED TAU, OR TDP 43
WILL ACCUMULATE IN THE BRAIN,
CAUSING THE BRAIN CELLS TO DIE.
THE SKIN OF THE BOTTOM IS A
NORMAL BRAIN.
NORMAL BRAIN. UP TOP, IS ROB'S BRAIN.
>> WE CAN SEE THAT THE BRAIN IS
SHRINKING.
SHRINKING. WE HAVE LOST BRAIN TISSUE.
>> Reporter: THE DOCTORS HAVE
NO IDEA WHAT CAUSES IT.
>> IN SOME CASES, IT IS
GENETIC.
GENETIC.
GENETIC. MOST PEOPLE DO NOT HAVE A
FAMILY HISTORY OF THIS DISORDER.
>> IT HAS BEEN A ROLLER
COASTER.
COASTER.
COASTER. ONE DAY HE IS GOOD, ONE DAY HE
IS NOT.
IS NOT.
IS NOT. WE NEVER KNOW.>> Reporter: THEY
ARE SPENDING TIME TOGETHER WITH
THEIR FAMILY.
THEIR FAMILY. >> IT IS REALLY HARD, JUST DAY
TODAY, YOU NEVER KNOW WHAT WILL
HAPPEN.
HAPPEN.
HAPPEN. THE HARDEST PART IS, THEY SLIP
AWAY BEFORE ANYBODY CAN GRASP
IT.
IT.
IT. THEY
IT. THEY ARE GONE BEFORE YOU GET TO
SAY GOODBYE.>> Reporter: ROB
WILL BE DONATING HIS BRAIN TO
RESEARCH.
RESEARCH.
RESEARCH. WENDY IS HOPING IT WILL MAKE A
DIFFERENCE.
DIFFERENCE. IF YOU ARE WORRIED THAT SOMEONE