Bruce Willis’ wife, Emma, gives health update: ‘Hard to know’ if he’s aware of his condition

>>> WE ARE BACK AT 8:11 WITH A >>> WE ARE BACK AT 8:11 WITH A VERY SPECIAL GUEST. EARLIER THIS YEAR, BRUCE WILLIS ANNOUNCED HE HAD BEEN DIAGNOSED WITH FRONTAL TEMPORAL DEMENTIA. IT IS A DEVASTATING CONDITION. AT THE MOMENT, THERE IS NO TREATMENT, AND THERE IS NO CURE. SO IN HONOR OF WORLD FTD AWARENESS WEEK, BRUCE’S WIFE HAS MADE A DECISION, AND SHE HAS BECOME AN ADVOCATE FOR ALL PATIENTS AND FAMILIES STRUGGLING WITH FTD TO BRING AWARENESS TO THE DISEASE AND THE URGENT NEED FOR RESEARCH, AND SHE JOINS US NOW ALONG WITH SUZANNE DIXENSON. GOOD

MORNING. FIRST OF ALL, THANK YOU FOR COMING. I KNOW THIS WAS NOT AN EASY DECISION, AND IT IS OUT OF YOUR COMFORT ZONE. BUT WE ARE HERE TOGETHER RIGHT NOW. JUST LET ME START OFF BY ASKING, HOW ARE YOU? AND HOW IS BRUCE DOING? >> WHAT I’M LEARNING IS THAT DEMENTIA IS HARD. IT’S HARD ON THE PERSON DIAGNOSED. IT’S ALSO HARD ON THE FAMILY. AND THAT IS NO DIFFERENT FOR BRUCE OR MYSELF OR OUR GIRLS. AND WHEN THEY SAY THAT THIS IS A FAMILY DISEASE, IT REALLY IS. >> YEAH. AND I THINK THAT’S INTERESTING. YOU

GUYS DO HAVE YOUNG KIDS AND KIND OF INTRODUCING WHAT IS HAPPENING TO THEIR FATHER MUST NOT BE A SIMPLE THING. HOW DID

YOU GO ABOUT THAT PROCESS? >> YOU KNOW, I THINK IT’S ALWAYS BEEN WE’RE VERY HONEST AND OPEN HOUSEHOLD. AND, YOU KNOW, THE MOST IMPORTANT THING WAS TO BE ABLE FOR US TO SAY WHAT THE DISEASE WAS, EXPLAIN WHAT IT IS BECAUSE WHEN YOU KNOW WHAT THE DISEASE IS FROM A MEDICAL STANDPOINT IT SORT OF ALL MAKES SENSE. SO IT WAS IMPORTANT THAT WE LET THEM KNOW WHAT IT IS BECAUSE, YOU KNOW, I DON’T

WANT THERE TO BE ANY STIGMA OR SHAME ATTACHED TO THEIR DAD’S DIAGNOSIS OR FOR ANY FORM OF DEMENTIA. >> WELL, THAT’S WHAT’S INTERESTING BECAUSE I THINK WHEN I WAS FIRST READING ABOUT FTD, I WAS LIKE, WHAT IS THAT? YOU THINK IT IS LIKE ALZHEIMER’S, WHERE YOU LOSE MEMORY. THAT IS NOT AT ALL WHAT IT IS. YOU LOSE LANGUAGE FUNCTION AND OTHER FUNCTIONS OF YOUR BODY; IS THAT RIGHT? >> YEAH, THAT’S RIGHT. IT CAN AFFECT MOVEMENT. IT CAN AFFECT SPEECH. AND WHAT’S ANOTHER ONE? >> YEAH. BEHAVIORS, PERSONALITY. AND WHAT WE CALL EXECUTIVE FUNCTIONING. >> AND THIS

IS SOMETHING THAT IS OFTEN MISDIAGNOSED BECAUSE — I GUESS IT IS BECAUSE THERE IS NOT AS MUCH AWARENESS FROM THE MEDICAL COMMUNITY ABOUT IT. WHAT ARE PEOPLE OFTEN DIAGNOSED WITH WHEN THEY PRODUCE THE SYMPTOMS? >> YEAH. IT IS ONE OF THE MOST CONFUSING PARTS BECAUSE MOST DOCTORS AREN’T FAMILIAR WITH IT. SO IT CAN TAKE ALMOST FOUR YEARS FOR PEOPLE TO GET DIAGNOSED ON AVERAGE. THEY HAVE MANY MISDIAGNOSISES ON THE WAY. DEPRESSION, BIPOLAR DISEASE, ALZHEIMER’S, MAYBE EVEN PARKINSON’S OR ALS. >> SO HOW DO PEOPLE PRESENT WHEN THEY HAVE THIS, SUZANNE? >> WELL, WE’RE REALLY TALKING ABOUT

UNEXPLAINED CHANGES IN HOW A PERSON IS IN THE WORLD. SO SOMEBODY WHO NORMALLY SPEAKS ABSOLUTELY FINE HAS TROUBLE PUTTING THEIR THOUGHTS INTO MEANINGFUL SENTENCES. OR THEY MAY LOSE THE MEANING OF A SPECIFIC WORD. WE’RE TALKING ABOUT MAYBE A PERSON WHO ONCE MANAGED THE FAMILY’S FINANCES ALL OF A SUDDEN CAN’T — HAS TROUBLE BALANCING A CHECKBOOK OR HAS PROBLEMS AT WORK. EITHER MAKING POOR DECISIONS OR JUST ISN’T COMPLETING TASKS. >> AND YOU COULD SEE HOW THAT COULD TIPTOE IN AS SOMETHING THAT’S AN EVERY DAY WHOOPS AND SUDDENLY YOU START ADDING UP. HOW WAS IT TO COME

TO TERMS WITH THIS DIAGNOSIS FOR YOU? >> I THINK IT WAS THE BLESSING AND THE CURSE. YOU KNOW, TO SORT OF FINALLY UNDERSTAND WHAT WAS HAPPENING SO THAT I CAN BE INTO THE ACCEPTANCE OF WHAT IS. IT DOESN’T MAKE IT ANY LESS PAINFUL, BUT JUST THE ACCEPTANCE IS — AND JUST BEING IN THE KNOW OF WHAT IS HAPPENING TO BRUCE JUST MAKES IT A LITTLE BIT EASIER. >> YEAH. DOES — DOES HE KNOW WHAT’S GOING ON? IS THAT SOMETHING THAT HE IS AWARE OF? >> HARD TO KNOW. IT’S HARD TO KNOW. >> YEAH. WHAT WE

KNOW IS, OBVIOUSLY, THE DISEASE CAN START IN THE FRONTAL OR THE TEMPORAL LOBES LIKE THE NAME — THE NAME SIGNIFYIESSIGNI ONE OF THE THING THAT THE FRONTAL LOBE CONTROLS IS SELF-INSIGHT. WE DON’T KNOW. SOME PEOPLE, THAT’S THE FIRST THING THEY LOSE, ANY UNDERSTANDING THAT THEY THEMSELVES HAVE CHANGED AND OTHER PEOPLE RETAIN THAT FOR A LONG TIME. >> YEAH. BEING A — YOU DON’T CALL IT A CARETAKER. THAT’S ONE OF THE FIRST THINGS I NOTICED. WHAT DO YOU CALL IT? >> A CARE PARTNER. >> BECAUSE HE IS YOUR PARTNER. >> HE IS HI PARTMY PARTNER. >>

I THINK THERE ARE A LOT OF CARE PARTNERS OUT THERE CARING FOR LOVED ONES WITH DIFFERENT KINDS OF DISEASES AND AILMENTS. AND HOW HAVE YOU BEEN ABLE TO NAVIGATE THOSE WATERS? YOU NEED GAS IN THE TANK, OBVIOUSLY, TO DO WHAT YOU ARE DOING. >> YEAH. YOUR YOU REALLY DO. IT IS IMPORTANT TO ASK FOR HELP AND SUPPORT. AND YOU CAN LOOK TO ORGANIZATIONS LIKE THE AFTD. IT IS SORT OF A GREAT STARTING POINT. AND, YOU KNOW, IT’S — IT’S IMPORTANT FOR CARE PARTNERS TO LOOK AFTER THEMSELVES SO THAT THEY CAN BE THE BEST CARE PARTNER

FOR THE PERSON THAT WE’RE CARING FOR. >> WHEN I THINK ABOUT YOUR FAMILY, I SEE LIKE BEAUTIFUL CHILDREN AND YOUR HUSBAND. ARE YOU STILL — ARE THERE WAYS THAT YOU CELEBRATE JOY IN YOUR FAMILY AND HOW YOU DO THAT? >> THERE IS SO MANY BEAUTIFUL THINGS HAPPENING IN OUR LIVES. IT IS JUST REALLY IMPORTANT FOR ME TO LOOK UP FROM THE GRIEF AND THE SADNESS SO THAT I CAN SEE WHAT IS HAPPENING AROUND US. BRUCE WOULD REALLY WANT US TO BE IN THE JOY OF WHAT IS. HE WOULD REALLY WANT THAT FOR ME AND OUR

FAMILY. AND OUR FAMILY. >> AND HE’S A HEALER, TOO. >> I HAVE THE WHOLE FAMILY WATCHING AND ROOTING ME ON. I’M HERE TO, LIKE I SAID, RAISE AWARENESS BUT ALSO TO MAKE THEM PROUD. >> I KNOW ONE OF THE THINGS PEOPLE ARE WONDERING, LIKE HOW DO YOU KNOW IF YOU HAVE THIS? IS THIS SOMETHING THAT’S PASSED ON GENETICALLY IN. >> SO IT CAN BE. IN 20% TO 25% OF PEOPLE, THERE IS A GENETIC MUTATION. WE SEE THAT PATTERN FROM GRANDPARENT TO PARENT TO CHILD. BUT IN A MAJORITY OF PEOPLE, IT IS WHAT WE CALL SPORADIC.

WE DO NOT KNOW WHAT CAUSES THE CONDITION. >> WHAT DO YOU THINK BRUCE IS TEACHING YOUR GIRLS NOW? >> OH, MY GOSH. HE IS THE GIFT THAT KEEPS ON GIVING. LOVE, PATIENCE, RESILIENCE, SO MUCH. AND — AND HE’S TEACHING ME AND OUR WHOLE — I MEAN, YOU KNOW, FOR ME TO BE OUT HERE DOING THIS, THIS IS NOT MY COMFORT ZONE, BUT THIS IS THE POWER OF BRUCE. >> I HAVE HEARD FROM PEOPLE THAT HAVE AN AILING FAMILY MEMBER, AND I REMEMBER THIS FROM A FRIEND OF MINE. SHE SAID MY HUSBAND’S DIAGNOSIS MADE MY KIDS

BETTER PEOPLE. JUST BETTER PEOPLE. IS THAT WHAT YOU’RE NOTICING? >> I THINK MY KIDS WOULD BE GREAT NO MATTER WHAT. THIS IS NOT WHAT I WOULD WANT FOR THEM. BUT REALLY, LIKE I SAID, IT IS TEACHING THEM SO MUCH AND HOW TO CARE AND LOVE AND IT’S REALLY — IT’S A BEAUTIFUL THING AMONGST THE SADNESS. >> WELL, YOU SAID THEY’RE