♪ HELLO AND WELCOME TO FAMILY AND WELCOME BACK TO FAMILY HEALTH MATTERS I'M YOUR HOST SHELLY IRINWITH ME TODAY IS SHELLY AN ALS CLIENT, KATIE M, WIFE OF AN ALS PATIENT, DR.

EVA PROFESSOR AT THE UNIVERSITY OF MICHIGAN, DO I SAY GO BLUE?

>> YEAH DEFINITELY NOT GO GREEN.

[ LAUGHTER ] WELL, IT'S GOOD TO LAUGH.

HUMOR CAN BE HEALTHY BUT WE HAVE A TOUGH TOPIC TO TALK ABOUT.

>> YES WE DO.

>> MAY I ASK HOW YOU ARE INVOLVED DR.

FELDMAN.

>> DIRECTOR OF ALS CENTER OF EXCELLENCE AT THE UNIVERSITY OF MICHIGAN AT OUR MEDICAL SCHOOL AND HOSPITAL AND HEALTH SYSTEM.

>> ARE YOU BUSY IN THIS FIELD OF ALS?

>> WE ARE VERY BUSY.

MICHIGAN HAS ONE OF THE HIGHEST PREVALENCE OF ALS IN THE COUNTRY.

THE MIDWEST HAS THE HIGHEST SO BETWEEN MICHIGAN AND OHIO WE HAVE MORE ALS PATIENTS THAN ANY OTHER STATE PER CAPITA.

>> WE WILL GET TO THAT, TELL US ABOUT YOU SHERRY.

>> I AM AN ALS PATIENT I WAS DIAGNOSED IN SEPTEMBER OF 2017.

>> KATIE YOUR STORY A BIT.

>> MY HUSBAND, MY LATE HUSBAND BATTLED ALS FOR FOUR YEARS, I WAS HIS ONLY CAREGIVER.

HE LOST HIS BATTLE IN DECEMBER.

>> AND YES AGAIN JUST SEEING HIS IN YOUR STORY AND YES MAY HE REST IN PEACE SO THANK YOU FOR SHARING HIS STORY I'M GOING TO REPEAT A BIT OF SOME 101 OF ALS CALLED LOU GEHRIG DISEASE.

>> HE WAS DIAGNOSED WITH THIS DISORDER AND HAD A VERY RAPIDLY PROGRESSING FORM OF ALD.

HE MADE A SPEECH IN YANKEE STADIUM ABOUT HIS DISEASE AND IT REALLY BECAME HOOKED THE NAME OF THE DISEASE WITH HIM.

>> YES AND OF COURSE ALS STANDING FOR A VERY LONG MEDICAL.

>> BETWEEN YOU AND ME AND THE FENCE POST WHAT DOES IT MEAN?

>> WHAT IT MEANS IS THAT THE LARGE NERVE CELLS IN YOUR BRAIN AND YOUR SPINAL CORD DEGENERATE AND WE DON'T KNOW WHY BUT THOSE NERVE CELLS ARE CONNECTED BY NERVES TO YOUR MUSCLES AND IN TURN YOUR MUSCLES BECOME WEAK AND OVER TIME YOU LOSE THE ABLE TO MOVE YOUR ARMS OR YOUR LEGS.

EVENTUALLY TO SPEAK AND TO BREATHE.

>> THIS IS SUCH THAT THE MIND IS NOT AFFECTED.

>> ACTUALLY THE MIND CAN BE AFFECTED AND WE NOW UNDERSTAND MORE ABOUT THE DISEASE AND THE MIND IS FREQUENTLY AFFECTED.

IT'S IMPORTANT THOUGH TO NOTE THAT WHILE I DESCRIBED LOU GEHRIG'S DISEASE THERE ARE AT LEAST 8 DIFFERENT SUBTYPES OF THIS DISEASE SO DIFFERENT PEOPLE PRESENT DIFFERENTLY, SOME PEOPLE PRESENT JUST WITH A WEAK ARM OR LEG, SOME PEOPLE PRESENT JUST WITH DIFFICULTY SPEAKING, AND THE TEMPO OF THE DISEASE HOW IT PROGRESSES OVER TIME DEPENDS ON THE PRESENTATION.

>> IS THERE ANY GENETIC DISPOSITION?

>> THERE IS, WE NOW KNOW THAT THERE ARE ABOUT 15-20% OF THIS DISEASE IS INHERITED AND RUNS IN FAMILIES.

AND THERE IS ALSO SOMETHING CALLED A POLY GENIC RISK SCORE WHERE LITTLE PIECES OF MULTIPLE GENES MAY MAKE YOU SUSCEPTIBLE FOR ALS SUCH AS AN ENVIRONMENTAL INSULT.

>> IS THERE A CURE FOR ALS AT THIS TIME.

>> THERE IS NOT A CURE.

>> TELL ME ABOUT YOUR STORY SHERRY WHEN DID YOU HAVE YOUR FIRST SYMPTOM.

>> IN SPRING OF 2016.

MY POINTER FINGER ON MY RIGHT HAND STARTED TO FREEZE UP AND I THOUGHT OH, A TENDON ISSUE, SOMEONE ELSE SAID OH, TRIGGER FINGER, EASY SURGERY BUT FROM THERE MY SYMPTOMS PROGRESSED TO MY HAND, WEAKENING MUSCLES WERE ATROPHYING IN MY HAND SO IT TOOK UNTIL SEPTEMBER OF 2017 TO FIGURE OUT THAT IT WAS ALS AND THEN I WENT TO U OF M, DR.

FELDMAN CONFIRMED THE DIAGNOSIS AND THEN SINCE THEN I HAVE BEEN GOING TO U OF M THE ALS CLINIC FOR CARE.

>> AGAIN, EACH CASE IS UNIQUE, DO YOU PRESENT ANY MORE SPECIFICS HERE, WHAT WAS YOUR INITIAL TREATMENT?

>> SO DR.

FELDMAN SAID I'M LIM ON SET WHICH IS SLOW MOVING AND SHE SAID ONCE IT PRESENTS SLOW MOVING IT'S MOST LIKELY TO STAY SLOW MOVING SO I'M THANKFUL FOR THAT.

THERE IS NOT MUCH I CAN DO AS FAR AS TREATMENT.

I DO TAKE MEDICATION TWICE A DAY RUIZOL AND JUST QUALIFIED FOR A TRIAL AT U OF M TO TEST ANOTHER MEDICATION THAT THEY ARE SEEING WILL HELP ALS PATIENTS.

>> DR.

FELDMAN ARE THERAPIES INDICATED AT THIS POINT?

>> IS WHAT.

>> IS THEORIES INDICATED AT THIS POINT?

>> SHE IS ON ONE THERE ARE TWO PROVEN THERAPIES FOR ALS WHICH SHE IS ON AND A SECOND ONE KNOWN AS RADACAVA AND MINIMAL EFFECTS AND NOT CURES BY ANY STRETCH OF THE IMAGINATION SHE IS PARTICIPATING IN ONE OF OUR CLINICAL TRIALS WHICH IS VERY VERY IMPORTANT AS WE TEST NEW MEDICATIONS TO SEE IF THEY ARE GOING TO BE EFFECTIVE BUT AT THIS POINT AS SHE SAID SHE HAS LIM ON SET A FORM OF ALS IS EXTREMELY SLOWLY PROGRESSIVE.

>> KATIE TAKE US BACK TO YOUR DAY WITH DAVID.

>> SCOTT.

>> SCOTT, YES.

>> DAVID WAS WRITER PRODUCER.

>> YES.

>> SO THANK YOU FOR YOUR STORY AS WELL, DAVID BUT TELL US ABOUT SCOTT.

>> HE ALSO HAD LIM ON SET AND HIS STARTED IN HIS RIGHT HAND.

>> YEAH.

>> AND HE WAS DIAGNOSED IN 2014.

IN KALAMAZOO FIRST AT BRONSON HOSPITAL AND THEN WE WENT AND SAW DR.

FELDMAN AND I REMEMBER SITTING THERE WHEN SHE CONFIRMED THE DIAGNOSIS AND SHE SAID WE SAID WHAT DO WE DO NOW AND SHE SAID GO LIVE YOUR LIFE.

SO WE TRIED.

WE TRIED TO DO THAT.

WE TRIED TO SAY YES TO EVERYTHING WE COULD AND MAKE MEMORIES AND TRAVEL AND EXPERIENCE THINGS WITH OUR FRIENDS AND FAMILY.

WE HAVE TWO YOUNG KIDS SO THAT IS WHAT WE SET OUT TO DO.

>> WHAT DID YOU TELL THE KIDS?

>> WE DIDN'T TELL THE KIDS FOR QUITE SOME TIME BECAUSE SCOTT REALLY ONLY HAD WEAKNESS IN HIS HAND AND IT WAS VERY DIFFICULT TO TELL.

HE WAS STILL RUNNING, GOING TO THE GYM REGULARLY, HE WAS A FORMER PROFESSIONAL HOCKEY PLAYER SO HE WAS ALWAYS MOVING ANDBUSY AND SO NONE OF THAT STOPPED.

SO IT WAS OUR KIDS WERE TWO AND FOUR AT THE TIME.

WE FELT IT WASN'T BENEFICIAL TO SHARE THAT WITH THEM.

THEY WOULDN'T UNDERSTAND.

AND THERE REALLY WAS NO DIFFERENCE.

SO AS HIS SYMPTOMS PROGRESSED AND BECAME MORE SIGNIFICANT WE SHARED THAT HE HAD ALS BUT NOT EXACTLY WHAT THAT MEANT.

LONG-TERM.

>> DID YOU ASK THE QUESTION WHY?

WHY DOES SCOTT HAVE ALS?

OR IS THAT A QUESTION YOU OFTEN GET DR.

FELDMAN?

>> SCOTT DIDN'T.

HIS ATTITUDE REALLY WAS REMARKABLE.

>> IT WAS.

>> HE WAS POSITIVE THE ENTIRE HIS ENTIRE JOURNEY NOT SAYING THAT HE DIDN'T HAVE BAD DAYS OF COURSE.

OR EMOTIONAL TIMES, DEFINITELY.

BUT HE STAYED POSITIVE AND I THINK THAT THAT IS A TESTAMENT TO WHO HE WAS REALLY.

HE DIDN'T ASK WHY.

>> I GET ASKED THAT A LOT, OF COURSE, YOU KNOW WHY ME AND THAT'S -- AND YOU KNOW WE ARE INTERESTED IN WHY SUCH A HIGH PREVALENCE WHY ARE THE NUMBER ONE STATE IN THE COUNTRY.

WE ARE BEGINNING TO UNDERSTAND AT LEAST WE THINK THAT THE ENVIRONMENT PLAYS A VERY LARGE PART AND MICHIGAN IS BOTH AN INDUSTRIAL AND AGRICULTURAL STATE SO WE HAVE A LOT OF TOXINS AND POLLUTANTS IN OUR ENVIRONMENT.

WE HAVE 65 UNCLEANED SUPER FUND SITES WHICH ARE TOXIC DUMPS IN THE STATE OF MICHIGAN COMPARED TO I THINK OHIO HAS 39, INDIANA HAS 40, SO WE THINK THAT'S POTENTIALLY THERE IS AN ENVIRONMENTAL HIT AND IF YOU HAVE A GENETIC PREDISPOSITION THEN YOU ARE MORE LIKELY TO DEVELOP THE DISEASE.

>> SHERRY TALK ABOUT SUPPORT GROUPS THAT MAY BE HELPING YOU IN YOUR LIFE.

>> I HAVE FOUND SUSAN MASS FOUNDATION.

THEY MEET ONCE A MONTH, THE THIRD WEDNESDAY OF EVERY MONTH AND THAT HAS BEEN EXTREMELY HELPFUL.

I FEEL LIKE OF COURSE THE PEOPLE THERE CAN RELATE TO WHAT I'M GOING THROUGH.

AND AS KATIE SAID ABOUT HER HUSBAND, IT'S AMAZING HOW POSITIVE ALL THESE PEOPLE ARE WITH ALS.

I MEAN IT'S A HORRIFIC DISEASE AND YOU HAVE THESE PEOPLE IN THIS ROOM LIKE YOU SAID LIVING THEIR LIFE.

AND I DON'T KNOW HOW THAT'S POSSIBLE, BUT THEY HAVE BEEN GREAT, THEY HAVE A LOAN CLOSET, YOU CAN BORROW WHEELCHAIRS LOTS OF RESOURCES THROUGH THEM, FUNDRAISERS, THEY ARE AMAZING.

>> WANT TO EXPAND ON THAT KATIE AGAIN?

>> YES, SCOTT WAS ASSOCIATED WITH THE SUSAN MASS FOUNDATION.

HE STARTED THE MY TURN PROJECT FUND AND ACTUALLY AT HIS PASSING HE REQUESTED THAT ALL DONATIONS BE MADE TO THIS MY TURN PROJECT FUND WHICH HELPS SMALL CONSTRUCTION LOANS TO MAKE HOMES MORE ACCESSIBLE, YOU KNOW AS PATIENTS NEED THAT.

AND THAT WAS REALLY IMPORTANT TO HIM AND MAKES ME FEEL VERY PROUD TO SEE THE DIFFERENCE THAT HE HAS MADE.

ALL OF HIS EQUIPMENT WAS DONATED TO THEIR LOAN CLOSET.

SO, YEAH, HE WAS IT'S A GREAT ORGANIZATION.

>> AND YOU KNOW SCOTT HAD A VERY DISTINCT SUPPORT GROUP.

HE HAD THE UNIVERSITY OF MICHIGAN HOCKEY PROGRAM AND THE HOCKEY TEAM, KATIE SHOULD TELL YOU A LITTLE BIT ABOUT THAT BECAUSE THAT WAS REALLY QUITE REMARKABLE.

>> THAT WAS AMAZING.

IT'S HARD TO PUT INTO WORDS WHAT THAT BEING PART OF THAT COMMUNITY IS LIKE.

BUT YOU KNOW THEY STEP UP AND THEY RALLY AROUND YOU AND IN WAYS THAT YOU MAY NOT NOTICE HAD IT NOT BEEN FOR THIS.

YOU KNOW FUNDRAISING JUST THEY DID GAMES, AWARENESS GAMES WHICH THAT IS VERY IMPORTANT TO ALS.

>> THEY DID A HOCKEY GAME FOR SCOTT EVERY YEAR AT THE UNIVERSITY OF MICHIGAN AND YOU KNOW SCOTT WHEN HE COULD CAME OUT ON THE ICE AND THEN YOUR SON.

>> YEP.

>> AND DAUGHTER CAME OUT ON THE ICE AND IT WAS REALLY QUITE MOVING THAT THE ENTIRE HOCKEY PROGRAM FROM THE COACH TO ALL HIS -- THE INDIVIDUALS HE PLAYED WITH WHEN HE WAS ON THE HOCKEY TEAM AT THE UNIVERSITY OF MICHIGAN WOULD COME BACK SO THERE WAS A LOT OF SUPPORT FOR INDIVIDUALS SUCH AS SCOTT.

>> YEAH, LOOKING BACK ANY WHAT HAVE OR COULD HAVE OR ADVICE TO THE NEXT WIFE OF THE NEXT SCOTT?

>> I DON'T KNOW AS FAR AS ADVICE TO THE NEXT WIFE BECAUSE IT'S REALLY ONE DAY AT A TIME AND EVERYONE'S JOURNEY IS DIFFERENT AND YOU KNOW I THINK IT'S RARE THAT THE WIFE IS THE ONLY CAREGIVER THROUGHOUT THE ENTIRE JOURNEY.

THAT WASN'T PLANNED.

I'M NOT SURE EXACTLY HOW THAT HAPPENED BUT WE COULDN'T FIND GOOD HELP AND THAT WAS REALLY DIFFICULT BECAUSE IT'S A LOT FOR ONE PERSON AND YOU KNOW THEY NEED TO DEPEND ON YOU FOR EVERYTHING BUT I THINK I'M SO GRATEFUL LOOKING BACK NOW THAT WE SAID YES TO EVERYTHING, WE WERE BUSY CERTAINLY, MAYBE A LITTLE BIT OVERWHELMED AT TIMES BUT TO HAVE THOSE MEMORIES NOW ARE SOMETHING THAT WE WILL YOU KNOW ALWAYS BE WITH ME, I'M GRATEFUL FOR.

>> SHERRY HAVE YOU CHANGED AT THIS POINT ANY NUTRITIONAL CHANGES OR DOING EXERCISE, HOW ELSE ARE YOU INCORPORATING LIFE INTO YOUR WORLD?

>> SURE, I DID CHOOSE TO LEAVE MY JOB IN DECEMBER.

I JUST WANTED TO SPEND MY DAYS OTHER WAYS WHILE I CAN.

I TRY TO BE HEALTHY.

I ENJOY WALKING MY DOG EVERYDAY.

SEEING FRIENDS AND FAMILY.

AND OF COURSE I TOOK TIME OFF TO ALSO TAKE CARE OF MYSELF.

DO THE U OF M TRIAL STUDY, GO TO OT, JUST TAKE CARE OF MY HEALTH.

>> UH-HUH, TELL ME MORE ABOUT THE TRIAL STUDY AND ITS IMPORTANCE.

>> RATHER THAN TALK ABOUT ONE SPECIFIC CLINICAL TRIAL WE HAVE MULTIPLE, YOU KNOW, CLINICAL TRIALS WHERE WE ARE TRYING TO TEST NEW THERAPIES AND SEE IF THEY ARE EFFECTIVE AND SLOWING THE PROGRESSION OF THE DISEASE.

AND IMPORTANTLY ALSO EVERY PATIENT WHO ENTERS OUR CLINIC WE ASK THEM TO DO A SURVEY OF THEIR PAST OCCUPATIONS AND WHERE THEY HAVE LIVED SO WE CAN UNDERSTAND THEIR ENVIRONMENT AND WE TAKE A TUBE OF BLOOD IF THEY YOU KNOW AGREE AND WE LOOK AT ALL THE ENVIRONMENTAL POLLUTANTS AND TOXINS THAT THEY HAVE BEEN SUBJECTED TO AND WE CAN MEASURE FOR ABOUT THE LAST 20-30 YEARS TO TRY TO AGAIN UNDERSTAND THIS ENVIRONMENT, THIS, YOU KNOW, WHERE PEOPLE FREQUENTLY WILL ASK ME WHY MICHIGAN TOO, NOT JUST WHY ME BUT WHY MICHIGAN SO WE ARE VERY MUCH YOU KNOW OUR PATIENTS PARTNER WITH US, I MEAN AND YOU DO, AND SCOTT DID, THERE ARE PARTNERS IN TRYING TO UNDERSTAND WHAT CAUSES THIS DISEASE AND WHY IT HAS SUCH A HIGH PREVALENCE IN MICHIGAN.

>> AND HENCE THERE IS FOCUS ON RESEARCH.

>> THERE IS A LOT OF FOCUS ON RESEARCH.

IN MY OWN LABORATORY WE HAVE A GRANT FROM THE CENTER FOR DISEASE CONTROL TO DO THE WORK THAT I'VE JUST EXPLAINED TO YOU AND THEN IN PARALLEL WE ARE LOOKING AT WHAT I CALL A POLYGENIC RISK TO UNDERSTAND WHY SOME INDIVIDUAL MAY HAVE MORE OF A GENETIC PREDISPOSITION TO DEVELOP THE DISEASE.

WE ALSO IN MY LAB ARE DOING STEM CELL THERAPIES.

>> INSTRUMENTAL IN THAT.

>> YES.

WE HAVE DONE TO FDA APPROVED CLINICAL TRIALS WITH STEM CELLS IN ALS AND WE ARE CURRENTLY DEVELOPING NEW STEM CELL LINES ALONG WITH UNDERSTANDING HOW THERE ARE CHANGES IN WHAT ARE CALLED RNA AND DNA AND PEOPLE WITH ALS AND HOW WE CAN TARGET THAT FOR THERAPIES.

>> DO YOU FEEL A CALLING, I DON'T WANT TO PUT YOU ON THE SPOT KATIE, BUT TO REACH OUT TOO AND MENTION OTHER WIVES COULD YOU SERVE AS A MENTOR IN THIS SITUATION?

>> I WOULD ABSOLUTELY.

THE SUSAN MAST ALS ORGANIZATION THEY HELP FAMILIES IN SOUTHWEST MICHIGAN, RIGHT?

SO LOCAL FAMILIES WHO ARE AFFECTED BY ALS AND IF SHE EVER REACHED OUT TO ME TO SAY HEY, THIS PERSON WAS DIAGNOSED AND I THINK THAT MIGHT BE HELPFUL TO TALK TO, I WOULD OPENLY DO THAT HANDS DOWN.

>> AND THERE IS A CAREGIVER SUPPORT GROUP TOO THAT THEY ARE NOW STARTING.

>> TALK ABOUT THAT.

LET'S TALK ABOUT THE CAREGIVER SUPPORT GROUP.

>> SO IT'S FOR ANYONE THAT IS CARING FOR AN ALS PATIENT OR EVEN PEOPLE LIKE KATIE THAT HAVE LOST A SPOUSE, THEY CAN STILL COME BECAUSE THEY HAVE SO A WEALTH OF INFORMATION FOR PEOPLE GOING THROUGH IT AND OTHER CAREGIVERS, SO I THINK THAT'S A CAREGIVERS NEED SUPPORT AND AS KATIE WAS SAYING TOO IS I THINK IT'S A BIG PROBLEM FINDING HELP.

FOR PEOPLE WITH THESE CHRONIC ILLNE ILLNESSES.

>> THERE ARE SEVERAL REALLY GOOD BLOGS FOR PATIENTS AND I KNOW THAT MANY OF THE PATIENTS ARE ON BLOGS, WHERE THEY CAN SHARE THEIR EXPERIENCES, THERE IS SOMETHING CALLED PATIENTS LIKE ME AND THERE ARE SIMILAR BLOGS FOR CAREGIVERS AND IT'S VERY IMPORTANT BECAUSE WHAT YOU'RE EXPERIENCING AS A PATIENT YOU CAN REALLY HELP SOMEONE ELSE AS THEY ARE GOING THROUGH IT.

>> IS EARLY DIAGNOSIS IMPORTANT HERE?

>> YES, EARLY DIAGNOSIS IS CLEARLY IMPORTANT.

AND ALSO EARLY INTERVENTIONS ARE IMPORTANT, SO WE KNOW WHILE WE ARE TALKING ABOUT THE CLINICAL TRIALS AND THERAPIES THAT WE DO HAVE WE KNOW FOR EXAMPLE EARLY GOOD BREATHING CAN INCREASE YOUR LIFE SPAN BY ALMOST A YEAR AND A HALF.

SO WE USE SOMETHING CALLED BIPAP OR CPA P THAT PEOPLE WITH SLEEP APNEA USE AND EARLY DIAGNOSIS AND I THINK EARLY DIAGNOSIS IS IMPORTANT BECAUSE A LOT OF THE CLINICAL TRIALS THAT WE HAVE YOU ARE ONLY ELIGIBLE IF YOU HAVE BEEN RECENTLY DIAGNOSED, NOT IF YOU HAVE HAD THE DISEASE FOR A PROLONGED PERIOD OF TIME.

>> AND WHY THE YOUNGER BEING MORE DIAGNOSED?

>> WELL, I MEAN, YOU KNOW, WHY THE YOUNGER, WHY THE ATHLETES LIKE SCOTT, WHY MORE MILITARY SERVICE, WE THINK THAT COULD BE A COMBINATION OF BEING YOUNG BUT A HIGHER INCIDENTS OF ALS IN OUR MILITARY AND OUR MILITARY CLEARLY IS THAT DUE BECAUSE OF THE ENVIRONMENTAL EXPOSURES?

EXERCISE?

SO THERE ARE A LOT OF ASPECTS OF THIS DISEASE WE DON'T UNDERSTAND BUT WE KNOW ASSOCIATIONS, ASSOCIATIONS WITH BEING AN ATHLETE, WITH BEING A FARMER, WITH YOU KNOW WITH BEING IN THE MILITARY SO THERE ARE A LOT OF STRONG ASSOCIATIONS.

WE NEED TO KNOW WHAT WE CALL NOW CAUSATION WHY.

>> KATIE ANY LESSONS ON NAVIGATING THE I DON'T WANT TO GET TOO DEEP HERE BUT IT'S EXPENSIVE AS YOU MENTIONED NAVIGATING THE INSURANCE, LOOKING FOR WAYS TO PERHAPS GOING FROM ONE TYPE OF WHEELCHAIR TO ANOTHER.

>> YEAH, IT IS EXPENSIVE AND YOU KNOW AND ON TOP OF FACING THIS DIAGNOSIS WHICH IS LIFE CHANGING AND TRYING TO FIGURE OUT HOW TO EVEN MOVE FORWARD THAT DAY THEN YOU ALSO HAVE THE STRESS OF WELL HOW ARE WE GOING TO AFFORD THIS?

WE HAVE LIKE I SAID TWO YOUNG KIDS AND SCOTT WORKED AND I WORKED AND HOW ARE WE GOING TO JUGGLE ALL OF THIS.

IT'S DIFFICULT.

AND CARE GIVING THE EXPENSE THAT ONE NEEDS AS AN ALS PATIENT IN THE LATER STAGES OF ALS THEY REALLY NEED AROUND THE CLOCK CARE.

I MEAN AT THAT POINT.

AND THAT IS VERY EXPENSIVE AND THAT IS NOT COVERED BY INSURANCE AND THAT IS SOMETHING THAT IS REALLY BAFFLING ACTUALLY.

I DON'T UNDERSTAND WHY THAT IS.

WE WERE VERY FORTUNATE ENOUGH TO HAVE SO MANY AMAZING COMMUNITIES RALLY AROUND US AND HOST FUNDRAISERS FOR SCOTT'S CARE.

YOU KNOW AND EQUIPMENT AND THAT SORT OF THING WHICH WAS GREAT BUT NOT EVERYBODY HAS THAT AND IT'S REALLY UNFORTUNATE.

>> I'M SURE DR.

FELDMAN THERE IS A TEAM OF CASE MANAGERS TO MAKE DECISIONS.

>> YES.

WE HAVE IN OUR CLINIC WHERE IT'S A CLINIC TEAM THAT CARES FOR PATIENTS, THEY HAVE A PHYSICAL THERAPIST, OCCUPATIONAL THERAPIST, SOCIAL WORKER, NUTRITIONIST, YOU KNOW, OF COURSE OUR NURSE, SOMEONE WHO WHEELCHAIR SEATING AND FITTING SO YOU KNOW WE HAVE AN ENTIRE TEAM BUT STILL AT THE END OF THE DAY IT FREQUENTLY COMES DOWN TO THE PRIMARY CAREGIVER AS KATIE WAS.

AND HOW THAT PRIMARY CAREGIVER WITH YOU KNOW WITH THE PATIENT NAVIGATES THIS MYRIAD OF DECISIONS ONE HAS TO MAKE WITH THIS DISEASE.

>> WAS SCOTT ABLE TO COMMUNICATE WITH YOUR UP UNTIL THE END?

>> HE USED WHAT IS CALLED THE I GAZE TECHNOLOGY WHERE HIS EYES WOULD FOCUS IN ON DIFFERENT LETTERS AND HE WOULD SPELL THEM OUT AND THEN THE COMPUTER GENERATED VOICE WOULD SPEAK.

I MEAN THE KIDS HE WAS INTERACTING WITH THE KIDS UP UNTIL THE VERY END WITH ME UNTIL HIS LAST DAY SO THAT REALLY IS AN AMAZING PIECE OF TECHNOLOGY BECAUSE I NEVER FELT LIKE HE WASN'T THERE.

HE WAS THERE WITH ME, YEAH.

>> AND WE HAVE MULTIPLE WAYS FOR PATIENTS TO CONTINUE TO COMMUNICATE.

IF THEY CAN'T SPEAK BUT CAN USE THEIR HANDS THEY WILL JUST USE A SIMPLE iPAD BUT IF THEY CAN NO LONGER YOU KNOW USE THEIR HANDS OR SPEAK THEN THEY WILL USE THE I GAZE TECHNOLOGY.

>> SHERRY AGAIN WITH YOUR INVOLVEMENT IN CLINICAL TRIALS OBVIOUSLY YOU ARE UNDER SUPERIOR CARE BUT HOW DO YOU STAY STRONG IN CONVERSATIONS LIKE THIS?

>> YOU KNOW, SOMETIMES I'M NOT SURE.

I THINK IT'S COMMUNITY.

AND I JUST WANT TO LIVE MY LIFE STILL.

I WANT TO ENJOY EVERYDAY AND I DON'T WANT TO LOOK TOO FAR AHEAD AND THIS MEANS A LOT TO RAISE AWARENESS.

IF YOU KNOW CAN WE GET A CURE, WHAT IS CAUSING THAT, I THINK THAT HELPS ME TO STAY STRONG.

BUT AGAIN I'M SUPPORTED BY GREAT FRIENDS AND FAMILY, THE CARE AT U OF M. YES.

>> WHAT CAN COMMUNITIES DO TO HELP?

>> WELL, CERTAINLY COMMUNITIES CAN GET INVOLVED WITH YOU KNOW WALKS, FUNDRAISERS BECAUSE THOSE FUNDS THEN GO INTO THESE COMMUNITY FOUNDATIONS LIKE THE ALS ASSOCIATION OR THE SUSAN MAST FOUNDATION THAT PROVIDES SUPPORT RESPITE CARE FOR CAREGIVERS, EQUIPMENT, YOU KNOW, FOR PATIENTS.

SO COMMUNITIES CAN GET INVOLVED IN THAT WAY.

PLUS I THINK IT'S IMPORTANT THAT WHAT WE'VE HEARD TODAY IS THAT IT'S ALSO KIND OF COMMUNITY SUPPORT KNOWING THAT YOU KNOW YOU KNOW SOMEONE WHO HAS ALS AND YOU ARE THERE FOR THEM WHETHER IT'S BRINGING THEM A MEAL OR TAKING THEM TO AN APPOINTMENT.

>> EVERY CASE DIFFERENT BUT KATIE DID SCOTT HAVE PAIN?

>> NO.

NOT PAIN.

NO, NOT PAIN.

>> IT'S NOT PAIN.

>> IT'S USUALLY NOT A PAINFUL DISEASE IT'S USUALLY PAINLESS YOU CAN DEVELOP PAIN FOR EXAMPLE IF YOUR ARM ISN'T WORKING ANY MORE OR YOUR LEG ISN'T, YOU GET SOME TIGHT OR DISCOMFORTABLE OR STIFFNESS AND YOU FEEL KIND OF ACHY AND HE STARTED TO FEEL KIND OF ACHY.

>> SO I MEAN IF YOU ARE STUCK IN A POSITION AND IT'S UNCOMFORTABLE THAT WOULD BECOME FRUSTRATING.

>> IT'S NOT A SHARP PAIN BUT JUST A RESTLESSNESS.

>> I HAVE SOME DISCOMFORT BECAUSE MY ARM KIND OF HANGS WITH THE WEAKNESS IN THIS ARM SO I'M WORKING WITH THE OCCUPATIONAL THERAPIST, WITH EXERCISES, MAYBE A SLING TO GIVE ME SOME SUPPORT BECAUSE GRAVITY JUST PULLS THAT ARM DOWN.

>> YES.

A COUPLE MINUTES LEFT, KATIE, WHAT IS YOUR HOPE FROM THIS?

>> IT WAS REALLY IMPORTANT IN WATCHING SCOTT THROUGH THIS JOURNEY, WE FELT VERY BUSY AT HOME IN OUR HOME LIFE AND HE WAS SUCH AN ADVOCATE FOR THIS DISEASE.

HE SHARED HIS STORY, HIS JOURNEY, THERE IS A DOCUMENTARY DONE ABOUT HIS JOURNEY SPECIFICALLY AND HIS LIFE AND EXPERIENCE WITH ALS WAS ON FULL DISPLAY AND THAT IS DIFFICULT SOMETIMES IN THE FACE OF THIS ILLNESS AND I THINK IT'S IMPORTANT TO CONTINUE TO ADVOCATE FOR THIS DISEASE WHEN I MEET SOMEBODY AND THEY ASK ABOUT IT GO LOOK IT UP, SEE WHAT IT IS.

SCOTT USED TO SAY YOU KNOW I'M NOT ALWAYS GOING TO HAVE MY VOICE BUT YOU ALL WILL, FIND YOUR VOICE, BELIEVE IN IT, USE IT AND TOGETHER WE CAN MAKE A DIFFERENCE.

>> KIDS PLAYING HOCKEY?

>> OUR SON IS PLAYING HOCKEY HE THINKS HE IS GOING TO U OF M WE HOPE.

>> WHO KNOWS.

HEY, WHAT IS YOUR HOPE?

>> SPREADING AWARENESS.

IF SOMEONE IS WATCHING AND THEY NEED SUPPORT, GO TO THE SUSAN MAST FOUNDATION SUPPORT GROUP.

JUST SPREADING AWARENESS IN THIS DISEASE, WHAT CAUSES IT.

A CURE.

>> AND SUSAN MAST.

>> FOUNDATION.

>> WAS SHE -- DID WE LOSE SUSAN TOO?

>> YES, SHE WAS AN ALS PATIENT AND IF I UNDERSTAND RIGHT HER FAMILY STARTED THIS FOUNDATION.

>> YES THANK YOU FOR SHARING YOUR STORY AND AGAIN YOU ADVOCATE FOR SUPPORT GROUPS.

>> YES.

>> I LEAVE YOU WITH THE FINAL WORD DR.

FELDMAN PLEASE TAKE YOUR TIME AND WHAT IS YOUR HOPE FOR THE FUTURE, WE DON'T WANT TO PUT YOU OUT OF A JOB BUT THAT IS NOT GOING TO HAPPEN.

>> I WOULD LOVE TO BE PUT OUT OF THAT PARTICULAR JOB BUT MY HOPE FOR THE FUTURE IS THAT WITH CONTINUED RESEARCH WE CAN UNDERSTAND WHAT CAUSES THE DISEASE AND WE ARE MUCH CLOSER NOW THAN WE WERE SAY TEN YEARS AGO SO PROGRESS IS BEING MADE MY HOPE IS THERE WILL BE CONTINUED FUNDING FOR THE RESEARCH BY THE GOVERNMENT AND BY FOUNDATIONS.

MY HOPE IS THAT OUR PATIENTS WILL CONTINUE TO ENGAGE WITH US AND TRY AND UNDERSTAND WHAT CAUSES THE DISEASE AND HOW WE CAN BETTER TREAT THE DISEASE AND HOW WE CAN BETTER UNDERSTAND ALL DIFFERENT ASPECTS OF THE DISEASE.

AND OF COURSE WHAT'S MY BIG HOPE?

MY BIG HOPE IS FOR A CURE, RIGHT?

AND IT WILL ALWAYS BE THAT WAY.

>> YES, ARE YOU PROFESSING AS WELL AS WORKING WITH PATIENTS?

>> WELL.

>> TEACHING.

>> DO I TEACH?

>> UH-HUH.

>> I TEACH FELLOWS AND RESIDENTS, I DON'T TEACH THE MEDICAL STUDENTS ANY MORE BUT I DO HAVE A FAIRLY LARGE LABORATORY OF YOUNG SCIENTISTS POST DOCTORAL FELLOWS PEOPLE GETTING THEIR DOCTORATE OR PH.D.

WITH ME TRYING TO UNDERSTAND THE CAUSE AND THE CURE.

>> NICE, HOW DO WE FIND OUT MORE ABOUT THE ALS CENTER FOR EXCELLENCE.

>> GO TO THE UNIVERSITY OF MICHIGAN WEBSITE AND TYPE THAT IN AND IT WILL COME UP.

>> OBVIOUSLY ANYTHING THAT IS NAMED CENTER OF EXCELLENCE IS AN EXCELLENT CENTER.

>> THANK YOU SO MUCH.

>> PLAY ON WORDS THANK YOU LADIES SPECIFICALLY FOR SHARING YOUR STORIES IN THE COLLATERAL SHOW THAT WE SAW BEFORE AND CONTINUING TO SPREAD THE MESSAGE ON BEHALF OF ALL OF YOUR ROLES, SO THANK YOU AND BACK TO WORK YOU GO, LET'S FIND THAT CURE.

AND THANK YOU FOR LISTENING, FOR WATCHING AND FOR SPREADING THE AWARENESS FROM THIS EDITION OF FAMILY HEALTH MATTERS.

I'M SHELLY IRWIN THANKS FOR WATCHING AND HAVE A GOOD DAY.

♪