Profiles of Strength Julie Charlie Living with sIBM
Swallowing has become more and moredifficult for me I have come very close to choking. Idon't have any dexterity leftmy hands. I can't close my fingers up very well.Right into the puddle, right on Main Street. My whole bodywas traumatized, I was embarrassed. It's scary to think that eventually you're going to be 100 percent depending on somebody A fall could end everything. Sporadic inclusion body myositis or sIBM is a rare devastating inflammatory anddegenerative disorder it is characterized by a slowlyprogressive asymmetric atrophy
and weakness both proximal and distalmuscles patients gradually lose hand function andthe ability to walk experiencing falls and injuries they mayalso suffer from swallowing difficulties which can lead to death from chokingaspiration pneumonia and malnutrition. For patients with sIBM the loss is both physical and profoundlyemotional. I'm Charlie Cleaves. I'm from Saginaw, Maine. I'm 59 years old. My brother and I run a secondgeneration potato and grain farm.
In 2001, I was starting to experience a weaknessmy legs and I couldn't get up. I got to thepoint where I was stumbling, you know, falling down. He started with his primary care he had a variety of different tests. But we ended up going to a neurologist and a variety of tests were ordered, and eventually the biopsy was done. In all Charlie has seen threeneurologists It was very discouraging to go, have all the tests come back, well, they didn't know what was going on.
Finally,2006. I was diagnosed with the inclusion bodymyositis. My left side is very weak. Now, I'm to the point where I feeluncomfortable walking any kind of distance. My name is Julie Milo. I'm 66 years of age, and my husband Larry and I own a plantnursery. I was diagnosed with sporadic inclusionbody myositis2003. And I noticed that I wasfalling
and it was harder and harder for me toget up. I would fall at strange times. I was finding steps very difficult. Blamed it on mybifocals. We were attending our granddaughtersbasketball game and I was going up the bleachers and I fell backwards trying to go up the steps. And my chilen said, quot;Mom you gotta see a .quot; He recognized that I had a problem but wasn't sure what it was
He sent me to a neurologist, who said that there are several forms of myositis and to specifically diagnose sIBM It would need a muscle biopsy and that done and consequently it wasdiagnosed sIBM. I wanted to cry not so much formyself but for Julie. We didn't know what was coming, but I also started to feeling sorry for myself
BA2795 The Balancing Act LineUp
(MUSIC)GOOD MORNING EVERYBODY AND WELCOME TOTHE BALANCING ACT. WE'RE SO GLAD YOU JOINED US THISMORNING. I'M JULIE MORAN.AND I'M OLGA VILLAVERDE. TODAY WE'LL BE TALKING ABOUTIMPROVING QUALITY OF LIFE WHEN IT COMES TO THEVERY REAL MEDICAL ISSUE OF INCONTINENCE.IN FACT, NEARLY 3 MILLION AMERICANS SUFFER FROM ITAT SOME LEVEL.
AND WE'VE GOT SOME HIGH TECHSOLUTIONS FOR THE ONES WE LOVE.PLUS, PSORIASIS. IT'S A CONDITION EFFECTINGNEARLY 5 MILLION AMERICAN MEN AND WOMEN.AND IN IT'S MOST SEVERE FORM, IT POSES A VERY SERIOUS HEALTHPROBLEM. WE'RE GOING TO HAVE THAT STORYFOR YA. AND THE BALANCING ACT STARTSRIGHT NOW. IT'S A REALITY WE ALL FACE AGING.AND FOR A GROWING NUMBER OF
AMERICANS SENIORS,PART OF THAT AGING PROGRESS INCLUDES INCONTINENCE.AS WE OBSERVE BOTH NATIONAL CAREGIVERS AND BLADDER HEALTHMONTH, JOINING US TO HIGHLIGHTPRACTICAL SOLUTIONS FOR A PROBLEMIMPACTING, NOT ONLY SENIORS, BUT THEIR CAREGIVERS AS WELL,IS PHILIPPA LEWIS, CEO FOR SIMAVITA, PRODUCERS OFBREAKTHROUGH TECHNOLOGY; INNOVATIVETECHNOLOGY, HELPING TO IMPROVE
THE LIVESOF THOSE EFFECTED BY INCONTINENCE.GOOD MORNING. GOOD MORNING, OLGA.THANKS FOR BEING HERE. PLEASURE.NOW LET'S TALK ABOUT INCONTINENCE.WHEN IT COMES TO INCONTINENCE, WHAT DO SENIORS AND THOSE WHOCARE FOR THEM EXPERIENCEé WELL, FIRSTLY SENIORS, THEYEXPERIENCE A TREMENDOUS AMOUNT OF LOSS OF DIGNITY. LOSS OFPOWER. AND AS A RESULT OF
THEIR INCONTINENCE WHICH TENDSTO GROW COMPULSORY. WHEN YOU GET OLDER, YOU SIMPLYDO BECOME INCONTINENT. IT'S A FACTOR OF AGING.REALITYé IT'S A REALITY AND I OFTEN SAYTO PEOPLE, YOU WANT GROW OLDé AND THAT'S GREAT, BUT PART OFAGING IS CERTAINLY SOME DISABILITIES.ONE OF WHICH IS INCONTINENCE. WHEN YOU BECOME INCONTINENT ANDYOU'RE VERY ELDERLY, IT'S A VERY UNDIGNIFIED THING.YOU LOSE CONTROL OF YOUR BLADDER
AND PERHAPS YOUR BOWEL AS WELL.AH HUM. AND THEN YOU'RE TOTALLYDEPENDENT UPON YOUR CARERS. NOW TO THE CARERS, OF COURSE,IT'S TREMENDOUS BURDEN FOR THEM. TO BE LOOKING AFTER AN ELDERLYPERSON IS SOMETIMES, JOYFUL IN SOME RESPECTS, BUT THE REALLYBAD PART OF IT IS OFTEN THE INCONTINENCE BECAUSE MOST OFYOUR DAY IS REALLY DOMINATED BY THE CARE OF THEIRINCONTINENCE. IT'S A MAJOR, MAJOR CHALLENGEFOR CARE WORKERS.