WOMAN: MY MILITARY SERVICE BEGAN
MAY OF 1986.
I WAS IN SAUDI ARABIA, IRAQ, AND KUWAIT.
I WAS A TRUCK DRIVER, AND I WAS A LIGHT-WHEELED
AND HEAVY-WHEELED VEHICLE MECHANIC.
I WAS FIRST DIAGNOSED WITH MS MARCH 12, 2001,
BUT MY SYMPTOMS BEGAN IN THE PERSIAN GULF WAR IN '91.
WHEN I CAME BACK HOME AND I WAS IN LAW ENFORCEMENT,
THINGS WOULD HAPPEN ALONG THE WAY THAT, YOU KNOW,
IF I RAN AFTER A SUSPECT, I WOULD START RUNNING SIDEWAYS
INSTEAD OF STRAIGHT,
OR IF I WALKED, I WOULD HAVE TO SOMETIMES SIT DOWN OR I'D FALL.
AMANDA FARAG: JULIA IS AN AMAZING WOMAN.
SHE HAS SO MUCH ENERGY, SHE HAS SUCH A PASSION FOR LIFE.
WOMAN: SHE HAS MS, AND DEFINITELY MS DOES NOT HAVE HER.
[GIGGLES] SHE'S JUST A PATIENT WITH MS.
SHE'S A WRITER,
SHE WORKS OUT, SHE GOES TO THE GYM,
SHE HAS A FAMILY, AND SHE HAS SOME BLADDER PROBLEMS.
PATRICIA GILHOOLY: MULTIPLE SCLEROSIS VERY COMMONLY
INVOLVES THE BLADDER.
UP TO 90% OF PATIENTS HAVE A BLADDER THAT'S AFFECTED.
FARAG: WHAT WE FIND MS CAN DO IS IT CAN AFFECT THE ABILITY
FOR THE URINE TO BE RETAINED IN THE BLADDER,
SO BASICALLY THE ABILITY OF THE BLADDER TO HOLD URINE
OR THE ABILITY OF THE BLADDER TO GET RID OF THE URINE.
JULIA: I HAD AN URGENCY, I HAD TO GO TO THE BATHROOM
QUICKLY, SUDDENLY, OR I HAD TO GO MULTIPLE TIMES,
OR WHEN I WET, I FIGURED I'M DONE,
I'M ABOUT TO LEAVE, AND I GOT TO GO AGAIN.
GILHOOLY: SO THE PATIENTS CAN COMPLAIN OF URINARY FREQUENCY,
URGENCY, URGE INCONTINENCE,
AS WELL AS HESITANCY--
THAT MEANS DIFFICULTY GETTING THE URINE TO START--
AND SOME PATIENTS, AS THEIR DISABILITY INCREASES, MAY
HAVE TROUBLE ACTUALLY EMPTYING THEIR BLADDER COMPLETELY.
FARAG: SO IF YOU'RE NOT ABLE TO EMPTY YOUR BLADDER,
THAT MEANS THAT YOU'RE RETAINING TOO MUCH URINE,
AND I ALWAYS TELL PATIENTS, IF YOU RETAIN TOO MUCH URINE,
THAT CAN THEN BACK UP TO THE KIDNEYS AND CAUSE
SOME LONG-TERM COMPLICATIONS.
JULIA: IT'S IMPORTANT THAT YOU DO SEE AN MS SPECIALIST
IF YOU HAVE MS.
FARAG: SO HOW ARE YOU DOING TODAY, JULIA?
JULIA: GOOD. FARAG: WHEN JULIA TALKED TO US
ABOUT HER BLADDER ISSUES, THE FIRST THING SHE TALKED ABOUT
WAS THAT SHE WAS WAKING UP A LOT AT NIGHT TO URINATE.
JULIA: I WOULD GET UP AT NIGHT SO MANY TIMES
TO GO TO THE BATHROOM, AND ONE TIME I SAID,
"I WANT TO KNOW HOW MANY TIMES" BECAUSE I WOULDN'T REMEMBER.
SO I REMEMBER ONE TIME, WHAT I DID DO WAS IF--I HAD PERFUME
IN THE BATHROOM OR LOTIONS-- EVERY TIME I WENT TO GO
TO THE BATHROOM, I WOULD PUT ONE ON THE SINK.
SO IN THE MORNING, WHEN I WOKE UP--I REMEMBER THIS
LIKE IT'S YESTERDAY-- THERE WERE 8.
I SAID, "WOW." SO THEN THAT WOULD RUIN MY SLEEP.
FARAG: SO THAT WAS HAVING A PRETTY DRAMATIC IMPACT
ON HER QUALITY OF LIFE, SO YOU CAN IMAGINE,
IF YOU'RE GETTING UP 5 OR 6 TIMES A NIGHT TO URINATE,
IF YOU'RE ALREADY HAVING ISSUES WITH FATIGUE FROM THE MS ITSELF,
WELL, SLEEP DEPRIVATION IS GOING TO MAKE THAT ALL THE MORE WORSE.
I'LL OFTEN TELL PATIENTS, "I NEED TO REFER YOU
TO A NEUROUROLOGIST," WHICH IS A UROLOGIST
THAT SPECIFICALLY SPECIALIZES IN NEUROGENIC BLADDER, WHICH ARE
THE ISSUES WE SEE WITH BLADDER IN MULTIPLE SCLEROSIS.
GILHOOLY: ONE OF THE IMPORTANT THINGS, IN MY OPINION, THAT IS
VERY HELPFUL TO ME TO EVALUATE A PATIENT'S VOIDING STATUS
IS TO ASK THEM TO KEEP A BLADDER DIARY.
JULIA: DR. GILHOOLY ASKED ME TO MAKE A NOTATION OF THINGS.
AND IT WAS GOOD BECAUSE, AT THE SAME TIME, I FORGET
AND MY SHORT-TERM MEMORY'S NOT AS GOOD AS MY LONG-TERM.
SO THEN WHAT I WOULD DO IS I WOULD PUT IT ON MY PHONE.
ON THE NOTE SECTION, I WOULD WRITE THINGS DOWN.
TANKS: IT DOESN'T HAVE TO BE ANYTHING SOPHISTICATED,
JUST A PIECE OF PAPER DAY BY DAY:
HOW MANY TIMES YOU'VE GONE TO THE BATHROOM,
HOW DID YOU FEEL? DID YOU FEEL THAT YOU EMPTIED?
DID YOU HAVE AN ACCIDENT BEFORE YOU GOT TO THE BATHROOM?
WERE YOU EXPERIENCING BURNING OR PAIN DURING URINATION?
AND JUST KEEP TRACK OF IT.
FARAG: WE START WITH URODYNAMIC TESTING,
WHICH IS TESTING OF THE BLADDER FUNCTION
SO WE CAN FIND OUT WHERE IS THE PROBLEM.
THAT'S ALWAYS THE STARTING POINT FOR FIGURING OUT
WHICH MEDICATIONS ARE GOING TO BE EFFECTIVE.
JULIA: SO DR. GILHOOLY AT THE EAST ORANGE VA,
SHE DID A URODYNAMIC STUDY,
AND THAT SHOWED HOW MY BLADDER
WAS WORKING OR HOW IT WAS NOT WORKING,
AND THEN SHE WILL GO AHEAD AND SHOW ME ON THE MONITOR.
THERE WOULD BE A GRAPH WITH DIFFERENT COLORS.
I MEAN, IT WAS REALLY EASY TO UNDERSTAND.
SHE WOULD SAY, "THIS IS WHAT'S HAPPENING AND THIS IS
"WHAT'S NOT HAPPENING, SO IF YOU TAKE THIS MEDICATION,
THIS IS WHAT IT'S SUPPOSED TO DO FOR YOU."
AND NOW IT'S LIKE, "OK, LET'S DO IT."
GILHOOLY: SO THE RANGE OF TREATMENTS COULD RANGE
FROM NO TREATMENT AT ALL TO A VARIETY OF MEDICATIONS
TO RELAX THE BLADDER, TO IMPROVE THEIR URGE INCONTINENCE,
AND TO ASSIST EMPTYING, DECREASING THEIR HESITANCY.
FARAG: AND WHAT DR. GILHOOLY DECIDED TO DO WAS TO START HER
ON A MEDICATION THAT WOULD HELP HER EMPTY HER BLADDER
A LITTLE BIT MORE EFFECTIVELY TO HOPEFULLY DECREASE
THE NUMBER OF TIMES SHE WAS WAKING UP
IN THE MIDDLE OF THE NIGHT TO URINATE.
JULIA: THE MEDICATION WAS REALLY GOOD
WITH BOTH THE FREQUENCY AND THE URGENCY THAT I HAD,
AND THE SLEEP, SO IT HELPED EVERYTHING TOGETHER
AND I THOUGHT THAT WAS TERRIFIC.
FARAG: THERE IS OFTEN BLADDER ISSUES IN MS,
SO YOU REALLY NEED TO DISCUSS THEM WITH YOUR PROVIDER,
AND THERE'S CONSEQUENCES TO LETTING THINGS GO
FOR A LONG PERIOD OF TIME AND NOT BRINGING THEM UP.
GIBSON-GILL: THERE IS SOMETHING THAT CAN BE DONE ABOUT IT,
THAT YOU NEED TO SPEAK TO A MULTIPLE SCLEROSIS SPECIALIST
AND A NEUROUROLOGIST WHO HAS EXPERIENCE
WITH THE NEUROUROLOGIC BLADDER.
GILHOOLY: IT'S VERY COMMON FOR PATIENTS TO ATTRIBUTE
THEIR LACK OF URINARY CONTROL OR DIFFICULTY VOIDING
WITH A MORE COMMON CONDITION LIKE A URINARY TRACT INFECTION
OR AN ENLARGED PROSTATE OR JUST AGE-RELATED INCONTINENCE
IF THAT'S WHAT THEY PERCEIVE,
AND THEY DON'T ALWAYS RELATE IT TO THE MULTIPLE SCLEROSIS.
FARAG: IT'S OFTEN TREATABLE,
BUT IF WE DON'T KNOW ABOUT IT, WE CAN'T TREAT YOU.
WE WANT TO HELP YOU, WE WANT TO GIVE YOU YOUR LIFE BACK,
BUT YOU NEED TO TALK TO US ABOUT IT,
SO LET US KNOW WHEN THERE'S AN ISSUE.
PROVIDERS, I WOULD SAY MAKE SURE TO ASK VERY POINTED,
SPECIFIC QUESTIONS WITH PATIENTS, TEASE OUT
THE BLADDER ISSUES THAT ARE THERE.
THAT'S HOW WE TEASED OUT "OH, WAIT, YOU'RE WAKING UP
THAT MANY TIMES EVERY NIGHT TO URINATE?" AND THE DETAILS
REALLY HELP US IN ESTABLISHING A GOOD TREATMENT PLAN FOR HER.
JULIA: I WOULD SAY TO OTHER VETERANS, AND TO OTHERS WHO
HAVE MS OR ANY TYPE OF ILLNESS, YOU KNOW, DON'T KEEP IT QUIET
BECAUSE JUST BY KEEPING IT QUIET, IT'S KIND OF STRESSFUL.
SO, YOU KNOW, YOU TALK ABOUT IT. IT'S OK.
AND THE MORE YOU TALK ABOUT IT, THE EASIER IT BECOMES.
GILHOOLY: JULIA IS A... A WONDERFUL WOMAN.
SHE IS VERY VIVACIOUS, AND SHE HAS NOT BEEN STOPPED
BY HER MULTIPLE SCLEROSIS, NOT IN THE LEAST.
FARAG: SHE'S JUST A REAL GO-GETTER.
SHE IS SO ENCOURAGING TO US, TO OTHER PATIENTS.
SHE'S ALWAYS JUST POURING POSITIVITY INTO THE AIR.
JULIA: MY ADVICE TO PATIENTS WITH MS AND VETERANS WITH MS
IS NEVER GIVE UP.