Transcript: Solving the Genetic Puzzle 3 | May 31, 1990

(music plays)

Outside a diner, a man reads the paper, another man juggles and a magician plays tricks. The name “The science Café” appears in neon lights on one of the windows. Inside, the waitress shows a menu that reads “The Science Café proudly offers food for thought. Solving the Genetic Puzzle Part three: Science and the Spirit. Producer and director: Michael Kushner. Researcher: Nadine Galszechy.”

A clip shows a man in his late thirties. He has a black full beard, short black hair, and is wearing a white shirt under a brown sweater.
A caption reads “Ken Vance.”

He says THE GENE DISCOVERY IS
GOING TO LENGTHEN THE LIVES
OF BOTH THIS GENERATION
AND THE NEXT GENERATION
AND GENERATIONS TO COME.
THERE'S ABSOLUTELY NO
REASON TO THINK THAT
IS IT NOT GOING
TO HELP US.

A clip shows a woman in her forties. She has long wavy brown hair, and is wearing a blue and red blouse.

A caption reads “Louise Green, R.N. Nurse Coordinator.”

She says WE'VE BEEN WAITING SO
LONG FOR SOME SORT
OF BREAKTHROUGH.
WE'RE VERY HAPPY.

A clip shows a woman in her fifties. She has long gray hair, and is wearing a pink sweater.
A caption reads “Linda Dalton. Physiotherapist.”

She says IT WILL BE A FEW YEARS
BEFORE CHANGES ARE MADE
AND WE WANT EVERYONE AS
HEALTHY AS POSSIBLE
SO THAT WHEN THESE
CHANGES ARE AVAILABLE,
THEY CAN TAKE
ADVANTAGE OF THEM.

Louise says BUT UNTIL THAT HAPPENS,
WE STILL HAVE TO DEAL WITH
SYMPTOMS AND TREAT
WHAT IS HAPPENING
ON A DAILY BASIS
WITH PATIENTS.

A clip shows a doctor with two twin girls in her office. She weighs and measures their height.
Two captions read “Cara Lawler” and “Amanda Lawler.”

Louise continues WE SEE THEM ABOUT
FOUR TIMES A YEAR AND
IT GETS TO BE QUITE A
RENEWABLE FRIENDSHIPS.
FIRST OF ALL, WE WEIGH
THEM AND WE CHECK THEIR
HEIGHT AND WE CHECK
THEIR TEMPERATURE.
AND THAT'S JUST AS
A BASE LINE TO SEE
HOW THEY'VE BEEN DOING;
IT'S VERY IMPORTANT
THAT THEY'RE GROWING.
AND THEN WE HAVE OUR
ROUTINE BLOODWORK
THAT WE DO WHICH CHECKS
ON THEIR LIVER FUNCTIONS
AND STUDIES IF THERE'S
AN INFECTION GOING ON.
WE DO A ROUTINE
URINALYSIS;
WE DO CHEST X-RAYS
EVERY OTHER VISIT.
WE ALSO DO PULMONARY
FUNCTIONS IF THE CHILDREN
ARE OLD ENOUGH.
WE ALSO GET A SPUTUM
SAMPLE EVERY VISIT
FROM EVERY PATIENT.
WE HAVE 530 PATIENTS THAT
WE SEE AT THIS CLINIC,
OF WHICH OVER
200 ARE OVER 18.
SO, WE HAVE A VERY GOOD
PROPORTION OF ADULT PATIENTS.

A clip shows a woman in her thirties. She has short brown hair, and is wearing a gray uniform and a stethoscope around her neck.
A caption reads “Susan Carpenter R.N.”

She says CLINIC TIME CAN BE FUN, BUT
I THINK FOR THE PATIENTS,
THEY'RE A LITTLE
NERVOUS 'TIL THEY GET
THE BASIC HEIGHT AND
WEIGHT AND FIND OUT
HOW ARE THEY DOING.
IS THE DOCTOR GOING TO
BE PLEASED OR IS HE
GOING TO TELL ME TO
GO HOME AND EAT MORE?
IT'S IMPORTANT, I THINK,
THAT THE CHILDREN
DO UNDERSTAND THE DISEASE;
IT MAY HELP WITH COMPLIANCE
BECAUSE IT'S A LONG-TERM
ILLNESS AND COMPLIANCE
IS A BIG PROBLEM OVER YEARS,
ESPECIALLY THE TEEN YEARS.
TEENAGERS USUALLY THINK
THEY'VE GOT THE TREATMENT BEAT.

Linda says UNFORTUNATELY,
PHYSIOTHERAPY HAS
THE LOWEST COMPLIANCE
RATE OF ALL THE REGIMES
THAT SOMEONE WITH CYSTIC
FIBROSIS HAS TO GO THROUGH.

A clip shows Linda with one of the twins and her father in a consulting room.

Linda continues ONE OF OUR MAINSTAYS FOR
A LONG TIME HAS BEEN WHAT
WE CALL POSTURAL
DRAINAGE, WHERE THE BODY
IS PUT IN DIFFERENT
POSITIONS SO THAT GRAVITY
WILL AID THE CLEARING OF
MUCUS TO THE MAIN BRONCHUS.
SO THERE'S PERCUSSION: WE
USE A HAND OR A MACHINE
TO CLAP ON THE CHEST TO
HELP REMOVE SECRETIONS.
THERE ARE VIBRATIONS, WHICH
IS SHAKING OF THE CHEST.
THERE ARE CHEST
MOBILITY EXERCISES.
EXERCISES SUCH AS YOU
AND I WOULD DO, WALKING,
SWIMMING, JOGGING,
THAT TYPE OF THING.
THERE'S AUTOGENIC
DRAINAGE WHICH A LOT MORE
OF THE CLINICS
ARE USING.
IT'S A SET OF BREATHING
EXERCISES TO HELP
CLEAR MUCUS FURTHER
DOWN IN THE LUNGS.
THERE'S USE OF THE PEP
MASK WHICH IS ALSO
BREATHING AGAINST A
RESISTANCE SO THAT
THE LUNGS ARE WORKING
HARDER AND THE SECRETIONS
ARE BEING CLEARED
IN THAT MANNER.
WE START ADVISING THE
PARENTS THAT PHYSIOTHERAPY
SHOULD BE FUN.
IT CAN BECOME A CHORE BECAUSE
OF THE STRUCTURE IN YOUR LIFE
HAVING TO DO THIS TWO TO
THREE TIMES A DAY.
THIS IS A TIME WHEN PEOPLE
DO GIVE UP PHYSIOTHERAPY
OR IT BECOMES SUCH A
FAMILY FIGHTING GROUND
THAT IT'S UNPLEASANT.
IT'S ALSO, THOUGH, WHEN A
LOT DECIDE THAT THIS IS
THEIR LIFE AND THAT'S
WHAT THEY'RE GOING TO DO
AND THEY'RE GOING
TO STICK TO IT.

A clip shows the father of the twins sitting in a room. He is in his clean-shaven, in his forties, with short brown and gray hair, and is wearing a red shirt under a spotted dark green sweater.
A caption reads “Gerald Lawler.”

He says STAFF WAS EXCELLENT WHEN
WE WERE TOLD THEY HAD CF.
THEY WERE JUST
SUPER WITH US.
THEY TOOK US THROUGH
THE WHOLE ROUTINE,
MET THE DOCTORS, AND THE
NURSES THAT ARE WORKING
WITH THE GIRLS NOW,
JUST FINE, FABULOUS.

A clip shows a woman in her forties. She has short wavy brown hair, and is wearing a blue cardigan, blue necklace and blue earrings.
A caption reads “Nancy Lawler.”

She says WHEN WE FOUND OUT THE
GIRLS HAD CYSTIC FIBROSIS
WE WERE VERY SCARED.
WE DIDN'T KNOW
WHAT IT WAS,
WHAT KIND OF
DISEASE OR ANYTHING.
SO, IT WAS
VERY SCARY.

A clip shows one of the girls sitting down, breathing through a nebulizer.

Nancy continues WE KNOW A LOT ABOUT
THE DISEASE NOW
SO THAT MAKES
IT EASIER.
WE LIVE DAY TO DAY,
WE ENJOY DAY TO DAY.
WE DON'T PLAN
TOO FAR AHEAD.
OCCASIONALLY IN MY MIND
I WILL THINK OF THEIR
WEDDING OR THE FUTURE.
I TRY NOT TO THINK
OF THAT TOO MUCH.
WE JUST LIVE AND ENJOY
EACH DAY AS WE CAN,
TO THE FULLEST.

Gerald says SINCE THE DISCOVERY
OF THE GENE,
I THINK IT GIVES US
A BETTER OUTLOOK
AND GIVES THE GIRLS
A BETTER OUTLOOK,
OBVIOUSLY, ON LIFE.
IN THE IMMEDIATE FUTURE,
I DON'T KNOW WHAT IT
ACTUALLY IS GOING TO MEAN
BUT FURTHER DOWN THE ROAD
HOPEFULLY IT'LL HELP THE
GIRLS AND OBVIOUSLY
IT WILL HELP OTHER PEOPLE
AND THAT'S WHAT'S IMPORTANT.
THEY'RE HAPPY,
THEY'RE CONTENTED
AND THAT'S WHAT
YOU WANT IN LIFE.

Nancy says THEY'RE SPECIAL TO ME.
I MEAN, THEY'RE OUR
CHILDREN AND EVERYONE
THINKS THEIR OWN CHILDREN
ARE SPECIAL, BUT I THINK
WE'VE GOT SOME
SPECIAL CHILDREN.

Susan says IT'S NICE TO BE AT A
CENTRE THAT'S SO LARGE.
WE GENERATE A
LOT OF STUDIES
AND RESEARCH
PROJECTS HERE.

A clip shows a woman in her late forties sitting in an office. She has short brown hair, and is wearing a white sweater.
A caption reads “Mary Corey. Biostatistician.”

She says CYSTIC FIBROSIS DATABASE
STARTED IN 1977 WHEN WE
BEGAN TO COLLECT THE LONG
TERM PULMONARY FUNCTION
OF PATIENTS, BELIEVING
THAT WOULD TELL US
ABOUT THE COURSE
OF THE DISEASE.
WE COLLECT A LOT MORE
INFORMATION NOW ON
PANCREATIC FUNCTION,
ON BACTERIOLOGY,
ON MANY OTHER CLINICAL
PARAMETERS THAT CHANGE
THROUGH THE COURSE OF
THE PATIENTS' DISEASE.

A clip shows a woman writing at a computer.

Mary continues THE GENETIC RESEARCH HAS
DEPENDED, QUITE HEAVILY,
ON THE PATIENT
INFORMATION.
FIRST OF ALL, WITH THE
DATABASE WE CAN SELECT
APPROPRIATE PATIENTS FOR THE
BASIC RESEARCH STUDIES.
AND THEN WHEN THEY FEEL
THEY'RE ON TO SOMETHING,
WE CAN GO BACK AND GET
SUITABLE PROFILES THAT CAN
BE CORRELATED WITH THE
BASIC RESEARCH FINDINGS.
THE CF CLINIC STAFF ARE
THE PEOPLE WHO COLLECT
THE BROAD DATA FOR US.
SO, WE PROVIDE THEM WITH
INFORMATION THAT'S USEFUL
IN TAKING CARE OF THE
PATIENTS AND IN PLANNING
THEIR PROGRAMS.
WE'VE COME TO REALIZE
THE NUTRITIONAL ASPECTS
ARE VERY IMPORTANT AND
PERHAPS CAUSE PEOPLE
TO LIVE LONGER, THAT WE
CAN PERHAPS EFFECT
MORE THAN THE PULMONARY
DISEASE ASPECT.

Ken says OH, THE CHANGES
HAVE BEEN TREMENDOUS.
WHEN I WAS A LITTLE KID
I WAS ON A LOW-FAT DIET.
ONE DAY I WENT TO THE
DOCTOR AND HE SAID, NO,
NO, NO IT'S GOT TO
BE A HIGH-FAT DIET.
WE USED TO BE IN MIST
TENTS EVERY NIGHT SLEEPING
IN WHAT LOOKS LIKE AN
OXYGEN TENT, ONLY IT
WAS FILLED WITH THIS MIST
THAT MADE YOU ALL WET.
AND THEY THOUGHT MAYBE
IT HELPED GET THE MUCUS
OUT OF THE LUNGS.
IT DIDN'T WORK
OUT THAT WELL.
THE TECHNOLOGY BEHIND
PANCREATIC ENZYMES
HAS BEEN IMPROVED.
I USED TO TAKE
175 PILLS A DAY.
NOW, IT'S MORE
LIKE 25 TO 30.

A clip shows Ken lying on a 45 degrees stretcher, and using a percussion device on his ribs.

Ken continues BACK IN 1968, THE DOCTORS
PUT ME ON THE MASK
AND INHALATION AND
POSTURAL DRAINAGE.
I'M SUPPOSED TO DO THAT TWICE
A DAY, MORNING AND NIGHT.
NOW, WITH MY PRESENT
LIFESTYLE, I FIND
THAT DOING IT
TWICE A DAY IS A BIT
OF AN INCONVENIENCE.
BUT I DO DO IT ONCE A DAY
AND I DO A THOROUGH JOB
OF IT EVERY MORNING.
SO, I FEEL THAT'S A
REASONABLE COMPROMISE
BETWEEN NOT
DOING IT AT ALL,
WHICH IS WHAT
SOME PEOPLE DO,
AND DOING IT
TWICE A DAY.
BUT IF I'M SICK, I DO IT
TWO OR THREE TIMES A DAY,
I DON'T SLACK
OFF ON IT.
MANY CF PATIENTS JUST
DO WHAT THEY FEEL LIKE.
THEY DON'T FOLLOW
WHAT THE DOCTOR SAYS.
I GET VERY FRUSTRATED
WITH SOME OF MY FRIENDS
WHO DON'T DO WHAT THE
DOCTOR TELLS THEM
TO DO THE THERAPY AND
THEY DON'T DO IT.
EVENTUALLY, IT CATCHES
UP WITH YOU AND THEY
GET VERY SICK AND
SOMETIMES THEY DIE.

A clip shows a woman in her late thirties. She has long wavy brown hair, and is wearing a blue shirt.
A caption reads “Kathy Vance.”

She says I THINK EVERYONE AROUND
KEN AND INVOLVED
IN HIS LIFE IS INTERESTED
IN HIS WELL-BEING,
HIS HEALTH AND THEREFORE,
WE ALWAYS HAVE
A TENDENCY TO
WATCH OVER HIM.
IT DEFINITELY SADDENS
ME TO THINK OF MY LIFE
WITHOUT KEN, SO, WE WORK
ON THE POSITIVE THINGS.
DO EVERYTHING THAT YOU
WANT TO DO BECAUSE YOU
KNOW YOU'RE NOT GOING TO
GET A SECOND CHANCE AT IT.
I LIKE TO THINK THAT OUR
RELATIONSHIP IS STRONGER
BECAUSE WE HAVE THIS
THOUGHT IN MIND;
WE HAVE A TENDENCY TO
SPEND MORE QUALITY TIME
BECAUSE WE KNOW IT
MIGHT NOT BE QUANTITY.
YOU KNOW, THAT INCLUDES
THINGS LIKE GOING
TO THE PARK AND
PLAYING ON SWINGS.
ONE OF OUR THEORIES ON
LONGEVITY IS IN ORDER
TO LIVE TO A GOOD,
RIPE OLD AGE,
YOU HAVE TO
REMAIN CHILDLIKE.
NOT CHILDISH,
BUT CHILDLIKE.

Ken says THE PACE OF RESEARCH
IS ACCELERATING.
I'VE ALWAYS FELT THAT I
WOULD BE ONE OF THE FIRST
TO LIVE, LIVE TO
BE 95 YEARS OLD.
THE FACT THAT THAT MAY
JUST VERY WELL OCCUR
HAS MADE US ECSTATIC.

A clip shows a woman in her forties. She has short wavy red hair, and is wearing a gray suit and a blue and green scarf.
A caption reads “Cathleen Morrison. Executive Director, Cdn. Cystic Fibrosis Foundation.”

She says THIS IS A TRULY
WONDERFUL MOMENT,
THE DISCOVERY OF
THE GENE FOR CF.
IT DOES OFFER HOPE,
I THINK, TO EVERYONE.
EVEN TO INDIVIDUALS WHO
MAY FEEL THEY ARE
GETTING CLOSE TO THE
END OF THE LINE.

A clip shows the twins playing in their home, and Ken working.

Cathleen continues BUT, WE HAVE SEEN NOW THAT
SCIENCE IS MOVING FORWARD
EXTREMELY RAPIDLY.
AND THE METHODS THAT
WERE USED BY Dr. CHOI
AT THE HOSPITAL
FOR SICK CHILDREN,
Dr. REARDON AND OTHERS
ARE METHODS WHICH CAN NOW
BE APPLIED AGAIN AND AGAIN
TO FIND UNKNOWN AND ELUSIVE
GENES WHICH MAY BE
RESPONSIBLE FOR OTHER
HEALTH PROBLEMS
IN OTHER DISEASES.
AND THESE METHODS CAN
BE THEN EXTENDED
TO UNLOCK THE SECRETS OF
OTHER GENETIC DISEASES.

(music plays)

A black slate with a caption appears. It reads “For more information write: The Hospital for Sick Children 555 University Avenue M5G1X8. Cdn. Cystic Fibrosis Foundation 2221 Yonge Street, Suite 601 M4S 2B4.”

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Watch: Solving the Genetic Puzzle 3