Transcript: Multiple Sclerosis, Cathy Crowe | Mar 29, 2004

(music plays)

In animation, against a backdrop of colourful squares in hues of purple, blue and orange, words fly by as clips show people performing different activities: More to Health, More to Education, More to Science, More to Money, More to Family, More to Ontario. Finally, the title of the show reads "More to life."

Mary Ito sits in a studio made of translucent panes that mimic the animated presentation of the show.

Mary is in her late thirties, with short black hair and bangs. She's wearing a gray plaid blazer over a pink blouse.

She says HELLO. I AM MARY I TO AND WELCOME TO "MORE TO LIFE" LIFE. LATER, A LOOK AT A WOMAN DEVOTED TO HOUSING THE HOMELESS. FIRST, IMAGINE BEING TOLD YOU HAVE DISEASE THAT COULD TAKE AWAY YOUR SPEECH, YOUR SIGHT AND YOUR MOBILITY. OFTEN IN THE PRIME OF LIFE. MULTIPLE SCLEROSIS STRIKESES PEOPLE BETWEEN THE AGES OF 20 AND 40. THE EFFECTS BOTH PHYSICAL AND MENTAL CAN BE DEVASTATING. BUT WITH NEW DRUG THERAPIES AND GREATER UNDERSTANDING, PATIENTS HAVE A LOT TO BE HOPEFUL ABOUT. HERE TO DISCUSS TREATMENT AND HOW TO COPE WITH THE ILLNESS, DR. BRENDA BANWELL AND Louise Giroux...

Brenda is in her thirties, with straight brown hair in a bob. She's wearing glasses, a black blazer and a pale pink blouse.
Louise is in her fifties, with curly red hair. She's wearing glasses, a red blazer and a black blouse.
A picture of her book appears briefly on screen. The cover features a small drawing of two people dancing with their hands clasped.

Mary continues WE WANT TO HEAR FROM YOU. MAYBE YOU HAVE MS AND WOULD LIKE TO SHARE YOUR STORY M MAYBE YOU HAVE A FAMILY MEMBER HAVING TROUBLE COPING.

A caption reads "416-484-2727. 1-888-411-1234."
Then, it changes to "moretolife@tvo.org"

Mary says HELLO BRENDA AND LOW WEEZ, THANKS FOR COMING IN. TELL US YOUR STORY ABOUT MS.

A caption appears on screen. It reads "Louisse Giroux. Psychotherapist."

Louise says I SUPPOSE AROUND 18 YEARS AGO I WAS DIG NIECED. I EXACERBATED ACUTELY WHICH IS NOT ALWAYS A PATTERN. IT MEANS WITHIN THREE DAYS NOT WALKING, HAVING NO BLAD SDER FUNCTION I COULD CONTROL. MEANS MY EYES ARE BLURRY, MY HANDS ARE LIKE NOODLES.

Mary says WITHIN THREE DAYS? BEFORE THAT YOU HAD NO SYMPTOMS?

Louise says WELL, NO, IF YOU TRACK THE YEARS, I CAN SPOT TIMES WHEN THERE WERE BUT THEY ARE SYMPTOMS THAT ARE OFTEN HIDDEN IN... THERE COULD BE OTHER THINGS AS WELL. SO YOU ARE TIRED, FATIGUE, THE SUN GETS TO YOU, BLADDER INFECTION. EVERYBODY CAN HAVE THAT. NOTHING THAT PRONOUNCED, NO. THAT BEGAN THE JOURNEY

Mary says SO YOU HAVE LIVED WITH IT FOR 18 YEARS. WHAT KIND OF MS DO YOU HAVE?

Louise says EXACERBATION REMISSION. IT MEANS THAT I HAVE THESE ATTACKS THAT I SUPPOSE TO YOU ABOUT. THEN I HAVE FORTUNATELY MANY PERIODS OF REMISSION. THE SYMPTOMS ARE ACTIVE AS WE SPEAK. BUT THEY ARE NOT AS PRO NOUNGSED AND THEY DON'T IMPAIR MY DAY TODAY FUNCTIONING.

Mary says DAY TODAY, OTHER THAN WHEN YOU HAVE AN ATTACK, WHAT IS LIFE LIKE FOR YOU LIVING WITH MS? WHEN YOU WAKE UP IN THE MORNING DO YOU THINK, WELL, WHAT IS TODAY LIKE? I DON'T KNOW? OR IS IT LIKE I KNOW I HAVE TO LIVE WITH THIS TODAY AND TOMORROW?

Louise says I DON'T WAKE UP WITH FEAR. I REFUSE THAT. I WAKE UP WITH THE KNOWLEDGE THAT MY DAY NEEDS TO BE STRUCTURED. ITS GOOD TO BE CONTROLLING WHEN WE MANAGE AN ILLNESS. MY SCHEDULED HAS TO BE VERY STRUCTURED IN TERMS OF ENERGY. FIRST I NEED TO GIVE MY BODY TIME TO WAKE UP. THAT IS A METAPHOR FOR KICKING INTO THE DAY. SO IT WILL TAKE ME A WHILE

Mary says THESE COULD BE COMMON TO YOU EVERY DAY?

Louise says YES IF I CAN GO TO THE BATHROOM AND VOID, I AM EXCITED. BECAUSE THERE ARE A LOT OF PROBLEMS WITH VOIDING AS WELL.

Mary says YEAH. SO THAT IS...

Louise says TO ANSWER YOUR QUESTION, I WOULD SAY I AM AWARE OF IT HOWEVER IT DOESN'T OVERPOWER MY LIFE. I MANAGE WITHIN IT

Mary says BRENDA, CAN I REQUEST YOU, SHE HAS LIVED WITH THIS 18 YEARS. YOU KNOW, YOU ARE FUNCTIONING DAY TODAY. IS THAT A TYPICAL CASE TO HAVE MS FOR THAT LENGTH OF TIME? AND STILL FUNCTION WELL?

The caption changes to "Doctor Brenda Banwell. Paediatric Neurologist."

Brenda says YES. MANY PEOPLE HAVE THE SYMPTOMS YOU ARE DESCRIBING. IF THAT IS THE CASE THEY CAN DO QUITE WELL IN BETWEEN. SO THEY LIVE WITH A CONSTANT REMINDER BUT NOT NECESSARILY ONE THAT LIMITS THEM. THE SECONDARY PHASE OF IF DISEASE WHEN DISABILITY IS MORE LIKELY TO OCCUR CAN HAPPEN 10 TO 20 YEARS OR NEVER. THEY MAY NOT REQUIRE PERMANENT PHYSICAL DISABILITY UNTIL MANY YEARS INTO THE DISEASE OR NOT AT ANY REAL POINT. ABOUT 50 TO 80 MERE SENT OF PATIENTS WILL GET A SECONDARY DISEASE WHERE THEY ACQUIRE FURTHER DIZ ABILITY. THAT USUALLY HAPPENS BETWEEN 10 AND 15 YEARS AFTER THE FIRST ATTACK. MANY MANY PATIENTS ARE WELL IN IT, 20, 25 YEARS BEFORE THEY EXPERIENCE THAT PHASE IF THEY ARE GOING DO

Mary says DID YOU SAY THE MAJORITY OF PATIENTS WILL PROCEED ON TO THAT NEXT STAGE?

Brenda says ON BASED ON THE DATA THAT WE HAVE OF UNTREATED PATIENTS CURRENTLY. NOW WITH NEW THERAPY WE ARE HOPING THE DELAY OR ITS PREVENTSED.

Mary says OKAY.

Brenda says ALL OF THOSE THINGS CAN BE MANAGED MUCH BETTER NOW THAN 30 YEARS AGO.

Mary says ARE THE MAJORITY OF PATIENTS, DO THEY START OFF WITH THIS KIND OF MS?

Louise says YES. THE MAJORITY DO. CERTAINLY THE YOUNGER PATIENTS. IN OLDER INDIVIDUALS THE PROGRESS ZIVE FORM WHICH YOU DON'T HAVE IS WLEN THERE IS NO ATTACKS. ITS MORE OF A CHRONIC DETEAR YAIGS. THAT IS RARE IN YOUNG PATIENTS. WE DON'T SEE THAT IN CHILDREN BUT 20 PERCENT OF MS PATIENTS DEVELOP THAT

Mary says I REMEMBER YOU DESCRIBED LIVING IN THE GRIP OF AN ATTACK AS BEING IN A SUR SURREAL STATE. WHAT DID YOU MEAN BY THAT?

The caption changes to "Today's topic: Multiple sclerosis."

Louise says I AM NOT SURE. [LAUGHTER] IT SIMPLY IS DIFFICULT TO EXPLAIN. I REMEMBER TRYING TO EXPLAIN TO A PHYSICIAN THAT I FELT NUMB. THAT MY HANDS WERE NUMB OR MY FEET WERE NUMB. THE BESTS I COULD COME UP WITH WAS ITS LIKE IF YOU GO TO THE DENTIST YOUR MOUTH IS FROZEN BUT YOU GO HOME AND EAT ANY WAY. FEELS LIKE WALKING ON A FOOTBALL. THAT IS THE SURREALNESS. THE PRECIPITATION OF IT. WHAT HAPPENED? I WAS DOING THIS, NOW, YOU KNOW.

The phone numbers and email reappear briefly.

Mary says I CAN IMAGINE TOO THAT WHEN YOU GET A DIAGNOSIS THAT HAS TO BE SURREAL.

Louise says WELL THAT IS CONTESTABLE. USUALLY THEY DON'T COME QUICKLY. DIAGNOSING IS A LONG PROCESS FOR ALL THE RIGHT REASONS. ITS A SHOCK BUT A SENSE OF RELIEF. BECAUSE IF YOU CAN TODAY TAKE A CUP AND DRINK THEN TOMORROW YOU SHAKE, YOU ARE GOING TO THINK WHAT IS WRONG WITH ME? I AM WORRIED, CRAZY, WHATEVER. SO THE SYMPTOMS ARE SO MASKED, I SUPPOSE. SO PEOPLE OFTEN THINK I AM REALLY FABRICATING THIS. OR PEOPLE WILL THINK, YOU KNOW, SHE DOESN'T WANT TO GET GOING. SHE IS LAZY OR THOSE AWFUL LABEL WORDS. THE SURREALISM IS THE DIFFICULTY IN PINPOINTING IT. ITS NOT SIMPLE TO DIAGNOSE, TREAT, ANYTHING

Mary says WHAT IS INTERESTING TOO, WHEN I ASKED YOU ABOUT GETTING UP IN THE MORNING, LIVING DAY TODAY, YOU SAID YOU KNOW I REFUSE TO BE... TO GET UP NOT OPTIMISTICLY. WAS THAT ALWAYS YOUR ATTITUDE?

Louise says ITS MY LIFE ATTITUDE SINCE I WAS BORN BUT IT WASN'T MY ATTITUDE FOR A COUPLE YEARS AT LEAST. MAKING ME VERY HUMAN. THERE IS A HUGE AMOUNT OF EMOTIONAL ADJUSTMENT. NOT UNLIKE ANY LOSS THERE IS A LOSS BECAUSE YOU HAVE A ILLNESS.

Mary says YES.

Louise says YOU NEVER GET BACK EXACTLY WHERE YOU WERE. SO THOSE FIRST TWO YEARS I WOULD... NO, IT WAS MORE IF I CAN DRAG MYSELF... IF I CAN DRAG ONE FOOT OUT OF THE BED, I MIGHT BE INTERESTED INPUTTING ON MY SLIPPERS. FOR A LOT OF PEOPLE ITS A PHYSICAL PROBLEM BUT ITS ALSO A DEPRESSED PROBLEM. ITS AN EXHAUSTING PROBLEM. SO IT CERTAINLY WAS NOT IN THE BEGINNING, NO

Mary says WHAT LED YOU TO THEN RESUME THAT ATTITUDE YOU USED TO HAVE?

Louise says THAT IS THE CHOICE. I CAN GET UP AND HATE IT OR I CAN GET UP AND SAY, WELL, HOW CAN I WORK WITH IT TODAY. IS THERE ANYTHING ELSE? IF I NEGLECT THAT KNOWLEDGE THAT I HAVE IT, I GET IN TROUBLE.

Mary says I WANT TO READ A LITTLE BIT OF WHAT YOU WROTE. I WAS STRUCK BY THIS IN YOUR BOOK, TAKING THE LEAD. YOU CALL IT THE BEAST. MS, IN YOUR BOOK. YOU SAID EVER SO SLOWLY I DISCOVERED I COULD INFLUENCE THIS DISEASE. PERHAPS IT HELD THE UPPER HANDS IN THE PHYSICAL PART OF WHO I WAS BUT IT HAD NO CHARACTER, NO SPIRIT, NO INTELLECT. I REALIZED I WAS IN CHARGE AFTER ALL. I LOVE THE WAY YOU PUT IT IN ITS PLACE IN THAT PARAGRAPH.

Louise says IT IS BEAST. THERE ARE MANY THINGS I CAN DO TO RESPECT IT. I CALL IT RESPECT IT. ONE WOULD BE GETTING PROPER SLEEP. ONE WOULD BE LEARNING TO RELAX. ONE WOULD BE NUTRITION. ONE WOULD BE PUTTING ON NAIL POLISH OR MAKEUP BORE BODY IMAGE. THAT IS THE WAY. IT CAME TO ME WHEN I WAS WATCHING BEAUTY AND THE BEAST.

Mary says WHAT SCENE?

Louise says THEY WERE DANCING. WHEN YOU SEE THE TINY ACTRESS AND THE 7 FOOT BEAST, ITS VERY CLEAR TO ME. SHE WAS STILL POWERFUL.

Mary says YEAH YEAH. BRENDA, IT MUST BE QUITE A DIFFERENT THING WHEN YOU ARE DEALING WITH CHILDREN. CAN YOU TALK ABOUT THAT? THE ISSUES THEY HAVE TO COPE WITH. BEYOND THE PHYSICAL. THE MENTAL PART OF CHILDREN WITH THE DISEASE.

Brenda says FIRST ITS A PERCEPTION THAT THIS IS DISEASE THAT DOESN'T HAPPEN IN CHILDREN.

Mary says WHAT ARE THE FIGURES THERE?

Brenda says THE STATS ARE CURRENTLY THAT 5 PERCENT OF ALL PEOPLE WITH MS WOULD START IN CHILDHOOD. IF YOU ASKED MS PATIENTS WHEN THEY THINK THEIR DISEASE STARTED, ALMOST 20 PERCENT SAY THEY IN RETRO EXPECT NOW REMEMBER PARTICULARLY IN THE TEENAGE YEARS THEY NOW ATTRIBUTE TO MS.

Mary says YOU TOO?

Louise says YES.

Brenda says SO IT HAPPENS MORE THAN WE REALIZE. THE ABILITY TO DIAGNOSE CHILDREN ADDS COMPLEXITY BECAUSE PEOPLE ARE NOT THINKING OF IT. PARENTS CERTAINLY ARE NOT THINKING OF IT. SO WE FACE THAT HURDLE OF DISBELIEF. IN FAMILIES WITH FIVE AND SIX YEAR-OLD, THERE IS SHOCK THAT THIS COULD POSSIBLY BE AFFECTING THEIR CHILD. WE HAVE TO WORK THROUGH THAT PHASE WHICH AFTER FKTS THE PARENT MORE THAN THE CHILD. YING ARE INVINCEABLE. TEENAGERS ARE INVINGSABLE AS FAR AS THEY ARE CONCERNED. THEY TEND TO ACCEPT IT QUICKLY, ASK QUESTIONS LATER ON. THERE IS AN ACCEPTANCE PHASE FOLLOWED BY A GETTING ON WITH LIFE PHASE. THEN AS THEY GET TO THE UNIVERSITY, WE TRANSITION THEM TO ADULT MS CARE, THEY HIT DOWN WITH US AND HAVE A LISTS OF QUESTIONS, CAN THE KIDS THEMSELVES. THEY HAVE VERY DETAILED QUESTIONS. PRIOR TO THAT MOST QUESTIONS ARE ASKED BY THEIR PARENTS. IN TERMS OF CHALLENGES THE KIDS FACE, THE BIGGEST IS FATIGUE. PHYSICALLY THEY DO WELL. THE FIZ KABLT DISTABLT IS NOT SOMETHING WE SEE A GREAT DEAL OF EXCEPT FOR RELAPSES. SEPARATE THAT THAT, PHYSICALLY THEY LOOK WELL. WHICH HAS A PRO AND CON. THE PRO SIDE IS THEY ARE DOING WHAT THEY WANT TO DO. THE DOWN SIDE IS PEOPLE DON'T UNGS THAT THEY ARE DOING IT WITH FATIGUE, WITH SOME TINGLING.

Mary says SURE. AS PRACTICAL AS THE TEACHER, OH, HE LOOKS WELL, WHY ISN'T HE GETTING HOMEWORK DONE?

Brenda says EXACTLY. THERE IS A TEACHING CURVE TO TEACHING TEACHERS THAT THERE ARE TIMES WHEN FIVE EXAMS IN FIVE DAYS IS NOT A PRACTICAL OUTCOME FOR THESE KIDS. THE LEDGE OCCASION WITH THE SCHOOLS WE HAVE BEEN ABLE TO TALK TO DIFFERENT EDUCATORS AND SAY IS IT THE KEY POINT OF THE CHILD'S EDUCATION PROFILE THAT THEY DO ALL EXAMS IN THIS ONE WEEK? IF THE INDIVIDUAL WILL BE SO TIRED BY THE ENDS OF ONE EXAM WOULD THEY NOT DO TWO A WEEK? THAT IS BE DONE

Mary says WE STILL DON'T KNOW THE CAUSE OF MS, DO WE?

Brenda says WE DO NOT. ITS THOUGHT BY MOSTS EXPERTS THAT ITS AN ENTERPLAY BETWEEN WHAT WE SEE IN THE ENVIRONMENT, VIRUSES, HEALTHY EATING, HEALTHY LIFESTYLE, ETHINICITY, MERGING THOSE TOGETHER AND SEEING WHAT HAPPENS TO AN IMMUNE SYSTEM IN ALL THAT. ITS NOT ONE THING. IT'S KNOTS EXPOSURE TO ONE PARTICULAR AGENT. ITS NOT ONE VIRUS OR TRIGGER. ITS ENTERPLAY BETWEEN THE WHOLE THING

Mary says TELL ME PHYSICALLY WHAT DOES ENDS UP HAPPENING? WHAT IS GOING ON WITH THE PERSON?

Brenda says INSIDE THE BRAIN WHAT IS HAPPENING IS THE UM MUN SYSTEM NORMALLY THERE TO ATTACK VIRUSES RECOGNIZING SOMETHING IN THE TRIGGER THAT THEY SEE THAT LOOKS SIMILAR IN STRUCTURE TO A PROTEIN IN THE BRAIN. THIS PROTEIN COMPLEX IS THE WHITE MATTER. IN LAYMEN'S TERMS ITS THE INSULATING WIRE, WHAT SENDS A MESSAGE FROM ONE BRAIN CELL TO THE NEIGHBOR. WITHOUT IT WOULD WOULD NOT BE ABLE TO SENDS THE LIGHT NENNING FAST MESSAGES REQUIRES. WHEN THIS IS INFLAMED OR IRRITATED, ITS BROKEN INTO PIECES AND THE MESSAGES HAVE TO HAVE A GAP WHERE THEY ARE COMING ALONG THE HIGHWAY SMOOTHLY AND HIT A REGION WHERE THERE IS INFLAMMATION AND THE MESSAGE GOES SLOWLY. DURING THAT PROCESS THERE IS DYSFUNCTION IN THE MESSAGE

Mary says COULD YOU SAY WHEN THAT GAP HAPPENS THAT IS WHEN A PERSON CAN'T SPEAK PROPERLY? CAN'T MOVE PROPERLY?

Brenda says BASICALLY YES. WE KNOW THERE IS A LOT OF THINGS THAT HAPPEN IN THE BRAIN THAT WE DON'T SEE PHYSICALLY. ON AVERAGE THERE ARE TEN CHANGES ON AN MRI IMAGE OF THE BRAIN, ONLY ONE OF PAY THE PATIENTS HAS DIRECTLY EXPERIENCED.

Mary says SO IS THAT HOW WE KNOW WHETHER A PERSON HAS MS? IS THAT NOT EVEN POSSIBLE?

Brenda says MS IS STILL TODAY A CLINICAL DIAGNOSIS. YOU MUSTS HAVE EVIDENCE OF NEUROLOGIC DYSFUNCTION THAT INVOLVES MORE THAN ONE AREA OF THE BRAIN. IT HAS TO BE SEPARATED AND TIMED. IT MAY BE THE FIRST ATTACK BUT ITS NOT ENOUGH TO DIAGNOSE IS DISEASE. THE MRI IS SO HELPFUL ITS PART OF THE DIAGNOSTIC CRITERIA NOW.

Mary says LET'S TAKE SOME PHONE CALLS. WE HAVE ANNA ON THE LINE.

The Caller says HI. I WANT TO SAY I WAS DIAGNOSED RECENTLY, FEBRUARY 2001, AFTER FIGHTING ATTACKS FOR 19 YEARS I WAS DIAGNOSED THROUGH MRI. I DID SUFFER DEPRESSION, MANY THINGS, LOSS OF EMPLOYMENT, NEW HOUSE. I TOOK HOLD OF MY LIFE I DID GO ON THE PAXIL FOR DEPRESSION. I GAINED 30 POUNDS AND DECIDED TO GO ON A EXERCISE PROGRAMME, SWIMMING. I STOPDZ SMOKING, LOST 30 POUNDS AND FOUND MY FATIGUE THAT YOU WERE TALKING ABOUT HAS INCREASED DRAMATICALLY. JUST FROM BEING ON THE EXERCISE PROGRAMME. SO I WANTED TO SAY THAT NOT NECESSARILY DO YOU HAVE TO TAKE MEDICATION. IT IS THERE ARE FOR PEOPLE THAT ABSOLUTELY DO NEED IT. HOWEVER, IF YOU GRAB THE BULL BY THE HORNS AND FIGHT ARE FOR IT YOU CAN HAVE SOME OF YOUR LIFE BACK. THAT IS ALL I WANT TO SAY. ALSO I WANT TO QUOTE ONE THING FROM THE BOOK, WHICH IS BEAUTIFUL. I AM WHERE I AM TODAY BECAUSE OF MY SELF ASSURANCE AND THE POWER OF MY CONVICTION IS THE POWER OF WHO I AM. ITS A GREAT BOOK. EVERYBODY SHOULD READ IT.

Louise says MONTEL HAS MS.

Mary says THANK YOU SO MUCH, ANNA. DR. BANWELL, SHE MENTIONED MEDICATIONS. DIDN'T SOUND AS IF SHE IS TAKING MEDICATIONS. HOW FAR HAVE WE COME AS FAR AS TREATMENT?

Brenda says THE TREATMENTS WE ARE USING FOR MS ARE FOR THE RELAPSING REMITTING FORM. THE FORM OF THE DISEASE PROGRESS ZIVE FORM IS BEHIND. THERE ARE FOUR DRUGS APPROVED IN CANADA, A FIFTH FOR PAY SHENLTS THAT VERY VERY AGGRESSIVE DISEASE. SO THE FOUR DRUGS APPROVED, THREE ARE ENTERFERON WHICH DOES INTERFERE WITH THE IMMUNE SYSTEM.

Mary says YOU ARE NODDING. ARE YOU ON THAT?

Louise says YES. I SELF INJECT EVERY SECOND DAY WITH ENTERFEARON B.

Mary says RIGHT. WHAT DIFFERENCE DOES THAT MAKE TO YOU?

Louise says MEDICALLY, I COULDN'T ANSWER THAT. I DON'T THINK ITS POSSIBLE. BUT I BELIEVE THAT IT IS A GUARD DESIGNED TO STABILIZE. THE EVIDENCE I HAVE IS IN THE EIGHT YEARS THAT I HAVE DONE SO I HAVE HAD 1 KPAS NATION.

Mary says ONE ATTACK?

Louise says WHERE PRIOR TO THAT I HAD EVERY SIX MONTHS I WAS HOSPITALIZED AND HAD FEVER EXACERBATION. I AM NOT SCIENTIFICALLY PROVING BIT YOU... IT BUT I BELIEVE IT MAKES A DIFFERENCE SNCHL HOW LONG AGO WOULD YOUR ATTACK HAVE BEEN?

Louise says IN THE YEAR 2000.

Mary says OKAY. SORRY TO INTERRUPT.

Brenda says SO THAT IS WHAT THE DRUGS ARE DESIGNED TO DO. THERE ARE THREE DRUGS AND WHAT THEY DO IS REDUCE THE NUMBER OF ATTACKS AND MAYBE MAKE THEM MILDER. IT RELATES TO THE FACT THAT THE MEDICATION IS DESTROY ND THE STOMACH, AND THAT IS A HURDLE FOR ANY PATIENT, PARTICULARLY THE VERY YOUNG CHILDREN. ALTHOUGH LIKE ANYTHING I THINK PATIENTS ACCEPT IF THEY BELIEVE THIS IS HELPFUL, I BELIEVE THEY HAVE A ROLE TO PLAY. WE THINK BASED ON RESEARCH AND FOLLOW-UP OF PATIENTS ON THE MEDS FOR A LONG TIME THEY MAY MAKE A DIFFERENCE 10, 15 YEARS LATER AS WELL.

Mary says SLOWING THE DISEASE DOWN?

Brenda says CORRECT. THERE IS MRI EVIDENCE THIS IS SA BIN FET. PATIENTS ON THERAPY A LONG TIME ARE DOING BETTER.

Mary says HAS IT BEEN PROVEN THAT THESE DRUGS DO NOT HELP PEOPLE WITH A SECONDARY PROGRESS GREGSZ?

Brenda says IF THE SECONDARY PROGRESS IS CHARACTERIZED BY ATTACKS.

Mary says ALL RIGHT.

Brenda says IF THE PATIENTS AT THE PHASE WHERE THEY ARE NOT HAVING ATTACKS, JUST INCREASING DIVE TUL TI, THE EVIDENCE IS POOR THE MEDICATIONS WORK. THERE ARE OTHER THINGS IN RESEARCH TO HELP PATIENTS AT THAT STAGE

Mary says I KNOW I HAVE HEARD OF PEOPLE WHO HAVE SECONDARY AND THEY ARE DESPERATE FOR THESE DRUGS. THERE IS REALLY NOTHING FOR THEM.

Louise says OF COURSE.

Brenda says ABSOLUTELY. I THINK THE MAIN REASON FOR THAT IS THER ARELY PART OF MS IS CHARACTERIZED BY THE IMMUNE ATTACK. THE SECOND IS COMPONENT FROM THE CELL LEVEL. THEY ARE ENTER MINGLED FROM THE BEGINNING BUT WHICH ONE CAUSING HAVOC IS THE PART IN THE BEGINNING.

Mary says RIGHT. WHEN YOU COUNSEL PEOPLE, WHAT ARE THE MAIN ISSUES THEY BRING TO YOU?

Louise says A HUGE SENSE OF LOSS. I CAN PARALLEL IT TO DEATH, THE PROCESS WHEREBY ONE'S SELF ESTEEM, FINANCIAL STATUS, LOVE RELATIONSHIPS, SEX LIFE, PARENTING, IDENTITY, SPIRIT UTILITY, YOU NAME IT, ITS UNDER FIRE. OFTEN PEOPLE ARE REFERRED TO ME ARE UNDER GOING DEPRESSION, SUICIDE IDEATION. ITS VERY LOGICAL WHEN YOU THINK ABOUT IT. THEY NEED TO TALK IT THROUGH TO SOMEONE SUCH AS MYSELF WHO DOESN'T GET SCANDALLIZED BY WHAT THEY HAVE TO SAY WHERE LOVED ONES WOULD. SO I BECOME A STRANGER TO WHOM THEY CAN SAY ANYTHING THEY PLEASE. THAT IS A HUGE COMPONENT IN FAMILIES

Mary says HOW OFTEN DOES IT HAPPEN WHEN THE PERSON, THE PATIENT WILL THEN BRING IN OTHER MEMBERS, LIKE FAMILY OR HUSBANDS OR WIVES.

Louise says I WISH IT WOULD HAPPEN ALWAYS. MY FATHER HAD MS. SO I... I WAS BORN AFTER HE WAS DIAGNOSED SO I DON'T KNOW LIFE WITHOUT IT. I WITH AS SURE YOU IT LIVES IN FAMILIES. IT ECHOES IN FAMILIES AS TO THE PARENTS OF THE CHILDREN YOU WORK WITH, THE IDEAL WOULD BE EVERYONE WHO IS TOUCHED WOULD COME. HAVING SAID THAT, SOME CONVERSATIONS I THINK WOULD REMAIN INTIMATE. THAT SOME CONVERSATIONS WITH THE SPOUSE FOR EXAMPLE WHO WOULD SAY I WANT TO KILL HER, I WANT TO WRING HER NECK, YOU KNOW, SHE DOESN'T WANT TO DO ANYTHING, HE IS PROBABLY RIGHT. SO HE NEEDS TO HAVE SOMEONE TO SAY THAT TO THAT WON'T JUDGE HIM FOR THAT. SOME SESSIONS ARE GOOD TO HAVE INDIVIDUALLY, GIVING PEOPLE AIR TIME

Mary says IS THAT HALF OF IT? ONCE HE SAYS I JUST WANT TO KILL HER, DOES THAT, GOD I FEEL BETTER HAVING SAID THAT?

Louise says RIGHT. I SAY WELL THAT MAKES SENSE TO ME. THEN OKAY. OF COURSE ITS LIKE IF YOU ARE ANGRY, KICK THE CAT, NOT THE CAT. [LAUGHTER] BUT IF YOU CAN EXPRESS THAT, ITS DEFLATED.

Mary says LET'S TAKE ANOTHER CALL HERE. WE HAVE JOANN ON THE LINE. HI.

The Caller says CAN YOU RECOMMEND COMPLIMENTRY THERAPIES FOR ANY TYPE OF BUDGET?

Mary says THIS QUESTION COMES UP ALL THE TIME. YOU TOO? YEAH.

Brenda says THERE IS A BIG GAP STILL BETWEEN ULTIMATE MEDICINE, COMPLIMENTRY MEDICINE AND THE MEDICAL FIELD OF TRADITIONAL CANADIAN MEDICINE. WE NEED TO LEARN FROM EACH OTHER. FAMILIES AND MEDICARE HEALTH CARE TEAMS, BECAUSE WE ARE A TEAM, WITH THE PARENT AN PATIENTS DESIRES TO LOOK AT THEORIES

Mary says HAVE YOU MADE INROADS THERE?

Brenda says THERE ARE STUDIES BEING DONE. THERE IS A HUGE AMOUNT OF INFORMATION THAT NEEDS TO BE GAINED. THERE ARE A LOT OF THINGS THAT NEED TO BE DONE. A LOT OF COMPLIMENTRY THEORIES ARE UNLICENSED AND UNSTUDIED WHICH MAKES ME NERVOUS M WHEN I PRESCRIBE A MEDICATION I TAKE RESPONSIBILITY. IF I AM TO ENDORSE A PRODUCT THAT IS NOT REGULATED, NOT SCREENED, IT TAKES A GREAT DEAL OF CONCERN. SO I THINK THERE IS A VARIETY OF THINGS THAT NEED TO BE DONE. THE PERCEPTION OF ALTERNATIVE MEDICATIONS BEING UNHARMFUL IS INACCURATE. THERE IS A PUBLIC PERCEPTION THERE IS NO HARM TO BE DONE AND THAT IS NOT ALWAYS TRUE

Mary says WHAT ABOUT DIET? DIET COMES UP A LOT.

Brenda says THE AREAS IN THE WORLD WHERE MS IS LESS COMMON ARE OFTEN AES WHERE THE DIET IS DIFFERENT THAN OURS IN THE SENSE OF MORE FISH OIL, WHICH MAY RELATE TO VITAMIN D. THAT MAY BE RELEVANT BOTH FROM THE DIET BUT ALSO FROM SUNSHINE. WHETHER IT RELATES TO EARLY MIGRATION AND WHERE PEOPLE LIVE IN THE SENSE THAT THE MAJORITY OF PEOPLE COME FROM NORTHERN EUROPEAN HERITAGE, IMMIGRATION PATTERNS HAVE CHANGED. BUT THERE ARE GOOD STUDIES THAT SHOW ENGLAND IS A GOOD EXAMPLE IN THE UK WHERE FAMILIES FROM INDIA HAVE MY GREATED TO ENGLAND AND THEY ARE NOW IN THEIR SECOND OR THIRD GENERATION. THOSE INDIVIDUALS APPROACH THE SAME INSTANCE OF MS AS DO THE NATIVE EUROPEANS. SO IT SUGGESTS WHAT WE EAT IS AND WHERE WE LIVE MAY BE IMPORTANT.

Mary says GOING BACK TO VITAMIN D, IS SUPPLEMENTION RECOMMENDED?

Brenda says IT IS RICK MENDED IN CANADA IN GENERAL, PARTICULARLY IN THE WINTER. IT MAY BE THEY NEED TO TAKE MORE. ITS NOT BUN FULLY STUDIED. BUT EXPERT TELL YOU WE ARE AS A GROUP DISHT AT THIS TIME OF YEAR. WE HAVE HAD A TERRIBLE WINTER, VERY LITTLE SUN LIGHT

Mary says LOUISE, DID YOU EVER LOOK INTO ALTERNATIVE THERAPIES?

Louise says I FLIRTED WITH A FEW OF THEM. I MAY SAY. ITS INTERESTING JOANNE'S QUESTION ABOUT DIET AND MY PRAGMATIC SELF COMES TODAY TODAY AND EATING WELL, NOT MUCH OF THE TIME, WATCHING ONE'S WEIGHT, THAT IS THE VERY NUTS AND BOLTS OF IT IS EXTREMELY IMPORTANT WHEN YOU CONSIDER IF YOUR LEGS ARE TAXED EASILY, WALKING IS STRESSFUL. SO THAT PART OF THE DIET IS VERY IMPORTANT, TO BE, YOU KNOW, HAVE GOOD SOUND NUTRITION. IRON, COMING FROM THE OTHER SIDE OF IT.

Mary says ABSOLUTELY. LET'S TAKE ANOTHER CALL. DIANE, HI. GO AHEAD.

The Caller says HI. I HAVE A QUESTION. I WAS DIAGNOSED THREE YEARS AGO WITH SECONDARY PROGRESS ZIVE MS. LOOKING BACK YOU REALIZE I DID START SOON E BUT THINGS WERE EXPLAINED AWAY. BY THE TIME I GOT THE DIAGNOSIS, IT WAS ALREADY SECONDARY. TO MRI, THEY DISCOVERED LESIONS AND ALL THESE THINGS, I HAVE BEEN THROUGH A LOT. ONE OF THE THINGS THE NEUROLOGISTS TOLD ME I HAD WAS BLACK HOLES ON THE BRAIN WHICH ASSUME IS AN AREA WHERE THERE IS NO ACTIVITY. SO I AM TRYING TO FIGURE OUT WHAT THAT IS.

Brenda says THE TERM BLACK HOLE IS AN MRI TERM, ITS NOT A BIOLOGY TERM. SO THERE ARE NO ACTUAL BLACK HOLES IN THE BRAIN. ITS AN AREA OF TISSUE LOSS AND PROBABLY PERMANENT INJURY. SOME BLACK HOLES ARE ACTUALLY SITES OF ACTIVE INFLAMMATION. IF IT REMAINS DARK, LESS SIGNAL IN THAT AREA, THAT MEANS THERE IS PERMANENT TISSUE INJURY. DOESN'T MEAN WITH ABSOLUTE CERTAINTY THERE IS NO CELL FUNCTION IN THAT REGION, ITS JUST LESS THAN THE NEIGHBORING CELLS. ALL MS PATIENTS DEVELOP AREAS OF BLACK HOLE.

Louise says THEY SHOULD USE ANOTHER WORD.

Brenda says ITS A TERRIBLE WORD SNCHL LIKE NOTHINGNESS.

Mary says THE BRAIN IS SUCH AN INCREDIBLE ORGAN, IF YOU HAVE AN AREA OF A BLACK HOLE. CAN OTHER PARTS OF THE BRAIN TAKE OVER?

Brenda says THEY DO. ABSOLUTELY THEY DO. WE USED TO THINK THE BRAIN'S ABILITY TO MERGE AND BECOME OTHER THINGS WAS FIX IN CHILDHOOD. THAT IS NOT TRUE. WE CAN AND DO REGROUP PATH WAYS PAST AREAS OF BLOCK. WHICH TAKES TIME AND COMES BACK TO THE COMMENTS ABOUT REHABILITATION, PHYSICAL ACTIVITY. THE STIMULUS TO A BRAIN TO REROUTE A PATH WAY IS BASED ON WHAT THE BRAIN IS DEMANDED OF. IF YOU ARE NOT GETTING THERAPY DURING A RELAPSE AND USING THOSE AREAS, THE BRAIN IS NOT GETTING THE STIMULUS TO DO THE REROUTING. ITS NOT PERFECT WHICH IS WHY DISABILITY DOES HAPPEN. IF WE COULD REROUTE PERMANENTLY, THAT WOULD BE PERFECT. BUT ITS THERE AND USED BY THE BRAIN. MAYBE BETTER IN YOUNGER MS PATIENTS THAN OLDER MS PATIENTS. BUT PATIENTS THAT HAVE HAD THE DISEASE FOR A LONG TIME HAVE A DEGREE OF FLEXIBILITY.

Mary says GO AHEAD.

Louise says MY MEMORY WENT BACK TO DOING PHYSIO WHEN I WAS YOU SEE... WASN'T WALKING. IN THE WATER THE WITH THE THERAPIST, THEY SAYS MAKE THE LEGS DANCE SO THEY DON'T FORGET HOW TO MOVE. ITS PROFOUND AND SYMBOLIC. I LOVE TO DANCE. WHAT YOU ARE REFERRING TO IS TO KEEP EVERYTHING AS AN OPTION IN TERMS OF BIOLOGY AS WELL.

Mary says I TALKED ABOUT WHEN PATIENTS COME TO SEE YOU. WHAT ABOUT WHEN ITS FAMILY? FAMILIES OR SPOUSES? ITS SO HARD ON THE FAMILY AND THE SPOUSE. WHAT ARE THE ISSUES THEY BRING UP? IS THE MARRIAGE IN JEOPARDY?

Louise says ABSOLUTELY. ABSOLUTELY. BABIES DON'T MAKE OR BREAK MARRIAGES, ILLNESS DOESN'T EITHER. HOWEVER, IT RAISES THE STRESS LEVEL. IF YOU CONSIDER A SPOUSE WHO DOESN'T WANT TO HAVE SEX EVER BECAUSE THEY ARE SO TIRED OR THE DON'T WANT TO PLAN A HOLIDAY, THERE IS LESS INCOME. THEY MAY BE PARENTING LESS BECAUSE THEY ARE TIRED. THEY FEEL... I REMEMBER A MAN WHO HAD SUICIDE IDEATION. I SAID WHAT HAPPENED? HE SAID I COULDN'T SHOVEL MY DRIVEWAY YESTERDAY. SNOW. SO WHAT I AM SAYING IS THESE SMALL THINGS THAT WE THINK, GET SOMEBODY TO DO IT, IN HIS EXPERIENCE WHEN HE SHOULDN'T SHOVEL HIS SNOW, HE WASN'T A MAN, WHATEVER THAT MEANS. SO IT EFFECTS THE FAMILY. EVERY MEMBER OF THE FAMILY WILL BE ANGRY. THEY ARE ANGRY AT WHOEVER THEY CAN BLAME FOR THIS.

Mary says LET'S TAKE ANOTHER CALL. SHERRY IS ON THE LINE. HI.

The Caller says GOOD AFTERNOON. I HAVE A QUESTION. EVERYTHING LOUISE IS SAYING I CAN RELATE TO. SHE IS SO WELL SPOKEN. BASED ON A COURSE OF THE DISEASE, IF YOU HAVE BEEN FOLLOWING IT A LONG TIME, I HAVE BEEN DIAGNOSED 12 YEARS, CAN A PATTERN BE DETERMINED AT ALL?

Brenda says WELL, ONE OF THE BIGGEST CHALLENGES ABOUT MS IS UNCERTAINTY. EVERY PATIENT WILL TELL YOU THAT. YOU HAVE EXPERIENCED THAT TOO. NOT KNOWING THE FUTURE IS CHALLENGING FOR PHYSICIANS BECAUSE IF WE COULD PREDICT THOSE PATIENTS THAT WOULD HAVE MILD DISEASE, WE WOULDN'T NECESSARILY RECOMMEND THAT THEY TAKE THESE THERAPIES. IF WE CAN PREDICT THE PATIENT FOR WHOM THE THERAPY IS KEY AND MOST BEN EFFICIENT WE WOULD LOVE TO HAVE A TEST THAT WOULD TELL US THAT. THE ONLY CLUES WE HAVE SO FAR IS THAT PATIENTS THAT HAVE VERY VERY HIGH FREE QENLY RELAPSES EARLY ON TEND TO BE MORE ADVANCED IN THE DISEASE. BUT THOSE ARE THE SAME PATIENTS THAT RESPOND BEST TO THERAPIES.

Mary says REALLY. WHAT ABOUT IF YOU ARE DIAGNOSED EARLY IN LIFE, CHILDREN, DOES THAT MEAN YOU WILL BE BETTER OR WORSE OFF? DO YOU KNOW THAT?

Brenda says THE ISSUES WITH CHILDREN ARE MANY MANY CHILDREN HAVE BEEN MISSDIAGNOSED FOR A LONG TIME. THE CHILDREN WE KNOW ABOUT MAY HAVE BEEN THOSE WHO HAD THE MOST DRAMATIC PRESENTATIONS. HAVING SAID THAT, THE PROGRESS OF THE DISEASE IN A CHILDHOOD GROUP TENDS TO BE SLOWER THAN ADULTS. IF YOU TAKE TWENTY YEARS OUT FROM THE FIRST ATTACK, CHILDREN ARE DOING BETTER THAN ADULTS AT 20 YEARS. WHEN THEY START TO DEVELOP CHALLENGES, THEY MAY BE ALL OF 25, 30, BECAUSE THEY WERE 5 WHEN THEY STARTED. SO THE AGE AT WHICH THE DIFFICULTIES HIT MAY BE YOUNGER BUT ITS LONGER IN TERMS OF YEARS. THAT IS BASED ON HISTORICAL DATA. WHAT WE DON'T KNOW YET IS IN THE ERA OF TODAY'S MANAGE M, WHAT ARE WE GO TOK DO.

Mary says TOO SOON TO TELL.

Brenda says RIGHT.

Louise says THE MEDICAL PROGNOSIS IN TERMS OF THE PSYCHOLOGICAL PROGNOSIS, MY AREA, WE ARE WHO WE WERE. CHRISTOPHER REEVE WAS A BOY SKROUT, YOU KNOW, BEFORE. THE WAY THEY MAP THEIR PERSONALITIES, THE WAY THEY LIVE LIFE, IT WILL CARRY OVER AND INCREASE AND FLOW WITH IT. SO ONE OF THE PREDICTORS AND THINGS I WORK WITH IS, YOU KNOW, CAPTURING AND MINING ALL OF THOO STRENGTH THAT THEY HAVE HAD POTENTIALLY AND USE IT'S.

Mary says WE HAVE ANOTHER CALL. NADINE FROM TORONTO, HI. HI? HELLO?

The Caller says HELLO. HI.

Mary says HI. GO AHEAD.

The Caller says CAN YOU HEAR ME?

Mary says FINE.

The Caller says I HAVE SO ENJOYED LISTENING TO LOUISE. I FEEL THE SAME WAY, THAT YOU HAVE TO MAKE YOUR OUTSIDE SELF FEEL BETTER TO MAKE YOUR INSIDE SELF FEEL GOOD. THE OTHER DAY I WAS PUTTING ON MAKEUP TO GO TO MY SON'S HOCKEY GAME. HE SAYS WHY ARE YOU DOING THAT? WELL I WANT TO FEEL BETTER. I HAVE HAD MS FOR 15 YEARS. I TRY TO KEEP GOING EVERY DAY. EACH DAY ST. LIKE ALCOHOLICS TAKE ONE DAY AT A TIME. YOU TAKE ONE DAY AT A TIME WITH MS AS WELL. THAT IS THE ONLY WAY THAT I KNOW M I HAVE A GOOD SUPPORT SYSTEM.

Louise says YOU INDULL J YOURSELF, I HOPE?

Mary says DO YOU?

The caller says I. INDULGE MYSELF ALL THE TIME.

[LAUGHTER]

Mary says THANKS.

Louise says WHAT NADINE IS SAYING, ONE OF THE TROOUTS IS WHEN OUR BODY LETS US DOWN, WE BEGIN TO NOT LIKE IT. SO I REMEMBER USING A WHEELCHAIR AND PUTTING ON PRETTY SHOES. I THOUGHT BECAUSE THE FEET CAN'T WALK DOESN'T MEAN THEY CAN'T LOOK GOOD. THERE IS A MIND SHIFT THAT CAN BE VERY POWER 6. I THINK ITS GREAT AND I HOPE SHE HAS GOOD A GOLD CARD TO SHINE IT UP AND GO SHOPPING

Mary says I NOTICE WE HAVE HAD FIVE CALLS ON AND THEY HAVE ALL BEEN WOMEN. MS STRIKES MORE WOMEN THEN MEN? RIGHT?

Brenda says WE WOULD LOVE TO UNDERSTAND THAT BECAUSE ITS KEY. IT DOES STRIKE MORE WOMEN THAN MEN IN THE LATE TEENAGE YEARS. IT DOES NOT SEEM TO STRIKE MORE GIRLS THAN BOYS.

Mary says AH.

Brenda says WHICH IS INTERESTING. FEMALE PRE DOMINANCE IS SEEN IN OTHER AUTO IMMUNE DISORDERS, THYROID DISEASE, LUPUS. THERE ARE SEEMS TO BE SOMETHING ABOUT POTENTIALLY THE IMMUNE REGULATION WITH HORMONEAL INFLUENCES THAT IS PRESENT.

Mary says WE ARE QUICKLY RUNNING OUT OF TIME. IF WE COULD LOOK AT THE HORIZON, I HAVE SEEN A NUMBER OF ARTICLES ON DIFFERENT AREAS OF STUDY IN MS. THERE WAS SOMETHING ABOUT CHEMOTHERAPY. I READ ABOUT AN ENZYME. CAN YOU TALK ABOUT THOSE AND SAY THERE IS A LOT OF RESEARCH THAT NEEDS TO BE DONE, LOOKS GOOD.

Brenda says THERE IS A LOT BEING DONE. I THINK THE FIRST STEP IS THERE IS A BETTER UNDERSTANDING IN THE LAST FEW YEARS. MANY RESEARCH DOLLARS ARE POURED INTO UNDERSTANDING WHAT THE DISEASE IS DOING. THE REASON THAT IS KEY IS THE THEORIES BEING DESIGNED ARE TARGETED AT PARTICULAR PARTS OF THE PROCESS WHICH ALLOWS THEM TO BE SPECIFIC. THE CHEMOTHERAPY TRANSPLANT IS EXCITING IN THAT IT MIGHT PROVE IF WE CAN WIPE THE IMMUNE SYSTEM OUT AND REBUTTE IT, WOULD IT THROW THE DISEASE.

Louise says ONLY FIVE PATIENTS.

Brenda says CANADA IS ONE OF THE LEADING COUNTIES. SO THAT IS EXCITING. WE HAVE REASON TO BE PROUD THAT IS HAPPENING HERE. THAT IS VERY IMPORTANT. THERE ARE NEW THERAPIES COMING OUT EVERY COUPLE YEARS, ALL LOOKING EXCITING.

Mary says WE WILL ENDS UP ON THAT. WE ARE OUT OF TIME. THANK YOU. IT WAS A GREAT DISCUSSION. DR. BRENDA BANWELL, HOSPITAL FOR SICK CHILDREN. LOUSIE GIROUX. THE SUPER CITIES WALK IS IN 140 COMMUNITIES.

A slate reads "Etobicoke Walk, Sunday April 18. Registration starts 8:30 am, St. Mark Catholic School, 45 Cloverhill Rd."

It changes to "Multiple Sclerosis Society of Canada. Super Cities Walk. 1-888-822-8467, www.supercitieswalk.com."

Mary says EARLIER THIS YEAR I SPOKE WITH STREET NURSE CATHY CROWE. FOR 15 YEARS SHE HAS WORKED AS THE FOUNDER OF DISASTER RELIEF COMMITTEE. SHE DECLARED HOMELESSNESS A NATIONAL DISASTER AND HUMAN RIGHTS VIOLATION. THAT FIGHT HAS LED TO MANY HONORS FOR CATHY. THE LATEST IS THE ECONOMIC JUSTICE AWARD. CATHY WAS AN X FACTOR profile and we bring you that interview now.

A clip plays in which Mary and Cathy talk in the studio.

Cathy is in her early forties, with short blond hair. She's wearing a white cardigan and a black blouse.

Mary says CONGRANT LAYINGS ON RECEIVING THIS ATKINSON AWARD. TELL US WHAT IT INVOLVES, THE AWARD.

A caption appears on screen. It reads "Cathy Crowe. Street Nurse."

Cathy says ESSENTIALLY IT'S SUPPORT OF THE UM, ATTACHED WITH MONEY. FOR UP TO THREE YEARS. FOR ME TO... TO DO THE WORK THAT I'M DOING. AND ALSO TO... TO, UM, I SUPPOSE DREAM AND IMAGINE SOME OTHER AREAS THAT I CAN, UM, CAN, UM, CAN, CAN VENTURE INTO.

Mary says CAN I ASK YOU HOW MUCH MONEY IS INVOLVED?

Cathy says IT'S 100,000 dollars EACH YEAR FOR THREE YEARS, OF WHICH A PORTION BECOMES A SALARY FOR ME AND ANOTHER PORTION, UM, KIND OF LIKE A COOKIE JAR. SO... WHICH I CAN USE IN ANYWAY THAT INCOMPETENT. LOTS OF TIMES, WE LIKE TO, UM, TO... TO BE ABLE TO OFFER HOMELESS PEOPLE THINGS IF THEY'RE DOING SPEAKING END GANELMENTS OR FOR TRAVEL... I WOULD LIKE TO GO AND SEE THE OTTAWA PALLIATIVE CARE UNIT THAT YOU JUST SHOWED. THINGS LIKE THAT.

Mary says YOU WERE SO EXCITED WHEN YOU GOT THIS AWARD OF THE WEREN'T YOU? YOU SAID IT WAS TOTALLY UNEXPECTED.

Cathy says YES. AND OH, FOR SURE. I TOTALLY DIDN'T SEE IT COMING.

Mary says I MEAN, WHAT... WHAT DOES THIS MEAN NOW, AS FAR AS THIS... WILL THIS CHANGE YOUR LIFE AND... WILL IT MAKE SOME DIFFERENT AS TO WHAT YOU'LL PURSUE AND WHAT HAPPENS?

Cathy says YEAH, I'M STILL FIGUREING IT OUT. IT IS CHANGING MY LIFE. THAT MEANS I WAS ABLE TO QUIT MY FORMER JOB AT THE... AT A COMMUNITY HEALTH CENTRE T MEANS THAT I CAN FREED UP. LIBERTYED IN A WAY, TO DREAM AND PICTURE WAYS OF WORKING. UM, NOT BEING IN... ENCUMBERED BY OTHER RESPONSIBILITY.

Mary says SO DOES IT ACTUALLY MEAN... YOU KNOW, WE'VE CALLED YOU A A STREET NURSE. YOU'RE KNOWN AS BEING A STREET NURSE. DOES THAT MEAN YOU WON'T BE A STREET NURSE ANYMORE?

Cathy says I THINK I'LL ALWAYS BE A STREET NURSE. I'M FOR SURE TAKING A FEW MONTH OFF FROM THAT DIRECT CLINICAL WORK. HAND ON WORK. BUT I'M STILL, UM, IN THE DROP-IN CENTRES, AND IN THE SHELTERS. SEEING HOMELESS PEOPLE. UM, AND... AND RESPONDING TO THEIR NEEDS MUCH MUCH I THINK I'M GOING TO SPEND A BIT OF TIME FOLLOW SOME OTHER STREET NURSE THAT IS HAVE OTHER SPECIALTIES AND LEARNING MORE FROM THEM SO THAT I CAN ALSO TELL THOSE STORIES TO POLITICIANS AND OTHERS: UM, AND I GUESS THAT I'M, I'M THINKING MYSELF MORE OF LIKE A POLITICAL STREET NURSE NOW. AND, UM, ALMOST IN THE OLD DAYS, UM, OF IN THE'S 30'S WHEN NURSES WERE DOING WHAT I THINK OF AS POLITICAL NURSEING IN A WAY. KIND OF SPEAKING OUT AND TRYING TO...

Mary says LOBBYING.

Cathy says LOBBYING AND TRYING TO DEAL WITH THE ISSUES AND END GAUGE ING PEOPLE TO HELP SOLVE THE PROBLEM.

Mary says HOW DID THAT TERM STREET NURSE COME ABOUT?

Cathy says IT WAS, UM, IT WAS MANY, MANY YEARS AGO, 15, 16 YEARS AGO, UM, MYSELF AND A COUPLE OF OTHER STREET IN YOURS, THERE WERE ONLY FOUR ARE OR FIVE AT THE TIME, WE WERE WALKING IN DOWNTOWN... IN TORONTO AT HER BURN AND DUNDAS AND A COUPLE OF GUYS THAT CROSSED THE STREET AND YELLED OUT, HEY, STREET NURSE. YOU KNOW? A VERY POSITIVE FASHION. THEY SAW US AS THEIR NURSE FOR, FOR THEM SELVES AS STREET PEOPLE. SO IT WAS LIKE A... LIKE A RECLAIMING OF A TERM. AND IT JUST BECAME KNOWN. AND NOW THERE ARE, THERE ARE OVER A HUNDRED IN THE COUNTRY. EASILY.

Mary says YOU ARE ACTUALLY MORE OF A TRADITIONAL KIND OF NURSE AT ONE TIME.

Cathy says YEAH,

Mary says WAS IT ABOUT 25 YEARS AGO.

Cathy says YEP.

Mary says WHY DID YOU DECIDE TO MAKE THAT... THAT MOVE TO... TO ADVOCATING FOR THE HOMELESS?

Cathy says UM, IT WAS... IT WAS PRETTY ACCIDENTAL. I, I REALLY, UM, JUST BEGAN TOL FEEL THAT I COULDN'T DO, DO NURSING IN A FULL ROLE IN SOME OF THE PLACE THAT IS I WAS. BECAUSE OF EITHER PHYSICIAN CONTROL OR HOSPITAL RULES OR, OR JUST LIMITATIONS. AND... AND THERE WAS THIS LITTLE ORGANIZATION CALLED STREET HEALTH. UM, AND IT WAS VERY INDEPENDENT. AND VERY STRONG NURSING BASE. SO I WENT TO WORK THERE. AND... AND IT WAS SO... SO IT WAS TOTALLY ACCIDENTAL. MUCH I DIDN'T GO OUT THINKING THAT I WANT TO BE A NURSE FOR HOMELESS PEOPLE. UM, AND THERE WAS AN ORGANIZATION THAT REALLY SAW THE UP STREAM ISSUES AND EXPECTED YOU TO... TO DEAL WITH THEM. AND SO IF AM PEOPLE WERE HOMELESS BECAUSE OF, UM, BECAUSE OF EVICTIONS OR BAD AM ROOM ING HOUSE CONDITIONS, WELL, YOU KNOW, YOU WERE EXAMINED TO... EXPECTED TO, TO STOPPED TO THAT. AND... AND SO IT WAS A REAL LEARNING CURVE.

Mary says WHAT HAPPENED TO YOU WHILE YOU WERE DOING THAT?

Cathy says HMM, WELL, I WAS JUST SHOCKED I GUESS BY HOW MANY MYTHS I HAD ABOUT WHO WAS HOMELESS AND WHAT THE HEALTH ISSUES WOULD BE. AND, UM, AND... AND I LEARNED THAT... THAT I WAS SEEING THINGS THAT I NEVER EVER THOUGHT THAT I WOULD SEE AS A NURSE IN CANADA. UM, YOU KNOW BE PEOPLE WERE, WITH, YOU KNOW, WITH LEGS SWOLLEN UP TO THEIR HIPS FROM WALKING AND POOR SURK LAIGS AND PEOPLE SLEEPING IN, IN PLACES I NEVER DREAMT THAT AM FAMILY WOULD HAVE TO SLEEP IN. UM, YOU KNOW, UM, YOU KNOW, IT WAS JUST... IT'S STILL SHOGING... SHOCKING, ACTUALLY. STILL SEEING NEW THINGS THAT YOU DON'T EXPECT TO SEE.

Mary says TELL ME WHAT'S HAPPENING WITH THE SITUATION OF HOMELESSNESS. BECAUSE YOU'VE WON... BEEN WORKING IN THIS AREA NOW FOR ABOUT 15 YEARS MUCH MUCH YEAH OF THE WHAT HAPPENED DURING THAT TIME?

Cathy says WELL IT EXPLODED IN THE 19... ABOUT 1995-96. UM, AND SINCE THEN, IT'S BEEN, BEEN JUST INCREASING ASTRONOMICALLY. NO LONGER A BIG-CITY PROBLEM. IN EVERY COMMUNITY ACROSS THE COUNTRY ALMOST. WE'RE SEEING MORE FAMILIES, WOMEN AND CHILDREN. AND HOMELESS. AND WE'RE SEEING, UM, MORE WORKERS HOMELESS: WHO HAVE LOST THEIR JOBS: UM, AND... AND I SEE NOW AM PEOPLE THAT I, I FIRST MET THAT FIRST YEAR WHO ARE HOMELESS THAT ARE STILL HOMELESS. 15 YEARS LATER. WHO...

Mary says WHO ARE LIVING STILL...

Cathy says STILL IN SHELTERS. OR, OR, YOU KNOW, SOME LIVED AT TENT CITY WHEN THEY DEVELOPED TENT CITY. UM, AND WE'RE SEEING MUCH WORSE HEALTH CONDITIONS. TUBERCULOSIS HAS RETURNED. AND CONDITIONS IN HEADLIGHTERS ARE BE ARE OVERCROWDED AND BECAUSE OF THAT, WE'RE SEEING THINGS THAT YOU WOULD NORMALLY... NORMAL WILL HE SEE IN A VERY IMPOVERISHED REFUGEE CAMP AND WE HAVE... SO WE HAVE HUNGER AND DESPAIR THAT'S HARD TO MEASURE AND BED BUGS. OF AND THERE'S NO HOPE OF GETTING HOUSING BECAUSE THERE'S NONE BEING BUILT AND IT'S A NIGHTMARE.

Mary says WHEN YOU DEAL WITH THIS... YOU DEAL WITH THIS DAY AND IN... DAY IN AND DAY OUT, UM, I MEAN BE HOW MUCH DESPAIR HITS YOU OVER THIS?

Cathy says WELL, THINK IT HITS ALL OF US, YOU KNOW? MY COLLEAGUES AND MYSELF, UM, WE GO IN AND WE GO IN WAVES AND WE HELP EACH OTHER. MUCH WHEN ONE'S DOWN, THE OTHER'S OUT AND WE FIGURE OUT NEW WAYS TO STRUGGLEL OR COME UP WITH SOLUTIONS MUCH IT'S QUITE OVER AM WHELMIN. MUCH BUT, SPAIMT, IT'S MUCH HARDER FOR AM PEOPLE WHO ARE IN THE SITUATION.

Mary says AND NOW, YOU ORGANIZE THE TORONTO DISASTER RELIEF COMMITTEE A.

Cathy says WELL, I HELPED CO FOUND IT.

Mary says YES. HOW DID THAT COME ABOUT?

Cathy says UM, FOR, FOR A LOT OF US, WE HAD BEEN WITNESSING QUITE HORRIFIC CIRCUMSTANCES. YOU WILL, AND... AND TALKING, SHARING STORIES, TRYING TO FIGURE OUT WHAT TO DO. IT THIS BEENL REALLY, REALLY GETTING BAD. CLUSTERS OF DEATH, UM, OF... OF DEATHS, FREEZING DEATHS. TB COMING BACK AND WE WERE KIND OF OVERWHELMED AND WHEN THE ICE STORM HAPPENED IN... IN EASTERN CANADA, AND ONTARIO, WE BEGAN TO REALIZE, WELL, LOOK AT HOW OUR GOVERNMENTS RESPOND TO A NATURAL DISASTER. AND WE, WE BEGAN TO LOOK AT THIS AS A... AND MADE IT AS A MAN-... MAN-MADE DISASTER AND WE CALLED... WE JUST FORMED THE GROUP. WE CALLED PEOPLE TOGETHER. WHO... WHO WE HAD WORKED WITH WHO ALL AGREED THAT IT WAS A MAN-MADE DISASTER. AND WE CALLED IT THAT.

Mary says AND NOW YOU ALSO, YOU'RE ADVOCATING SOMETHING CALLED A 1 percent SOLUTION, RIGHT? TO HELP END THIS PROBLEM. EXPLAIN THAT TO US.

Cathy says YES OF THE UM, WHEN OUR GOVERNMENTS IN CANADA USED TO BUILD AFFORDABLE HOUSING, THEY WERE SPENDING ON AVERAGE ABOUT 1 percent OF THEIR BUDGET ON HOUSING. AND SO IN TERMS OF FEDERAL SPENDING FROM OTTAWA, THAT WOULD BE ABOUT 2 BILLION dollars. SO WE'RE, WE'RE, OUR COUNTRY NOW IS NOT DOING THAT. MUCH WHICH IS WHY WE HAVE THIS ARE PROBLEM. SO WE'RE, WE'RE CAMPAIGNING FOR WHAT'S CALLED THE 1 percent SOLUTION. WE WANT THE FEDERAL GOVERNMENT TO INVEST 2 BILLION dollars A YEAR INTO A AFFORDABLE HOUSING. AND THEN WE WANT PROVINCIAL GOVERNMENTS IN THE TERRITORIES TO MATCH IT. IN THE... AND THE CITIES ARE ALREADY, ALREADY REALLY TRYING TO DO THE BEST THAT THEY CAN WITH THEIR OWN...

Mary says WHAT KIND OF RESPONSE HAVE YOU GOT TONE THAT... GOT TONE THAT PLAN?

Cathy says WE'RE FAR A AWAY FROM, FROM.THEM AGREEING TO... TO, UM TORQUE GIVE IT. UM, AND... BUT WE'RE CERTAINLY FAR AHEAD IN TERM OF, UM, OF A NATIONAL RESPONSE AND OUT... IN OUT RAUJ AND DEMAND FOR IT. WHETHER IT'S CHURCHES OR UNIONS OR, OR GRADE 4 CHILDREN, UM, AND... AND IT'S, IT'S RECOGNIZED I THINK THAT... BY MOST AM PEOPLE NOW THAT HOUSING IS THE DIRECT SOLUTION TO HOMELESSNESS.

Mary says AND... AND, YOU KNOW, OF COURSE, IT GOES BEYOND EVEN THE LITERALLY THE HOMELESS THEMSELVES, RIGHT? WHEN YOU LOOK AT ALL OF THOSE FAMILIES THAT ARE JUST ON THE AND EDGE RIGHT? THAT ARE PUTTING... I GUESS A LOT OF THEIR INCOME TOWARDS JUST KEEPING A ROOF ON THEIR HEAD. OF.

Cathy says UH-HUH.

Mary says THOSE WOULD BE THE NEXT NOW TO FALL THROUGH BE WOULDN'T THEY?

Cathy says THEY ARE. AND THAT'S WHAT IS SO WORRISOME. MUCH BECAUSE, UM, THE NEWEST NUMBERS OF AM AM PEOPLE BECOMINGING HOMELESS, UM, ARE THOSE, ARE THOSE AM PEOPLE, AND THEY'RE... WE CALL THEM ECONOMIC EVICS SO MANY THEY'RE PEOPLE WHO, WHO, UP, JUST HAVE NO LONGER BE BEEN ABLE TO AFFORD THEIR RENN. THAT'S, OF COURSE, LINK TODAY WELFARE RATE CUTS AND, UM, AND, YOU KNOW, HUGE RENT INCREASE THAT'S ARE HAPPENING NOW. OF SO WE NEED TO ADDRESS THOSE ISSUES AS WELL.

Mary says YOU KNOW, OF ALL THE EXPERIENCES THAT YOU'VE HAD ON THE STREET, ARE THERE ANY THAT... THAT HAVE REALLY STAYED WITH YOU? THAT HAVE EVEN BEEN ST OF GUIDED YOU THROUGH THE YEARS?

Cathy says WELL, THERE HAVE BEEN, BEEN, YOU KNOW, A NUMBER RELATED TO HORRIFIC DEATHS OR SITUATIONS LIKE THAT. BUT I THINK THAT, UM, THAT, YOU KNOW, OVERALL, THERE'S LIKE THIS INCREDIBLE, THERE'S THIS INCREDIBLE GROUP OF AM PEOPLE THAT YOU NEED THAT ARE STRUGGLING WILLING TO SURVIVE, THAT, YOU KNOW, THAT SHARE THEIR STORIES. OR, YOU KNOW, ARE WILLING TO SPEAK OUT. OR STILL SOMEHOW TRY TO LIVE AND EXIST. AND... AND, UM, AND... AND I REALLY, I DON'T SEE THEM AS DIFFERENT THAN MYSELF. I BE MEAN, YOU KNOW, I'M PRIVILEGED. I HAVE A JOB AND... AND, YOU KNOW, I'M A NURSE AND... BUT, YOU KNOW, I'VE MET BLUE COLLAR WORKERS AND ROOFERS AND... AND FAMILIES AND, YOU KNOW, THESE ARE, ARE PEOPLE: AND, AND IN OUR COUNTRY. AND, UM, AND... AND WHAT IS SHOCKING IS THAT... IS THE CONDITION THAT WE'RE EXPECTING THEM TO LIVE IN.

Mary says UH-HUH. ALSO, THERE WAS A VERY IMPORTANT ANNOUNCEMENT MADE THIS WEEK, WASN'T THERE? WHAT HAPPENED THIS WEEK?

Cathy says WELL, MY GOSH, IT'S CANADA OF THE MUCH IT'S WINTER. YOU KNOW? EVERY WINTER WE STRUGGLE FOR BE AN MNEL SHELTER TO BE OPENED. AND IN... AN AR... ARMORY WAS OPENED. BUT LAST NIGHT I RECEIVED A CALL AT 5 O'CLOCK SAYING THAT THE CITY WAS OPENING UP A NEW EMERGENCY SHELTER. UM IN, AN OLD GEORGE BROWN CAMPUS ON MURRAY STREET, 2 MURRAY STREET. IT WILL BE OPEN TO THE DURATION OF THE WINTER. FOR ABOUT 75 MEN AND WOMEN.

Mary says OH.

Cathy says SO, IT'S A BIG VICTORY. IT WILL SAVE LIVES.

Mary says YEAH MUCH ABSOLUTELY. WHAT... YOU KNOW WHAT? WE'RE ALMOST OUT OF TIME. BUT FOR PEOPLE LISTENING OUT THERE, HOW CAN HE BE INVOLVED? WE PASS THESE PEOPLE ALL THE TIME.

Cathy says UH-HUH.

Mary says ON THE STREETS.

Cathy says UM, THERE'S LOTS THAT YOU CAN LEARN. YOU CAN CHECK OUR WEBSITE. UM, AND I THINK IT'S GOING TO BE MENTIONED AT THE END. MUCH THINK ABOUT JUST IN YOUR OWN GEOGRAPHIC COMMUNITY WHERE YOU LIVE S THERE A WOMAN'S SHELTER OR A PLACE THAT YOU CAN CONTRIBUTE? CAN YOU DONATE TO A LOCAL PROGRAM? TRY TO THINK ABOUT HELPING INDIVIDUALS THAT YOU SEE. BUT ALSO, ALSO JUST KNOW THAT EVERY TIME YOU GET A CHANCE TO TALK TO A POLITICIAN AT YOUR DOOR, OR, OR SOMETHING LIKE THAT, MAKE SURE YOU, YOU TELL THEM WHAT YOU THINK OF THE PROBLEM. WATCH YOU COULD DO.

Mary says THANK YOU SO MUCH. AND BEST OF LUCK WITH YOUR WORK.

Cathy says THANK YOU.

Mary says CONTINUED SUCCESS. MUCH CATHY CROWE IS A STREET NURSE AND THE CO FUNDER OF THE TORONTO DISASTER RELIEF COMMITTEE. AND THEY CAN BE REACHED AT...

A slate reads "Toronto Disaster Relief Committee. 416-599-TDRC, 416-599-8372, www.tdrc.net"

Mary says AND ALSO FOR INFORMATION ON EVICS AND HOMELESSNESS, ACROSS ONTARIO, YOU CAN GO TO THE WEBSITE...

A slate reads "Advocacy Centre for Tenants Ontario, www.acto.ca."

Mary says Thank you for watching. And please join us each weekday, Monday to Friday, for More to Life at 1 o'clock.

A slate reads "The advice given in the preceding program is of a general nature only. Viewers should consult their own medical professional for medical advice specific to their circumstances."

Watch: Multiple Sclerosis, Cathy Crowe