Transcript: My Life with Parkinson's | Jul 23, 2019

Nam sits in the studio. She's in her early forties, with shoulder length curly brown hair. She's wearing glasses and a gray blazer over a blue blouse.

A caption on screen reads "My life with Parkinson's. Nam Kiwanuka, @namshine, @theagenda."

Nam says THERE IS AN EXPRESSION THAT
WHEN LIFE GIVES YOU LEMONS,
MAKE LEMONADE.
BEING DIAGNOSED WITH A
NEURODEGENERATIVE DISEASE
SUCH AS PARKINSON'S
IS FAR MORE THAN LEMONS
AND TIM HAGUE HAS DONE MUCH
MORE THAN MAKE LEMONADE.
HE'S LIVED, REALLY LIVED
AN INSPIRING LIFE,
DOING EVERYTHING FROM WINNING
THE AMAZING RACE CANADA
TO FOUNDING THE CHARITY
U-TURN PARKINSON'S
AND NOW,
HE'S WRITTEN A MEMOIR.

Tim is in his early fifties, clean-shaven, with short graying dark hair. He's wearing glasses, a gray suit and a checkered blue shirt.

Nam continues IT'S CALLED...

A picture of the book appears briefly on screen. The cover is white and the title reads "Perseverance. The seven skills you need to survive, thrive, and accomplish more than you ever imagined."

Nam continues AND TIM HAGUE JOINS US NOW.
HI.

Tim says HI, NAM.

Nam says I'M A BIG FAN
OF
THE AMAZING RACE CANADA
SO IT'S NICE TO HAVE YOU HERE.

Tim says WELL, THANK YOU, I AM TOO.

NAM SAYS WELL, LET'S TALK
ABOUT THE CRUX OF THE BOOK,
WHICH IS PARKINSON'S DISEASE.

TIM HAGUE SAYS YES.

Nam says WHAT IS PARKINSON'S DISEASE?

The caption changes to "Tim Hague. Author, 'Perseverance.'"
Then, it changes again to "Getting the message out."

Tim says PARKINSON'S IS A PROGRESSIVE
AND CHRONIC
NEURODEGENERATIVE DISEASE
THAT RESULTS IN THE DECREASED
PRODUCTION OF DOPAMINE
IN THE SUBSTANTIA NIGRA PORTION
OF THE BRAIN.
GOT THAT?

NAM SAYS I KNOW,
SAY THAT LIKE FIVE TIMES FAST.

[LAUGHTER]

Tim says IN SIMPLE TERMS,
IT'S NEURODEGENERATIVE,
IT'S A NERVE DISEASE
OF THE BRAIN
THAT WILL GET WORSE
WITH TIME.
IT'S PROGRESSIVE, IT GETS WORSE,
IT'S CHRONIC
BUT IT RESULTS
IN THE DECREASED PRODUCTION
OF THAT CHEMICAL DOPAMINE,
WHICH WE NEED FOR MOVEMENT.
DOPAMINE IS THE CHEMICAL THAT
GIVES US THAT RUNNER'S HIGH,
MAKES US FEEL GOOD,
BUT WE ALSO NEED IT
TO MOVE PROPERLY.
AND PARKINSON'S IS TYPICALLY
KNOWN BY THE TREMOR,
THE RIGIDITY, THE SLOWNESS,
THE LOSS OF BALANCE,
THOSE MOTOR SYMPTOMS
THAT WE OFTEN TALK ABOUT.
THERE'S LOTS OF OTHERS
BUT THOSE ARE YOUR CLASSIC ONES
THAT PEOPLE OFTEN THINK ABOUT
THE TREMOR AND WHATNOT.
AND BY THE TIME THAT TREMOR
DEVELOPS,
WE'VE LOST ABOUT 80 percent
OF THE PRODUCTION OF DOPAMINE
IN OUR SUBSTANTIA NIGRA,
WHICH IS RIGHT IN THE MIDDLE
OF OUR HEADS
UNDERNEATH THE THALAMUS
AND DOESN'T GET
PRODUCED ANYMORE.
SO THAT'S KIND OF A LONG ANSWER
TO "WHAT IS PARKINSON'S?"
SO AT THE LOSS OF THAT DOPAMINE
COMES ALL OF THOSE SYMPTOMS.

Nam says AND YOU PROBABLY KNOW MORE
ABOUT PARKINSON'S DISEASE
THAN MOST PEOPLE
BUT YOU WERE A NURSE
BEFORE YOU WERE DIAGNOSED.

Tim says YES, YES.

NAM SAYS AND YOU GOT THE DIAGNOSIS
WHEN YOU WERE 46?

TIM SAYS 46.

Nam says SO BACK IN 2013, YOU AND YOUR
SON, TIM JR...

TIM SAYS YES...

Nam says WERE THE WINNERS
OF THE FIRST SEASON
OF
THE AMAZING RACE CANADA.
WE HAVE A CLIP TO SHOW OF YOU
CROSSING THE FINISHING LINE.

Tim says AWESOME.

Nam says SHELDON, PLEASE ROLL.

A clip plays on screen with the caption "The Amazing Race Canada."
In the clip, Jon Montgomery stands outdoors with a younger Tim and another young man. Jon, in his thirties, is ginger, with a short beard.

He says TIM SR.,
WHAT DO YOU THINK YOUR SUCCESS
ON THIS SHOW IS GOING
TO SHOW CANADIANS?

Tim says AND I WOULD HOPE THAT,
IF ANYTHING... I COULD BE AN INSPIRATION TO
YOUNG ONSET PARKINSON'S.
JUST TO SIMPLY GET OFF YOUR ASS.
GET UP AND MOVE.
DON'T LET THIS DISEASE
TAKE YOUR LIFE AWAY.

Tim Junior says MY DAD HAS
COMPLETELY BLOWN
EVERY EXPECTATION
OF HIM OUT OF THE WATER.
PARKINSON'S ISN'T SUPPOSED TO
LET YOU DO HALF THE THINGS
THAT HE'S DONE IN THIS RACE.
AND HE NOT ONLY DID THEM,
HE KICKED THEIR BUTT, MAN.

The clip ends.

NAM SAYS WHAT EVEN POSSESSED YOU
TO JOIN
THE AMAZING RACE
IN THE FIRST PLACE
WHEN YOU HAVE PARKINSON'S?

The caption changes to "Getting the message out."

Tim says MY WIFE.
SHE WAS AN ABSOLUTE FANATIC
OF THE SHOW, STILL IS.
HAD WATCHED ALL THE AMERICAN
SHOWS AND SAID,
"IF IT EVER COMES TO CANADA,
WE'RE GOING TO APPLY."
AND THE LONG AND SHORT OF IT IS,
AFTER SHE'D LOOKED AT IT,
REALIZED THAT SHE AND I
COULDN'T BE GONE
BECAUSE WE STILL
HAD YOUNG CHILDREN AT HOME,
SHE INSISTED THAT MY SON
AND I APPLY BECAUSE SHE SAID,
"I GUARANTEE YOU'RE GOING
TO GET AN INTERVIEW.
THEY'RE GOING TO LOVE
YOUR PARKINSON'S,"
AND SHE WAS RIGHT.

Nam says WE'RE GOING TO TALK MORE ABOUT
THAT BUT SOMETHING THAT WAS SAID
IN THAT CLIP THAT
WE JUST SHOWED,
THE MESSAGE OF,
"GET UP AND MOVE."
IN THE SIX YEARS
SINCE THAT MOMENT
OF YOU WINNING
THE AMAZING RACE CANADA
AND EVERYTHING
THAT CAME WITH IT,
HOW HAVE YOU CONTINUED
TO GET THAT MESSAGE OF,
"GET UP AND MOVE,"
OUT TO PEOPLE WITH PARKINSON'S?

The caption changes to "Tim Hague, @TimHagueSr."

Tim says WELL, I HOPE A LOT OF IT'S BY
EXAMPLE.
MY DAUGHTER AND I JUST RAN
THE HYPOTHERMIC HALF MARATHON
IN WINNIPEG.

NAM SAYS SO YOU'RE TAKING IT EASY.

Tim says WE DID.

[NAM LAUGHS]

Tim says AND I SHOULD SAY,
WE DID BACK IN THE WINTER.

NAM SAYS UH HUH.

The caption changes to "Connect with us: Twitter: @theagenda; Facebook, agendaconnect@tvo.org, Instagram."

Tim says WE RAN THE HALF,
AND WE TRIED TO... WE TRIED TO SET
AN EXAMPLE OF WHAT WE CAN DO.
FOR A LONG TIME,
I HAD GIVEN UP RUNNING
OR RUNNING
WAS TAKEN FROM ME
BECAUSE I GOT REALLY
SEVERE CRAMPS.
MY TOES WOULD CURL UNDER
AND VARIOUS THINGS
AND I SIMPLY COULDN'T RUN,
BUT BECAUSE OF SOME MEDICATIONS
I WAS PUT ON AND WHATNOT,
THE CRAMPS HAVE GONE
AWAY AND SO WE'VE CHOSEN TO TRY
TO LIVE WITH WHAT WE TEACH
IN THE BOOK,
TAKE EVERY ADVANTAGE AND NOW,
MY BODY WILL LET ME RUN AGAIN.
SO I TRY TO LIVE
THE EXAMPLE OF,
"THERE ARE THINGS WE CAN DO
AND DO WHAT YOU CAN DO."
NOT THAT EVERYBODY
NEEDS TO BE A RUNNER.
YOU DON'T NEED TO DO WHAT I DO
BUT THERE ARE THINGS WE CAN DO
TO PUSH OURSELVES, TO PUSH THE
ENVELOPE A LITTLE BIT.

NAM SAYS NOW WHY DO YOU DO THAT?

Tim says BECAUSE THE RESEARCH
HAS PROVEN,
PROVEN... IT'S NOT A MATTER
OF SPECULATION.
IT IS SCIENTIFIC FACT
THAT EXERCISE IS AS GOOD FOR US
AS OUR MEDICATION IS.
AND IF WE WILL GET OUT
AND EXERCISE,
WE WILL SEE A BETTER
SYMPTOM CONTROL
WITH OUR PARKINSON'S
IN A VARIETY OF WAYS
AND THEY EVEN SPECULATE THAT
IT MAY SLOW THE DISEASE DOWN.
SO I JUST ASK PEOPLE, "ARE YOU
WILLING TO TAKE YOUR MEDICATION?
BECAUSE IF YOU'RE WILLING TO
TAKE YOUR PILLS EVERY MORNING,
YOU SHOULD BE WILLING
TO GET UP
AND DO SOME FORM
OF EXERCISE EVERY DAY
BECAUSE IT WILL MAKE
A DIFFERENCE."

Nam says WELL, LET'S TAKE
A STEP BACK IN TIME
AND TALK A LITTLE BIT ABOUT
YOUR CHILDHOOD.

Tim says OKAY, YEAH.

NAM SAYS I JUST WANT TO READ
SOMETHING THAT YOU WROTE
IN THE BOOK.
YOU WRITE...

A quote appears on screen, under the title "Free to a good home." The quote reads "I was born a half-breed into a very black and white world.
What does one do with a 'biracial' (as we were called) baby in 1964? You put up a 'Free to Good Home' ad and see if you get any takers.
In an attempt to avoid having to raise me in an orphanage, I was taken from church to church, put on display, and offered to anyone who was willing. I'm told that it wasn't quite as dramatic as it seems, and that in fact it didn't take long until my parents and I found each other."
Quoted from Tim Hague, "Perseverance." 2018.

Nam says WHEN I WAS READING THAT,
I NOTICED SOMETHING
SHIFT IN YOUR EYES.
HOW ARE YOU FEELING,
HEARING THAT?

Tim says IT'S A COOL STORY.
AT LEAST, IT IS TO ME,
'CAUSE IN 1964,
THERE WERE NOT A
LINE UP OF PEOPLE OUT THE DOOR
LOOKING TO ADOPT BIRACIAL BABIES
AND I STILL AM AMAZED
THAT PARENTS CAME ALONG... A WHITE
COUPLE CAME ALONG,
WHO WAS WILLING TO NOT ONLY
ADOPT ME BUT FIVE MORE LIKE ME,
IN ADDITION TO THE THREE
KIDS THAT THEY ALREADY HAD.
AND THAT'S A COOL THING.
MOM AND DAD ARE AWESOME PEOPLE.

Nam says DO YOU... EVEN LIVING
IN THAT WORLD AT HOME,
YOU WRITE THAT INSIDE, IT WAS
SAFE AND YOU FELT ACCEPTED
BUT WHAT WAS IT LIKE TO
GO OUT INTO THE WORLD
WITH WHITE PARENTS,
AS YOU SAY,
IN A VERY BLACK AND WHITE WORLD.

Tim says YEAH, WE CAUSED A STIR
WHENEVER WE WENT OUT TOGETHER.

[NAM CHUCKLING]


Tim says YOU KNOW, MOM AND DAD TRAILING
SIX BIRACIAL KIDS BEHIND THEM,
ALWAYS CAUSED A SENSATION.
AND EVERYWHERE OUT
THERE WAS ALWAYS A CHALLENGE
BECAUSE LIKE I SAY
IN THE BOOK,
YOU KNOW,
I WAS ALWAYS TOO WHITE
FOR THE BLACK MAN'S DAUGHTER
TO DATE,
TOO BLACK FOR THE WHITE MAN'S
DAUGHTER,
AND THE WRONG SHADE OF BROWN
FOR THE LATINO MAN'S DAUGHTER.
AND FATHERS WOULD TELL ME,
"YOU NEED TO FIND YOUR
OWN KIND TO DATE."
WELL, IN 1970S AND 80S,
WHO WAS MY KIND?
THEY DIDN'T EXIST.
SO AS UNSAFE AND UNFITTING
AS WE FELT OFTEN OUT THERE,
AT HOME, WE ALWAYS FELT SAFE.

Nam says WELL, HOW DID YOUR PARENTS HELP
YOU NAVIGATE THAT WORLD OUTSIDE?

Tim says I THINK THEY HELPED US MOST OUT
THERE BY WHAT THEY DID HERE.
THEY ALWAYS WERE THE GROUNDING,
THEY WERE THE ROOT,
THEY WERE THE ANCHOR
THAT ALWAYS SAID,
"NO MATTER WHAT HAPPENS
OUT THERE,
YOU ARE ALWAYS ACCEPTED HERE."
NO MATTER HOW MUCH
WE MIGHT SCREW UP,
HOW MUCH TROUBLE
WE MIGHT GET INTO OR WHATEVER,
THERE WAS NEVER ANY QUESTION
THAT THEY LOVED US
AND LOVED US UNCONDITIONALLY
AND MATTER OF FACT,
AND THAT MADE ALL THE
DIFFERENCE WHEN YOU FACE
SOMETHING OUT THERE
THAT WAS HARD.
YOU ALWAYS KNEW THAT MOM AND DAD
HAD YOUR BACK.
IT WAS ALWAYS GOOD BACK HOME.

NAM SAYS SO THE DIFFERENCE WAS THAT
YOU KNEW YOU WERE LOVED.

TIM SAYS MM HMM.
ABSOLUTELY.

Nam says AND THIS WAS IN THE STATES.
BUT... SO YOU END UP GETTING
MARRIED TO A YOUNG WOMAN
FROM WINNIPEG.
PEG CITY, HOLLA.

Tim says YEAH.

Nam laughs and says AND YOU MET HER
IN BIBLE SCHOOL, RIGHT?

Tim says THAT'S RIGHT.

Nam says AND YOU AND SHERYL EVENTUALLY
MOVED TO WINNIPEG.
SHERYL IS YOUR WIFE'S NAME.

TIM SAYS YES.

Nam says HOW CHALLENGING WAS THAT MOVE
FOR YOU?

The caption changes to "Relocation and adaptation."

TIM SAYS OH MY.
I HATED WINNIPEG.
THE FIRST TWO YEARS
THAT I LIVED THERE,
I WOULD HAVE GIVEN MY EYE
TEETH TO GET OUT.

NAM SAYS WHAT WAS CHALLENGING?

Tim says IT WAS -40 DEGREES ALL WINTER
THAT YEAR.
LIKE IT WAS COLD.
WINNIPEG IS WHAT EVERYBODY
THINKS IT IS.
IT'S COLD.
IT IS.
BUT I THOUGHT I UNDERSTOOD
THAT MOVING THERE.
I THOUGHT I UNDERSTOOD WINNIPEG.
WE HAD BEEN MARRIED
FOR FOUR YEARS,
WE HAD BEEN
BACK AND FORTH LOTS.
YOU KNOW, THESE FOLKS LIVED
IN THE SAME HOUSE AS WE DO,
THEY SPOKE THE SAME
LANGUAGE THAT WE DO.
THEY GO TO THE SAME MCDONALD'S
THAT WE DO.
TURNS OUT, WE'RE NOTHING... WELL,
THERE'S LOTS OF WAYS
THAT WE'RE NOT ALIKE,
AMERICANS AND CANADIANS.
SO THAT FIRST COUPLE OF YEARS
WAS A HUGE CULTURE SHOCK
AND IT WAS JUST TOUGH.
IT WAS JUST DOWNRIGHT HARD.

NAM SAYS AND IN THE BOOK,
YOU WRITE ABOUT A STORY
WHERE YOU'RE WASHING
DISHES ONE DAY...

TIM SAYS OH, YEAH.

Nam says LOOKING OUTSIDE,
AND YOU SEE... CAN YOU TELL US
THE STORY?

Tim says WELL, I'M STANDING WASHING
DISHES SEPTEMBER 21ST, 1989.
AND I SEE THIS STUFF IN THE AIR
AND I ASKED MY WIFE.
"IS SOMETHING BURNING?"
AND SHE SAID,
"WHAT DO YOU MEAN?"
"THERE'S ASH IN THE AIR.
IS THERE SOME KIND
OF TREE
THAT'S PRODUCING SOMETHING,
BECAUSE..."
SHE WALKS OVER TO THE WINDOW,
LAUGHS, AND SAYS,
"SWEETHEART, IT'S SNOWING."

[NAM LAUGHING]

TIM SAYS I'M LIKE, "I DID NOT KNOW
THAT IT SNOWED IN SUMMER
IN WINNIPEG."

Nam laughs and says AUTUMN, FALL.

Tim says SEPTEMBER 21ST IS STILL PRETTY
MUCH SUMMER IN KANSAS.

NAM SAYS THAT WAS PRETTY SHOCKING.

Tim says OH, YEAH.

Nam says WELL, AFTER YOU MOVED
TO WINNIPEG,
YOU HAD A CHILD,
TIM JR.

TIM SAYS YES.

Nam says YOU DECIDE TO GO BACK TO
SCHOOL AND HOW DID YOU END UP
IN NURSING, WHICH,
AS YOU PUT IN THE BOOK,
YOU INITIALLY SAW AS,
"A GIRL'S JOB."

Tim says YEAH.
YEAH, SORRY, GALS.
I DID.

NAM SAYS YEAH.

The caption changes to "Tim Hague. U-Turn Parkinson's."

Tim says I HAVE TO ADMIT IT.
MOM WAS NOT A NURSE
BUT SHE CARED FOR ELDERLY FOLKS
IN OUR HOME FOR YEARS.
SO I WAS VERY FAMILIAR WITH A
LOT OF THE WORK THAT NURSES DO.
AT 27 YEARS OLD, I FOUND MYSELF
MARRIED WITH A CHILD
AND BASICALLY UNEMPLOYABLE.
I HAD NO REAL POSTSECONDARY
EXCEPT SOME BIBLE SCHOOL.
THAT TIME IN LIFE
HAD COME TO AN END
AND I DIDN'T
KNOW WHAT TO DO.
SO I STARTED HUNTING,
AND MY BROTHER-IN-LAW, BRAD,
says TO ME ONE DAY, "HAVE YOU
EVER CONSIDERED BEING A NURSE?"
I'M LIKE, "NO."
BUT HE WAS GOING INTO PHYSIO
AND THE MORE WE TALKED ABOUT IT,
THE MORE I STARTED
THINKING ABOUT IT.
I THOUGHT, "I KNOW THIS."
"I'M FAMILIAR WITH THIS.
I SHOULD LOOK MORE INTO THIS."
AND SO AS I DID, I SAW THAT
IT WAS A TWO-YEAR DIPLOMA,
GOOD PAY WHEN YOU COME OUT,
PORTABLE,
COULD GO BACK
TO THE STATES IF I WANTED TO
OR ANYWHERE IN THE WORLD.
AND THE MORE I LOOKED AT IT,
THE MORE I LIKED IT.

NAM SAYS HOW DID THAT DECISION
CHANGE YOUR LIFE?

TIM SAYS IT CHANGED EVERYTHING.
IT WAS THE BEST CAREER DECISION
I THINK I COULD HAVE EVER MADE
BECAUSE I LOVE WORKING
WITH PEOPLE,
I LOVE BEING A BEDSIDE NURSE.
I LOVE THAT NITTY-GRITTY DIRTY
STUFF THAT EVERYBODY ELSE SAYS,
"HOW IN THE WORLD
DO YOU DO THAT?"
BECAUSE IT IS... NURSING IS
ONE OF THOSE THINGS
THAT SO FEW PEOPLE ON THE PLANET
WOULD DO... THAT WILL DO
FOR ONE ANOTHER.
WE FIND OURSELVES IN SOME
OF THE MOST PERSONAL,
INTIMATE PLACES WITH PEOPLE
THAT SO FEW ARE WILLING TO GO.
AND TO BE ABLE
TO MANAGE THAT PROFESSIONALLY
AND TO HELP PEOPLE IN SOME
OF THEIR MOST DIFFICULT MOMENTS,
HAS BEEN SOME OF THE MOST
MEANINGFUL WORK
THAT I WILL PROBABLY EVER DO.

Nam says AND WHAT ROLE DO YOU THINK YOU
BEING A NURSE HAD IN HELP TO
DIAGNOSE YOURSELF WITH MAYBE
SEEING THAT SOMETHING WAS WRONG?
'CAUSE SOMEBODY ELSE, IF THAT
HAPPENED TO THEM, THEY MIGHT NOT
THINK IT'S ANYTHING.

TIM SAYS SURE.
I MEAN, I SELF-DIAGNOSED
REALLY EARLY.
I MEAN, I JUST HAD A SMALL
TREMOR IN MY LEFT BIG TOE
BUT I KNEW;
I KNEW THAT WASN'T NORMAL.
I KNEW THAT SOMETHING
WAS CAUSING THAT.
IF NOT STRESS THAN SOMETHING
PHYSIOLOGICAL
AND THEN DAD HAD PASSED AWAY
WITH PARKINSON'S.
I HAD A... I HAVE A HALF-SISTER
WITH MS.
AND I KNEW THAT IT WAS PROBABLY
ONE OF THOSE TWO THINGS.
AND THAT HARKENED
NOT ONLY TO THEIR EXPERIENCE
BUT JUST KNOWING
FROM MY MEDICAL BACKGROUND
THAT THIS ISN'T NORMAL.

Nam says BUT THAT MUST HAVE BEEN... WHAT
WAS THAT MOMENT LIKE
BECAUSE IN THE BOOK,
YOU WRITE THAT YOU'RE SITTING,
HAVING A COFFEE AND THEN YOUR
TOE STARTS TO TREMBLE.

Tim says YEAH.

NAM SAYS WHAT WAS THAT MOMENT
LIKE TO THINK
THAT MAYBE IT WAS PARKINSON'S?

Tim says IT WAS VERY... YOU'RE RATTLED,
RIGHT?
NOT QUITE SURE WHAT TO THINK.
YOU DON'T WANT TO BELIEVE IT.
YOU DON'T WANT TO THINK THAT
YOU COULD BE RIGHT ABOUT THIS.
BUT AGAIN, YOU KNOW THAT THERE'S
NO REASON FOR YOUR TOE
TO BE TWITCHING.
THAT'S NOT A RIGHT THING
TO HAVE HAPPENING.
SO I JUST DECIDED TO DO WHAT
EVERY GOOD HUSBAND DOES
AND DO NOTHING.
IGNORE IT.

[LAUGHS]

Nam says UNTIL... UNTIL YOU'RE HALFWAY
AROUND THE WORLD
AND THEN YOU TELL YOUR WIFE
WHAT YOU'RE THINKING.

TIM SAYS THAT'S RIGHT.

Nam says YOU'VE TALKED ABOUT
SOME OF THE SYMPTOMS
AND SOME OF THE SYMPTOMS
THAT WE'RE FAMILIAR WITH
ARE THE TREMORS
OR SHAKINESS.
BUT YOU ALSO WRITE ABOUT WHAT
YOU CALL THE NON-MOTOR SYMPTOMS
OF THE DISEASE.
CAN YOU EXPLAIN WHAT THOSE ARE?

Tim says SURE.
THERE ARE LOTS OF THINGS THAT
PEOPLE DON'T SEE
ABOUT THIS DISEASE
AND I LIKE TO SAY
THAT PARKINSON'S IS WELL-KNOWN
BUT POORLY UNDERSTOOD
BECAUSE PEOPLE
TYPICALLY SEE THAT TREMOR.
THEY OFTEN SEE THE RIGIDITY,
THE SLOWNESS,
THE LOSS OF BALANCE.
THEY DON'T TEND TO SEE
THE ANXIETY, THE DEPRESSION.
ONE THAT I LIKE TO TALK ABOUT
IS MILD COGNITIVE IMPAIRMENT,
WHICH I HAVE.
IT DOESN'T MEAN THAT I'M
DEMENTED OR HAVE ALZHEIMER'S
OR ANYTHING LIKE THAT.
IT MEANS THAT YOU CAN'T PROCESS
LARGE VOLUMES
OF INFORMATION ANYMORE.
YOU CAN'T MULTI-TASK
AND I WAS A NURSE, OF COURSE.
WORKING AS A MANAGER,
I HAD OVER 200 EMPLOYEES
AT THE TIME WHEN I RETIRED
AND IT'S THAT ABILITY
TO HAVE MULTIPLE EMAILS
COMING IN EVERY DAY,
MULTIPLE PHONE CALLS
COMING IN EVERY DAY.
A CODE HAPPENING DOWN THE HALL.
AND ALL OF THE STUFF THAT GOES
ON AND BEING ABLE TO PRIORITIZE
THAT IN YOUR HEAD, HOLD IT,
AND RESPOND TO IT.
AND I JUST SIMPLY CAN'T DO
THAT ANYMORE.
IT'S TO THE POINT
WHERE MY WIFE SAYS,
"YOU WANT TO GO FOR SUPPER?"
AND THEN SHE LISTS SIX OPTIONS.
IT'S SIMPLY OVERWHELMING
AND IT'S NOT EASY TO ADMIT THAT
BECAUSE THOSE ARE THINGS THAT,
AS A GUY,
YOU WANT TO BE IN CONTROL
OF YOUR LIFE, RIGHT?
YOU WANT TO BELIEVE THAT YOU CAN
JUGGLE THOSE 12 BALLS
LIKE YOU ALWAYS COULD
AND ADD A COUPLE MORE TO THEM.
BUT THE SIMPLE FACT IS THAT IF
YOU GIVE ME TOO MUCH TOO FAST...

NAM SAYS EVERYTHING FALLS.

Tim says EVERYTHING SEIZES.
IT JUST SEIZES UP AND YOU
LITERALLY CANNOT PROCESS IT.

NAM SAYS WHAT WAS THAT LIKE FOR YOU
TO COME TO THAT REALIZATION
THAT YOU COULDN'T DO IT ALL?

Tim says WELL, THAT'S TOUGH
BECAUSE I WAS ALWAYS THAT GUY
THAT COULD JUGGLE 12 JUGGLES
AND LOOK FOR TWO MORE.
I COULD GIVE A SPEECH VERBATIM
FROM MEMORY, NO NOTES.
ALWAYS.
I ALWAYS HAVE NOTES NOW.
I HAVE BEEN IN THE MIDDLE OF
SPEECHES THAT I'VE GIVEN
DOZENS AND DOZENS
OF TIMES
AND LITERALLY FORGET
WHERE I'M GOING.
AND IT'S JUST THE WAY
OUR MINDS WORK NOW.
IT'S JUST THE WAY IT IS
AND IT'S FRUSTRATING
BECAUSE PEOPLE DON'T
SEE THESE THINGS.
THEY DON'T ASSOCIATE THESE
THINGS WITH PARKINSON'S.
THEY THINK, "OH, YOU HAVE A
TREMOR; OH, YOU'RE SLOW."
IF IT WERE JUST THAT,
PARKINSON'S WOULD BE A CAKEWALK
FOR ME.
BUT THERE ARE SO MANY
MORE THINGS.
THE FACT THAT IT OFTEN AFFECTS
PEOPLE'S BOWELS... AND THEY END UP UNABLE
TO PROCESS THEIR FOOD.
THEY LITERALLY CAN'T EAT
AND PROCESS THEIR FOOD
BECAUSE OF THE PARKINSON'S.
IT IS A NASTY DISEASE
THAT CAN AFFECT PEOPLE
IN JUST HORRIBLE WAYS.

Nam says AND YOU SAID THAT IT'S SOMETHING
THAT YOU KNOW
IT'S NOT GOING TO STOP.
IT'S JUST GOING TO GET WORSE
WITH TIME.

TIM SAYS THAT'S RIGHT.

NAM SAYS AND THAT REALIZATION
MUST BE WHAT?

Tim says THERE'S A COUPLE OF WAYS I WOULD
EXPLAIN THAT.
A BUDDY RECENTLY SAID, YOU KNOW,
"IT'S NOT A DEATH SENTENCE,
IT'S A LIFE SENTENCE."
AND THERE'S A DOWNSIDE
TO THAT
BECAUSE THERE'S A PART
OF YOUR BRAIN THAT SAYS IT WOULD ALMOST BE BETTER
IF YOU KNEW YOU HAD CANCER
AND YOU GOT FIVE YEARS.
THEY GIVE YOU A PROGNOSIS
OF FIVE YEARS,
YOU GO MAKE THE BEST OF THOSE
FIVE YEARS AND GO FOR IT
VERSUS A DEATH OF 1,000 CUTS
WHERE THIS IS GOING TO LAST
THE REST OF MY LIFE EVERY DAY,
NONSTOP.
BECAUSE EVEN WHEN THE TREMOR
ISN'T THERE, IT NEVER LEAVES.
IT'S ALWAYS THERE.
EVERY DAY THAT YOU WAKE UP
AND YOU'RE A LITTLE BIT STIFFER,
YOU HAVE A LITTLE BIT MORE
DIFFICULTY WALKING, YOU WONDER,
"IS THIS THE DAY THAT I'M GOING
TO HAVE TO INCREASE MY MEDS?"
"IS THIS THE DAY I'M
GOING TO HAVE TO THINK
ABOUT HAVING SURGERY?"
"IS THIS THE DAY
THAT I CAN'T DO THIS?"
THERE'S ALWAYS ANOTHER
STEP COMING.
ALWAYS.
ALWAYS.
ALWAYS.
TIL THE DAY YOU DIE,
THIS WILL BE WITH YOU.

He sighs.

With a broken voice, he continues
AND THAT MESSES WITH YOUR HEAD.
IF YOU DON'T STAY
IN CONTROL OF PERSEVERING,
NOT LIVING FOR TOMORROW,
BUT LIVING FOR TODAY,
IT CAN OVERWHELM YOU.

NAM SAYS AND SPEAKING
OF PERSEVERANCE,
IN THE BOOK, YOU WRITE THAT
WHILE THERE'S CURRENTLY NO CURE
FOR PARKINSON'S, THERE ARE
SOME DRUG TREATMENTS,
INCLUDING LEVOCARB...

Tim says YEAH.

NAM SAYS AM I SAYING THAT RIGHT? WHICH YOU TAKE.
HOW DOES THAT DRUG... WHAT
DOES THAT DRUG DO
AND HOW WELL DOES IT DO IT?

The caption changes to "Interventions."

Tim says IF I DIDN'T TAKE LEVOCARB,
TODAY,
I WOULD BE PROBABLY
NOT SPEAKING WELL
BECAUSE MY TREMOR
HAS GONE ON TO INVOLVE MY JAW
AND I SHAKE WHEN MY MEDS
WEAR OFF IN MY JAW
AND IT CAUSES ME TO STUTTER
AND WHATNOT.
I HAVE A HARD TIME WALKING.
MY TOES CURL UNDER.
I CERTAINLY WOULDN'T BE RUNNING
BECAUSE EVEN NOW, WHEN I RUN,
I HAVE TO FIGHT TO KEEP
MY FOOT RELAXED
SO THAT IT STAYS UNCURLED.
I WOULDN'T BE ABLE TO TYPE,
I PROBABLY WOULDN'T BE WRITING
AT ALL.
MY WRITING
HAS ALWAYS BEEN ATROCIOUS...

[NAM CHUCKLES]

Tim says BUT NOW
IT'S COMPLETELY ILLEGIBLE.
I WOULD NOT DO MUCH WITHOUT
THESE DRUGS... AND THERE ARE SOME
FOLKS WHO HAVE HAD DBS,
DEEP BRAIN STIMULATION,
THAT WOULD BE... THEY WOULD BE
IN THEIR 40S, 50S,
AND BEDRIDDEN WITHOUT IT.
BUT WITH IT, THEY'RE ABLE TO
LIVE ALMOST NORMAL LIVES.

NAM SAYS WELL, LET'S TALK MORE ABOUT
THE AMAZING RACE,
'CAUSE I THINK THIS
IS WHAT INTRODUCED YOU TO CANADA
AND TO THE WORK
THAT YOU'RE DOING NOW
IN THE PARKINSON'S
COMMUNITY.

Tim says YEAH.

Nam says SO YOUR WIFE CONVINCED YOU TO
APPLY AND SHE SAID, YOU KNOW,
"THE AMAZING RACE
LIKES
FATHER-SON DUOS
AND THE PARKINSON'S
WOULD BE SOMETHING
THAT WOULD MAKE YOU STAND OUT."
AND SO YOU WRITE ABOUT THIS...

Another quote from Tim's book appears on screen, under the title "Featured attraction." The quote reads "Was I a monkey in a zoo to be put on display? Was I to be ogled like the bearded lady of circuses gone by? I certainly had no desire to be pitied or humiliated."

Nam says LOOKING BACK
ON THE EXPERIENCE
OF BEING ON
THE AMAZING RACE CANADA,
WERE YOUR CONCERNS ABOUT BEING
ON DISPLAY JUSTIFIED AT ALL?

The caption changes to "The Race is on."

TIM SAYS NO.
THE RACE... THE PRODUCERS AT
INSIGHT DID SUCH A FANTASTIC JOB
OF NOT ONLY PORTRAYING CANADA
BUT JUST TELLING MY STORY.
I ALWAYS KNEW THEY WERE LOOKING.
I MEAN, IT'S QUITE OBVIOUS WHEN
A CAMERA'S LOOKING AT YOU,
AT YOUR HAND.

[LAUGHS]

Tim says IT'S CLEAR THAT THEY'RE SHOOTING
MY PARKINSON'S, RIGHT?
BUT IN THE END, THEY DID SUCH A
WONDERFUL JOB OF RESPECTING ME,
RESPECTING THE DISEASE, AND JUST
TELLING THE HONEST STORY
OF WHAT I WAS LIVING WITH.

NAM SAYS AND YOU WERE
KIND OF ANXIOUS
IN SEEING
THE FIRST EPISODE...

TIM SAYS OH, YEAH...

The caption changes to "Watch us anytime: tvo.org, Twitter: @theagenda, Facebook Live, YouTube."

Nam says BECAUSE YOU... IN YOUR
WORDS, YOU SAID THAT
YOU DIDN'T WANT TO BE PORTRAYED
AS THE VILLAGE IDIOT?
IS THAT WHAT...?

Tim says THAT'S RIGHT.

NAM SAYS AND WHAT WAS IT LIKE TO SEE
THAT FIRST EPISODE?

Tim says IT WAS VERY... I WAS VERY
ANXIOUS.
WE HAD BEEN ASKED LOTS TO DO
VIEWING PARTIES WITH THE PUBLIC
AND WE JUST SAID NO.
I COULD NOT HANDLE THAT PRESSURE
BECAUSE I DIDN'T KNOW.
I DIDN'T KNOW WHAT THE RACE
WAS GOING TO DO TO ME.
I DIDN'T KNOW... WE WON, YES,
BUT WE LOST THE ENTIRE RACE
UNTIL WE WON.
AND SO I DIDN'T KNOW IF WE WERE
GOING TO LOOK LIKE FOOLS
THE WHOLE TIME.
I DIDN'T KNOW IF MY PARKINSON'S
WAS GOING TO BE PORTRAYED
AS THIS BIZARRE THING.
BUT... SO WE GOT THROUGH THAT
FIRST EPISODE WITH FAMILY,
SAW THAT IT WAS GOING TO BE OKAY
AND THEN WE STARTED DOING IT
WITH THE PUBLIC.

Nam says WELL, THE FIRST CHALLENGE
IN THE FIRST EPISODE,
YOU DID SOMETHING
THAT HAD ME SHAKING IN MY BOOTS.
LET'S TAKE A LOOK
AT THAT CHALLENGE.
SHELDON, PLEASE ROLL.

Another clip from The Amazing Race plays. A caption reads "Tim Senior and Tim Junior, currently in 5th place."

Tim Junior says I AM A LITTLE BIT
NERVOUS ABOUT THIS ONE.
WITH MY DAD'S
PARKINSON'S AND STUFF.
HE GETS REALLY, REALLY SHAKY.

Tim Senior wears a harness, hardhat and ropes, and climbs down the structure of a bridge onto a beam suspended at a great height.

Tim Junior says LET'S GO, POPPY!
YOU GOT IT, DAD.
HERE WE GO!

(Dramatic music plays)
Tim Senior walks along the beam as Tim Junior watches from below.

Tim Junior says YOU GOT IT, DAD!
MAN.
THIS GUY'S MY HERO RIGHT HERE.
I'M REALLY PROUD OF HIM.

The clip ends.

NAM SAYS I MEAN, ANXIETY AND ALSO,
LIKE I FEEL LIKE I WANT TO CRY
WATCHING THAT CLIP.
BUT IN THE BOOK, YOU WRITE THAT
WATCHING THIS SEQUENCE
ON TELEVISION
WAS INCREDIBLY DIFFERENT
FROM THE ACTUAL EXPERIENCE.
IN WHAT WAYS?

TIM SAYS WATCHING THAT SEQUENCE
RIGHT NOW... I WAS LOOKING AGAIN.
ALL YOU CAN SEE IS MY HAND DOING
THIS A LITTLE BIT, RIGHT?
I FELT LIKE I WAS
ALL OVER THE PLACE.
I FELT LIKE I WAS GOING TO FALL
OFF THE BEAM.
AND THEN TO WATCH MYSELF,
I WAS ABSOLUTELY STUNNED
BECAUSE IT DIDN'T LOOK ANYTHING
LIKE HOW I FELT.

NAM SAYS SO IT MAKES
YOU SELF-CONSCIOUS?

Tim says OH, HUGELY.

Nam says PARKINSON'S.
WHAT DOES IT MEAN
TO SEE YOUR SON SAYING THAT,
"THAT'S MY HERO"?

Tim says WHAT DAD DOESN'T WANT TO BE A
HERO TO THEIR KID, EH?
THAT MEANS THE WORLD.

NAM SAYS THERE WAS A SUCCESSFUL
MOMENT IN YOUR RACE.
TELL US ABOUT A CHALLENGE WHERE
YOUR PARKINSON'S
REALLY GOT IN THE WAY
OF COMPLETING A TASK?

Tim says THE BIGGEST ONE WAS IN IQALUIT.
WE WERE ACTUALLY IN SECOND PLACE
THAT DAY.
WE ENDED IN SECOND PLACE.
IT WAS AFTER COMING
IN LAST THE DAY BEFORE.
BUT WE HAD DONE A LOT OF
PHYSICAL CHALLENGES THAT DAY
AND BY THE TIME
WE GOT TO THE END,
I WAS ABSOLUTELY EXHAUSTED.
AND WE HAD... THE CLUE SAID,
"RUN A KILOMETRE,
FIND JON AT THE MAT."
WELL...

Nam says JONATHAN THE HOST?

Tim says JON THE HOST, YEAH.
AND I WAS STOKED
'CAUSE I THOUGHT,
"I'VE GOT ENOUGH JUICE
IN ME TO RUN A K.
I CAN DO THAT."
SO WE GET ABOUT 500 METRES DOWN,
TURN A CORNER, AND THERE'S JON.

NAM SAYS ON TOP.

Tim says ON TOP OF THIS HILL AND I BET
YOU IT WASN'T THAT BIG OF A HILL
BUT IT LOOKED LIKE A MOUNTAIN.
IT FELT LIKE A MOUNTAIN
RIGHT THEN.
AND THE ONLY WAY I GOT UP THAT
HILL THAT DAY
WAS BECAUSE TIM JR. SAID,
"DAD, GRAB MY COAT."
I HELD ON TO HIS COAT AND HE
LITERALLY PULLED ME UP THE HILL
AND WITHOUT THAT THAT DAY,
MY PARKINSON'S, I WAS SHAKING,
I WAS JUST FREAKED OUT.
EVERYTHING WAS FALLING APART,
AND IF HE HADN'T BEEN
WILLING TO DO THAT,
I DON'T KNOW WHERE I WOULD
HAVE ENDED UP THAT DAY.

NAM SAYS WELL, YOUR BOOK IS CALLED
PERSEVERANCE
AND I THINK PEOPLE CAN EASILY
SEE HOW IT APPLIES
TO HOW YOU APPROACH
THE AMAZING RACE.
HOW DO YOU THINK THE WORD FITS
WITH TIM JR.'S EXPERIENCE?
YOUR SON'S EXPERIENCE?

Tim says OH, I THINK HE WOULD SAY
THAT HE LEARNED A LOT
ABOUT HOW TO DEAL WITH A PARENT
WITH PARKINSON'S.
THAT, YOU KNOW,
OUR KIDS,
WE DON'T TELL
THEM EVERYTHING, RIGHT?
THEY DON'T SEE EVERYTHING.
THEY'RE OUR KIDS.
BUT SPENDING THE TIME
THAT WE DID TOGETHER
BECAUSE IT'S DAY AFTER DAY
AFTER DAY, 24-7,
YOU CAN'T HIDE FROM HIM.
HE'S THERE.
HE GETS TO SEE THE GOOD,
THE BAD, AND THE UGLY
AND HE LEARNED WHAT IT MEANT TO
PERSEVERE... FOR ME TO PERSEVERE
WITH PARKINSON'S
AND I THINK THAT FOR HIM,
IT WAS A NEW LEARNING
OF WHAT IT MEANS FOR HIM
AS MY KID TO PERSEVERE
WITH ME AND MY PARKINSON'S.

NAM SAYS AND SINCE WINNING
THE AMAZING RACE CANADA,
YOU SPEND A LOT OF
TIME SPEAKING TO VARIOUS GROUPS
ABOUT PARKINSON'S.
HOW DIFFERENT IS YOUR MESSAGE
WHEN YOU SPEAK TO PEOPLE
WITH THE CONDITION AS OPPOSED TO
SPEAKING TO A GENERAL AUDIENCE?

Tim says YOU KNOW WHAT?
IF I'M IN A BOARDROOM,
A CORPORATE ENVIRONMENT,
WE'RE TALKING ABOUT HOW TO TAKE
THE STRUGGLES
THAT YOU FACE IN BUSINESS
AND APPLY THESE LIFE LESSONS
THAT I'VE LEARNED TO THAT
AND HOW YOU CAN PERSEVERE
IN THE DIFFICULTIES OF WORK.
WHEN IT LOOKS LIKE THERE'S
NO WAY FORWARD,
HOW CAN YOU PUT ONE MORE FOOT
IN FRONT OF THE OTHER?
WHAT ARE THE SECRETS AND THE
CHALLENGES OF THOSE SEVEN SKILLS
THAT YOU'RE GOING TO PUT
IN PLACE THERE
AND TO TAKE YOUR
BUSINESS FORWARD.
WHEN I'M TALKING TO A
PARKINSON'S GROUP,
WELL,
NOW WE'RE FAMILY.
NOW WE CAN TALK ABOUT
ALL THE ASPECTS OF LIFE.
HOW DO YOU DEAL WITH THAT
MORNING THAT YOU GET UP
AND YOU DON'T WANT
TO DO THIS ANYMORE?
YOU JUST DON'T.
YOU WANT IT ALL TO GO AWAY
AND YOU'RE DONE.
YOUR WIFE DOESN'T GET IT
ANYMORE.
MAYBE YOUR HUSBAND LEAVES.
THE KIDS ARE HAVING A ROUGH TIME
BECAUSE MOM AND DAD
SOMETIMES LOOK ODD
AND HOW DO WE HANDLE THAT?
HOW DO WE KEEP GOING FORWARD
WHEN WE JUST DON'T SEE
A WAY FORWARD?
WHEN WE DON'T SEE ANY SUCCESS
IN THIS AND WHAT ARE THE THINGS
THAT WE CAN EMPLOY TO NOT
JUST... DON'T GIVE UP.
LIKE I'VE NEVER UNDERSTOOD,
"DON'T GIVE UP."
WHAT DOES THAT MEAN?
"DON'T GIVE UP.
DON'T GIVE UP."
"OKAY, I'M NOT GIVING UP.
WHAT DO I DO?
WHAT DO I DO?"
SO WITH
PERSEVERANCE,
I'VE BROKEN IT DOWN
TO THE SEVEN SKILLS
AND WE TALK ABOUT
"WHAT CAN YOU DO
TO NOT JUST SURVIVE
BUT TO THRIVE IN THE FACE
OF THIS DISEASE?"

Nam says WELL, WHAT HAVE YOU LEARNED
ABOUT YOURSELF THROUGH
THE PROCESS
OF WRITING THIS BOOK?

Tim says I DISCOVERED I CAN WRITE
A LITTLE.

Nam laughs and says AND YOU'RE FUNNY
TOO.

Tim says WELL, YEAH, I DO SAY THAT TONGUE
IN CHEEK BUT I'M SERIOUS.
I DIDN'T PLAN THIS.

NAM SAYS YEAH.

Tim says I DIDN'T ANTICIPATE THIS.
AND PEOPLE HAVE TAKEN
A LOT FROM THE BOOK
THAT I JUST... I DIDN'T ANTICIPATE
AND I'VE COME
TO REALLY LOVE WRITING.
IT'S A NEW MEDIUM FOR ME.
I'VE BEEN A SPEAKER
FOR A LONG TIME.
BUT I'M FINDING THAT I CAN
SAY THINGS DIFFERENTLY
THROUGH WRITING THAN I
CAN THROUGH SPEAKING
AND I'M REALLY ENJOYING IT
AND I'VE LEARNED
THROUGH THE WHOLE PROCESS
THAT I'M CAPABLE OF MORE
THAN I THOUGHT I WAS.
I ALWAYS HAD A PRETTY GOOD
HEALTHY SELF-ESTEEM
BUT HERE AGAIN, I'M LEARNING
THAT, YOU KNOW WHAT?
EVEN IN DARK TIMES,
EVEN IN TOUGH TIMES,
THERE IS MORE THAT I CAN DO.

Nam says WELL, TIM, IT'S BEEN SUCH A
NICE... IT'S BEEN SO NICE
HAVING YOU HERE.
THANK YOU FOR WRITING THIS BOOK.

TIM SAYS OH, THANK YOU, NAM.

The caption changes to "Producer: Gregg Thurlbeck, @GreggThurlbeck."

Nam says I THINK IT REALLY HELPS US
UNDERSTAND
THAT YOUR CIRCUMSTANCES
DON'T HAVE TO DETERMINE
THE QUALITY OF YOUR LIFE
OR THE OUTCOME OF YOUR LIFE.

Tim says THAT'S RIGHT.

NAM SAYS IT'S BEEN GREAT
HAVING YOU HERE.

Tim says THANK YOU.

Watch: My Life with Parkinson's