1 1

LORI NELSON

ALZHEIMER’S ADVOCACY DAY ADDRESS

TUESDAY, MARCH 13, 2018
OKLAHOMA STATE CAPITOL, ROOM 535

GOOD AFTERNOON.

MOST PEOPLE KNOW THAT

ALZHEIMER’S DISEASE IS A PROGRESSIVE

AND ULTIMATELY FATAL BRAIN DISEASE.

IT FOLLOWS A LONG AND TORTUROUS COURSE.

THERE IS CURRENTLY

NO TREATMENT OR CURE.

MOST DON’T KNOW

THAT YOUNGER PEOPLE

ARE DIAGNOSED WITH ALZHEIMER’S TOO.

1 1 of 36
2 2

I’M LORI NELSON.

I LEARNED FIVE MONTHS AGO,

AT THE AGE OF FIFTY-FOUR,

THAT I’M ONE OF APPROXIMATELY

TWO-HUNDRED-THOUSAND AMERICANS

D I A G N O S E D W I T H Y O U N G - O N S E T A L Z H E I M E R ’ S.

I’M OTHERWISE IN GREAT HEALTH.

I WAS DIAGNOSED WITH ALZHEIMER’S

MORE THAN TWENTY-FIVE YEARS BEFORE

THE AVERAGE AGE OF DIAGNOSIS.

2 2 of 36
3 3

I ’ M A W I F E,

AND MOTHER OF TWO

S C H O O L - A G E D C H I L D R E N.

M Y H U S B A N D J A S O N I S H E R E W I T H M E.

THIS AUGUST

WE WILL CELEBRATE OUR

TWENTIETH WEDDING ANNIVERSARY.

SINCE BEING DIAGNOSED,

I ’ M S P E N D I N G M O R E T I M E W I T H J A S O N,

AND I FEEL LIKE OUR MARRIAGE HAS GOTTEN

BETTER SINCE THIS HAPPENED.

3 3 of 36
4 4

WE HAVE TWO GREAT KIDS.

O U R S O N B E N J A M I N I S F I F T E E N Y E A R S O L D.

H E ’ S A H I G H S C H O O L F R E S H M A N,

LOVES PLAYING VIDEO GAMES,

AND IS LEARNING TO PLAY GOLF THIS SPRING.

OUR DAUGHTER GRACE IS TWELVE YEARS OLD.

SHE PLAYES THE VIOLIN IN THE

SIXTH GRADE ORCHESTRA,

AND SINGS IN THE SIXTH GRADE CHOIR.

BOTH ARE DOING WELL IN SCHOOL.

4 4 of 36
5 5

I’M ALSO HANGING OUT WITH THE KIDS MORE;

THEY HAVE BEEN SO SWEET.

BENJAMIN HUGS ME ONCE OR TWICE A DAY,

EVERY DAY.

EVERY NIGHT BEFORE BED,

HE HUGS ME

AND TELLS ME HE LOVES ME.

HE’S BEEN SO KIND AND HELPFUL TO ME.

GRACE HAS BEEN REALLY GOOD FOR ME TOO.

SHE AND I SPEND MORE TIME GIGGLING AND

TALKING ABOUT GIRL THINGS.

5 5 of 36
6 6

SHE’S A BIG PEP-TALKER.

WHEN I’M SAD,

SHE’LL ENCOURAGE ME AND REMIND ME

THAT WE HAVE TO ENJOY TODAY AND

SHE’LL START TELLING FUNNING STORIES.

IT’S SURPRISINGLY HELPFUL.

PROBABLY BECAUSE SHE’S ALREADY SURVIVED

CANCER,

SHE’S NOT AFRAID TO TALK ABOUT STUFF LIKE

THIS.

I’M PROUD OF BOTH KIDS.

6 6 of 36
7 7

I HAVE A DIFFERENT RELATIONSHIP WITH EACH

OF THEM.

THEY’RE DIFFERENT KIDS,

BUT THEY’RE BOTH DELIGHTFUL.

I L O V E T H E M V E R Y D E A R L Y.

I HOPE THAT I’LL BE AROUND LONG ENOUGH

T O S E E M Y G R A N D K I D S.

BUT, IF I’M NOT,

I KNOW THAT THEY’LL BOTH MAKE GOOD

C H O I C E S,

MARRY WELL,

AND HAVE GREAT KIDS TOO.

7 7 of 36
8 8

IT WAS SEVERAL YEARS AGO,

WHEN I WAS BUSY

WITH ALL OF THE ACTIVITIES

AND RESPONSIBILITIES OF BEING

A WIFE,

A MOTHER OF TWO YOUNG KIDS,

AND WORKING,

WHEN THE INITIAL,

IMPERCEPTIBLE SYMPTOMS BEGAN.

I UNDERSTAND THAT MY FAMILY AND OTHERS

HAD BEEN NOTICING,

FOR QUITE A WHILE,

WORRISOME LAPSES IN MY MEMORY,

AND IN MY ABILITY TO DO ROUTINE TASKS.

8 8 of 36
9 9

I WOULD GET LOST

DRIVING TO FAMILIAR PLACES.

I WOULD LOSE MY TRAIN OF THOUGHT.

I W O U L D S A Y W E I R D T H I N G S T O F R I E N D S.

I W A S H A V I N G A H A R D T I M E W R I T I N G.

THESE PROBLEMS CAME-AND-WENT.

I MUST HAVE BEEN EXPERIENCING SOME OF

THESE SUBTLE AND SPORADIC,

EARLY SYMPTOMS

THREE-AND-A-HALF YEARS AGO,

WHEN MY DAUGHTER GRACE,

WHO WAS EIGHT AT THE TIME,

WAS DIAGNOSED WITH STAGE-FOUR

KIDNEY CANCER.

9 9 of 36
10 10

I HAD TROUBLE REMEMBERING

SPECIFICS ABOUT HER DIAGNOSIS

AND HER TREATMENTS.

AT THE TIME,

THIS WAS CHALKED UP TO

THE STRESS OF THAT EXPERIENCE.

OVER TIME, THOSE CLOSEST TO ME COULD TELL

THESE LAPSES WERE GETTING WORSE,

AND THEY BEGAN TO FEAR THAT IT WAS

SOMETHING MORE SERIOUS THAN STRESS —

A N D I T C E R T A I N L Y W A S N ’ T O L D A G E.

10 10 of 36
11 11

IN MY EARLY FIFTIES,

WHO WOULD HAVE DREAMED

THAT THESE WERE SIGNS OF ALZHEIMER’S?

I KNEW I WAS STRUGGLING,

BUT I DIDN’T KNOW WHY.

I WAS ALSO GROWING CONCERNED

THAT IT MIGHT BE SOMETHING SERIOUS.

SOMETHING WAS HAPPENING TO ME

AND I DIDN’T KNOW WHAT IT WAS.

I W A S E M B A R R A S S E D A N D S C A R E D.

11 11 of 36
12 12

NEARLY A YEAR AGO,

JASON BEGAN SUGGESTING THAT

WE TRY TO FIGURE OUT WHAT’S GOING ON.

I REALLY DIDN’T WANT TO GO TO THE DOCTOR.

I W A S S C A R E D.

BUT AFTER FIVE MINOR FENDER-BENDERS —

MOSTLY INVOLVING STATIONARY OBJECTS,

AND TRYING TO COOK RICE IN THE OVEN,

JASON INSISTED THAT WE SEEK HELP.

AT THIS POINT, IT HAD BECOME A SAFETY

ISSUE.

HE DID THE RIGHT THING.

12 12 of 36
13 13

A FEW MONTHS AFTER FIRST SEEKING HELP,

WE FINALLY MET WITH A NEUROLOGIST,

SOMEONE I ALREADY KNEW WELL.

AT THE TIME,

I DIDN’T KNOW WHY HE WAS TESTING ME.

BUT I KNEW IT WASN’T GOOD.

JASON EXPLAINED EVERYTHING TO ME

AND HELPED ME UNDERSTAND

WHAT WAS HAPPENING AND WHY.

IT WAS STILL VERY STRANGE.

AFTER SEVERAL EVALUATIONS AND A PET SCAN,

I WAS FINALLY DIAGNOSED IN OCTOBER,

ON JASON’S BIRTHDAY.

13 13 of 36
14 14

I HAVE A FEW NEW SYMPTOMS SINCE THEN,

AND THE EARLIER SYMPTOMS ARE

A LITTLE MORE NOTICEABLE

AND MORE FREQUENT.

BUT THEY ARE STILL

KIND OF HIT-AND-MISS.

I STRUGGLE MORE OFTEN

T O F I N D T H E R I G H T W O R D S,

AND REMEMBER WHERE I’M GOING

AND WHAT I’M DOING.

I’M PRONE TO WONDERING AROUND

T R Y I N G T O G E T S O M E T H I N G D O N E.

14 14 of 36
15 15

IT TAKES ME FOREVER TO DO

THE MOST SIMPLE THINGS, …

LIKE WRITE A NOTE.

I LITERALLY HAVE TO STOP

AND THINK ABOUT EACH LETTER AS I WRITE.

YOU’VE PROBABLY NOTICED THAT I HAVE SOME

DIFFICULTY READING MY NOTES,

BUT MEMORIZING THEM WAS NOT A GOOD

OPTION.

WHEN I HAPPEN TO NOTICE AND THINK ABOUT

THESE SYMPTOMS,

I T R E M I N D S M E O F W H A T I ’ M G O I N G T H R O U G H,

15 15 of 36
16 16

AND OF WHAT I’M LOSING,

A N D I T M A K E S M E R E A L L Y S A D.

I WONDER,

“WHAT’S NEXT?”

I KNOW HOW THIS WILL END,

BUT I DON’T KNOW WHAT COMES

BETWEEN NOW AND THEN.

16 16 of 36
17 17

D E M E N T I A, I N C L U D I N G A L Z H E I M E R ’ S,

IS PARTICULARLY CRUEL AMONG DISEASES.

THE DIAGNOSIS,

ITS SYMPTOMS,

AND ITS PROGNOSIS

HAVE HIT US VERY HARD.

HAVING ALZHEIMER’S AT MY AGE,

AND WITH SUCH A YOUNG FAMILY,

AND JASON

IN THE MIDDLE OF HIS CAREER,

PRESENTS US

W I T H U N E X P E C T E D,

R A R E,

A N D V E R Y D I F F I C U L T C H A L L E N G E S.

17 17 of 36
18 18

IT’S ALREADY STOLEN MY CAREER

IN PUBLIC RELATIONS.

IT’S ALREADY STOLEN MY INDEPENDENCE —

I D O N ’ T D R I V E A N Y M O R E.

IT’S SLOWLY STEALING MY ABILITY

T O D O T H I N G S I E N J O Y.

IT’S SLOWLY STEALING MY ABILITY

TO REMEMBER THINGS I THOUGHT

I WOULD NEVER FORGET,

LIKE THE BIRTHDAYS

AND AGES OF MY CHILDREN;

MY WEDDING ANNIVERSARY;

AND EVEN HOW OLD I AM.

18 18 of 36
19 19

IT’S SLOWLY STEALING MY ABILITY

TO BE THE MOTHER BENJAMIN AND GRACE NEED

AT THIS FORMATIVE TIME IN THEIR LIVES.

IT’S HARD WHEN THE KIDS TELL ME ABOUT

SCHOOL OR THEIR FRIENDS,

AND LATER ON I DON’T REMEMBER IT

WHEN THEY BRING IT UP.

SOMETIMES I’LL ASK THEM

HOW THEIR DAY WENT, … OVER AND OVER.

FORTUNATELY, THEY UNDERSTAND THAT

I REALLY DO CARE,

I REALLY AM INTERESTED,

EVEN IF I CAN’T ALWAYS REMEMBER.

19 19 of 36
20 20

IT’S HARD TO THINK ABOUT

THE KIDS GETTING OLDER

AND WONDERING,

“HOW LONG AM I GOING TO BE AROUND,

AND REMEMBER THEM?

“WILL I BE THERE FOR THEIR GRADUATION

OR WEDDING DAY?”

IT’S NOT UNUSUAL FOR CHILDREN

TO HELP OUT WITH THEIR PARENT WITH

ALZHEIMER’S.

IT IS UNUSUAL FOR THOSE CHILDREN

T O B E T W E L V E A N D F I F T E E N Y E A R S O L D.

20 20 of 36
21 21

HAVING A TERMINAL ILLNESS

WITH SUCH A LONG

AND UNCERTAIN COURSE

HAS REALLY CHANGED MY PERSPECTIVE ON

LIFE.

I’M TRYING REALLY HARD

TO MAKE THE BEST OF MY SITUATION

AND TO HELP OTHER PEOPLE

SEE HOW IMPORTANT IT IS

TO REALLY ENJOY LIFE.

I REALLY CARE MUCH MORE ABOUT

SPENDING TIME WITH MY CHILDREN,

AND WITH JASON,

AND I LOVE BEING WITH MY DAD,

21 21 of 36
22 22

AND I’VE BEEN TRYING TO CATCH UP

WITH ALL OF MY OLD FRIENDS,

WHICH REALLY HAS BEEN A BLESSING.

JASON POINTS OUT THAT WE HAVE MANY THINGS

FOR WHICH TO BE GRATEFUL.

I BEGAN KEEPING DIARIES

WHEN I WAS A CHILD.

I HAD NO WAY OF KNOWING WHAT A SPECIAL

BLESSING THEY WOULD BE TO ME

A N D M Y C H I L D R E N S O M E D A Y.

I’M NOT IN PAIN,

I WASN'T TAKEN AWAY SUDDENLY,

I’M STILL HERE.

22 22 of 36
23 23

W E K N O W T H E H A R D E S T D A Y S A R E S T I L L A H E A D.

BUT THIS EXPERIENCE IS

ALREADY MAKING US CLOSER

AS A FAMILY,

AND STRONGER IN OUR FAITH.

MY FAMILY AND I ARE DOING OUR BEST

TO FOCUS ON THE MANY

UNDESERVED BLESSINGS WE ENJOY,

AND ON THOSE THINGS THAT

BRING US HAPPINESS.

WE’RE TRYING OUR BEST

T O N O T S W E A T T H E S M A L L S T U F F,

S P E N D M O R E T I M E T O G E T H E R,

23 23 of 36
24 24

T A K E M O R E W A L K S T O G E T H E R,

L A U G H M O R E T O G E T H E R,

L O O K A T O L D F A M I L Y P H O T O S T O G E T H E R,

S H A R E O L D M E M O R I E S A N D S T O R I E S,

AND TO CREATE NEW MEMORIES

THAT JASON, BENJAMIN, AND GRACE WILL

C H E R I S H W H E N T H E Y G R O W O L D.

W E ’ R E A F A M I L Y O F F A I T H.

THAT DOESN’T ALWAYS MAKE IT EASY.

BUT AS CHRISTIANS, WE KNOW THAT

EVEN AFTER MY DISEASE HAS RUN ITS COURSE,

WE WILL BE TOGETHER AGAIN SOMEDAY.

24 24 of 36
25 25

WITH GOD’S HELP,

AND THE PATIENCE,

UNDERSTANDING

AND SUPPORT OF OUR FAMILY AND FRIENDS,

WE WILL MAKE THE MOST

O F T H E T I M E W E H A V E T O G E T H E R.

25 25 of 36
26 26

WHEN I FIRST STARTED TELLING FRIENDS THAT

I H A D A L Z H E I M E R ’ S,

T H E Y C O U L D H A R D L Y B E L I E V E I T.

LIKE ME,

THEY WERE SHOCKED THE FIRST TIME THEY

H E A R D T H E N E W S.

THEY CAN’T BELIEVE SOMEONE MY AGE,

CAN HAVE ALZHEIMER’S.

MY FRIENDS HAVE BEEN A GREAT SOURCE OF

E N C O U R A G E M E N T A N D S U P P O R T.

26 26 of 36
27 27

MANY OF THEM COME GET ME

AND TAKE ME OUT TO GET SOMETHING TO EAT,

GO SHOPPING,

GO FOR WALKS,

OR GO TO BIBLE STUDY.

SOMETIMES WE JUST SIT AND VISIT.

THIS MEANS MORE TO ME

THAN THEY WILL EVER KNOW.

JASON HAS HELPED ME TRACK DOWN

AND GET BACK IN TOUCH WITH OLD FRIENDS.

I’VE REALLY ENJOYED CATCHING UP

A N D R E M I N I S C I N G.

27 27 of 36
28 28

IN THE FUTURE, MY FRIENDS

WILL BE AN IMPORTANT CONNECTION TO ME

FOR MY CHILDREN.

AND, AS THE DISEASE PROGRESSES,

I HOPE MY FRIENDS WILL BE THERE

FOR JASON, BENJAMIN AND GRACE

L I K E T H E Y ’ V E B E E N T H E R E F O R M E.

28 28 of 36
29 29

THIS IS A VERY PERSONAL AND

EMOTIONAL MATTER FOR ME AND MY FAMILY.

BUT I DON’T FEEL STRANGE

SHARING MY STORY WITH YOU.

I’VE PRETTY MUCH TOLD EVERYBODY AT THIS

POINT.

AT FIRST, I COULDN’T TALK ABOUT IT

WITHOUT CRYING.

I NEEDED TIME TO BELIEVE IT,

AND TO UNDERSTAND IT

BEFORE I COULD TALK TO OTHER PEOPLE ABOUT

IT.

29 29 of 36
30 30

BUT, FOR ME, THERE’S NO DOWNSIDE

IN TELLING PEOPLE.

I’M NOT WALKING UP

AND TELLING STRANGERS AT THE SUPERMARKET.

BUT I HAVE BEEN TELLING PEOPLE

WHO KNOW ME

AND ARE GOING TO BE AROUND ME.

AS A BUSY EXTROVERT,

A MOTHER OF TWO

YOUNG, ACTIVE KIDS IN SCHOOL,

AND JASON’S MORE PUBLIC CAREER,

I KNEW EVERYBODY WAS GOING TO

FIND OUT EVENTUALLY.

30 30 of 36
31 31

SO I WANTED TO TELL THEM

WHAT WAS GOING ON

FROM MY PERSPECTIVE.

A N D S T I L L , … O C C A S I O N A L L Y,

I’LL HAVE SOME MEMORY OF SOMETHING

I USED TO BE ABLE TO DO,

THAT I CAN’T DO NOW,

OR SOMETIMES WHEN I’M TELLING SOMEONE

ABOUT MY DIAGNOSIS,

I’LL BEGIN TO CRY.

BUT MOST OF THE TIME,

I FEEL PRETTY GOOD.

31 31 of 36
32 32

I KNOW THE DAY IS COMING

WHEN I’LL BE UNABLE TO TELL MY STORY —

S O I ’ M T E L L I N G I T N O W,

T O Y O U.

I’M SHARING MY STORY

TO RAISE AWARENESS OF ALZHEIMER’S,

P A R T I C U L A R L Y I N Y O U N G E R P E O P L E,

WHO HAVE MINOR CHILDREN AT HOME,

AND WHO ARE STILL YEARS AWAY FROM

RETIREMENT.

I’M SHARING MY STORY

TO ASK FOR YOUR PRAYERS,

UNDERSTANDING,

AND SUPPORT

32 32 of 36
33 33

FOR ME AND MY FAMILY,

AND FAMILIES LIKE OURS.

I’M SHARING MY STORY

BECAUSE THERE IS A DESPERATE NEED

FOR MORE RESEARCH

IN TO THE CAUSES,

POSSIBLE TREATMENTS

A N D P O T E N T I A L C U R E S O F A L Z H E I M E R ’ S.

I’M SHARING MY STORY

TO LET OTHER PATIENTS KNOW

IT’S OKAY TO TALK ABOUT IT.

IT’S NOT SOMETHING TO BE ASHAMED OF

O R E M B A R R A S S E D A B O U T.

33 33 of 36
34 34

ON A PERSONAL NOTE,

I CAN’T SAY IT ENOUGH

T O J A S O N , B E N J A M I N A N D G R A C E,

T O M Y P A R E N T S,

TO MY FAMILY

A N D J A S O N ’ S F A M I L Y,

AND TO MY FRIENDS —

I L O V E Y O U,

A N D T H A T W I L L N E V E R F A D E O R C H A N G E.

TO BENJAMIN AND GRACE,

I’M SO SORRY YOU HAVE TO GO THROUGH THIS

EXPERIENCE.

I ’ M S O P R O U D T O B E Y O U R M O T H E R.

34 34 of 36
35 35

BOTH OF YOU ARE SO SMART, STRONG,

A N D C O M P A S S I O N A T E.

I WANT YOU BOTH TO SERVE GOD

YOUR WHOLE LIVES,

DO THINGS THAT MAKE THE WORLD A BETTER

PLACE,

MAKE THE MOST WITH WHAT YOU HAVE,

AND REMEMBER TO ENJOY LIFE.

ALWAYS REMEMBER THAT I LOVE YOU BOTH VERY

MUCH —

M O R E T H A N Y O U C A N K N O W.

YOU ARE SPECIAL KIDS.

35 35 of 36
36 36

AND TO EVERYONE HERE,

THANK YOU FOR LISTENING TO MY STORY.

LET’S WORK TOGETHER,

TO MAKE ALZHEIMER’S A DISEASE

THAT MY CHILDREN AND YOURS

WILL NOT HAVE TO FEAR,

BECAUSE ITS TERRIBLE EFFECTS

W I L L E X I S T O N L Y A S A M E M O R Y.

❦❦❦

36 36 of 36