- WHEN I WAS YOUNGER, I WAS GREAT AT PRINTING, LIKE
AN ARCHITECT.
OVER TIME, IT WAS BECOMING HARDER AND HARDER.
THEN IT GOT TO THE COMPUTER, THE COMPUTER MOUSE,
AND TYPING.
I USED TO TYPE ABOUT 180 WORDS A MINUTE, AND IT JUST GOT
WORSE AND WORSE.
AND I WAS ALWAYS VERY ORGANIZED, AND I WAS VERY
THOROUGH AND DETAILED, AND IT CHANGED.
WHO I WAS AS A PERSON WAS CHANGING.
I KNEW THAT THERE WAS SOMETHING WRONG.
- PARKINSON'S DISEASE IS A CLINICAL DIAGNOSIS, SO THERE'S
REALLY NO ABSOLUTE TEST THAT ABSOLUTELY DEFINES IT.
IT'S NOT LIKE DIABETES, WHERE WE HAVE A BLOOD TEST,
OR LIKE A STROKE, WHERE WE CAN JUST TAKE A PICTURE
OF THE BRAIN.
IT'S REALLY A CLINICAL DIAGNOSIS, WHICH MEANS THAT WE
LISTEN TO THE SIGNS AND SYMPTOMS THAT ARE DESCRIBED BY
THE PATIENT.
WE ALSO DO A PHYSICAL EXAM.
THE CLASSIC SYMPTOMS THAT WE TEACH OUR MEDICAL STUDENTS
ABOUT, THEY ACTUALLY SPELL THE WORD "TRAP."
T-R-A-P.
"T" STANDS FOR TREMOR, SO THE TREMOR IS USUALLY ON ONE SIDE,
A TREMOR IN ONE HAND OR ONE LEG, AND IT'S USUALLY AT REST.
"R" STANDS FOR RIGIDITY, WHICH MEANS THAT PATIENTS HAVE
INCREASED TONE THAT WE CAN MEASURE ON THE EXAM.
"A" STANDS FOR AKINESIA, OR LACK OF MOVEMENT,
AND PATIENTS WILL COMPLAIN OF SLOWNESS, THAT
THEY'VE SLOWED DOWN.
AND THEN "P" STANDS FOR POSTURAL INSTABILITY, AND THAT
CAN BE A LATER FINDING, USUALLY, IN CLASSIC
PARKINSON'S DISEASE, WHERE PATIENTS WILL HAVE FALLS,
THEY'LL HAVE BALANCE ISSUES, AND THEY'LL START TO SORT
OF LOSE THEIR BALANCE WHILE THEY'RE WALKING.
- AT FIRST, IT HAPPENS ONCE IN A WHILE.
WITH THE HAND MOTION AND THE SHAKING, THAT BECAME
A STANDARD.
BUT THE WRITING, THE ORGANIZATION,
AND THE LITTLE CONFUSION AND GETTING FUZZY
ABOUT THINGS, IT WAS INTERMITTENT.
I FIGURED EVERYBODY HAS THAT.
- WE'RE REALLY TRYING TO START OFF ON THE RIGHT FOOT.
SO IT'S REALLY IMPORTANT TO EMPHASIZE THINGS LIKE SLEEP,
SO GETTING A GOOD NIGHTS SLEEP EVERY NIGHT.
WE TRY TO EMPHASIZE ABOUT 8 HOURS AT THE VERY LEAST
IF POSSIBLE AND NOT NAPPING IN THE DAY.
ADDITIONALLY, WE THINK THAT EXERCISE IS VERY KEY.
WE'RE NOT TALKING ABOUT AN OVERNIGHT CHANGE FROM BEING
SEDENTARY TO RUNNING A MARATHON, BUT SETTING GOALS
AND TRYING TO KEEP WITHIN THOSE GOALS IS VERY IMPORTANT.
AND THEN EATING WELL, KEEPING OTHERWISE HEALTHY.
WE REALLY EMPHASIZE THE FACT THAT PATIENTS LIVE NEAR-NORMAL
LIFE SPANS WITH THIS DISEASE SO WE WANT TO KEEP ALL THE
OTHER BODY SYSTEMS WORKING, KEEP OUR STROKE RISK DOWN,
CARDIAC RISK FACTORS DOWN, SO EATING RIGHT
AND BEING HEALTHY.
IT'S ABSOLUTELY IMPORTANT TO GET EDUCATED.
THAT'S OUR GOAL, IS TO GET PATIENTS READING
ABOUT THE DISEASE, GETTING LINKED UP WITH SOME OF THESE
ORGANIZATIONS THAT HAVE A LOT OF GOOD MATERIAL TO READ.
- NOW I'M DOING ALL THE RESEARCH THAT I CAN, GOING TO
A SUPPORT GROUP.
I WANT TO TALK TO SOME HUMAN BEINGS THAT KNOW AND ARE
LIVING IT.
- I THINK THAT HAVING A GOOD RELATIONSHIP WITH YOUR
PHYSICIAN IS VERY IMPORTANT AS WELL, AND BEING ABLE TO OPEN
UP AND BE HONEST--I FIND SOME PATIENTS REALLY MINIMIZE THEIR
SYMPTOMS AND TRY TO TELL THEIR DOCTOR THAT THEY'RE ABLE TO DO
EVERYTHING AND THAT THEY'RE REALLY FINE WHEN THEY
REALLY AREN'T.
- GET A DOCTOR THAT YOU REALLY TRUST, AND TALK TO THEM.
TALK TO THEM ABOUT YOUR ANXIETIES.
GET THE PEOPLE AROUND YOU THAT YOU LOVE TO WORK WITH YOU
SO THAT NONE OF YOU WILL PANIC.
INFORM YOUR FAMILY.
LET THEM KNOW THAT IT CAN BE A TO Z AND IT DOESN'T HAVE TO BE
SO BAD WITH A LITTLE SUPPORT FROM YOUR FAMILY, YOU KNOW?
SO THEY'LL DO SOME OF THE CUTTING IN THE KITCHEN,
AND YOU'LL SAVE YOUR FINGERS.
- WE WOULD ENCOURAGE VETS WHO ARE NEWLY DIAGNOSED
WITH PARKINSON'S TO SEEK OUT THE SUB SPECIALTY CARE THAT IS
AVAILABLE AT THE VA BECAUSE IT IS A REALLY NICE GROUP
OF DOCTORS ACROSS THE COUNTRY, AND WE'RE CONSTANTLY INVOLVED
IN RESEARCH AND EDUCATION AND REALLY FEEL THAT OUR EXPERTISE
SHOULD BE SHARED THROUGHOUT THE VA POPULATION.
WE'RE HAPPY TO SHARE THAT WITH OUR VETS.
- ONE THING I'VE LEARNED THROUGH MY PAST RELATIONSHIPS
IS THAT I ALWAYS TRY TO TAKE CARE OF MY MATE.
WHAT I'VE LEARNED NOW THAT I HAVE PARKINSON'S IS THAT I
HAVE TO MAKE MYSELF THE PRIORITY.
IF I DON'T TAKE CARE OF MYSELF, I CAN'T REALLY TAKE
CARE OF SOMEONE ELSE.
- TO MANY PATIENTS, IT IS A DISEASE THAT COMES
WITH A STIGMA, AND IT CAN BE QUITE
A LIFE-CHANGING DIAGNOSIS.
SO THE MAIN THING THAT WE WANT TO CONVEY TO OUR PATIENTS IS
THAT IT'S A VERY TREATABLE DIAGNOSIS.
IT'S REALLY ABOUT INSTILLING A POSITIVE ATTITUDE FROM
THE GET-GO, AND THESE LIFESTYLE CHANGES ARE KEY.
PROBABLY BETTER THAN ANY MEDICINE OUT THERE IS A SET
GOOD EXERCISE REGIMEN AND GOOD SLEEP, GOOD DIET, AND KEEPING
A VERY POSITIVE ATTITUDE.
SO, ESPECIALLY AT THESE EARLY STAGES, WE REALLY EMPHASIZE
POSITIVE ATTITUDE, EDUCATION, AND EXERCISE ARE SUPER KEY.
- I'M GONNA LIVE EVERY DAY TO THE FULLEST.
I DON'T KNOW WHEN IT'S GONNA END.
I'M GONNA ENJOY MY LIFE. I'M GONNA GO CAMPING.
I'M GONNA TRAVEL.
I'M GONNA DO WHATEVER MAKES ME HAPPY.
I'M JUST GONNA MAKE THE BEST OUT OF EVERY DAY.
THAT'S THE MOST IMPORTANT THING TO ME.