- I WAS IN THE MARINES, U.S. MARINE CORPS,
IN 1968 TO 1970.
- WAYNE STARTED HAVING PROBLEMS WITH HIS EXECUTIVE FUNCTION,
AND HE WASN'T ABLE TO PERFORM HIS JOB.
IT JUST TOOK US A LONG TIME TO FIGURE OUT WHAT WAS GOING ON.
SO WE WENT TO A PSYCHIATRIST, AND HE FELT SOMETHING WAS WRONG,
BUT HE DIDN'T THINK IT WAS ALZHEIMER'S.
HE THOUGHT IT WAS SOMETHING UNIQUE.
SO HE SENT US TO ANOTHER NEUROLOGIST,
AND THAT NEUROLOGIST WAS VERY QUICK TO DIAGNOSE ALZHEIMER'S.
WE DID THREE MORE NEUROLOGISTS, AND THEY CONCURRED
THAT IT WAS ALZHEIMER'S, AND IT WASN'T UNTIL WAYNE
WENT TO DO A SLEEP STUDY THAT AN INTERN SAID,
"I THINK YOU HAVE PSP."
- GOOD. SPREAD OUT YOUR FINGERS. RELAX THEM.
VERY GOOD, JUST LIKE THAT.
I FIRST MET MR. JOHNSON IN AUGUST OF 2012.
AND NOW UNDERNEATH YOUR CHIN LIKE THIS WITHOUT TOUCHING.
HE REPORTED SEVERAL ISSUES.
ONE WAS RELATED TO PROGRESSIVE LOSS OF BALANCE AND FALLING,
AND THE OTHER WAS A PROGRESSIVE PERSONALITY CHANGE
ALONG WITH SOME WORD FINDING DIFFICULTY
AND OTHER THINKING CHANGES.
NOW WITHOUT MOVING YOUR HEAD, JUST FOLLOW MY FINGER, PLEASE.
- WHEN HE EXAMINED, WAYNE, HE HAD OTHER DOCTORS COME IN,
ALSO, TO SEE WHAT WAS HAPPENING...
- NOW ALL THE WAY UP AND FOLLOW IT DOWN AS MUCH AS YOU CAN.
VERY GOOD.
- AND THEY ALL CONCURRED THAT HE HAD PSP.
- WE SHOULD START BY BRIEFLY CHARACTERIZING
THE CARDINAL FEATURES OF PARKINSON'S DISEASE,
ALSO REFERRED TO COLLECTIVELY AS PARKINSONISM .
THESE CLINICAL FEATURES INCLUDE A TREMOR AT REST;
SLOWNESS OF MOVEMENT, CALLED BRADYKINESIA IN DOCTORSPEAK;
AS WELL AS A POSTURAL INSTABILITY,
LOSS OF BALANCE; AND FINALLY RIGIDITY,
WHICH MEANS A STIFFNESS, RESISTANCE TO PASSIVE MOVEMENT.
- ATYPICAL PATIENTS DIFFER
FROM TRADITIONAL PARKINSON'S DISEASE PATIENTS
IN SEVERAL WAYS.
THEY MAY HAVE EARLY MOBILITY ISSUES,
SPECIFICALLY EARLY FALLS.
THEY CAN HAVE MORE COGNITIVE CHANGES THAT ARE EARLY.
THEY CAN HAVE AUTONOMIC DYSFUNCTION
THAT RESULTS IN SYMPTOMS LIKE DIZZINESS
OR MORE FREQUENCY IN URINATION,
AND THEY CAN HAVE VISUAL CHANGES.
- HE HAD A GRADUAL DECLINE IN HIS EXECUTIVE FUNCTION,
AND IT TOOK SEVERAL MORE YEARS
BEFORE ALL THE OTHER SYMPTOMS CAME THROUGH.
- MY MEMORY IS VANISHING SLOWLY,
AND WHAT I'M SAYING IS,
MY PARKINSON'S AS A WAY OF--
I CAN'T REMEMBER.
- I'VE COME TO REALIZE HIS DEPTH PERCEPTION IS OFF
BECAUSE HE WOULD REACH FOR SOMETHING THAT WAS--
HE KEPT REACHING, AND THEN HE'D BE TOP-HEAVY,
AND IT JUST WOULD PULL HIM OVER.
HE DIDN'T REALIZE HOW FAR AWAY HE WAS,
AND HIS BRAIN DOESN'T THINK TO MOVE HIS FEET.
- I PLOP A LOT, AND MY FEET--
WHEN I DON'T FOCUS,
I LOSE TRACK OF WHERE I'M GOING.
- THE WORST FALL WAS 2:00 IN THE MORNING.
I HEARD A LOUD CRASH,
AND HE WAS IN THE MIDDLE OF THE GLASS COFFEE TABLE
WITH SHARDS OF GLASS STICKING UP ALL AROUND HIM.
THAT WAS REALLY SCARY, THAT ONE.
- IN GENERAL, THE MEDICATIONS THAT WE USE
FOR PARKINSON'S DISEASE DO NOT TEND TO HAVE THE SAME BENEFIT
IN THE ATYPICAL PARKINSONIAN DISORDERS.
IN FACT, ONE OF THE WAYS WE DEFINE
TYPICAL PARKINSON'S DISEASE IS BY ITS ROBUST
AND CLEAR RESPONSE TO MEDICATION LIKE CARBIDOPA-LEVODOPA.
THIS IS NOT SOMETHING THAT WE USUALLY OBSERVE
IN THE ATYPICAL PARKINSONIAN DISORDERS.
- SO AS FAR AS TREATING THE MOTOR SYMPTOMS,
THE PARKINSONISM--AGAIN, THE SLOWEST, THE STIFFNESS,
THE TREMOR--THERE ARE NO SEPARATE MEDICATIONS
THAT WE CAN OFFER BEYOND WHAT WE HAVE AVAILABLE
FOR PARKINSON'S DISEASE PATIENTS.
THERE CERTAINLY ARE MEDICATIONS
THAT CAN HELP SOME OF THEIR SYMPTOMS.
- SO YOU WANT TO ADDRESS THEIR QUALITY OF LIFE.
YOU WANT TO MAKE SURE THAT THEY HAVE SOMETHING IN PLACE
FOR THEIR BALANCE DIFFICULTIES.
YOU WANT TO MAKE SURE THAT YOU'RE MONITORING CLOSELY
FOR MOOD CHANGES, FOR COGNITIVE CHANGES,
AND YOU WANT TO MAKE SURE THAT YOU'RE ADDRESSING
ANY BEHAVIORAL CHANGES THAT THEY MAY HAVE.
- AND YOU'RE STILL GETTING OUT, SOCIALIZING,
AND INTERACTING WITH OTHER PEOPLE?
- THE SOCIAL WORKER GOT US PHYSICAL THERAPY,
SPEECH THERAPY, AND OCCUPATIONAL THERAPY,
AND THEY ALL CAME TO THE HOUSE LAST YEAR.
SO HE WAS A VERY BUSY BOY...
- BECAUSE THAT'S SOMETHING WE CAN GET THROUGH THE VA, AS WELL.
- BUT IT WAS GREAT BECAUSE IT WAS LIKE
A SOCIALIZATION PERIOD FOR HIM.
SO HE ENJOYED DOING IT BECAUSE THE PEOPLE ARE VERY NICE.
- I WOULD SAY THAT IT'S ABSOLUTELY CRUCIAL
FOR PATIENTS WITH ATYPICAL PARKINSON'S
TO EXERCISE AND MOVE AS MUCH AS POSSIBLE.
EXERCISE IS VERY IMPORTANT,
AND IN THE CASE OF MY PATIENT MR. JOHNSON,
IT'S CERTAINLY SOMETHING THAT HAS BENEFITED HIM.
- WE BELONG TO A GYM,
AND WE GO TO THE GYM AT LEAST TWICE A WEEK.
ALSO, WE WALK THE DOGS BECAUSE WE'RE TRYING TO KEEP
HIS STRENGTH UP SO HE'LL BE ABLE TO WALK AS LONG AS HE CAN.
- WELL, WHEN I EXERCISE, I FEEL MUCH BETTER.
I FEEL LIKE THAT'S WHAT I SHOULD BE DOING.
WHEN I DON'T EXERCISE, I WOULD IMAGINE, I'D LOCKED UP.
- WE HAVE IN AN INCREASING AMOUNT OF DATA
IN TYPICAL PARKINSON'S DISEASE THAT EXERCISE
NOT ONLY CAN HELP WITH BALANCE LOSS
AND A NUMBER OF OTHER SYMPTOMS, INCLUDING MOOD,
BUT IT CAN ACTUALLY POTENTIALLY SLOW DOWN
PROGRESSION OF DISEASE.
THE ATYPICAL PARKINSONIAN DISORDERS PROGRESS
MORE QUICKLY THAN PARKINSON'S DISEASE,
AND WHILE WE GENERALLY TELL PATIENTS
THAT YOU WILL DIE WITH PARKINSON'S DISEASE,
AS OPPOSED OF PARKINSON'S DISEASE,
THAT'S NOT SOMETHING WE CAN SAY
FOR THE ATYPICAL PARKINSONIAN DISORDERS
THAT DO TEND TO SHORTENS ONE'S LIFESPAN.
- WHAT I KNOW IS,
IT'S NOT GOOD.
- IN THE CARE FOR ATYPICAL PARKINSON'S DISEASE,
NO MATTER WHAT THE DIAGNOSIS IS, IT IS IMPORTANT FOR THE PATIENT
AND THE CAREGIVER TO MAINTAIN HOPE
AND TO BE IN CONTACT WITH THEIR HEALTH CARE PROVIDER TEAMS
SO THAT WE CAN ADDRESS THE SYMPTOMS AS NEEDED
AND MAINTAIN THE BEST QUALITY OF LIFE THAT WE CAN GIVE THEM.
- I TRY NOT TO LOOK DOWN THE ROAD AT WHAT'S GOING TO HAPPEN,
TRY TO JUST DO ALL WE CAN RIGHT NOW TO LEAD A FULL LIFE
AND TRYING HARD TO KEEP HIS SOCIALIZATION UP
SO HE'S NOT JUST SITTING HOME WATCHING TV.
ONE DAY AT A TIME.
- I'M FORTUNATE SHE'S BEEN TAKING CARE OF ME.