DEAR LEANNE,
HI! I AM NOT NEW TO THE LIST, BECAUSE I HAVE BEEN A BROWSER FOR
SEVERAL MONTHS, BUT I WAS PROMPTED TO WRITE TO YOU BECAUSE OF YOUR
REQUEST TO TALK TO OTHER CAREGIVERS. I ACTUALLY HAVE BEEN CONTEM-
PLATING TRYING TO SET UP A CAREGIVERS GROUP ON THIS EXCHANGE, SO I
THANK YOU FOR TAKING THE INITIATIVE.
MY HUSBAND IS A VERY YOUNG 60 AND HAS HAD PD FOR ABOUT 15 YEARS.
THE DISEASE IS QUITE ADVANCED IN SOME WAYS, BUT HE DOES NOT HAVE A
LOT OF THE VERY BAD SIDE EFFECTS THAT OTHERS GET, EXCEPT HE
DOES EXPERIENCE A LOT OF DYSKINESIAS AND OFTEN USES A WHEEL CHAIR.
HOWEVER, WE ARE ON THE GO A LOT AND TRY NOT TO LET PD CONTROL OUR
LIVES. WE STILL TAKE MANY TRIPS, ATTEND CONCERTS, GO OUT TO EAT,
AND HAVE MANY FRIENDS WHO WE SEE REGULARLY. WE TAKE THE WHEELCHAIR
WITH US MOST OF THE TIME, EVEN TO ORIOLES GAMES, AND IF IT'S NEEDED
WE HAVE IT AVAILABLE.
WE LIVE OUR LIVES AS NORMAL PEOPLE WHO MUST DEAL WITH A DIFFICULT
DISEASE, NOT AS VICTIMS OF THE DISEASE, NOT AS 'PARKIES', OR AS
'PARKINSONIANS'. THE BIGGEST DIFFERENCE IS IN ATTITUDE, AND MY HUSBAND
IS WILLING TO DO WHAT EVER WE CAN TO MAINTAIN A NORMAL LIFE. THAT'S
WHAT KEEPS ME GOING AND ALLOWS US TO STILL FEEL THAT WE ARE VERY
FORTUNATE PEOPLE NOT TO BE DEALING WITH SOME OF THE OTHER DEVASTATING
ILLNESSES WE HEAR ABOUT.
I WOULD BE VERY HAPPY TO TALK TO ANY CAREGIVERS BECAUSE I KNOW
HOW HARD IT IS TO SEE SOMEONE YOU LOVE VERY MUCH DETERIORATE FROM
THIS TERRIBLE DISEASE. I THINK THAT TIME HAS TAUGHT US SOME POSITIVE
WAYS TO DEAL WITH IT AND I WOULD LIKE TO HEAR HOW OTHER CAREGIVERS
MANAGE TO MAINTAIN AS NORMAL A LIFE AS POSSIBLE.
I CAN BE REACHED THROUGH THIS EXCHANGE OR BY E-MAIL AT MY
WORK. ([log in to unmask]).
SUE HAMBURGER
CHEVY CHASE, MD.
