WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Pay it Forward
KEEP YOUR SPIRITS HIGH AND DO AS MUCH RESEARCH AS POSSIBLE. AND LIKE I TELL EVERYONE I TALK TO "PAY IT FORWARD"
– D.J. LEE
My name is DJ. I am 38, and live in Louisville, Kentucky. I have been married for 11 years to my wonderful, beautiful, and very understanding wife. We have 3 children- two boys and a girl. My family is my pride and joy, and why I keep going! I used to be a Sales Manager for an electronics retailer, but after 10 years, my Parkinson's has become severe enough that my wife and I switched roles. I am now a stay at home dad while my wife works in the Interior Design business. I have had pretty noticeable Parkinson's for 8-10 years but I never did anything about it until the birth of our first child in 2001. I didn't want my children growing up and getting teased because their daddy shakes. And so my journey began! Over the past 7 years I must have seen at least 10 different doctors and have been prescribed pretty much every drug known to man. I was originally diagnosed with Essential Tremors but in the back of my mind I knew I had Parkinson's because it never really went away and it kept getting worse. The bad thing about Tremors, other than the body movement, is that no one knew what was causing them. Finally, I was referred to the U of L Movement Disorder Center and it has changed my life. They had a team of 4 specialists see me and then they came back and told me I had Parkinson's. Honestly, I was happy to finally have a "name" to put with the "thing" that was causing my pain and tremors - and I knew that since Michael J. Fox came forward about his PD, there has been a lot of research being done about it - and so I have hope that a cure will be found. Living life with Parkinson's is quite a challenge, I have had to teach myself how to do everything differently and accept the fact that I just can't do some things any more. I am naturally right handed, but have taught myself how to eat and type left-handed and also drive with my left foot. When out in public I am very self conscience of what my body is doing and what other people are thinking. I usually try to lighten up the mood by joking around about it, if I don't have fun with it there’s nothing left to do but be depressed about it. ABOUT 6 MONTHS AGO I NOTICED A SLIGHT TREMOR IN MY MOTHERS RIGHT HAND AND I STARTED TO ASK HER ABOUT IT. WE SHE BECAME SORTA DEFENSIVE AND DIDN'T WANT TO TALK ABOUT IT. I'M ASSUMING BECAUSE SHE HAS SEEN WHAT I HAVE BEEN THROGH IN THE PAST 10+ YEARS OF MY PD. SHE PROMISED TO GO TO A DR. AND I DEMANDED A MOVEMENT CENTER, SHE WON. SO HER FAMILY DR. PUT HER ON A DRUG CALLED BUSBAR I THINK, AND THE TREMORS BECAME MUCH WORSE. I THEN HAD A SIT DOWN WITH HER AND EXPLAINED TO HER SHE PROBABLY HAD PD AND NEEDED TO GO TO MY MOVEMENT CENTER. SHE RELUCTANTLY AGREED. I ASKED IF I COULD GO IN WITH HER AND SHE REFUSED, SHES A STUBORN CUSS. SO WE SET UP APOINTMENT AND SURE ENOUGH SHE HAS PD. SINCE I CAUGHT IT SO EARLY THEY PUT HER ON A VERY LOW DOSE OF MIRAPEX .125 2 TIMES A DAY. AND HER TREMORS ARE GONE. I AM VERY GRATEFULL THAT SHE WENT TO MY MOVEMENT CENTER - U OF L/FRAISER REHAB LITVAN INSTATUTE WHICH IS A CENTER OF EXCELLENCE. SINCE I HAVE HAD IT FOR 10+ YEARS AND IM 38 AND SHES 64 AND JUST STARTED TO SHOW SIGNS THEY HAVE DECIDED TO DO A CASE STUDY ON US AND COMPARE CAT SCANS AND MRI'S OF OUR BRAINS [MINE IS BIGGER LOL ]. AND THEY ALSO ARE GOING TO START US ON A TEST TRIAL OF THE NEW MIROPEX THE 2 TIMES A DAY MIROPEX. SO THERE IS SOM GOOD WITH THE BAD, I'M JUST GLAD I CAUGHT IT SO QUICK. ALSO ON THE POSITIVE SIDE I HAVE BEGAN THE LONG PROCESS OF TESTING FOR MY DBS SURGERY. IVE HAD PRETTY MUCH EVERY TEST DONE I JUST NEED TO HAVE A MEETING WITH THE SURGEON AND THAT SHOULD BE HERE SOON. WISH ME LUCK.
