CHAMPs > Parkinson's CHAMP

March 2012 - Team Kathy

It was November 14th 1986 when my mother, Kathy, was diagnosed with early-onset Parkinson’s disease.  She was 39 years old; I was 5. Parkinson’s disease has been a part of our lives in one way or another ever since. After hearing about the Parkinson’s Unity Walk back in 1999, so has the walking, fundraising and fighting for a cure that goes with it.

When I was young, Mom would move funny sometimes, have trouble getting out of bed and struggle with writing first thing in the morning. The way they explained it to me as a kid was “Mommy has a damaged nerve in her neck.”  I didn’t know what that meant or the funny name it was called but I knew something wasn’t right with her. Over the years I slowly learned more about the disease and saw the gradual changes, extra medications and additional help she needed. Despite all that, it wasn’t really a big deal to me until the summer of 1999 when my Mom and Dad sat my brother and I down and said “Mom’s having brain surgery.” I don’t think I mustered much more than “Oh” as a response. We went to meetings to learn about the Deep Brain Stimulation (DBS) procedure and its effects, and to meet people who knew more about it. It was all very overwhelming. In December, 1999, on the day of my chemistry final at Stony Brook University, Mom went in for surgery. I was able to schedule a make up exam, hop on the train and head to Manhattan to be by her side when she came out of surgery. She looked so fragile but there was a lot of hope in the room.

She recovered well and went through ups and downs with the medications and settings on the stimulators. She eventually leveled off and was able to function pretty well again. Since then Mom has had multiple surgeries to replace the stimulators in her brain, wires in her neck and batteries in her chest. With each change, her medications needed to be modified. DBS and the medications help tremendously but unfortunately Parkinson’s is a progressive disease. So, the disease has continued on its course despite our best efforts.

Back in 1999 when Mom learned about and finally had her surgery, we met several people who were passionately involved in a fundraising event - the Parkinson’s Unity Walk. We were very interested and decided to attend. We raised a little money and joined the Walk in September, 2000 in Central Park. In some form or another, our family has fundraised and attended every Walk since. Our core group has remained the same over the years - my Mom, Kathy (our team’s namesake); my Dad, Robert; my brother, Brian; and me.  For several years now, our cousin and his wife have joined us as well as some family friends (including the mother of a good friend of mine who was just recently diagnosed herself). My immediate family has pushed harder and harder each year to
raise as much money as we possibly can, asking the same people year in and year out for donations. Some give more than the previous year and others give less, if they can’t afford to match what they gave before but almost no one turns us down. I always say “Every dollar counts.”

There have been years that all I received were $1 donations from my friends but in the end it all adds up. This past year was our best yet, raising a total of $8,905!  Every year we make it a challenge to beat the last. Over the years (our records only go back to 2002) we’ve raised a total of $36,526!!

The Parkinson’s Unity Walk gives us many things in return. It gives us a way of connecting to other people living with Parkinson’s; hope that someday there will be a cure; an opportunity to teach people about the disease and/or update them on how Mom is doing; and a day to rally together and fight for something and someone we care very deeply about. Even if one of us can’t make it that year, we do everything we can to acknowledge it. Mom has attended almost every year, even if she ends up resting on a bench while we make our way through Central Park. We always hope for good weather but regardless of what it is like out, we make sure Team Kathy is there.

Several years ago I wanted to do something special to show our camaraderie as a family and as a team. Since I work as a graphic artist I decided to create a logo and t-shirts for us to wear. On the front they say “Team Kathy” with a tulip, and on the back the shirts say “Team Kathy; Over 20 years with Parkinson’s and still WALKING!”  This year I plan to make new t-shirts. They will have the same basic layout, but they will now say “Over 25 years with Parkinson’s and still WALKING!”  If you know someone with Parkinson’s, you will never feel as welcome and understood as you do at the Parkinson’s Unity Walk. Come join and say hi to us if you do. We’re a small team with a giant sign and lots of hope.

Thank you,
Emily Levine
Captain of TEAM KATHY!