By Trina Stokes
Ann Marie (Annie) Konopka of New Jersey and Judy Hensley of Tennessee, Team Captains of USA PD PALS, didn’t take their diagnosis of Young Onset Parkinson’s disease lightly. Undaunted by such a diagnosis of PD, they both have become involved in two different states in a common effort to reach out to the public to raise donations for research and to help others understand Parkinson’s disease. One of the major efforts in this quest was to have a team in the 2006 Unity Walk and raise $10,000. These two women have stopped at nothing to reach and then exceed their team goal by $7,000. “Some people with Parkinson’s aren’t able to get involved with the cause—Judy and I are lucky that we can,” says Annie.
Annie resides in Kendall Park, New Jersey. She was diagnosed two years ago at the age of 39. Her pride and joy is her husband, Joe and their son who is 10 and their daughter, age 5. She stays very busy with a wide range of interests, i.e. painting and poetry.
Judy is from East Tennessee and works full time as an analytical chemist. She was diagnosed over 3 years ago at the age of 40. She has been married for 22 years and has a daughter who is 12 years old.
These two friends met through an online support group. “I was responsible for interviewing ‘a person of the week’ for our newsletter. I read Judy’s story and realized we had a lot in common—such as our hopes for the future,” Annie stated. And they became friends in a year’s time.
Annie began to champion support and started a new online group called USA PD-PALS. “She is a go-getter. She likes to tackle new things so she started a chat group through Yahoo and began to see membership and interest increase,” mentioned Judy. “This is an educational support group where we host special chats one night a week about a specific topic of relevance to PD. It’s really neat to be a part of a support system that understands each other. We have grown to over 75 members, including people from England and Australia. The name of the group is only indicative of where it originated. Anyone is welcome to join this caring online support group,” noted Annie.
Annie and Judy try to cope with their disease in similar ways. However, their diagnosis came down two very different paths.
About one year before Judy’s diagnosis she had gone to her primary care doctor with a sore thumb and eventually a hurting shoulder. Still having questions—her doctor sent her to an orthopedic doctor. By that time she had developed a limp on the same side. That was enough to get a referral to a neurologist.
“A few months before I was diagnosed I read an article in my local newspaper about Peggy Willocks, a leading advocate for Parkinson’s disease and a Young Onset patient herself and from the description of her symptoms, I knew that a diagnosis of Parkinson’s disease was a real possibility,” said Judy.
“My husband was with me in the neurologist's office when I was told that I had Young Onset Parkinson's disease. we asked a few questions but left not knowing what this diagnosis would mean to us. I felt numb leaving the doctor’s office—and I cried all the way home. Since then my family and church have been great sources of support. You may know all you can about Parkinson’s disease but it is really an emotional adjustment to come to grips with it. Also, talking to other people with Parkinson’s is a big help—they help me see how others cope from day to day,” Judy expressed.
Annie goes on to say, “Unfortunately, for me my diagnosis wasn’t as quick. It took 5 years. I had terrible pain in my left arm and had a lot of facial pain. My symptoms were coming and going.”
“At one point I had a very bad sinus infection—then I began to see doctor’s to try to get answers. I saw a world of doctors. They were telling me it was stress related and that I should see a physiatrist but while I was pregnant with my daughter my symptoms seemed to subside,” Annie said.
“Six months post partum, a tremor in my left hand became more prominent. I thought I had Multiple Sclerosis. However, I took one doctor’s advice and saw a neurologist. The neurologist I saw at the University of Pennsylvania tested me for Multiple Sclerosis and couldn’t find evidence of the disease and told me to come back in 6 to 9 months if the symptoms worsen and speak to his colleague Dr. Stern, a Movement Disorder Specialist,” remarked Annie.
“In the meantime, my husband and I continued to seek out answers. I went back to the University of Pennsylvania and we weren’t in the doctor’s office for a minute when Dr. Stern, a Movement Disorder Specialist, diagnosed me with Young Onset Parkinson’s disease,” Annie said.
Annie went on to say, “the not knowing was worse—then just having my concerns validated—it was bitter sweet.” And Judy agreed by saying “at least when there is a proper diagnosis you know what you are going to face.”
USA PD-PALS made their debut at the 12th Parkinson’s Unity Walk. They had over 30 family and friends walk that day. “We love the Unity Walk,” said Annie. And after a first time visit to New York City, Judy said she is ready to return.
“My husband, daughter, sister and two friends from church came with me. They could have given a lot more monetarily to Parkinson’s Unity Walk but they wanted to show their support by participating in the Walk—this meant so much to me,” said Judy.
Both Annie and Judy described another exciting activity they were able to do while in Manhattan. They went to the Today Show to be spectators during the outside concert on the Friday before the Walk. “We were standing outside and asked one of the crew members if we could give Katie Couric something. She came over and we gave her a booklet, Stories from our Parkie Hearts, that we compiled from stories written by other Young Onset PD patients about their lives and we gave her a tulip magnet which has an inscription ‘Cure Parkinson's’. We told her we were in New York City for the Unity Walk the next day and she wished us the best. We later got to go in the studio shortly after the show was over and got to meet and talk with Katie, Matt and Ann. They were so gracious and encouraging and let us take pictures with them.” commented Annie.
This was Judy’s first time to New York City. She told me that she felt a little intimidated to come to such a big city and experience 10,000 people in Central Park. However, she became comfortable immediately. "I took over 250 pictures during my visit—I just couldn’t believe the awe-inspiring environment and people that were there the day of the Unity Walk,” mentioned Judy.
“We feel like people are doing themselves a disservice if they don’t try to come—it’s a great social gathering—but the educational information is invaluable,” Annie mentioned. Judy told me “You know Trina, I was reading about the 1st Unity Walk that had over 200 people and raised $16,000—this was our first year and our team of 14 raised $17,000. We couldn’t be more excited!”
Annie remarked, “this team started early—we started our fundraising in October. We had individual goals of $5,000 and $2,000 and a team goal of $10,000 at first and had to quickly increase our individual goals. Our fundraising agenda included: Pennies for Parkinson’s, Pizza for Parkinson’s, selling tulips, meeting with local banks and schools, and an online raffle. The donations began to roll-in and we received lots of support from family and friends through on-line donations on the website. On April 13th, two weeks before the Walk we hit our team goal of $10,000 and did not stop.”
These two go-getters give a little advice. “People should realize that even if they aren’t able to come to the Walk they can still help at home, by using the phone or computers to help get the word out. It doesn’t hurt to ask people for a donation—the worst they can do is say ‘no’. Tell someone about Parkinson’s disease—don’t be shy about raising awareness,” stressed Judy. “Everyone has a different way of doing things—network, use your talents and don’t give up!”
Each person participating in the Walk has a very personal reason for doing the walk. Annie and Judy said they felt excited every time they checked to see how the donations were adding up on their team page. It is their ultimate wish that some of their effort will result in a cure for the disease that is affecting their lives, their friends lives and many others who live with
fax: (609) 688-0875Parkinson's disease. Together they have found a way to personalize, through the Parkinson's Unity Walk, their determination to work for a cure. Annie ended the conversation when she said “Parkinson’s has changed my life—but I’m choosing how it will!”
Thank you to all our Teams that help us get one step closer to a cure.
Trina Stokes
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| Annie and Judy meet Matt and Katie from the Today Show. |
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USA-PD PALS at the 2006 Walk.
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