Former principal continues marching for Parkinson's cure

By Julie Fann
Star Staff
jfann@starhq.com

  
Though she suffers from a severe neurological illness that daily impairs her ability to live life fully, Peggy Willocks is not afraid to call her affliction with Parkinson's disease a gift.
   "It has given me purpose. For so long, I was depressed, but now, I'm overwhelmed with things to do. It's amazing how just a start on the computer has put me in touch with so many people," said Willocks, who retired in 1998 as principal of Harold McCormick Elementary School due to complications from the disease.
   Those who Peggy Willocks has met due to her intense involvement with the Parkinson's Action Network (PAN), an organization that works to increase awareness of Parkinson's disease and lobby for federal support, include Michael J. Fox, ABC's Sam Donaldson, and Health and Human Services Secretary Tommy G. Thompson.
   During the Parkinson's Action Network's Tenth Annual Forum held May 13-15 in Washington, D.C., Willocks was presented an award for her outstanding advocacy work in Tennessee by Sen. Lamar Alexander. Approximately 150 people attended the three-day PAN Forum; however, nearly 800 attended the Morris K. Udall Awards banquet, an elegant dinner held at the Washington Hilton and which costs $250 per plate.
   "The only way I'm able to attend the banquet every year is because my daughter gives that money to me as an anniversary gift," Willocks said. "I'm thankful."
   Morris K. Udall served in the U.S. House of Representatives for 30 years and was a candidate for the Democratic presidential nomination in 1976. He also suffered from Parkinson's disease.
   "In 2000, the Morris K. Udall Act was created, and it built a Parkinson's research agenda and formed a panel of experts who are searching for a cure for the disease," Willocks said.
   During the Udall Awards dinner, someone is also presented with an award named after Millicent Kondracke who was diagnosed with Parkinson's disease in 1987 and has been the voice for advocacy on Capitol Hill.
   "She is very progressed with the disease now. She had a very young onset, and it's amazing how she has gone downhill. I got to sit with her at the banquet," she said.
   As Parkinson's disease progresses, those who are afflicted become imprisoned in their body and lose all motor function and muscle control. "You drool; you can't swallow; you can't feed yourself ... there's a saying that goes, 'The good news is, you don't die from Parkinson's. The bad news is, you don't die from Parkinson's," Willocks said.
   The PAN Forum focused on educating those who are interested in Parkinson's disease research and advocacy. The focus of the first day was current research; the second day involved teaching those at the forum how to lobby for federal support, and on the third day those 200 people met with legislators and tried their skills.
   Not only did Willocks receive an award for advocacy work at the forum, but she also attended the Unity Walk for Parkinson's Disease held in New York City on April 26. Approximately 4,000 people attended the walk to raise funds for research.
   "We walk two miles around Central Park, and I worked through a group called PLWP (People Living With Parkinson's Disease). We raised approximately $2,000, but I didn't raise much there because I'm planning a big fund raiser here," she said.
   Approximately 1.5 million people are diagnosed with Parkinson's disease in the United States. Many of them contract the disease at a fairly young age. Willocks was diagnosed in 1994 after she noticed a twitch in her right arm. She said she had symptoms of the disease at age 39.
   "I take 24 pills a day at a cost of $927 a month. The only way I can afford that is because I have a supplementary insurance as well as Medicare. Some people only have Medicare to rely on, and Medicare doesn't help with medication costs, which is something we're lobbying for in Washington," she said.
   Willocks was one of six people worldwide to receive an experimental surgery at Emory University in Atlanta, Ga. nearly three years ago. Since that time, she says the symptoms of the disease seem to be somewhat less severe.
   "There are times when I am 'on' and 'off', meaning that there are times when the medicine works and times that it doesn't. It seems like, since the surgery, I have fewer occurrences of that," she said. Willocks main symptom is Brady Kinesia, or extreme slowness of movement and muscle rigidity accompanied by severe pain. She also struggles with balance and wears a brace on her left ankle to keep it stabilized.
   In spite of the disease, however, Willocks maintains an optimistic outlook. She is kind, generous, thoughtful and extremely courageous. There is not a hint of self-pity in Peggy Willocks' personality. She regularly keeps a journal to help her cope with her life. The following is an excerpt from it:
   "I went to a funeral the other night - my grandmother's sister ... And the minister made a profound statement that I will not soon forget. He said that our life is but a mist - a vapor - here a little while, then gone (James 4:14) ... In between marks our entire existence on Earth ... What impact we make on the world must be done during that short, concise, temporary time."