One young man's story of what it's like living with Parkinson's disease

By Julie Fann
star staff
jfann@starhq.com

  
GRAY -- Doctors diagnosed Bobby Cardwell with Parkinson's disease at the age of 27. Following his diagnosis, he lost his job, his wife, and his ability to function normally. Now, at the age of 42, though the disease has progressed, he says he has found hope.
   "I was very depressed, and I called Quillen Rehab Hospital, and they told me that I needed to talk to Peggy Willocks. She got me a computer, and I went to the Parkinson's Action Network meeting in Washington, and now I'm connected to others who have the disease," Bobby said.
   His speech slurred and difficult to understand due to an experimental brain surgery called Deep Brain Stimulation and his steps slow and balance unpredictable, Bobby Cardwell told his story over breakfast at a restaurant in Gray with Peggy Willocks, former principal at Harold McCormick Elementary School who also has Parkinson's, and his new care partner, Judy Plumley.
   Originally from Knoxville, Bobby was working as an assistant manager at Home Depot in 1990 when he was diagnosed with Parkinson's, though he suffered from symptoms prior to that time. "I had a slight tremor in my right hand, and my shoes were always worn out on the outside," he said.
   One year after his diagnosis, managers at Home Depot fired him due to an alleged "misuse of company funds," though he had done something fairly common among managers, took his employees out for drinks using $10.
   "I continued working at other jobs but kept going downhill. In 1997, I filed for disability, and didn't get it. I filed for disability five times and was denied because they didn't consider Parkinson's disease disabling. Finally, I paid a lawyer $2,000 and was able to get disability," he said.
   Bobby was also denied medical discharge benefits from the National Guard, where he had served for 17 years. "They said I didn't have enough time in active duty to give me benefits," he said.
   Going downhill with Parkinson's disease means losing the ability to do things most of us take for granted, like walking, speaking, feeding one's self, swallowing, thinking, and getting dressed. Common symptoms include tremors, bradykinesia (extreme slowness of movement), stiffness and rigidity (often accompanied by pain), and balance problems. Balance is unpredictable and worsens as the disease advances, eventually confining one to a wheelchair. Medication, which can improve most symptoms, often results in dyskinesia (uncontrolled movements of the head, arms, torso, and/or legs), which can become as disabling as the disease itself.
   After receiving disability, Bobby and his wife and daughter, Cassie, went to Bethesda, Md., where Bobby was a volunteer for Parkinson's research. "We were there for a year, and our marriage was fine at that time. We started having problems in 1999. She didn't want to take care of me. She said she raised her brother and sister and took care of her grandmother for three years before she died, and she didn't want to take care of me."
   Directing her comments to her friend, Peggy commented, "Bobby, she's just like 90 percent of the people who can't take care of somebody with a chronic illness. You know, it's just not what they have in mind. Just like my husband; he's not too keen about that either."
   In 2000, Bobby had his first Deep Brain Stimulation (DBS) surgery to restore his movement and ability to walk because he had become confined to a wheelchair. Bobby underwent another DBS surgery in 2002. Though the surgery helped his movement, he lost the ability to speak clearly.
   In 2001, Bobby and his wife separated, and Bobby lived for six months alone with his daughter Cassie, who was 8 years old at the time. Cassie became his primary caregiver, except on weekends when she would visit her mother. "I became a couch potato. I would get up, take Cassie to school, then come home and sit, then go back and pick her up," he said.
   While living in an apartment complex in Gray, Bobby met Judy Plumley, one of his neighbors. After developing a friendship, the two have been together for the past three years. "We've been through good times and bad times and surgeries together, and we were talking yesterday, and we decided we would probably always be together," Judy said. "When I first met Bobby he couldn't hardly walk. He was in a wheelchair and sometimes used a walker, but that didn't stop me."
   Judy's life has also been touched by tragedy. After divorcing her husband of 27 years due to his alcohol abuse, two years after the divorce her husband suffered from a fatal stroke.
   Attending his first annual Parkinson's Action Network (PAN) forum in Washington, D.C. this year, Bobby was able to meet hundreds of others who suffer from Parkinson's disease and also speak with legislators to convince them to join a group designed to study the disease and find a cure.
   During a typical day, Bobby said he gets out of bed, eats breakfast, tries to do the dishes and other things if he is what those with Parkinson's disease call "on". However, fatigue is a constant problem with Parkinson's disease.
   Depending on age of diagnosis, those who suffer from Parkinson's usually live 20 to 30 years before they die from complications brought on from the illness. "I always say, the good news is, you don't die from Parkinson's disease, and the bad news is, you don't die from Parkinson's disease," Peggy Willocks said.
   "You die from constipation or a blocked bowel because your muscles don't move, or you die from aspiration pneumonia because you can't swallow and food goes down into your lungs, or you die from kidney failure, and then your death certificate will say renal failure, etc., but it won't say Parkinson's. I wish they would change that."
   Bobby said meeting Peggy and Judy, as well as his relationship with his daughter, Cassie, gives him hope, along with the possibility that a cure could be found during his lifetime.
   Peggy Willocks said, "And that God is not going to give you anything you can't handle. Everything happens for a reason."
   In a written description of what it's like living with Parkinson's, Bobby says, "There's nothing normal about PD -- and especially the on/off times. How do you explain that this same person dancing without a cane a few minutes ago can't even hold the receiver of a telephone now? How can you say 'I can't write now' when, moments earlier, you could draw, do calligraphic lettering, and thread a needle? I have three words for the unpredictable on/off times ... I HATE IT! I'd like to say, 'this too shall pass', but my patience is wearing awfully thin! Pray with me, empathize with me, help me, but don't have pity on me. Get angry enough to keep fighting for answers!"
   Approximately 1.5 million people are diagnosed with Parkinson's disease in the United States. Nearly 40 percent of them are under the age of 60.