 |
 |
Published Sunday, April 17, 2005 Parkinson's Can Rob Sufferers of Facial, Vocal Expressions By Gary White The Ledger Adair Wheaton has plenty of reasons to be pleased with his life. Wheaton, who had a career as a citrus researcher, now enjoys a comfortable retirement at his lakefront Haines City home with his wife, Harriett. He has seven grandchildren, with whom he spends as much time as possible. And yet Wheaton wears a constant expression he knows others might interpret as stern, if not gloomy. "I'm surprised when I look in the mirror and see the lack of expression on my face," says Wheaton, a Haines City resident. "I can be happy and enjoying things, and yetmy face doesn't show much expression." Wheaton, 69, was diagnosed with Parkinson's disease 15 years ago. The disorder has not robbed him of his capacity for happiness, but it has largely erased his ability to look happy. The primary effects of Parkinson's -- rigidity, slowness of movement, muscle tremors and imbalance -- can greatly disrupt a patient's life. But for Wheaton and some other Parkinson's patients, the neurological disorder's secondary symptoms -- the blank face and flattened voice -- add to the burden, creating misunderstandings and straining relationships. "It's still something to get used to, because even though I know that's a characteristic of Parkinson's, sometimes he'll look (as if) staring unemotionally and for a minute I'll think, `What's going on?' " says Wheaton's wife, Harriett Wheaton. "I think for the most part I understand what that is, but it's still difficult." The emotionless bearing of Parkinson's patients like Adair Wheaton, medically described as hypomimea, is known among health professionals and caregivers as "the mask." The symptom clearly afflicts the world's most famous Parkinson's patient, Muhammad Ali. Known during his boxing prime as much for his facial and verbal antics as for his punches, Ali had been rendered stone-faced by the time of his appearance at the opening ceremonies of the Atlanta Olympics n 1996. The effects of Parkinson's are highly variable, but Faye Kern, a coordinator with the Central Florida chapter of the American Parkinson Disease Association, says most patients experience some loss of facial control and vocal inflection. "Socially it presents some problems because people may think (a patient) is always sad because they talk to them and really don't respond back to them," Kern says. "Most people, you respond back to them with your face and eyes. Some people might say, `Why are you sad?' and they say, `I'm not sad.' " Dr. Theresa Zesiewicz, a neurology professor at the University of South Florida in Tampa, notes Parkinson's is one of few neuro- degenerative conditions that can be treated. She says medication can help with facial freezing, just as it can with the disorder's primary symptoms. "There are just some patients who are more prone to facial involvement with Parkinson's disease than others," says Zesiewicz, director of research for the Southeast Parkinson Disease Association. "Very often I will see it and mention it to a patient, and the patient will say, `Oh, really?' Very often the care partner and physician see it and the patient does not." Zesiewicz adds depression afflicts half of Parkinson's patients, making it difficult to tell whether an unsmiling face reflects a physical effect or an emotional state. STRUGGLE FOR EXPRESSION Pauline Buckley of Lakeland was originally diagnosed with muscular dystrophy in 1991 while living in Oklahoma. Four years ago, after she and her husband, Don, had moved to Lakeland, a Tampa doctor observed the retired teacher's lack of facial vibrancy and decided her ailment was actually Parkinson's disease. Medical tests confirmed the diagnosis. Pauline, 67, now relies largely on a wheelchair to get around. On a recent morning, she sits in a blue recliner in the couple's living room, her torso tilted to the left and pillows propped behind her back and neck. She is mostly free of the tremors common to Parkinson's patients, but her hands curl rigidly on her lap and her lips barely move even when she speaks in a faint voice. "She's able to smile a little," Don Buckley says. "It's not all that noticeable, but I can tell when she's smiling when I see her. . . . I guess I've gotten used to it. She usually tells me how she feels." Pauline does daily vocal exercises, referring to several pages of instructions she received from a speech therapist. One page consists of repeated sentences with differing emphasis: "I'm so sleepy. I'm so sleepy." Pauline reads them aloud, striving for vocal inflection. She says she tries not to be discouraged. "I'm a happy person, content," she says, speaking in whispery phrases. "I do the best I can. . . . My inability to talk is frustrating. At dinner, nobody can hear me. I just smile." Pauline Brunk is caring for her second Parkinson's patient. Her late mother was afflicted by the disease in the 1970s, and Brunk recalls the "serpentine stare" that overtook her mother's face. Now it's her husband, Gene Brunk, who has Parkinson's. Pauline says the previous experience makes her better equipped to understand how the disease affects her husband. "He doesn't smile as much; he doesn't have that much expression," Pauline says. "Gene, a lot of times when he talks to people, it's like a blank is on his face, and people, I think, they don't know if he's not listening or not understanding." Gene Brunk, 86, says he had a grandmother with Parkinson's, whom he mistook for simply a "grumpy old woman." Now that he has the disorder, he notices people avoiding him. "People think you're not interested," Brunk says. "They need to understand we who have this problem are the same as we were two years ago or 10 years ago, and we're frustrated." Because Parkinson's patients can appear dazed or disoriented, Brunk carries a yellow card in his wallet that reads in part, "I have Parkinson's disease. I am NOT under the influence of alcohol or drugs . . ." The source of this article is the Online Ledger: http://tinyurl.com/9b9cn MISPERCEPTIONS AND HURT FEELINGS Bob Walsh of Haines City was diagnosed with Parkinson's two years ago, though his symptoms had arisen earlier. Donna Figura, his companion and caregiver, says she mistook Walsh's flat demeanor for rudeness before the diagnosis. "That's one of the things I noticed first -- the blank look, just sort of staring off into space," Figura says. "People thought he was staring at them, and he isn't, he's just staring right through. . . . And his voice gets softer and softer and softer." Figura, a gregarious woman, says Walsh's expressionless manner makes it hard to gauge his mood. "We just came back from Ireland, and people say, `Did he have a good time?' " Figura says. "I say it's hard to tell, because he says `yes,' but you can't tell because there isn't much emotion." Harriett Wheaton often suffers a similar uncertainty in her husband's presence. "I'm probably over-vigorous with, `Are you OK?' " she says. For Adair Wheaton, the uncertainty is reversed. Parkinson's creates a divide between his emotions and his outward appearance, and he has to wonder how others perceive him. "I try to be more verbal, but that's another problem with Parkinson's -- it's not only facial expression, but also voice inflection is reduced," he says. "You kind of mumble along in a monotone; you don't show the show excitement, or the pain." Wheaton worries his grandchildren might be put off by his outward stoicism and not fully recognize his affection for them. He wonders if the effects of Parkinson's might keep him from being as close to the grandkids as he would like. His wife, though, says their grandchildren seem to love and respect Wheaton just as they would if he were more animated around them. And Harriett Wheaton says her husband's personality still radiates in more subtle ways. "I miss that he's not like he was," she says. But she quickly adds, "His eyes still twinkle, so that kind of helps." Gary White can be reached at [log in to unmask] or at 863-802-7518. ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn