TAILIEUCHUNG - TALKING WITH KIDS ABOUT PARKINSON’S DISEASE

Lisa Lieberman, ., ., is a psychotherapist with Parkinson’s Resources of Oregon. When it comes to communicating with children about Parkinson’s — or any disease — she believes that knowledge is power. “Lack of knowledge creates more anxiety,” she says. “Kids are intuitive. They know what’s going on. If they aren’t given a way to make sense of it, it just makes it worse for them.” Even the most difficult news, once out in the open, relieves the anxiety that uncertainty creates. The good news is that people living with Parkinson’s today have more room for optimism than ever before, so the con- versations, while understandably difficult, need not be without hope. “And. | SPECIAL REPORT TALKING WITH KIDS ABOUT PARKINSON S DISEASE Living with Parkinson s disease PD presents challenges being a parent with the disease raises another set of issues. Approximately 10 percent of the million people with Parkinson s are below the age of 40. Many of them are in the midst of raising their families. Talking to your children or even grandchildren about PD is an emotionally charged but necessary task. Patients and professionals agree that understanding is the key to acceptance and moving forward as a family. COMMUNICATING ABOUT THE DISEASE Relieve the Uncertainty Lisa Lieberman . . is a psychotherapist with Parkinson s Resources of Oregon. When it comes to communicating with children about Parkinson s or any disease she believes that knowledge is power. Lack of knowledge creates more anxiety she says. Kids are intuitive. They know what s going on. If they aren t given a way to make sense of it it just makes it worse for them. Even the most difficult news once out in the open relieves the anxiety that uncertainty creates. The good news is that people living with Parkinson s today have more room for optimism than ever before so the conversations while understandably difficult need not be without hope. And it can be an opportunity to talk about the ups and downs of life in a developmentally appropriate way says Lisa. The Road to Reassurance What children need most is reassurance. Sandy R. was diagnosed in June 2003. When she first told her daughter the 14-year-old was concerned and shocked. I told her right away that it s not something that s going to kill me says Sandy. I could see that relieved her tremendously. Provide reassurance that although things may be a little different you ll continue to be there for them in ways that matter. Of course it s important to balance optimism with reality and not make promises you may not be able to keep. You might want to use words like I think I ll be able to. . . I ll try to. . . or I hope .

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