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WHAT PARENTS WHO HAVE PD SHOULD SAY to THEIR CHILDREN: The Parkinson's Disease Society (www.parkinsons.org.uk) offers pertinent advice and counsel to those parents who have both PD and children. "A key message seems to be open and honest" when talking to your kids, the PDS Information Sheet suggests. "Don't keep it a secret." As soon as you are diagnosed with PD, explain to them what it means to your health and to their lives as part of the family as a whole.
Don't be vague or apologetic, the PDS suggests. Be specific and clear, and fully explain that PD is not contagious. Because of the fatigue associated with PD - and the "on-off fluctuations" that are inevitable - parents with PD may not be able to spend as much time with their children, and won't be able to get involved in as many activities as they would like to be involved with. To back that up, PDS writes about a real-life woman with PD named Tracy, who has a daughter, eight years old, named Ysabel.
There are times when I'm just waiting for her to get into bed, so I can get into bed straight afterwards!" Tracy explains. "Anything that involves an excursion (a walk or swimming) is very hard, especially as I mostly use a wheelchair when we go out." That said, Tracy also mentions that having a loving child like Ysabel gives Tracy "motivation to carry on when my Parkinson's is bad, or when I'm feeling down."
With all that children, in particular teenagers, have to cope with in this period (temptations with drugs, sex, gangs, electronic games and the Internet), "Parkinson's can be a very difficult extra burden to handle," the PDS article asserts. Another parent quoted by PDS is Gerry, who tries to put himself in his child's shoes, "a child with a parent with a condition like this, but to be honest, I can't really...
The good news - and PD parents need desperately to locate some positive aspects of their changed family lives - is that Gerry's wife takes the son to parent's nights, and sporting events. "With good communication and forward planning," parents who have PD can adapt and adjust, and keep their families intact.
Works Cited
Ali, Rasheda. "Muhammad Ali's Daughter Writes Children's Book on Parkinson's. ABC
News. 2005. Retrieved 23 Oct. 2006 at http://abcnews.go.com/GMA/print?id=913265.
Lees, Lesley. "Living with Parkinson's disease - a child's perspective." British Medical
Journal 324.1562 (2002): Retrieved 23 Oct. 2006 at http://bmj.bmjjournals.com/cgi/content/short/324/7353/1562?eaf.
Parkinson's Disease Society. "Talking to Your Children about Parkinson's: PDS Information
Sheet." Retrieved 23 Oct. 2006 at http://www.parkinsons.org.uk.
Schrag, Anette, Morley, David, Quinn Niall, & Jahanshahi, Marjan. "Development of a Measure of the impact of chronic parental illness on adolescent and adult children. The Parental Illness Impact Scale (Parkinson's disease)." Parkinsonism & Related Disorders
Waller, Tim. "Modern childhood: contemporary theories and children's Lives." An Introduction
To Early Childhood. Thousand Oaks: Sage Publications, 2005. 55-69.
Works Cited
Ali, Rasheda. "Muhammad Ali's Daughter Writes Children's Book on Parkinson's. ABC
News. 2005. Retrieved 23 Oct. 2006 at http://abcnews.go.com/GMA/print?id=913265.
Lees, Lesley. "Living with Parkinson's disease - a child's perspective." British Medical
Journal 324.1562 (2002): Retrieved 23 Oct. 2006 at http://bmj.bmjjournals.com/cgi/content/short/324/7353/1562?eaf.
Sheet." Retrieved 23 Oct. 2006 at http://www.parkinsons.org.uk.
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