Originally Published Online

Understanding PD
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Living Well With PD
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Clinical Trials
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One in a hundred North Americans over the age of 60 will develop Parkinson’s Disease. Estimates are that over one million people in North America alone are affected by Parkinson’s but this number is likely much higher, due to misdiagnosis and underreporting. Needless to say, those diagnosed are not the only ones affected. Instead whole family units struggle with this challenge, particularly the most vulnerable, our children.

Some of the changes associated with Parkinson’s disease can alter both appearance and ability. This can be a monumentally difficult adjustment for both the person afflicted and for their loved ones. Tasks and movements accomplished easily at one time become increasingly challenging as this neurological disease progresses.

There
may be a level of fear associated with the changes that they see in their parents or grandparents - particularly if not acknowledged or left unexplained and that is why when the timing is right, it is important to have a conversation about Parkinson’s disease.

Of course, every family is different. The age of your children and their level of understanding will guide you in terms of when, how much and what to disclose. There are some other general guidelines to consider when having this conversation.

1) Be honest in your disclosure because children are extremely intuitive. They often sense there is something wrong and the stories they make up in their head are probably much worse than what the reality is. It makes a child much more uncomfortable if they feel a parent or other loved one is hiding something from them.

2) Use words that are directed towards their education level. Try to limit the complexity of your explanations but do try and educate them about some of the more common technical terms. Take into consideration their age and maturity level when deciding what information to share with them.

3) Always express hope. Children are remarkably resilient and their perspective is usually far more optimistic than our own. Honor that optimism. We could learn from them because truthfully, every situation does have a positive perspective. Make that your main focus even if you sometimes don’t feel that way. I’m not advocating dishonesty but children rely on reassurances by trusted adults and their reactions will often mirror the family’s attitude.

4) Keep the lines of communication open. This disease and its manifestations will change as time progresses. A child’s understanding and insight will also change with age. New questions or worries may arise and therefore it is imperative that a child feel comfortable in continuing the conversation whenever they are concerned.


5) Empower them. Having a loved one with a chronic illness is a lot for a child to handle and sometimes they can start to feel helpless especially when like this, it’s something that’s not within their control. But by giving them concrete ways to help out, be it with daily tasks such as housework or more proactive activities such as fundraising, they feel more empowered.

6) Access helpful resources. Explore the marketplace for appropriate books on Parkinson’s Disease that are geared towards your child’s age group. And if you find that the child is having a hard time coping with the diagnosis, then seeking counseling is always a good option.