Talking to Children about PD

TALKING TO CHILDREN ABOUT PD

A DIAGNOSIS OF PARKINSON'S CAN BE HARD IN ITSELF, BUT WHEN YOU HAVE YOUNG CHILDREN OR GRANDCHILDREN, THERE ARE OTHER ISSUES TOO: WHAT SHOULD YOU SAY TO THEM? AND HOW WILL THEY REACT? AFTER DIAGNOSIS, ONE CONCERN FOR SOME PEOPLE IS WHAT THEY ARE GOING TO TELL THEIR YOUNG CHILDREN OR GRANDCHILDREN. IT CAN BE DIFFICULT TO DECIDE WHETHER OR NOT TO TELL CHILDREN ABOUT THE ILLNESS AND IF YOU DECIDE TO DO SO, HOW MUCH TO TELL THEM. YOU WILL KNOW BEST, BUT SOME USEFUL POINTS TO REMEMBER ARE LISTED BELOW:

A key message is to be open and honest. Don't keep it a secret. Tell them soon after the diagnosis, and maybe over several occasions. They are probably aware that something is not right, so it is usually better to be honest about having Parkinson's, rather than letting them draw their own conclusions or think something worse might be happening.

Tell them as much as you think they want to know. Make it simple and appropriate to their age and maturity. Tell them they can talk to you at any time. And keep talking. Using a book with pictures of the brain may help explain things to a child. The free APDA publication, My Mommy Has PDBut It's OK! may also be helpful for younger children.

Remind them that although you may be a bit slower or perhaps not able to do everything you used to do, you still love them the same.

Do not assume anything. You know Parkinson's does not affect life expectancy and is not contagious, but are your children 100 percent sure?

Meeting other families in a similar situation can sometimes be reassuring. Call your local APDA Information & Referral Center for current programming in your area and ways to be connected with other families with children.

The roles and duties of individual family members may have to be re-negotiated as Parkinson's progresses. It may be a good idea to have regular family 'get-togethers' to go through how everyone in the family is feeling and coping. These can help everyone in the family to air and share their feelings rather than keeping them bottled up, and to find constructive solutions to family concerns.

Children are often good helpers. Remember to show—and tell—your children regularly that you deeply appreciate them and their efforts to help. However, be aware of depending on them too much, and try not to overload them with responsibilities. Even though they may be helpers, they also need to be nurtured.

Encourage children and young people to talk to other family members, teachers and friends too.

Try to lead by example—show them that life is still good and you are still the same person, despite Parkinson's disease.

And remember

Children may feel all sorts of emotions in relation to their parent's or grandparent's Parkinson's: grief, fear, rejection and embarrassment. Some may become weepy, obstructive or withdrawn. The likely reactions may differ even among children in the same family, depending on their age. Each family is unique, and with good communication and forward planning you can help children cope and live well with a parent or grandparent who has Parkinson's.

This article is based on the Parkinsons Disease Society of the UK information sheet, "Talking to Your Children about Parkinson's." The entire article can be downloaded at www.parkinsons.org.uk

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