The first question that accompanies a Parkinson’s diagnosis is – “How do I tell my children/grandchildren?” Being fearful, you might like to withhold the news. But being honest and open with them about the neurodegenerative disorder is usually best.
When children know they are being kept informed, it helps make the experience less frightening. That being said, we understand that breaking such news to them can be nerve-wracking. Don’t stress out. This blog will help you start that conversation and give you the tools to keep the conversation going every step of the way.
Breaking the news
The first conversation about Parkinson’s is often the hardest. Choose a time when you and the kid feel comfortable. Consider your child’s or grandchild’s age. Keep in mind that children at different ages have different ways of understanding things. If you have children or grandchildren of different ages, you might speak with your older children first. He can probably help you say “Kids, I have a condition called Parkinson’s.”
Explaining the diagnosis
All you need at this point is being honest and using simple language. Wearing off, tremors, the difficulty in moving and stooped posture may soon get alarming to young children. But when these things are explained in a language they can understand, and their curiosity is satisfied, you feel less frightened about their reactions.
Apart from explaining freezing, shaking, muscle stiffness and stooping, you can’t afford to miss explaining masked face and slurred speech. Say “Lack of expression on my face or soft voice doesn’t mean I’m sad or angry. It’s my brain.”
Young children learn by repetition, so be prepared to repeat your explanations time and time again.
Understanding their feelings
They might feel angry, afraid, guilty, or confused. Let them know that strong feelings are normal. Give hugs and kisses. If children become upset or wander off, tell them “the Parkinson’s happened on its own. Nobody did anything to make it happen. My doctors are very good, and I am going to do everything possible to get better.” Explain that Parkinson’s is not contagious and they can’t catch it like a cold. It important to convey, “Nothing has changed. We can hug and kiss each other just like always.”
Asking questions & discussing treatment
Since treatment (particularly deep stimulation surgery and mediation) may bring about few changes in your life, encourage your children to ask questions. If children understand that the side effects are part of the treatment and not part of living with Parkinson’s, they can handle their emotions better. If you don’t know the answer to a question, let them know that you will find out soon and get back to them.
You may also find that your child wants to help but doesn’t know what to do. Giving children simple tasks like bringing water helps them feel connected. You can get him or her a physical activity every day to provide an outlet for any anxiety or aggression.
At times, the child may miss playing with you and want to be close. By hugging each other from a seated position or lying down on the bed, you can have some quality time together. Watching TV together can also bring a sense of togetherness.
Be comfortable with yourself
Keeping a positive attitude can affect our mental and physical health. Don’t push yourself aside. Keep Parkinson’s present through humor or whatever works for you. After all, living with Parkinson’s can be an opportunity to teach your kids a basic tenet of life —“what happens to us may not be completely in our control, but how we handle it is up to us.”