Parkinson’s: A Parent’s Guide to Talking to Your Kids

If you or a family member is diagnosed with Parkinson’s Disease, you may be thinking about how to tell your loved ones, specifically how to tell your kids. It’s important to provide reassurance, regardless of your child’s age. You can do this by letting your kids know that although it’s a difficult diagnosis, that you’ll do everything in your power to be there for them.

Parkinson’s is not easy to live with, especially because it’s a complex neurodegenerative disorder and affects everyone differently. A few common signs and symptoms may include: shaking of hands or fingers, slowed movements, rigid muscles, cognitive impairment, slurred speech, to name a few.

The symptoms of the disease are hard to hide, and kids are naturally intuitive (they know what’s going on) so they are likely to get a sense that something is not quite right.

Below are some simple steps to help you get the conversation started and help your child better understand Parkinson’s.

Why Should I Tell My Children?

Again, most children can sense when something is “wrong” so it’s not the best option to keep yours’ or a family members’ diagnosis hidden. Though your first instinct might be to protect your child from every bad thing in this world, it’s also important to be realistic because keeping this type of news from them may be worse than not telling them at all.

A child might get it in their head that the diagnosis is their fault and start to feel guilty. If you let them know early, they may be able to understand better that it something that has happened out of their control.

Telling your children about the diagnosis may also provide you with some relief, especially if the symptoms are severe.  This knowledge may make an episode less frightening for them.

Explaining the Symptoms to Your Children

It’s important to use simple terms when explaining the symptoms that you or your family member will start to experience after being diagnosis. Firstly, you should address the physical symptoms to prepare you child for what to expect. This can include:

  • Shaking: Let your child know that this is a normal occurrence that will happen. If you’re explaining this to a younger child, it may be a good idea to tell them that “your brain is not feeling well.”
  • Stiffness: It’s a good idea to compare this symptom with something that your child may have experienced like a sports injury or how they feel after a hockey practice.
  • Weakness in the face: This will cause lack of expression, so it’s important for them to know that it doesn’t meant the person is sad or angry.

Common Questions to be Prepared to Answer

Children like to ask questions so it’s important to be fully prepared as some of their questions may be quite difficult to answer If you’re put on the spot. Here are a few to prepare for:

How did you get Parkinson’s?

This question might stem from them thinking they did something wrong, again, reassure them that it was out of their control.

Will you get better?

It’s important to let them know that although there is no cure for the disease, there are medications that the doctor has given that can help with the symptoms. Let younger children know that scientists are working so hard to try to find a cure.

Can I tell my friends?

It’s important to teach your child exactly how to explain the disease to their friends, as you don’t want them to scare their friends in to thinking their loved one has it or will develop it.

Will it happen to me?

Younger children may think that the disease is contagious so it’s important to address this. For older children, prepare to answer questions regarding genetics (there has only been a few cases that genetics played a part).

Will you still be able to do everything you used to do?

It’s important to not lie about this one. Tell your child that some activities will be affected. Let them know that there will “good days and there will be days that rest will be needed.”

Are you going to die?

Any child, no matter their age, needs reassurance that everything is going to be alright. Parkinson’s is not a terminal illness and with the right medication, symptoms of the disease can be controlled.

More Tips

  • If possible, set up an appointment with a neurologist and bring your child along.
  • Choose a time to talk to them when nothing else is happening.
  • Encourage your child to ask questions if they have any concerns.
  • Try your best to keep the conversation positive and light.
  • Let your child know that there will be changes and that it’s important for the family to work together.
  • Tell them that people may stare, but it usually because there are curious (just like they are) and are not trying to be rude.
  • Search out resources such as books and movies that will help explain Parkinson’s better and keep the conversation open.
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