Telling children/grandchildren

• Keep it simple, honest and positive

• Use simple terms. Simplify the explanation of your diagnosis to their maturity level. Use words they will understand. Too much information and technical terms can be overwhelming and frightening. 

• Their reaction will often be a reflection of your attitude. Be honest, calm and positive; be aware they may cry, become overwhelmed, angry and frightened.

• Assure them this is not their fault.

• Explain what changes they should expect to see in you.

• If you have more than one child, talk with them one at a time but on the same day.

• Be prepared to answer questions:

  • Is PD fatal?

  • Is PD contagious?

  • Will they get PD?

  • Does it hurt?

• Encourage your child to ask questions.

• Teach your child how to explain the disease to others who may ask.

• If you see signs that your child is struggling, ask their doctor to recommend a therapist who specializes in helping children whose parents live with a disease.
   

Telling my family, friends and partner

• Focus on sharing your diagnosis to be as positive a discussion as possible. Deciding when and how to break the news can be a source of great stress. The decision to tell others is yours alone, but as symptoms worsen and become more obvious it is better to share with them your diagnosis and incorporate them into your support team, rather than them arriving at their own inaccurate conclusions.

• Choose a time where there are no distractions when nothing else is scheduled. Timing and preparation can minimize the impact on everyone involved. Think through what message you want to share. 

• Keep the conversation positive. Your family, friends and partner will feed off your energy. Do not get overwhelmed if they are not emotionally prepared to deal with the information. Allow them room for a temporary “time to accept”- give them space to mentally and emotionally adjust. 

• Anticipate and invite questions.

• Share developing a plan for your future.

• Ask questions and educate yourselves together 

• Keep talking

• Give them some time to get used to the news