Wanting to have more insight..

[waikato]

My dad was diagnosed 18 years ago with Parkinson disease at the age of 48. I accepted the diagnoses because I could see there was something changed in his behaviour but it didn't affect our family daily routines or outings (stage1).

In 2003 immigrated to NZ with partner from the Netherlands (Stage 2). We spend our Christmas holiday in the Netherlands this year after 6 years not seeing my family, and to be honest I was taken back a long shot when I reunited with my dad. He has now stage 3 going into 4, all my conversations on the phone with them in the past years didn't prepare me to see him like this. Now back in New Zealand I read articles, books and looked on the net for more information on Parkinson's and how it develops to be more informed in my mind how my dad is and how his road ahead will be. Reading the blogs on this site will give me more insight in the day to day life with Parkinson's, achievements, down falls and progress made by members.

My parents have asked me to discuss Parkinson's disease with our 3 children (aged 9 /6/4) in the future so they can start to understand why granddad wasn't able to do certain things during our stay. Does anyone have any suggestions or advise how to do this?

[JimN]

Be honest and try to keep explanation age appropriate.

[Pollyana in reply to JimN]

Ann Andrews, Auckland author of Positively Parkinson's has written another book for children, Grandma's brain, due to be published early 2015.

Another book of delightful cartoons and text by Anne Atkin, an Australian woman who has Parkinsons, is called Living and laughing with Parkinson's. She was formerly a teacher of young children and her explanations of the various symptons and the cartoons are succinct. It was published in 2011 by Memoirs Foundation Publishers. You might be able to get it from the library.

[waikato in reply to JimN]

Cheers

[waikato in reply to waikato]

Thanks for you reply and I will have a look for these books. Cheers

[Omas]

Hello, firstly good on you for wanting to understand this disease.

When I was first diagnosed my grandchildren were of similar ages and we explained to them that Oma had a disease which made her shake a little and a bit slow to do things, this was enough to start with. They took delight on watching to see when Oma was "shaking" As time has gone on we explain any changes and if I need any help. The children cope and understand beautifully, in fact better than adults. So don't worry about the children - be honest, don't give them too much information at once, give them something they can do to help eg. write letters, pictures to their grand dad. Always remember this is a disease which has a different path for everyone.

best of luck,

[hagan]

My advice would be to just be honest and explain to the children as best you can what you know about Parkinsons. He is still their much loved Grand dad and would love to do all the things with them that he used to do, but now he is needing a lot of help. Maybe the children can think of ways that they can help Granddad next time he is with you.