I was diagnosed in October, and have been quite careful not to tell too many people about it. Close family a few friends and managers at work, but I have chosen not to make it common knowledge.
My question is really about people’s experiences of sharing diagnosis with their children. My little people are 8 and 6, and while my symptoms are relatively minor, there doesn’t appear to be much reason to worry them because they won’t understand there’s much wrong. Keeping the language of Parkinson’s very simple will of course be necessary, but I wondered how people have gone about making the choice to inform young children, and when?
Any thoughts of course welcome…
All the best,
There are some excellent books for young children on the Parkinson’s UK website https://www.parkinsons.org.uk/information-and-support/childrens-books
The important thing is to answer children’s questions honestly in language they can understand when they start to notice things. Our 6- year-old grandson, who has spent a lot of time with us from the time he was born, has been very matter of fact about his grandad’s difficulties and knows he has poor balance. He warned him recently to be careful outside as it was a bit slippery now the temperature had dropped. Our grandson was nearly 3 and staying with us when my husband had his first fall and hip fracture.
If your symptoms are not obvious I would take it very slowly, as and when they appear, is time enough just IMO. It’s only been a couple of months. As has been said, there are some PUK publications on dealing with telling youngsters,( don’t remember if they were available over 20 years ago?). We did not tell our twin daughters, aged 12 at the time, as we both needed time to adjust to the diagnosis first. I think we told them about 5 months later when symptoms were still not evident, just a shake in a little finger, but that they were prepared for a few more tremors, etc. in the future. Small steps would be my advice. It’s amazing how children cope. You have many years yet, when they are older to go into more detail with them. Take time to adjust to your diagnosis first before jumping in to tell them, would be my advice. Ultimately it’s your decision.
All the very best
My kids 10 & 14 (at the time) managed very well. I did approach the topic in a clear and simple way…as if anything about Parkinson’s is simple but hey . It did hit the eldest a little harder but mainly because her teacher who she confided in told her I was going to end up not knowing who she was, which really shook her up as you can imagine. I liaised with the younger one’s school after that any support which was required was appropriate with a little education on what Parkinson’s actually is. Kids really are brilliant at this sort of thing. I had an incident where a shop keeper thought I was drunk but just a parky day and a teen stepped in to defend me, explaining my condition. Wishing you lots of luck xx
Thanks all for your thoughtful responses.
My instinct is to take things slowly and explain as and when it becomes necessary.
All the very best, and enjoy a happy Christmas.
Mine were a bit older and we decided to keep it simple too. But I agree it’s what they find out without you knowing- reactions of others, internet which can be troublesome. My eldest did far too much internet research and got very upset. We try and keep life as normal as possible without pretending the disease is not there and refer to it when relevant. E.g. my middle child is incredibly impatient. I’m trying to teach him to be more patient with his father and I explain that dad just needs longer now to get ready to go out with him because of the PD. I’m hoping that by not hiding it but not being alarmist either we’ll create an environment where, when we need to it’s easier to talk about more difficult aspects, if and when they arise.