Have you had to tell children or grandchildren that you have Parkinson’s?

Get involved News, events and taking part
1

Hello everyone,

It’s me again! :blush:

Have you had to tell children or grandchildren that you have Parkinson’s?

If you have children or grandchildren, how did you to talk to them about your
Parkinson’s after you were diagnosed? Maybe you worried about how to start the conversation or how they would react.

Perhaps you have thought it’s easier not to tell them at all. We are putting together an article for our online magazine about talking to children and grandchildren about Parkinson’s and would really like to feature your own tips and experiences that we could share with others who find themselves in a similar position.

We’d love to hear about your experiences so please comment on the thread below. :point_down:

2

Hi there not been on here for a long time. As I have been ill for some time…and now all I’m doing is falling all over the place. Apologies I digress. I have 2 grand children ages 7 and 4.it
was
Actually a couple of years ago that I spoke with my oldest granddaughter I showed her a book called my gran has parkinsons she loved the story and after I had read it to her she said to me I know that you are my gran and that you have parkinsons and I Iove you just the same…I will now need to pull it out again to read to my
Youngest grand daughter. It is a lovely short story with colourful pictures.
Regards. Babs x x x

3

Hi reah I don’t know where to ask this question. I have change my email address. deleted by admin

Do I register as a newbie. Maybe you could advise me please.

Thank you Babs W

4

Hi @babswood,

I have changed your email address on our system and have sent you an email to confirm the changes made to your account. I’ve also removed your email address from your post above to for data protection purposes. :slightly_smiling_face:

Best wishes,
Reah

5

Thank you for your help

Babs

6

Reah unfortunately I did not receive your email my email address’s is removed by admin

7

Hi @babswood ,

I have resent the confirmation email address to the new email address. Please let me know if you have received it.

Best wishes,
Reah

8

No I did not get it I checked again and the email is actually

So sorry for all of this.

9

Hello Babs, I’m moderating the forum this evening. I have removed your email just for data protection, and I’ll look into getting you a new password set. It might be that I’ll need Reah’s help with this on Monday, but we’ll do our best to get you sorted. best, Lucy - moderation team.

1 Like
10

Thanks so much

11

Hi I’m not sure if this is of any use but have you checked your spam box? Sometimes if an email address isn’t recognised it can be put in there.

12

Hi @babswood,

So sorry you’re still having issues with this. Nufcash is right, have you tried checking your spam folder?

Please let me know.

Best wishes,
Reah

13

When I was fifteen, my grandma was diagnosed with Parkinson’s disease. She told me straight that there was no cure, and I was traumatized.

14

From the young onset point of view, telling your PARENTS is quite difficult too :crazy_face:

15

My children were adult when I was diagnosed and so I just told them. I now have a big problem with grandchildren because my daughter in law doesn;t want them to know. It would be frightening, upsetting etc But the eldest is now 13 and I feel he has no knowledge and so no understanding of my behaviour (I am 12 years on from diagnosis now). I feel I am the family’s dirty, shameful secret, and gradually I am withdrawing from contact. I am invited, but if I make an excuse not to go, everyone is relieved.

16

I told my daughter when I was first diagnosed and she was 12 and there have been no issues. In my view, better to get it out in the open rather than them find out by accident and start looking things up on the internet….

I agree with the point about telling parents though - that was harder to do.

17

I have six Grandchildren, the two youngest are 5 and 7 and my Parkinsons impacts on them the most .
So I wrote a little story, added some clipart and printed it out. And read it too them, and they loved it.
I found it best to reassure them and inform them simply first. As things progress the stories become more informative . I am happy to share with anyone
Esme

18

Wish we had done that. We decided not to tell our daughter who was 10 at the time. We tried to keep everything out of ear shot but you can’t. overtime she caught snippets and she began looking things up. Thankfully she told her friend who mentioned to her teacher. They got in touch explained what had happened. We had a meeting at school and broke our hearts. Through tears explained what was happening with condititon and how It have an effect on me but I can still do things albeit slower.
I suggest alawys tell your kids as you can intially control what they know initially and they know can approach you with any questions.

19

Hello, I think we have to be careful telling young children about our condition and only tell them what we think they understand and if they ask questions be wise but open about it the best we can.

1 Like
20

My Grandchildren range from 22 down to 6yrs. I’m very open with the older ones but the two littlies 6 and 8 I made a little booklet for called Why does grandma’s hand shake.
gently touches on my visible symptoms , and reassures them I maybe be slower but still love them the same.
If you want a copy am glad to share …
Esme