When did you tell your adult children?

[Jebbie12]

When I was diagnosed with Parkinson's 16 years ago, I decided to be upfront about it with my grown kids, family and coworkers. I never regretted that decision. 15 years later (a year and a half ago) my husband was diagnosed too! He doesn't want to tell our grown children until it becomes too obvious not to. He is afraid they will fear they are so high risk that they will worry all the time. I'm afraid they will be furious that we kept this important health issue a secret so long. Has anyone been faced with having told their kids much later, and regretted that decision to wait, or were glad their kids had a little more time unburdened? I feel we are overdue in telling them, but appreciate hearing any insight others may have.

[Jebbie12]

I want to add that for 16 years, I am doing remarkably well!

[Bolt_Upright]

This may be an odd angle, but if you and your husband both have PD it seems to me that makes it less likely that the cause is genetic. If the cause is some environmental exposure that you and your husband shared (who knows what it could be), it might mean that your kids are at even less risk of developing PD than if only one parent had PD.

This might actually be reassuring information to them.

I could be way wrong. People should feel welcome to correct me.

[Jebbie12 in reply to Bolt_Upright]

that is something we never considered. thank you!

[LAJ12345 in reply to Bolt_Upright]

And it might mean it’s your diet or something in your house that you are using. In which case if your kids live there they might be exposed.

[sunflower_79]

I have PD for 6 years and my kids don't know. I just can't tell them. I don't know will they be angry later or not, I just don't want they worry about me.

[Jebbie12 in reply to sunflower_79]

that's what my husband thinks, but I like to be open and honest and want to treat them like the adults that they are.

[sunflower_79 in reply to Jebbie12]

I understand, but your husband thinks different and he has right to make his own decisions.

[7springshollow]

That was definitely the worst part. I had to tell. Everyone could see there was an issue. They need to know in part because there are new tests and treatments coming out all the time but I agree with the member above that it doesn't sound genetic.

[1LittleWillow]

Have you both had genetic testing done? If neither of you carries any genes for PD, then your PD is likely the result of some external factor(s) such as exposure to environmental toxins hopkinsmedicine.org/health/...

It might be helpful for your kids to know so that they can be careful and proactive (e.g. implementing a better diet, exercise, supplements, detox, etc).

[Jebbie12 in reply to 1LittleWillow]

We were both genetically tested. I came up with no genetic issues. but my husband was inconclusive.

[Rather]

Respect your husband's decision for the time being . He is still adjusting to this new diagnosis. So consider his feelings before the children's. Eventually, he will come around and be able. to share the news, or they'll start to notice his symptoms and he will have to fess up. Don't add to his stress. Leave it to be for now. God be with you both.

[sunflower_79 in reply to Rather]

This is a great answer! 👍

[Racerk]

I have the same delimma here, am yopd only 48 years old DX 1.5 yrs ago. With my obvious gait issue, idk when to tell my teenage kids the bad news, don't know how they going to react to it.

[sunflower_79 in reply to Racerk]

My kids sometimes notice tremor, last time I had discusion with my doughter about school and learning. She said: Mum, I know you are angry now. Me: No, not at all. She: Yes you are. Your hands shaking 😑😁

[Racerk in reply to sunflower_79]

Kid are so honest and straight forward!

[Hope-full1970]

My husband has cancer CLL and I have PD. We have 3 young adult children we share everything with. They help us, love us and pray for us. Who knows what they will face in life, maybe even something harder.When your kids see you facing things with courage, it's building thier character and courage for thier future struggles.

I'm impressed your doing so well after so many years. That's really encouraging to me since I'm just starting out. What is your best advice? What kind of exercise do you do?

[Jebbie12 in reply to Hope-full1970]

I teach yoga once a week, and I do. yoga on my own 2-3 days. I do a stationary bike 2-3 days a week in winter, an outdoor bike in the warmer months. I do free weights when I can and I try to walk a mile every day . Good luck in your journey! Stay active socially too!

[Hope-full1970 in reply to Jebbie12]

Wow, good for you!! That's great advice 👍I exercise quite a bit and I'm working on staying social.

I was thinking about your kids. My husband in my experience processes things differently than me. I bet if he has a little more time to process it, your kids will know at the right time.

[Hope-full1970 in reply to Jebbie12]

Do you have any special diet that you follow?

[Jebbie12 in reply to Hope-full1970]

most days, a mediterranean diet. not strictly followed. avoid dairy. lots of organic fruits and veggies. no canned food. and lots of dark chocolate, my one vice!

[Hope-full1970 in reply to Jebbie12]

This sounds like a plan l can follow! I don't eat dairy and I love chocolate!!!I eat well most of the time but I have room for improvement. Thanks for your advice!

[SAGoodman]

I had PD symptoms since 2018, officially diagnosed 2020. After official diagnosis I sat down with my teenage children and told them just what they needed to hear, the facts, no what ifs- nothing else.My parents, brothers, close friends and peeps here on HU are my support group who I share victories and struggles. I do not go into details with my boys, outside of just saying I had a rough day. Although if they want to know more specifically I'll discuss.

I have avoided telling my employer until I'm officially required to, which is when I feel I can't perform my duties to satisfaction.

Right or wrong, no idea, just how I've been doing/living with it!

[Gymsack]

I have observed that what is commonly known as the five stages of loss often applies to people who have just been diagnosed with PD.

The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with our lose. The loss could be ones spouce or ones own dreams and plans and picture of the years ahead. I suggest that you let him progress through the stages at his own pace unless he appears to be stuck.

Conversation is very important and altho he may sound slightly irrational , talking will help him come to gripes with reality and when he has accepted it fully (accepted that he has it ) then he will be able to tell others. Now is the time to have many conversation with him but mostly listen , he will hear himself.

Good Luck