PD and the Children

[Fredzu]

Young children are effected when PD infiltrates the Family.

Have you noticed how the relationship has changed?

How would you like this time to be looked upon when the children look back?

FJohnt1

[Astra7]

I haven't told mine. They will google all the worst cases and worry. They must be wondering why I'm suddenly taking so many supplements!

[stevie3 in reply to Astra7]

I told mine after 18 months. They were remarkably unfazed. My daughter was 16 so at the stage where it's all about her anyway! The one person I can't tell is my mum (86) who I help look after - she'd have a meltdown. She just thinks I've got a dodgy back.

[Astra7 in reply to stevie3]

My oldest son is 16 but a real worrier. I also haven't told my 86 year old mum!

[stevie3 in reply to Astra7]

My son is a neurotic 22 year old. He asked: will you die (not of this, no) and then googled 'is PD hereditary'?. Neither have refered to it since! I thought they'd be distraught....silly me....

[JohnPepper]

Hi Fjohn. Children and adults get embarrassed by the sight of Pd symptoms, like tremors. They need to have Pd explained to them. They need to know that you were a normal person before we contracted Pd, and we are still a normal person, but with this problem. We need their understanding, not their condemnation.

[macdavid in reply to JohnPepper]

Well said................absolutely spot on. It's best to tell it like it is.

[JohnPepper in reply to macdavid]

Hi macdavid. If you do tell your children about Pd, won't you tell us how they react to that please?

[macdavid in reply to JohnPepper]

I am obviously biased, but I have three of the finest children a parent could want. When I was diagnosed in 03 they were adults all in their mid to late 20s. I'm not one to beat around the bush. I told them I had PD and my prognosis. Once they realized I wasn't going to die in the next fifteen minutes, silent sighs of relief filled the room. Next month marks 20 years since onset and I'm still here, driving, walking, and living....all in large part due to the love and support my children provide.

[JohnPepper in reply to macdavid]

Wonderful! You have done a good job an are reaping the rewards.

[mistergadget]

I have two grand children, both girls,the one of( 8 years) grew up with grand dad's pd symptoms and she shows a lot of compassion and love towards me,the little one (2 years)

whom I don't see so quite often is a little bit, should I say apprehensive of me.I have learn t not to move ( or waddle/shuffle ) towards her, it simply startles her.I have now learn t to let her rather come to me when she needs to-luckily she does not reject me altogether!

[sparkyparky]

I agree with the last 2 comments. I was diagnosed in 2012, the year my grandson was born. Other PwPs told me they wanted to talk about their PD with their grandchildren, but their own children didn't want them to. So the children sensed something was wrong, but no-one was talking about it. "Conspiracy of silence" and it's very damaging. So I wrote some books for families to share with little ones - open up this can of worms, air it, don't fear it. We are "normal" and in the early stages, able to do all the things we could before. Ignoring it wasn't an option for me. See dawnmay.com These 5 stories might help.

[stevie3]

They look great.

[vivalavida]

My husband was trying to hide his PD from everyone. I think that was a huge burden to carry and also difficult for me. He finally decided to tell our 13 year old (happy go lucky) son while we were on vacation. He took it in stride asked a few questions and has not really mentioned it since. My 17 year old son is far more intense and prone to anxiety. He cried when my husband told him. What I found interesting is my older son who is teenager self centered became far more caring toward his dad and wanting to help with things. When I would be out with him he would ask a lot of questions. Children are intuitive, I'm sure they had sensed something was different. I found after opening up about his PD my husband seemed to also accept his diagnosis and move on to managing it with a more positive attitude. He realized how much energy and worry was going in to hiding his PD.

[_Eureka]

We told our kids right away. It would have been near to impossible for us not to tell them, and I'm sure keeping it secret from them would have added a lot of stress to our family life.

They were 11, 9, and almost 2 at the time, so we really only told the two older kids. The little one was to young to understand anything. I've started giving him little child-size bits of information lately. He is pretty unimpressed His bigger brother and sister took it very well, too. Symptoms were barely visible at that time. 3-4 weeks after telling them our middle son's teacher called to say that he seemed to be upset about something, but we talked and it got better soon after the call.

Currently, the symptoms are still only slightly visible most of the time, and me having PD is very normal for them, something that doesn't really impact their lives a lot.

[TheGimba]

My husband has PD and we have an eleven year old daughter. His cognition and sleep disorder was so profound in the beginning that I had to tell her everything for safety reasons. It was worse when he didn't have a diagnosis because I couldn't tell her much and my stress level was through the roof. She doesn't have much empathy, most children don't, she's just fed up with Dad not being able to do the things that he used to do. They were very close. He is doing much better on current meds, cognitive is so much better but physical symptoms are starting to show more...super stiff.

[Enidah]

My grandson is 6 years old now. He asked me maybe a year ago about why I was shaking and I just matter-of-factly told him the basics of PD. No big deal. Once in awhile it comes up and we talk about it for about 30 seconds and then it's on to something else.

[GrandmaM]

My father-in-law got Parkinson's in his early 40s when his children were in elementary school. Of course there were problems but some good effects as well. My husband became very adept at helping his mom with household maintenance , etc. and both children became more empathetic toward the disabled.