Children and PD
 

Hi everyone,

I need a little help from the community.

In July, I will be presenting at the NPF Young-Onset Conference on the topic of PD and children. While my head is FULL of developmental theory and knowledge in regards to children, I do not personally have any of my own. In the past, I have literally worked with 1000's of children and talked with them about a parent, sibling, friend, or other loved one who had a disabling and/or life threatening illness. (As well as talking with children who've dealt with these types of health issues personally.) But I'm missing that "personal" element of not having my own kids as a PWP.

What I'm hoping is that you'll be willing to share stories of your personal journey with PD and your children. Comments they've made, questions they've asked, answers you've given (or not given and why), struggles (and successes) you've had with both young and adult children, and stories to share.

I would keep your identity private, listing what you gave me during the presentation as, for example, "Kelly M. from Minnesota, 46, dx. 3 years, two children ages 6 & 12". Or simply as "K.M." Privacy is imperative.

If you want to post stories here for all to share in, that would be great. (Like the one Carolyn recently told about Mothers Day). But if you want to keep your responses private, you can email them to me at Todd@PDTalks.com and I will keep them confidential.

I like the way my presentation is shaping up, but the missing element is the true human touch that only you all can bring to it, so I hope you'll help me, and eventually others, with your stories.

Thank you so much!

Hey, Todd.

It will be difficult for you to address such an individualized topic not having kiddos yourself. But I probably have some stuff to help you.

A while back, I was gung-ho for writing a book about kids and PD, but I am still collelcting information. Several people sent me their stories, but I would not feel right in giving that info to someone else unless they gave me permission. But I surely could give you some general information. I just won't be able to give you personal info that might lead to the contributor's identify.

Would this be helpful? When do you need this?
Peg

Hi Peg,

Thanks for the offer. You can email me what you feel comfortable with sharing. I completely trust your judgment.

Again, I have PD but no kids, but have literally helped 100's of parents talk to their children about disease in some way, shape, or form. Combine that with my education in Child Development and theory and I'm good.

I would love to have parents with PD as part of my presentation but time restraints dictate otherwise. So, comments from them is the next best thing. Thanks!

Children and Parkinson's
 

Hi there Todd: I was going to wait until the middle of summer, after my surgery for treating my parkinsons to tell the community about my son's unique situation. I have had Parkinson's since at least 1994 but was not diagnosed until 1999. You know, treated for depression insted, etc. So I had my son in 1997 and could not believe how far into Parkinson's I was. When I left the hospital I shuffled out and was walking bent over. Hello!! Well, to make a long story short, my son has "cerebral palsy" and I can't help wonder if he doesnt have a syndrome from the Parkinson's I had while he developed during pregnancy. He is brilliant, but cannot stand or walk without two small straight canes (started on those at age 4). He has bradykinesia and intent tremor, and stiffness.
I would be happy to share any info with you. I would love to get any information regarding his condition.
Best Regards, redbird

Todd
Here are a few of the quotes that I collected about a year ago. It covers everything from young to adult children. This is good stuff. Remember that it does belong to me by permission. I plan to put it all together one day for publication. I am posting it here because I believe it can be beneficial for others - good luck on your presentation.
Peggy ;)

• *The children do not want to deal with the hard issue. So when they
  come to visit, in actuality we see very little of them.
  
  *Our daughters are 5 and 7, the eldest born a year or so after my husband's diagnosis at aged 38. They accept his limitations because it's all they'veever known. They are too young to understand the implications for the
  future. They have not yet realised yet that he is slowly getting worse
  
  *As far as telling your 10 year old . . . don't. What I mean by "don't" is don't lie, but don't go into detail - don't sound so terminal - and don't worry yourself sick(er). I like what was said earlier about comparing it to telling your child about sex - just tell the child what will satisfy the question.
  
  * Attitude – can you imagine telling a child every day from his birth “You’re going to die one day.”
  
  *I am doing the best I can to care for my husband, and his health issues consumes my life. I receive compliments from our friends about my dedication, etc. But somehow the adult children manage to find ways I could do things better. Another child is more concerned about his inheritance. And another child is simply glad that I am doing everything, because he is too busy with his life and doesn't have time to be bothered.
  
  * The girls have been especially good at making sure the children understand that Papa is "sick" but he is still "our Papa" and we have to look after him. When he is able and they are available we try to bring about as much interaction as possible.
  
  * Our daughters have also been very supportive of my role as caregiver. When things get rough, I can always count of them to listen and when possible suggest a solution.
  
  * I can't imagine what it would be like to have smaller children and face the uncertainty that PD brings. I only know that difficulties often bring families closer together. It is also important to establish good relationships with our children early on. It will be smoother if we have paid attention when they were young. The bumper sticker, "BE GOOD TO YOUR CHILDREN, THEY WILL SOMEDAY CHOOSE YOUR NURSING HOME" is not far from the truth. Kindness is learned.

Peg - Thanks. I'll see if I can work some of these comments in and I'll be sure to give credit where credit is due! It's all about karma you know...

Redbirdwillfly - You've got mail!

Everyone else, I really could use some stories, anecdotes, etc. and you all write about other topics so well on here, so I'm beggin' ya...

Anyone? Bueller? Bueller? :D

Kids, especially teenage girls ...
 

who needs them, was it only 6 months ago I wrote this :

"There are financial, relationship, practical issues to consider and PD is just one more thing to think about.

All I will say is that I have found my kids remarkably accepting of my PD. They help me when I ask, (e.g. going to the store, I hate packing the bags), and seem generally unphased. Considering they were 10 and 12 at dx, they were old enough to know what it meant but still adapted brilliantly, better than some of my adult friends.

Recently my eldest got upset when her school showed a video on PD during a Biology lesson, but that is an exception.

In my experience kids adapt."


That was me in a romantic light not really paying attention. Since then my kids have become 15 year old teenage girls, the one depressed for the last 3 months over some spotty kid who she has split up with, the other in training to be "Lady Chav".

These mid teenage years are a nightmare, (moreso with girls than boys I am told), however if nothing else the arguments and stress have distracted me from PD, (as well as made it worse). Their new coping strategy for PD is to forget I exist except for money and to act as a taxi.

Todd, I had better shut up as this probably isn't the inspirational message you were looking for :)

Neil.

Hi Todd,
I wrote an article for Parkinsons Australia a few years back and pay tribute to my three children who were very young when I was diagnosed.

Hope this doesn't sound too mushy but there attitude is still the same, here goes.

"My children now all teenagers have grown like others I know or know of to have a kindness and patience about them which never ceases to amaze me."

They still amaze me with their tolerance, empathy and help given without making a fuss to people in need.

I truly believe if anything good is to come out of growing up with a parent who has P.D. it's that.

Neil, still chuckling at your description of your fifteen yr olds!
If it helps mine have been known to cross my toes or put one of my eyebrows up and one down when I was lying down due to an off...their idea of a little light entertainment waiting for me to come on I guess!:wink:

Good luck with your talk Todd.
Cheers,
Lee

Todd,
I have one daughter who really doesn't remember Dad before PD. When she started asking questions like why does your arm and hand shake? I tried to keep it simple yet truthful. I told her that something went wrong in my brain and for now the doctors don't know how to fix it. Don't try to go into much detail unless they ask for it. Some of these little buggers are a lot smarter than we give them credit for. I sometimes think one of them will say, just do this and it will fix the problem.

GregD

Todd,

This was a long time coming, and just happened the other day. My youngest daughter, who is 22, is in college and had to write a paper on business law. She chose to write about Parkinson's. When her teacher saw her choice of subjects, she questioned how Pd could be related to business law. Daughter wrote a great paper about Parkinson's organizations and her teacher said it's the most creative idea she's seen.

You never know what they are really learning. I was so proud of her.

Paula

ok
 

Todd,

I really don't have any stories to tell. I will have been diagnosed for two years next month. I went to the neuro for carpaltunnel and came out with a pd diagnosis. What a shock.

My children were 15, 20 and 26 (I married very young, LOL!). Everyone cried when we got together that night to share the news. They knew a little about pd, because my mom was dx w/it at age 70. Everyone cried.

Thus far, the way they are handling it, is to never speak of it....everyone, including my husband is still in denial.

Sorry, no funny stories here. My oldest daughter did comment once, that together we make one brain. LOL

Mary:(

stories
 

I also thought I had Carpal Tunnel but the doctor got out his little hammer and quickly dispensed with that idea. My family seldom brings up PD. They are very helpful and supportive, though. I bring it up from time to time as my excuse for not doing certain chores. "I forgot to take out the garbage because I'm brain damaged."

All the best,


Lloyd

Thanks to all who've responded. The information you've provided is certainly helpful. If you think of anything else, you can PM me or email me at my website. Thanks so much!

Group hug! :grouphug: :D

Hi there...sorry to be so late in replying...
 

...I have two beautiful children,a daughter who has just turned 15 years of age and a son who was 12 years of age last November.I have had the disease for about 12 years so that is all of my sons life and pretty much the same for my daughter.
They really don`t know me as being any different,except for when we look back through photo`s and my daughter will remark how well I looked way back then and be surprised to see me running in a photo,or swinging her round.It is when you engage in such trips down memory lane that the difference and decline is the most noticeable.
But...I have always retained a sense of humour where my illness is concerned,because of the somewhat difficult to witness symptoms,hence right from the start I made jokes about myself.
And told the kids I was writing a book called
101 things to do with a Parkinsons Patient..[remember the book 101 uses of a dead cat?] Apologies to all you feline lovers but when it came in print I was a teenager with this lame sense of hhumour,so I saw the funny side.

Back to MY book and I engaged the children into thinking up uses for me.
Their list was endless;
A power generator; A milk shake machine; A washing machine if they threw the laundry in the tub with me; A traffic or air controller :( poor drivers and piliots] THAT WOULD BE A SIGHT TO WITNESS.
A scarecrow [animated] A ball machine for practicing returns at tennis;
A two minute painter and decorator; Edward Scissorhands when wielding my electric hedgeclippers; ...I could go on.
The point I am making is,I was conscious that they wouldn`t become afraid of my worsening symptoms but would be able to smile through the seriousness of it all.And that kept me upbeat too.
However,my daughter did go through a difficult period when I was very ill and physically unable to do much...and during this time my son started to ask questions about dying.
That is the moment I knew to sit them down and talk on a level,answering their questions rather than feeding them too much.I took the lead from them..they governed how much or how little as someone so very rightly has already said.
Neither have expressed anger or bitterness.My son is a darling.Every day he comes home from school,finds me ,kisses me and asks how my day has been.Each morning his last words are "Love you mum"
My daughter is more independant of me,and could come over as a little selfish.I believe it is her way of dealing with it.I still make her "surprise " dresses...the last one being a Renaissance costume,with a seed pearl and fine wire headdress.I love doing the things I can still do and it is important for them to see me having a go even if i mess up.
I have just discovered something in a schoolbook which my son had written
entitled THE PERSON I ADMIRE...tears flowed on reading it it was so simple and beautiful [I will private mail it]

As a teacher,just before I retired age 40,I used to get the class to grade my handwriting on the chalkboard each morning.
Hows my brain doing today I would ask and they would give me marks out of 10. It broke the ice.

I guess it is good for children to know that life isn`t always fair at dealing out the cards,but that it is what you do with your "hand" that matters.
Until I read my sons writing about me,I thought I had failed too in many areas.It seems I haven`t done as badly as I thought,and by way of encouragement,you might be surprised to find that your children learn more about life from living with your illness,and reap richer rewards,than you initially thought.

I know I have learned that.
X

Very nicely expressed Steffi. Thanks so much for sharing... :hug:

Anyone else? Anyone? Bueller? Bueller? :D