[girija]

Pegleg's suggestion "I especially would like to see lots on family relationships (for example - kids dealing with a parent with PD)."
prompted me to start a new thread..There may be several old threads on this topic, with a lot of new people here, it may be worth revisiting it.

How old were your kids at the time of your diagnosis?
Did you tell them or talk to them about PD?
What were your feelings as a parent?
How are your kids dealing with your PD?
and anything else you like to write from your experience

thanks
Girija

[Stitcher]

How old were your kids at the time of your diagnosis?

• Early 20s.

Did you tell them or talk to them about PD?

• No, they didn't want to talk about it, AND STILL DON'T...and they are now 35, 38 and 39!! As it is said, ignorance is bliss.

What were your feelings as a parent?

• Today I just worry about my son who has been VA-rated with TBI (traumatic brain injury) from multiple concussions due to artillery fire. This is my only worry as a parent. I know you are asking the question for another reason, but my son is my concern to day, the most susceptible to PD.

How are your kids dealing with your PD?

• They don't, although my 39 yrs old and my 19 yr old granddaughter got a good taste full last week!! We walk all over Philadelphia, which as they saw was not easy for me and put in a somewhat of a off state the next day due to the physical stress of the day before.

and anything else you like to write from your experience

• Talking to granchildren is a big one for some of us. My yonger granddaughter, 11yrs, was surprised to learn that someone (me, for example) could have more than one condition, "But you have Parkinson's!"

[lindylanka]

thanks for this thread, girija

How old were your kids at the time of your diagnosis?
i have two sons, they were 12 and 28 - six years ago

Did you tell them or talk to them about PD?
i told them separately. my younger son asked loads of questions, the older sort of said oh - and has not really asked or engaged with me about pd since.

What were your feelings as a parent?
i felt anxious about getting my younger son to adulthood, and guilty because already pd had made me less physical and more tired. i was fearful that i would be unable to be a 'proper' mom to them both

How are your kids dealing with your PD?
my younger son has been an amazing source of support, good humour and love, my older boy sadly is in denial, and does not really 'see' how pd affects me

and anything else you like to write from your experience
i am glad that from the outset i was open about pd - i never have had to try to do things outside of my capability, and some of the losses i have experienced kind of correlate to the dyspraxia that my younger boy has, so we have really laughed our way through a lot of the tough times, and have become very good at looking out for each other. obviously if i could do it all again i would not have pd, but i think that he and i have learned a lot and he is stronger for it. my older son is not at home, and so it has not really affected him at all, more it affects how we relate to each other.

oh, my younger one turned 18 last week, over here that means adult! and i feel that we didn't manage things too badly.......

lindy

[aftermathman]

now 18 and 16. They view life through a teenagers eyes, i.e. self absorbed with little regard for others, but weren't we all like that.

My eldest got v. upset when a biology class showed PD in an inaccurate light but on the whole they have adapted brilliantly. They know when it is important to help me load grocery or carry coffee to a table. They never dwell on PD.

In summary they are great, they know things are not great but their selfishness is the best compliment that can be given.

Neil.

[Soania]

I am new to this forum and this thread caught my attention because it was just this week that I told my children (three beautiful girls ages 10, 8 and 4) about my diagnosis. I was pregnant with my first child at the age of 27 when I was first diagnosed so for my children "Mama's shaky hands" and "Mama's medicine" are part of life and the norm. This condition has not defined me thus far, so although very empathetic children, it was never in the forefront of their family life. It's just that as we became more involved with the MJFF, they began to hear the term "Parkinson's Disease" more and were wondering what it meant.
My primary concern as a parent was not to place any stress on them. They are children first. We've raised them to be sensitive to the situation and needs of others but I didn't want them to worry about my health and future. And thankfully they aren't.
The evening that we put a label on my symptoms, my very perceptive 8 year old essentially finished the sentence for us and my 10 year old was completely surprised. My sweet 4 year old just went on playing with her toys and obviously didn't understand a thing which is exactly the way it should be. Both older girls announced that the money they give from their allowances to charity would from now on go to MJFF to "find a cure for Mama" and after hugs and kisses, we went on with our bedtime routine.
I'm sure there will be many questions in the future but for now, the experience couldn't have been better.

[Debi Brooks]

About five years ago, one of Muhammad Ali's daughters, Rasheda Ali, wrote a book for her children so help them better understand their grandfather's PD. Some folks may find it helpful.

http://www.amazon.com/Hold-Your-Hand...7178704&sr=8-1

Debi

[girija]

Soania,
Welcome to the forum. On a second thought, I am not sure I want anyone to be here! I am glad this thread caught your eye, if you are interested, there a couple more posts from me and Rose in a different thread.
My daughter was 5 when i was officially diagnosed, we have been very open about PD with her. She knows that I have PD, and sometimes I need her help. She is concerned, but not worried. She is one little kind and compassionate kid. She is most optimistic that I will get better soon, if not she says that she will find something to make me feel better. She was wondering how many more years of school before she can work in a lab!
Thats my daughter and I am proud of her!!

Thanks to you all for sharing your experiences. Thanks Debi for the book info. I have been meaning to get that book for a long time......time to go to Amazon!

Goodnight!
girija

Originally Posted by Soania

I am new to this forum and this thread caught my attention because it was just this week that I told my children (three beautiful girls ages 10, 8 and 4) about my diagnosis. I was pregnant with my first child at the age of 27 when I was first diagnosed so for my children "Mama's shaky hands" and "Mama's medicine" are part of life and the norm. This condition has not defined me thus far, so although very empathetic children, it was never in the forefront of their family life. It's just that as we became more involved with the MJFF, they began to hear the term "Parkinson's Disease" more and were wondering what it meant.
My primary concern as a parent was not to place any stress on them. They are children first. We've raised them to be sensitive to the situation and needs of others but I didn't want them to worry about my health and future. And thankfully they aren't.
The evening that we put a label on my symptoms, my very perceptive 8 year old essentially finished the sentence for us and my 10 year old was completely surprised. My sweet 4 year old just went on playing with her toys and obviously didn't understand a thing which is exactly the way it should be. Both older girls announced that the money they give from their allowances to charity would from now on go to MJFF to "find a cure for Mama" and after hugs and kisses, we went on with our bedtime routine.
I'm sure there will be many questions in the future but for now, the experience couldn't have been better.

[Conductor71]

Originally Posted by girija

My daughter was 5 when i was officially diagnosed, we have been very open about PD with her. She knows that I have PD, and sometimes I need her help. She is concerned, but not worried. She is one little kind and compassionate kid. She is most optimistic that I will get better soon, if not she says that she will find something to make me feel better. She was wondering how many more years of school before she can work in a lab!
Thats my daughter and I am proud of her!!

girija

Hi,

Thanks for starting this thread. Soania and Girija, your posts struck a chord with me. I've been diagnosed for a year, and I have a little one who is only 4 months old. I fear not so much telling him or being symptomatic around him, but I do fear seeming "weak" around him. I really fear having my meds wear off, not kick in, or worse- not work much at all at a time when I have to do things like register him at school or pick him up after soccer practice. Seriously, I go to bed at night worrying about this stuff though it's a ways down the road. I fear that he will not feel safe or that I can care for him. I know that children are incredibly resilient and compassionate, but it's for him, that he'll even have to deal with this stuff, that I feel most angry at PD.

Laura

[Soania]

Thanks Debi, I actually ordered the book yesterday on someone else's recommendation - looking forward to reading it with my girls.

Laura, I think that those of us with YOPD have gone through the same feelings that you are expressing, I know I can completely relate! Your son, like my girls, will only know you with the PD. He'll love you for you, because you are his mother, his support. Like I said, my girls don't know me any other way, my symptoms are just part of life. And I've definitely had trouble with shakiness and tremor at school and social events, initially I was self-conscious I must admit, but no longer.

I've found that you get to a point when you have to try and let go of your fear of the future and concentrate on your present. Cherish every moment you have with your newborn son. Through your strength, your son will learn perseverance. Through your challenge, he will learn empathy...concentrate on that!

[Soania]

Girja,
Thanks so much for starting this thread - it's important for those of us with similar experiences, to have a forum in which to share.
Your daughter sounds like a sweet girl - a researcher in the making!
Soania