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jodierrn

Member
Joined
May 15, 2013
Messages
13
Reason
PALS
Diagnosis
05/2013
Country
US
State
california
City
westminster
Hello, I'm a new member. Diagnosed a few weeks ago. I have four children,15, 13,and twins 9
My question is how much and when to tell the twins. I was active until Dec running and taking spin classes 4 to 5 times a week. I currently have right foot drop and weakness
Left hand with atrophy. No longer working as a ER nurse. My work has been turned upside down.would appreciate any advice.
 
I am so sorry. My niece was 9 when my sister was diagnosed last year. She told her she had a disease called ALS and it was not going to get better. My niece asked if she was going to die and my sister replied we are all going to die but yes ALS would probably be what would kill her but not today or tomorrow and that she would do all she could to stay as well as possible. It is hard to know what is best. I do think it is good to keep the children informed and updated. With older siblings things may play out differently as well.
Take care
Nikki
 
My dad was diagnosed in feburary he is only 57. I have two little boys 8 &11 who he sees everyday. There are books you can buy to explain to your kids. They actually have different age levels. We read them together and then they actually took them and read by themselves. I spoke with the Dr. when my children were diagnosed about telling them since he played such an active roll in their lives. He told me the best thing to do was be honest.
 
I was diagnosed in Jan, I have a 7 and 3 year old. We haven't told them yet specifically about ALS, the 3 year old wouldn't comprehend it yet anyways. For now, at prayer time before bed, we just pray that God will heal daddy and his ailments (we say my right arm as that is the most visible issue for me right now)

As I appear to have a slow progression, will probably address it later this year...
 
"Mommy's feet and hand are sick." That should do it for the kids.
Eventually: "Mom can't use her legs anymore. They're sick."
Finally, "Eventually mom will need us to do everything for her, just like we did everything for you when you were a baby."
Death doesn't have to enter the conversation unless the children ask.
When they ask, they've already thought about it enough to be ready for it.

I found it was best to give every kid a job to keep them busy helping mom.
 
My children are 15 year old twins (boy/girl) and a 9 year old boy. I was so worried as what to tell them when their grandfather was diagnosed last May. We don't go into great detail but they do know that grandpa at this time has an incureable disease. Then the 9 year especailly prays everynight that God, will help us deal with everything. Then we concentrate on enjoying the quality of the time we have left together and not the quantity. I would just kind of go with the flow on what to tell them as you progress. I truly believe they are going to come up with a major breakthrough in curing this horendous disease. God bless you in the meantime. You are in my thoughts and prayers. Kim
 
It's so sad - ALS robbing young families. Makes it even crappier than it already is.

I would urge parents of young children to buy " The stars that shine" by Jodi O'Donnell Ames.
It is available on Amazon - check it out.

In addition to authoring ALS related children's books, Jodi has established a camp for children affected by ALS. You can find her on face book. She is extraordinarily dedicated and selfless when it comes to kids and ALS.

I believe the ALS society, here in Canada, has resource material for parents. Last I checked, one can download the information from their web site.


Wishing good courage for all of us.
 
keep everything age appropriate--your older ones will be computer searching the name and symptoms and could get very scared if you don't tell them everything. I think it is hardest with the youngest ones though--9 is just a baby. I also remember a poster here who was a teen who had found paperwork in her dad's desk about his als--she didn't know he had it until then and did a search and got scared to death--knowing and not being able to share that with her parents was eating her up.

my kids were 16, 14, 11 and 10 when my husband got sick. we kept the real diagnosis from them (and everyone else) for a year but we had that luxury as he was slow progressing. but they knew he was very sick and they were scared. I wish we had told them more earlier.
 
Thanks for the advice, this exactly what we told our 15 year old. He had just had his biology test regarding neuromuscular function. My 13 yr old is severely disabled. Has lissencephaly, his brain did not develop correctly. So we have had a double whammy with neuro issues in the family. The 9 year olds are the challenge as how much to say.
 
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