Are there any online groups for teenagers who have a parent with ALS?

[jfaidley]

Hi, all.

My husband was diagnosed with ALS last July. Actually, that depends on who you ask -- two ALS/MND specialists diagnosed ALS without question, but husband chose to go with the current neuro who is doing a trial of treatment for MMN. His disease was progressing very slowly, relatively speaking, but has suddenly picked up the pace, despite the IVIG, which started in March. All that to say that I believe he has ALS, but he is (obviously) holding on to the hope that this is not true. Just background...

We have two kids, ages 18 (son) and 13 (daughter), who are struggling to cope with their dad's declining function. Our daughter is of particular concern to me: she's in the typical teenage phase of not wanting to talk about or deal with anything directly, so does not respond well to my attempts to offer support or even information. But I can see that she's both terrified of the changes that we all see happening before us, and mortified (in a teenage way) that her dad walks funny and has to sit down to rest a lot, thus calling attention to our family in public places. So I was wondering if there are any online groups for teens who are facing this? Thought I could at least make the suggestion, and maybe she would feel comfortable checking it out so that she does not feel so alone.

Thanks for any input! May be awhile till I check back as I am completely overwhelmed with all of this. But am very glad this exists!

 

[MaxEidswick]

>So I was wondering if there are any online groups for teens who are facing this?

Nikki, an idea for a group here ...

 

[Nikki J]

I don't think this forum is a good venue as it is not private. Face book would be better as it could be closed or even secret. But as to existing groups I have not found one. There is the young faces of ALS but that is not appropriate as it is geared towards young PALS and also FALS both of which would be both irrelevant and frightening to op's children

I hope someone does know a good resource. My niece is in individual counseling she was 9 when her mom was diagnosed

 

[Green Queen]

My kids are part of a face to face program for Young Carers. They love it because as you say, they are not alone.

I'm with you...my daughter is 13. She is just awesome but hates bumping into people we know when I'm on my travelscoot, she gets very embarrassed! I don't mind, I was 13 once...

Hope you find some help.

God bless, Janelle x

 

[jfaidley]

Thank you for all of the input. I'll keep my eyes and ears open. And very good perspective, Janelle -- I know it's normal (cause I also remember being 13, too, and I know that phase was no picnic for my parents). So trying hard to be patient...

 

[gooseberry]

My 13 yr old son has seen a private counselor for a year. We have searched far and wide and can find nothing.

 

[CGARS]

my son (19) and daughter (12) have been dealing with my awesomeness for more more than 4 years!
there is a Facebook group for kals (kids of pals) and their pals parents.
If your kids aren't on FB, PM me, and maybe we can find a way to get the kids talking
We included our kids since day one, and glad we did.
they are handling this about as well as anyone can.
my belief and hope is ALS will be treatable soon.
Cheers,
Casey

 

[Nikki J]

Is the group secret? If not could you share the group name? I did not find anything under KALS when I searched just now. Thank you

 

[CGARS]

Is the group secret? If not could you share the group name? I did not find anything under KALS when I searched just now. Thank you

It's so secret, I can't find it!
I checked on the pals FB page that started the group, and he isn't a member of any group!
He must have shut it down.
I think it's a good idea for kids of pals and other young people that are affected by ALS,whether it's an uncle, grandparent, ect. to have a place to talk.
im going to check with my kids and others to see what they think.

 

[Nikki J]

If you are not a member of a secret group I do not think you will see it listed as a group on someone's page so maybe it still exists? Is the PALS in question still around to ask?
Thanks again

 

[CGARS]

no recent activity on their account.
i know i was a member of that group about 3 years ago, but i took a break from FB for about a year. lol
i will send him a PM to see if he answers.
either way, i will check with some kals & pals to see about interest.
it'll give me something to do!
just yesterday i said i was bored.

 

[Green Queen]

Casey, never ever ever ever EVER use the B word.....

J xx

 

[MaxEidswick]

>If you are not a member of a secret group I do not think you will see it listed as a group on someone's page so maybe it still exists

i was kicked off it after two posts -- no explanation ... maybe i don't really have ALS

 

[nebrhahe53]

Especially the 5 letter B word, and to a woman yet! My 19 year old went to a group called Wonders and Worries, especially set up for kids with parents that are terminal. This is in the Austin area only, but there must be other organizations, especially in NY.
You find most of these programs are run by or affiliated with tha American Cancer Society because thats what most people get.
No one gets ALS right?
They do serve other terminal illnesses though, at least wonders and worries does.
I googled and got the # below-perhaps they can help you find a group in your area, or call Wonders and Worries. They may be able to help.

Kids Konnected
Toll-free number: 1-800-899-2866 (If you get voicemail, leave a message to get a call back)
Web site: Kids Konnected - Home

For children and teens who have a parent with cancer as well as for those who have lost a parent to cancer

Good luck.

 

[nebrhahe53]

Grrr. sent to moderator.