Need Help w/this one-message board for teens with ALS parent

[Roni]

Thought you guys could give me some ideas about a message board for teen kids of us pALS. Need one for us too. But, it's been challenging for my 14 year old twin girls (have a 10 year old son too). I do go to a support group (helps alot) have talked to them but, not alot of people have teen kids. My girls would just love to be able to talk with others who are going through the samething. These girls have been angels helping me. We did get help coming in the house over the summer cause it was to much to put on them. If any thoughts let me know. Plus, I do what to keep them out of are posting don't want to add to much on them all at once. ]

Thank you for any thoughts,
Roni
mom of 3
pals 3 years

 

[brendapals]

Roni,
Bless your heart. My thoughts and prayers are with you. I'm not a lot of help when it comes to a message board idea for our teenagers. But I hope it helps to know you're not alone in this!
My boys are 18, 15 and 7. I was diagnosed in June 08. They are doing pretty good, and most of their friends have adjusted to my very sLLLLLLLLLLLLLOOOOOOOOOOOOWWWWWWWWWW
speech! I'm sure someone will get on here with some good ideas though.

Welcome to the forum, I'm sorry you had to come here, but I'm glad you found us. You will find lots of support, answered questions, and friendship on here. It's the best bunch of folks around!

Never give up,
Never let up,
Never lose faith,
brenda

 

[BethU]

Roni, have you thought about starting up an e-mail-type support forum for your kids?

I THINK Yahoo sets these groups up for free. You can check it out at http://groups.yahoo.com/

Instead of posting to a public forum, your kids can exchange e-mails with others who are registered members of the group. That way, you can control who is reading their comments and can keep out people you don't want "listening in." Just a thought.

Blessings.

 

[Roni]

Thank you

I didn't even think of the group idea, excellent idea! Thank you! Going to do that one today. Will get back with you's.

Thanks,
Roni

 

[hopingforcure]

I have a 13 year old and could use a support group for him.

 

[DeeMichelle]

Just one to say this is such a brilliant idea. Good luck.
x

 

[Roni]

Hello again,

I started a yahoo group (message board) for the teens. I also put, in for a chat room with a time, with MDA/ALS. Just waiting to here.



Here is the address for the group, just need to sign up. Both my 14 year girls are after school.
http://health.groups.yahoo.com/group/teens-who-have-parents-with-ALS/

Keep you posted.

Roni:razz:

 

[SMillheiser]

dedicated teen message board

Roni,

If you are interested, perhaps I can dedicate a section of my website for such a message board. Please go to ALSGuardianAngels.com and let me know if I can help.

Stu
Office 949-488-9894
Cell 949-233-3045

 

[Al]

The ALS Society of Canada has a new website for teens/ young adults. It has information and stories from others living with parents that have ALS. It has a link to Facebook for a group set up for Teens/young adults to talk.
http://www.als411.ca/

 

[trying to stay positive]

Al, I just was looking at the site. Very well put together. Thanks for the link. Will definitely show it to my daughter.

 

[Roni]

AL, thank you I had know idea that site was there. Looks good!

Thank you for info,
Roni

 

[DeeMichelle]

Al that is so cool. Excellent.
D