new and comp illiterate

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Distinguished member
Apr 7, 2008
:)Hi I'm not really all that good at this so please understand. My husband was diagnosed with ALS in dec '06. We have gone through alot of changes. He is now in wheelchair most all of the time. We have three kids "J" He's 10 years old, "L" she's 9years old and has CP, "D" he's 7 years old. We are having a diffecult time with the adjusting with"J". Any advise would be welcome. Thank You.
Hi Cris -

Really sorry you are going through this. Many of the PALS on this board have young children - I hope they chime in with advice and support for you.

Do you have the support of an ALSA chapter or MDA? In Chicago the Les Turner ALS Foundation has a social worker who makes home visits and is especially devoted to working with families with young children. I was wondering if you have a resource like that.

I cannot even begin to understand how you are coping with a child with CP, and also with your husband's ALS.

Do you have a male uncle or cousin who can take your son to activities or spend a little guy time together? I know that is a simplistic solution - but it might take a little pressure off you.

At any rate - please keep coming bak to this site - the people are wonderful here.

As for me - I have so little to offer but my best wishes because I don not have children. But I will be thinking about you! Beth
I share your pain. ALS is crap (I want to use a different word).
Our kids are now 11 and 9 and my wife is now very progressed.
That said, you know your kids, their likes/dislikes, whether their big communicators or shy/reserved.
I can only tell you what we did, not what you should do.
We started with investigating info on the web, getting pamplets and things from our MND association, we also considered getting a physcologist involved.
The kids can see whats going on, once we started with nursing care coming in to the home we recognised that we couldn't hold off being full and frank with them.
We set a date, on a friday and kept the kids home from school so that we all had time to deal with any consequences.
To be brief, we basically asked them what they thought was happening, what they wanted to know.
We then explained MND in simple terms and that mum would not be getting better.
We answered (and continue to answer) their questions honestly (but without too much gory detail).
We re-iterated that although mums muscles are weak, it doesn't mean her mind is.
We focused upon the positive, the things mum can do, the fun stuff, the love stuff.
We all had a good cry and then we had some fun.
We continue to focus upon the things we can do, and don't worry about what we can't.
I wish you all the best.
Hi, Barkingdog we have explained to "J" what it going on in simple terms. He is also seeing a counselor. Sometimes I feel that the weight of the world is sitting on my shoulders and I'm not big enough to hold it up. My husband is going through all the steps of decline, including the anger and depression. there does'n seem to be much that we as a family can do for him. We see a doc in the Peoria MDA clinic every couple of months. Otherwise we just try to take everything at face value. Thank you for your reply. (I hope i did thai right.)
Hi Beth, thank you for repling. we are seeing a doc with the MDA clinic in Peoria. We went up to Rochester,MN in Dec '06. They gave us a final diagnosis. Not a wonderful time. "J" is seeing a councelor, it seems to help at turns. Having a daughter with CP is just another thing that you learn to live with. She is actually quite functional. I think one of the biggest adjustments that we went through when we started this path is that I went to work. I had been a stay-at-home mom for 10 years, now I work in a warehouse on third shift. so I'm not always there for the kids like I used to be. The kids all had to get used to that. Have you and yours had alot of adjustment issues?
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