Old 01-11-2008, 03:03 PM #16 (permalink)
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DUke- great plan, and one drawn up by a loving father and husband. The only thing I would add to it is to seek some help for the care of your wife. Maybe her ALS clinic can point you in the right direction. I am betting she qualifies for in-home help. All my best, Cindy
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Old 01-15-2008, 07:55 PM #17 (permalink)
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Hey duke, gina and swmn,

wow, I can really relate to all you said. I dont want you to think my kids are ignorant--they know dad is really really sick. they were there when dad first got sick and had to go to the hospital, they have seen him decline and go from walking to "scooting", they have helped me pick him up off the floor many times. they know this is way more serious than we let on. they dont ask questions though, and I think that is becasue they know intheir hearts he isnt getting better and they dont want to hear it for fact.

If they ask me point blank what will I do? I havent decided, and I should because that could happen anytime.

We are actually going to an ALS specialist next week, I am hoping for compassion and maybe good news (LOL) and maybe some advice for my hubby.
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Old 01-18-2008, 01:19 AM #18 (permalink)
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Dear Barbie,
While the information provided by other parents on this site will be the most valuable, the MND Association of Australia has a link 'just for kids' http://www.mnd.asn.au/kids.html
Susan
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Old 01-19-2008, 06:48 PM #19 (permalink)
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/Susan,
Thats a good link and one I will bookmark so My kids can look at it. I think it explains ALS very well.

Thanks,

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Old 01-19-2008, 07:15 PM #20 (permalink)
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Hello Duke, You may want to contact your local ALS Society to see if they would have someone go into your childrens school and give a speech on ALS that is geared to the children. I know it was done in our area and seemed to be quite successful. It helps the PALS children as they get extra help when the rest of the school has some understanding of what is going on in their personal lives.
Hope this is of some help to you.
Take care
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Old 01-19-2008, 11:45 PM #21 (permalink)
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Ask your doctor about the ALS clinic team, assuming you are seeing a university specialist. Possibly, just contacting the ALS Association would help. I know they have reached out to us at our first clinic visit. The social worker, psychologist, etc. They even said they would come out and talk to the entire family and it would not be a cost, part of the clinic team thing.

Hang in there Barbara. It is very difficult and I will be praying for you, your husband and the kids. Kids are funny. Sometimes they handle things alot better than we think and can even be supportive in their own way.

Good luck and God bless.

Patty
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