Old 06-10-2013, 03:20 PM #1 (permalink)
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I first posted on here in December. My mother in law was diagnosed at the end of 2012 with ALS. Since November where she was able to go hunting and hiking she now has a walker for inside and out...bipap for sleeping and has a difficult time walking short distances. She needs help dressing and undressing and eating has become a chore. We visit as often as we can (3.5 hours away) and have just come off a walk for ALS. Anyways, hello again.
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Old 06-10-2013, 03:53 PM #2 (permalink)
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Default Re: hello again

I was thinking of you yesterday, and in fact checked your profile page. And in you popped today. No doubt about it, it's hard on families, especially when there's a distance between them.

Are you still traveling to London for regular clinic visits? This disease is horrible and progresses differently with everyone.

For me, I find it's better to focus on what I still can do, as opposed to what I can't.

If your MIL would like to join us here, that would be great too.
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Old 06-10-2013, 04:09 PM #3 (permalink)
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She as an appointment tomorrow actually. We as a family are working through it.
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Old 06-12-2013, 05:17 PM #4 (permalink)
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Well as expected things have declined somewhat in all areas. Some new issues with her tongue and side to side movement of it. Is there more than one lung test? If not the forced one was at around 50%...they stayed at our place last night. And I think we all realized this may be the last visit to our home. We don't have the set up they do back home especially with the bath room and shower...it was one of those moments for all of us that made us realize how tough this disease is.
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Old 07-07-2013, 01:22 PM #5 (permalink)
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My mother in law is now presenting issues with her tongue...this is moving so quickly it's unbelievable...but who knows how long shes truly had this disease....she experienced something this morning that frightened my daughter...we go to visit every two weeks...anyways...for about an hour or so this morning she was unable to speak properly...her tongue "wouldn't work" as she called it...and then after a while it was fine...has anyone else experienced this?
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Old 07-07-2013, 03:27 PM #6 (permalink)
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Default Re: hello again

she may have been having spasms in it or her jaw or throat, causing her to temporarily lose the ability to speak properly. then the stress of it makes it worse. unfortunately, it is not going to get better in that department...

I am so sorry your family is going thru this. keep visiting her and cherish the time you have together.
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Old 07-08-2013, 10:30 PM #7 (permalink)
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Default Re: hello again

so sorry about your situation

In the first 6 months of bulbar symptoms my PALS would have his speech 'come and go'

Sometimes he would have whole good days, sometimes just a good hour or 2 at a time.

We found that odd, but now more than a year in, we find that yes his speech is worse some days than others, but his speech is never very good at all, the difference between a good speech day and a bad one are not very big differences.

I spoke to him on the phone for the first time in ages today and couldn't believe how hard it was to understand him! It was very different from sitting and talking with him where there are so many more clues. I don't have terrific hearing, so I've used lots of other clues when listening to people for a very long time so I think that helps me.
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