Old 05-20-2010, 07:59 PM #16 (permalink)
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Default Re: What can I expect?

Good luck with the pulmonologist appt! I saw mine today, he was a little gloomy. My breathing is good, about 90%, but he still wanted to talk about all the things I'd need down the road. He wants me to get a swallow study as I've been choking a lot on food and haven't had one since last fall, so we're setting that up.

I have this crazy thing going on with insurance. Like you, we've met the deductible and with our plan the insurance now pays 100%! But my company got acquired so we are switching to different insurance next month, and we'll have to start over with the deductible. So we are going crazy trying to squeeze in all the doctor visits we can think of in the next two weeks.
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Old 05-20-2010, 11:14 PM #17 (permalink)
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Default Re: What can I expect?

miss i agree with indigosdand sadiemae get the feeding tube its not a big procedure i was not wanting one when i was told and encouraged by many on this forum to do it .im glad i did it helps alot.and if it is progressing fast you want that done while you still are in ok shape my prayers go out to you and your husband and family god bless
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Old 05-22-2010, 11:31 AM #18 (permalink)
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Default Re: What can I expect?

I wanted to post this, even though it has been put out there before, but it was a while ago so many of you may not have seen it. Many of us on this forum have university affiliations and can access those journal articles for free. There is no reason for any CALS or PALS here to pay for an article from a journal. I would be happy to forward any article I can access. Just let me know.

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Old 05-22-2010, 06:49 PM #19 (permalink)
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Default Re: What can I expect?

Miss, I am sorry to hear your husband is declining rapidly. Als does appear to strike each differently. When my husband got sick beginning of April, I thought it is the beginning of the end. He actually recovered after more than two weeks. Now he has good days and bad but is doing all right. Als in his case appears to be slow progression. This is like a respite for me and life goes back to some form of normalcy.

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Old 05-23-2010, 07:32 PM #20 (permalink)
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Default Re: What can I expect?

Hi Gertrude -

That's our prayer. We hope he hits a plateau soon. Then we could come up with something that resembles a normal life. Right now, we make adjustments, and before we can get used to it, it's time to make adjustments again. Frustrating and scary.
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Old 05-26-2010, 06:54 AM #21 (permalink)
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Default Re: What can I expect?

Good Morning Missy!
I don't have any advice to share regarding this. I do understand your fear and concern, especially about the speed of the disease. My mom was diagnosed in Sept 2009, and for me it seems that she is progressing quickly. Others might not agree with me. Listen to the suggestions of all the forum members, they have been there done that and know what they're talking about. I plan to pass what they say on to my mom. I wish you the very best and hopefully your husband will plateau soon. Keep us all posted.
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Old 05-26-2010, 09:35 AM #22 (permalink)
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Default Re: What can I expect?

Did you ask about the BiPAP and get scheduled for the PEG? How is the VA battle going? hugs
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Old 05-28-2010, 06:05 PM #23 (permalink)
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Default Re: What can I expect?

We went to the pulmonologist today. Numbers weren't nearly as bad as they seemed at the MDA clinic. His was 80% of expected. The pulmonologist (who works with ALS patients frequently) thinks the Cpap is fine for now. He wants to switch to Bipap when he nears 50% of expected. His NIF was -38 . Finally, a report that is not a shocking decline!
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Old 05-30-2010, 07:32 PM #24 (permalink)
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Default Re: What can I expect?

missy i hope all works out like sadiemae said i would get the feeding tube asap theres nothing to it i was worried but listen to alot on this forum and did it im glad i did god bless your family
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