Old 10-23-2016, 08:42 PM #1 (permalink)
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Smile A post for women with bulbar

Hi everyone, I was torn as to which forum I should post this in. When I scroll down the PBP Forum, it does not seem super active. It was a toss-up between the PALS forum and this one, so I'm putting it here. If a moderator wants to move it, that is a-okay with me.

My blog is mostly about life with a feeding tube. There are plenty of adults out there who have a peg because of cancer or other conditions that do not affect the bulbar facial muscles. But, in the motor diseases world, feeding tubes are most often placed for those who have bulbar weakness.

I've started a section specifically for women, and the first topic is for women with bulbar atrophy, whether or not they have a peg tube.

The link is below.
Cosmetic compensating for bulbar lip changes | Tube Chic
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Old 11-03-2016, 08:07 PM #2 (permalink)
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Default Re: A post for women with bulbar

Hi, my mother has been clinically diagnosed with bulbar ALS over the last 2 weeks. She also during this time is unable to eat by mouth and very slurred speech. Last Saturday she had a peg tube placed in her stomach also. She will have an EMG to confirm the diagnosis 11/10/16. Is anyone aware of Deanna protocol? I have been researching not stop since we have received this news.
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Old 11-03-2016, 10:57 PM #3 (permalink)
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Default Re: A post for women with bulbar

Kimmy sorry about the diagnosis - maybe start your own thread as this one already had a subject.

But maybe first search here on the DP and see what many PALS over the years have said.
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Old 11-04-2016, 11:29 AM #4 (permalink)
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Default Re: A post for women with bulbar

Kimmy, I'm so sorry. My mom also has bulbar onset. I was just reading about Deanna yesterday as well. If you have questions, there is a number to call and a live chat. I found them very helpful. It's definitely not a cure, but the supplements seems to boost energy in people taking it, if nothing else. Apparently it is also quite helpful with muscle spasms. My mom already takes a pill which solves that problem, so I'm unsure Deanna would be very useful for her. I guess upping the energy levels might be helpful. All the best to you and your family, and please let me know if you find anything useful to share about Deanna!
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