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rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,925
Reason
DX MND
Diagnosis
7/2008
Country
US
State
Maryland
City
Anytown
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
 

Kimmy1

New member
Joined
Nov 3, 2016
Messages
1
Reason
Loved one DX
Diagnosis
10/2016
Country
US
State
Indiana
City
Fort wayne
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.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,867
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
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.
 

missbelle

Member
Joined
May 10, 2016
Messages
28
Reason
Loved one DX
Diagnosis
05/2016
Country
CA
State
Ontario
City
Hamilton
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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