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nsmith555

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Joined
Feb 27, 2007
Messages
67
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Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Hello.
Well, my mom had her EMG today and the neuro said he could not conclude that she has ALS because most of her EMG was normal, except for some noted issues in her lower legs, but he didn't seem to think it was extremely abnormal.
He essentially said that either its Bulbar onset ALS which hasn't progressed very far or it is PBP. He's referring her to a more ALS-experienced neuro in the area to get more answers/help.
My mom's choking is getting worse and she barely eats anything and struggles so hard to get it down. I really want to encourage her to get a feeding tube and was hoping I could get some advice on persuasive arguments to discuss with her. I know she's resistant to get one because it just means one more aspect of life she has to give up (first talking, now eating). So, fire away with arguments which may have worked for you to get a feeding tube or which encouraged your loved ones to get one.
Thanks in advance!
 

anne

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Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Hi Nicki: Getting the feeding tube was a positive choice for my mom. Believe me she would have never entertained the thought of it in the beginning. However, when she noticed that she was just starting to lose weight and when she realised that every bite was a struggle she knew it was time. It has relieved the stress of choking. Even her breathing had gotten better after the tube was inserted. It is very much a personal choice. The actual procedure was only 10 minutes and then she was back in her room. I think if one decides to get the feeding tube it should really be done before breathing starts to become an issue. I think the most frustrating thing for her right now is the fact that she cannot communicate verbally.

Take one day at a time. Anne
 

hr1982

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Joined
Feb 21, 2007
Messages
8
Reason
Loved one DX
Country
US
State
Maine
City
Farmington
Good to hear

My mother has been saying she doesn't want a feeding tube. Today I asked the neurologist in her hearing what someone could look forward to who didn't get a feeding tube. He mentioned pneumonia and malnutrition, and I think she got the message. I've been trying to give her encouraging messages about them, too. Is there a good description of the procedure somewhere online?
 

edna may

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Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
City
laguna woods
anne said:
Hi Nicki: Getting the feeding tube was a positive choice for my mom. Believe me she would have never entertained the thought of it in the beginning. However, when she noticed that she was just starting to lose weight and when she realised that every bite was a struggle she knew it was time. It has relieved the stress of choking. Even her breathing had gotten better after the tube was inserted. It is very much a personal choice. The actual procedure was only 10 minutes and then she was back in her room. I think if one decides to get the feeding tube it should really be done before breathing starts to become an issue. I think the most frustrating thing for her right now is the fact that she cannot communicate verbally.

Take one day at a time. Anne
Hi Anne, thanks for the interest of my not sending messages, I lost the ability to make any contact at all. in was very frustrating. I finally changed browsers & walla I am back in the fold. if this happens to any one else try changing Browsers. I did talk to the nurse & made my decision, I am getting the tube this coming Monday. EM
 

anne

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Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
HI Edna... well when I was not reading any of your posts I had started to get worried about you. Good luck on Monday...we will all be praying for you. Anne
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Good luck with the tube proceedure, Edna Mae. Hope all goes smoothy. Let us know how the adjustment period goes. Cindy
 
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