Hello

[Tich1]

Hello , I'm new here so forgive me if I'm doing anything wrong .
I came across this forum when I googled for ALS MND forums , and you
seem a friendly bunch .
I was diagnosed in March 2009 after having swallow and speech problems since January 2009 . I have weakness in my limbs also . I am drooling a lot too .
I'm on Riluzole and pyridostigmine . I have all but lost my speech and use a Lightwriter .
I have been asked to seriously think about having a PEG put in . This scares me . I
don't think I have it put in under local , I want to be asleep . :-(
xxxx

 

[Al]

Hi Tich1. I don't have one but if you use search feature above for peg tube or feeding tube, there is lots of stories from people that have them. Maybe 1 in 20-30 people has a problem. It's not as scary as you think.

AL.

 

[BethU]

Al's right, Tich ... lots of people here have them (including me since January) and it's the best "treatment" I've had for ALS. The implant is quick (5 to 10 minutes), and they can knock you out if you want. I tend to be in your camp ... I really don't want to know what's going on! But it's fast, simple, easy to use and it enables you to keep the weight on.

I still eat some by mouth (a cookie or two a day, yogurt) just because my mouth demands some of the action, but it's such a struggle ... what a difference the tube makes.

 

[Harry77]

Hi Tich;
My wife's nuerologist suggested she get her peg early, about 1 1/2 years ago. Good thing too, her lung capacity dropped off quickly after that and she may not have been able to have full anesthesia for the procedure. She didn't want to be awake either. She hasn't been able to swallow for several months now, but with the peg and a good schedule, we have to worry about weight gain, not weight loss. It's a big help.

 

[Tich1]

Hi Al , Bethu , and Harry , thank you so much for your helpful replies . I now know I need one and will gain some of the weight I've lost . I will have to ask ...nay ...plead that they knock me out though !

Teresa xxx

 

[DRS765]

Harry: Who is your wife's neurologist? Is he/she in CT? Darcy