I'm scared

Tiffyholman · 02-02-2005, 11:11 PM

My mom is 55 DX in April with ALS, in Nov. she was Treched and got a PEG tube, we brought her home 2 days before christmas. Does anyone know what happens next? What will she die of? And how? I'm really scared. I don't suggest a trech to anyone, she is so unhappy.

And now I'm scared I've got ALS, i've been thinking that I'm twiching and having a hard time swallowing, I've just been totally freaking myself out...

ticker · 02-03-2005, 12:33 AM

Hi Tiffyholman. I cannot offer any advice regarding the trech but I wanted you to know that I am praying for you and your mom. I know it is very painful to go through what you are going through. Your mom is very lucky to have you.

tip2mol · 02-03-2005, 11:03 AM

Hi,

I am sorry that you are going through all of this. Truly- the hereditary form of ALS is pretty rare. It is even more uncommon at a younger age (which I can imagine that you are given your Moms age). I would feel pretty certain in saying that your symptoms are stress related because of what you are going through. As far as- the longivity of a person on a ventilator, it can be indefinite. The one thing that takes a persons life with ALS is respiratory failure or aspiration which the ventilator pretty much takes care of. If your Mom is that unhappy and your family is in agreement- the ventilator can be removed with agreement with your doctor. I know this is a hard decision. I lost my Mom 4 1/2 years ago to ALS. I also am a nurse that has worked with many patients with ALS. I have been involved in a situation where a patient was taken off of the ventilator per her wishes and her families wishes. I- now volunteer my time with a local ALS support group.
You and your family are in my prayers.

Erika2610 · 02-08-2005, 02:56 AM

My grandmother had ALS for 10 years.. I'm always paranoid I have it or am gonna get it. Noone can say how long she will live. They gave my grandmother a year and she lived for 10. And back then, they didn't have any meds or anything. I believe they have meds nowadays for some people.

Tiffyholman · 02-08-2005, 10:45 AM

yah my mom's lungs were to bad for her to take riluetik, and she just has gotten bad really quickly. All she wants to talk about is dying.

My doctor put me on some medicine and it seems to be working, I'm not quite as paranoid as I was. It's really hard and scary. Thanks for all your replies, keep me in your prayers and I"ll pray for you.