Status
Not open for further replies.

The Sass

Member
Joined
Jul 12, 2007
Messages
21
Reason
CALS
Country
US
State
Texas
Hello all,

I hope to word this so it does not sound morbid but uncertainty and not knowing are tormenters to me. My Mom was diag. 7/06 with bulbar onset als. Besides having this she is on in years, 77. She got a peg 2/07 and can no longer eat, she has not spoken since 12/06 and can barely walk with walker and assistance. She has her motorized wheelchair as of last week. She uses bipap at night and cough assist as needed. She cannot dress herself and needs assistance with clothing going to the bathroom. Which is another problem because she often has bowel accidents. I know the average expectancy is 12-18 months. I just don't have a clue where she is or how much worse it gets. Does anyone have experience. I know there is not magic number and everyone is different but on a scale of 1-10 I would just like to know where she is. I cannot get the doctors to tell me. Any educated guesses?
 

CindyM

Extremely helpful member
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
Hello Sass. Sorry to hear about your Mom. I sort of understand the need to know what the future holds. Myself, I like to plan but sometimes life does not give us that option. Also unfortunately life does not give us the option of making a debilitating disease any easier either for the one going through it or the one watching. :cry:

If you search the threads you will find people who lived long and happy lives for many years, as well as some who did not, unfortunately. The disease affects everybody in similar but different ways. I wish I could offer more. Please feel free to visit and vent and share anytime! Cordially, Cindy
 

home again

Member
Joined
Mar 18, 2007
Messages
19
Reason
CALS
Country
US
State
MI
I agree with Cindy that you cannot estimate....many people live with it for years and others for only a short time. My mother's case is very similar to yours....diagnosed in 08/2006, PEG tube in 03/2007, started BiPAP 07/2007 and I lost her on 08/18/2007. Do not, however, let my case discourage you. My mother also had emphysema before her diagnosis and I think her poor pulmonary function was the cause of her rapid deterioration. Keep chin up and fight for your loved one. That's all any of us can do. My thoughts and prayers are with you and yours.
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock
No Thanks