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lgantert05

Member
Joined
Mar 1, 2013
Messages
12
Diagnosis
02/2013
Country
US
State
Co
City
Denver
Hi All,

My mom was just diagnosed two weeks ago. She doesn't have great use of her left leg, slurred speech, trouble swallowing. She has fallen a few times. I know there aren't "stages" to this but I would like to hear some stories about progression, how long people have lived with this, and how long the last "stage" lasted for. I need to move home to be with her and take care of her but I want to be there for the middle-end. Thanks
 
Please watch the 3 videos on you tube called the ABCs of ALS. It will be very valuable.
 
I'm so sorry you are dealing with this.

No one can really tell you how long someone can live with ALS.

It depends on so many things. Her age, her overall health, etc.

First, if she's falling, those falls need prevented. There are AFO devices for drop foot. Perhaps a walker if her hands are strong...but if she is falling now, she is going to need a wheelchair. Medicare takes forever to approve them, so she should start the process early.

If she's having bulbar involvement, choking is a hazard. Does she have a PEG, or has she decided against that?

ALS in and of itself isn't what kills. It's the breathing that causes death. There are bipaps and vents available to help...a new pacer to have with diaphragm weakness.

Drug trials are at many ALS clinics

Respiratory infections are the most common complication that can lead to death for PALS.

THere are just no easy answers. Speed of progression varies so much. Ask any questions you have.
 
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