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cooklo

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Oct 11, 2008
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CALS
Country
US
State
Florida
City
Pt. St. Lucie,
I've posted only a few other times about my mother who was officially diagnosed 5/08 with ALS, bulbar onset. Sept she had a peg inserted and since, has deteriorated at a very rapid pace in my opinion. She is still able to walk around as long as someone is with her, but this is getting much worse in regards to her steadiness. She needs assistance getting and down and getting into bed. It's her mental capacity that I find the hardest to understand though.

Mom is now unable to speak at all, she just sounds like one long mumble. She really is unaware of much of what is going on around her. I've asked the neuro about this and she feels it may be a C02 problem, which is getting tested next week. Mom sleeps most of the time, sits and stares at the TV, but not sure she even knows what she is watching.

Has anyone experienced anything like this before? Are we looking at the final stages of this disease with the dimentia becoming the biggest factor? Can my mom live like this for a long time? Her neuro told us when the peg was put it that she may have 2-6 months to live, but I was not ready to sign on to a deadline. Now seeing how my mom is having to live day to day, I'm hoping it is not that long. I know that is horrible to say, but she must be in there somewhere and realize what is happening to her.

Any advice?
 
Hopefully your mother will get the breathing tests and then a bi-pap if appropriate. That could eliminate the CO2 issue. Then you could really see if there is a dementia going on. Frontal Temporal Lobe Dementia has been shown to be part of ALS for some people. Sad if true for your mother. Sounds like you are staying on top of the things she needs. She is blessed to have you.

Sharonca
 
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