Just looking for some guidance

[lisaohgee]

My mom was diagnosed in May of last year.

As of late, her ability to walk has pretty much gone. Her arms are lifeless. She defnitely has shaking in the voice. She can still eat, but I wonder for how long.

I am just curious as to when the ability to eat/breathe goes away in relation to other symptoms. I know there is no sure answer, but I am trying to prepare myself. Thanks.

 

[Phil M]

Theres no way of knowing. The eat, and breathing thing, might be the last things to go. I'm on my 3rd year this summer. I have Bulbar, and so far, my breathing is still ok (knock on wood). With ALS, you pretty much need to live for the moment. And don't think about the rest..

 

[brooksea]

My husband is going on 4 years with bulbar and still eats though he is supposed to use his PEG. His breathing is OK and he still walks, although he is mighty wobbly and falls at times.

As Phil pointed out, you just don't have a certain time-line.

 

[BarryG]

Like Phil and Brooksea's hubby I am bulbar onset (2years since diagnosed) and I agree that there is no way to know what is next or how slow or fast progression will be. All you can do is plan for the worst and hope for the best.

 

[Twinsmom]

Dear Lisaoghee,
Sorry there's not more clarity for you...all you can do is prepare for what's in front of you, knowing that the progression will come...Have you and your mom had the conversation about a feeding tube? I know lots of PALS on here have gotten their feeding tube while still able to eat, so they can gradually get used to it. May be something to explore with your doctor, once you know your mom's desires.

Peace,
Melody