bulbar question

[pastor]

My mom has bulbar onset. At this point most of her speech is unrecognizable. My question is.....is there a point with bulbar onset when you are unable to use your mouth completely?
I had 2 aunts with bulbar onset but they both passed away still able to speak...to some degree. My mom's speech is further gone then theirs was.

 

[affected]

Yes pretty much the ability to speak and swallow will go completely.

It makes everything so difficult when the communication is depleted to simply trying to make their immediate needs clear. Do you use a communication chart with your mum?

 

[ECpara]

My husband's had bulbar onset ALS (early symptoms) since Spring 2011. Dx Feb 2012. Lost total ability to speak Feb 2013 and uses an iPad, Boogie Board and notepads to communicate. He lost the ability to eat Jan 2014 and is on a PEG tube for nourishment. Yes, I'm afraid the mouth completely goes. Feel free to come here if you have any more questions. I'd be happy to advise.

 

[pastor]

My mom uses a boogie board. We bought her an ipad but she's not very tech saavy. We are will be talking to her neuro about a peg tube after her next PFT. She still able to eat some things but it takes so much energy. More ends up down her blouse than in her mouth. She refuses to eat puree. But i will tell you one thing.....She never complains. Never loses hope.....

How is your husband? It sounds like he's hanging in their strong!

 

[ECpara]

Pastor, thank you for asking. My husband, Tom, is declining, however, he is still independent; can walk, take care of and dress himself (with a little help), type, do his own tube feedings, even drive (I do most of the driving, though). His diaphragm is going, FVC is only 21% and he experiences a tremendous amount of fatigue. I'm certain most of the fatigue is from CO2 buildup. He uses a Trilogy to expel this. Even standing for more than a few minutes exhausts him. The television and sleep are his best friends.

I hope your mom gets a PEG tube soon. My husband got his early on, back when he could still eat. He used it primarily for meds at first, then as supplementary feeding when eating became difficult. The transition to all tube feedings was easy, he was so used to it by then. It clearly saved his life and because he has always kept his weight up, I'm sure it helped his slow progression.

I fully expect when he exits this earth, he'll still be fully mobile. I hope your mom will experience the same!

Blessings!
Nancy