Mother has been diagnosed with PBP

[bailey85]

Hello there, I hope I posted in the right section. My mother was diagnosed with Progressive Bulbar Palsy last month. I guess her issues started about a year ago. Her speech was fine but for some reason she thought she had cerebral palsy.
Not much longer after that her voice started to change. It almost sounded as if she had been drinking. No one including myself thought much of it. She would go to different doctors coming up with nothing. She eventually tried botox on her throat.
Not too much longer after that her speech had become worse and then came the coughing and trouble eating.
She had lost 12 lbs which for her body type is a lot. Two weeks ago she had the PEG put in her. She can no longer speak and can't even swallow a vitamin.
She has always been a very active person. Always working, working out, hiking, doing something and she was a talker..let me tell you. It is sad that she can no longer speak.
Her spirits are good though and she is still working. She smiles a lot which is great to see.
She sends me a text every morning when she wakes up. It's an agreement we have when I can't be with her. I love my mom very much and this sucks.

 

[panguinjen]

Bailey,

You are right! This sucks... I'm glad your mom has her PEG, she'll be stronger! Has she found "speak it" yet for her phone? It's an app that speaks what's typed. I love her attitude! We are a very supportive group!

Jen

 

[cervus]

Sorry about your mum. Jen's right. The PEG will help her now that she's not able to swallow. And there are so many speech devices to assist her in communicating. And yes, this does suck. Take care. Yasmin.

 

[vzandt]

Bailey. Welcome and you are so right. It sucks.

 

[WellsRuby]

Sorry that you have to be here but welcome. I'm new to the forum but it's a great family that gives you support and help. You are not alone in your journey.

 

[bailey85]

Thank you for the kind words. I don't like talking about what's going on with her but I feel I need to.
She is using the speak it app like you said.
She started with a new doctor Tuesday that she likes much more.
New updates I found out is that her legs are deteriorating? Her gag reflex is gone. She was having cramps last night.
The doctor gave her a breathing machine and a patch on the back of her ear lobe for the extra saliva. She is now on Rilutek also.
The doctor also said that her frontal lobe is deteriorating? She has a hard time understanding things and also typing on her phone. She can't type a full sentence.

 

[momap53]

So sorry about your Mom, Bailey. There's plenty of support here and our archives are full of info too.
I take Gabapentin for my muscle cramps, others take Baclofen. Let her Doc know about the cramping so he can make a suggestion.