Progressive Bulbar Palsy is current diagnosis for my Sister.

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Daveinoly

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I’m very glad to have found this group. In August of 2019 I had a voice mail from my Sister. Her voice sounded as though she had suffered a stroke. After speaking to her I was relieved to learn it was not a stroke but rather a condition that had been developing. Her GP had no idea. Fast forward to January and she could barely be understood and a feeding tube had been inserted. Also in January is when she received her diagnosis. Her physical health remains good except for tiring more easily.
I’m here to learn more. What little I have learned is frightening. Again, I’m glad you’re here and I will go through as many pertinent posts as I can find. If you have some experiences with this condition I would like to hear them.
 

lgelb

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Welcome, Dave, while sorry to hear about your sister. From what you say, she might have isolated bulbar palsy (IBP), which also can be described as UMN-dominant bulbar-onset ALS, which generally lasts longer than PBP, because breathing is preserved for longer and cognitive problems are less likely.

Still, like all the related motor neuron diseases, it doesn't last forever. Either way, it amounts to a disease that is primarily bulbar for now. Does she have technology or some system in place for communication?

We'll help however we can -- no question is too large or small.

Best,
Laurie
 
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Daveinoly

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08/2019
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Thank-you for your reply. I appreciate the information. It appears as though there is not a lot of clarity coming from the provider side since I had not heard of the IBP.
I will talk to her daughter and ask if she could help get her a text to talk app for her phone. Thanks for that suggestion.
 

lgelb

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Let us know if she needs help parsing the apps. Is your sister getting care in Oly, Tacoma, or Seattle?
 

Daveinoly

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Thank-you for the kind offer. She is in Spokane.
 
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