Time frame for "advanced" stage of PBP

[Tawanda]

My mother has had speech difficulties for the past 5 years. Over the last year it has gotten progressively worse. We are now unable to understand very much of anything. She can only eat soft or pureed foods. Just got the official diagnosis yesterday that it is PBP and she is in the "advanced" stages. Anyone care to give us an idea of how long we might still have with her at this point? I couldn't get the nerve up to ask the doctor yesterday as the news was just sinking in.

It has not progressed to her arms or legs but he is 95% certain it will unless she aspirates/gets pneumonia first. Her nerve tests in her arms and legs were fine but he says she has "brisk" reflexes. Not bad but not ideal either...in his words.

She is 80 and has no interest in feeding tubes or any other devices to assist her. Does anyone have a story similar or thoughts on this?

By the way, we just learned about the ClaroCom app on her ipad for her communication and it is GREAT for anyone needing something!

 

[Ells]

Sorry to have to welcome you to the forum.

The most pertinent information just now is: how is your mother's breathing?

 

[Tawanda]

She gets winded after short walks but is fine while sitting.

 

[Ells]

Has she had Pulmonary Function Tests?

If she is unfortunate enough to get pneumonia due to aspiration, much will depend on her lung function.
No way to answer the "How long?" question, I'm afraid. Even with PFT numbers, it just isn't easy to give a prognosis.

 

[lgelb]

Hi, Tawanda, Ells is right that we will not have an accurate prediction for you. Her ability to swallow safely and how well she moves air while sleeping are going to be key.

You say that she's not interested in devices like a feeding tube or BiPAP, but what about a rollator to help her feel less winded while walking?

Since she is likely to aspirate food at some point, and the typical approach to that doesn't sound like what she would want, I would make sure you have her wishes documented, e.g. the advance directive for your state, a DNR order set if your state has one, health care power of attorney for you.

Thank you for walking this path with your mom.

Best,
Laurie

 

[Tawanda]

Thank you both for your thoughts and feedback. We go back in April and he may order the test you mentioned then. And all of her wishes are documented. Until then I will just be praying for her and everyone else facing this disease. Thank you again.