Living alone with PBP

[sesl]

My mother has just been diagnosed with PBP. She lives alone and won't want to leave her home, at least not immediately. There are family members nearby and support services available (although we haven't yet investigated these).

Are there others living alone with this condition? How do you manage, and for how long (or until what stage of the disease) do you expect to be able to manage?

Can people with PBP drive - when should they stop?

 

[BarryG]

sesl, welcome to the forum, sorry you have to be here. Can you tell us what your mom's symptoms are? A lot depends on her what her symptoms are and how fast they progress. One thing that you will find here is that everyone is different in what they can and cannot do and for how long. If she is only experiencing bulbar (talking and swallowing) symptoms then driving is no problem but you should make sure that she can communicate somehow in case she gets stopped by police (or whoever). As far as living alone, you and she will have to be the judge of that keeping in mind that choking is a very real possibility. So she might be OK on her own most of the time but should have someone to help at mealtimes. I don't live alone but I do spend a fair amount of time at home by myself and I am very careful about what I eat especially when no one else is around.

 

[sesl]

Thanks Barry, she is only experiencing swallowing and speech difficulties at this point, so your advice is very relevant.

sesl.

 

[Zaphoon]

I believe your mother will realize when she can no longer manage things without assistance. Giving up your independence can be very difficult but given time, it is inevitable.

The best of luck to you and your mom!

Zaphoon

 

[Anastasia]

My mother has just been diagnosed with PBP. She lives alone and won't want to leave her home, at least not immediately. There are family members nearby and support services available (although we haven't yet investigated these).

Are there others living alone with this condition? How do you manage, and for how long (or until what stage of the disease) do you expect to be able to manage?

Can people with PBP drive - when should they stop?

We all have so many queries and if you are like me , I seem to be thinking of new ones as each day progresses. I guess the best thing is having a venue like this and being able to chat with others in the same boat!
The reference to drivingis a very good one.
What info do others have?
I wish you well,take care of you while you take care of your Mum.:smile: