Mother diagnosed with Progressive Bulbar Palsy, what can I do?

enjoys_sashimi

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My mom has been struggling with speech the past two years, through countless doctor and specialist visits she has finally been diagnosed with Progressive Bulbar Palsey, she is utterly destroyed emotionally and this is making a massive impact on my own mental health.

What can I do? I've already cancelled my lease and will be moving home to spend whatever time I can with her over her time remaining.

Is there any chance that this will ever go away?
 

lgelb

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I'm sorry about your mom. Unfortunately, it will not go away. But the rate of progression varies. If she has no limb issues after 2y of speech deficits, she may be in the subgroup (isolated bulbar palsy) that lives somewhat longer and has breathing problems later in the course.

She may want to consider taking riluzole in consultation with her doctor.

If her mental health is interfering with her daily life, she may want to seek an antidepressant and/or counseling. The ALSA also has virtual support groups where I would hope there is a chat window where she could participate by typing. Of course, she is also welcome here in her own right.

All the same is true for you -- there is support for family members.

Does she have a text-to-speech app on her phone/laptop or other solutions that she is using?

Best,
Laurie
 

enjoys_sashimi

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Hi, Laurie.

Thank you for responding.

She has no limb issues whatsoever, perhaps she does have the isolated bulbar palsey.

I don't think she'd ever take antidepressants, I'm hoping that I can be there for her emotionally enough to start to flip her spirits. (She lives all alone and has no family anywhere near her).

She doesn't, we communicate through email and text, I'm looking into the two of us learning sign language or other pieces of technology that can help us.

She was placed on medical leave from work and will obviously not be able to return, where can I look to start getting governmental financial aid?

She bought her home three years ago and still has a lot of her mortgage to pay off, I'm scared that she will lose the house.

Also, I find it slightly ridiculous that I'll need to pay 150$ a year to post here for support. I've never seen a forum in my life charge for usage. Especially due to money being extremely tight and the aforementioned reasons.
 

Nikki J

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I am sorry you have to be here. Assuming that her work was such that she contributed to social security and she has worked 5 of the last ten years she should apply for ss disability ALS is an automatic approval. I don’t think PBP is but if she has lost speech due to a neurologic condition it should count as a disability

you do NOT have to pay to post here. If you choose to be a forum supporter you can be but it is absolutely not required.
 

affected

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Very sorry about your mum's diagnosis. We can support you both here, and believe me, I've been here more than 6 years and have donated a couple of times when I could, but you will notice I don't have the forum supporter sign on the left which you get if you can afford that money.
The site is maintained by someone whose friend with ALS originally started the forum and he has done this voluntarily, including paying for hosting and spending many hours of his own personal time each year maintaining the site (and that is quite a job as everything has to be kept well updated to prevent malicious hacking and suchlike). The few who can afford to pay basically help cover his costs :)

I hope Nikki helped answer some of your questions about practical matters. I'm so glad you are able to move in and help mum, you will never regret this later in life.
 

rmt

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My husband has been diagnosed with probable PLS with only speech and swallowing issues so far and is just over 2 years into symptoms too. PLS is like PBP but with only upper motor neuron issues (instead of both upper and lower motor neuron issues). Does your mother have muscle weakness? Did they do an EMG to show lower motor neuron damage? I ask because the first specialist we saw, about a year into symptoms, thought that he probably had PBP, even though the EMG was clean. She was positive the next EMG would show lower motor neuron issues. But so far, at 2 years in, his EMGs have all been clean and he has no weakness. PLS has a better prognosis, at least as far as life span, though it takes years to get a diagnosis since lower motor neuron issues can begin at any point (and then the diagnosis changes to ALS).

My husband's speech is pretty bad now, so we use dry erase boards to quickly and easily communicate when we are together. It would also work over a video chat. Easy and cheap solution to communication difficulties as long as writing is an option. He prefers this method over typing into a computer and having it "speak" for him. It feels more natural and is faster since he isn't great at typing. I like it because it is so easy for him and he is much more likely to write things than type them, so we are able to have great conversations again. We now have dry erase boards all over the house and in the car. It has revolutionized our communication as his speech has deteriorated.
 

lgelb

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A dry erase board is a perfect example of a low-tech solution. Thanks for sharing.

Best,
Laurie
 

WillowJ

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I'm so sorry to hear about your mom. My mom was diagnosed with PBP recently, and it's a challenging rollercoaster ride. Some things that would be helpful to start thinking about are communication backups (my mom uses text to speak apps and a whiteboard, it's helpful to start practicing with those before they become a total necessity), and getting signed up for disability benefits. Like Nikki said, ALS is an automatic approval, so that process should go faster than it normally would. We had to mention ALS and Lou Gehrig's disease together, some of the social security employees we talked to didn't know ALS and we were having issues until we mentioned Lou Gehrig's disease. Try and remember to take care of yourself too! It's hard to have anyone you love be diagnosed with ALS, and trying to figure it out with/for a parent comes with particular challenges and heartache.
 

lgelb

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Willow, welcome. Feel free to start your own thread and introduce yourself if you'd like.
 
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