Bulbar question

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pastor

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Bulbar question

My moms speech is quickly become extremely slurred. Most times we cant understand anything.
I feel horrible everytime i have to ask her to repeat herself over and over again. I can see how it frustrates her that we cant understand.

My question is....Can bulbar onset patients hear their slurred speech? She keeps speaking as if we should be able to understand. Is that because she cant hear herself?

I had to ask here because she is still very much in denial of her diagnosis and talking about it is off limits with her right now.
 
My sister definitely knew she was having issues right away but I think it sounded clearer to her than us. Just like we could understand her when strangers could not. After all, she knew what she was saying. I remember one time she said last night I was so tired my speech was so bad even I could not understand myself. So yes your mom probably knows but does not know how bad it is
 
Pastor. She knows. Nikki is right. She probably doesn't know how bad it is. My mom gets worse at night. I try to repeat what I heard and just ask for the words I missed. It is hard to remember not to ask a question from another room when I know I can't hear the answer. I need to be right beside her and I need to read lips. She has a habit of covering her mouth which makes that hard. I wish she would practice with her ipad more so that when she needs it she will know how to use it and won't be so frustrated. My 4 year old granddaughter told me the other day that Grandma's voice is dying. We had a bit of discussion and then I asked her if she would like to talk to Grandma about it. So we went and had a talk with my mom. She said "If you wisper in my ear I can hear you". It is important that they know it won't get better and what the new "voice" is going to sound like.
 
Except when my tongue can't form the sounds, my speech sounds normal to me. For some reason, I'm often understood over the phone better than face to face. Maybe it's my posture.

GB
 
At first Chris was really sensitive to how his speech sounded. He ran his own cafe and talking was pivotal for him and he felt like it was the cruelest part of his body to be attacked. He noticed every little change as those early months progressed.

As he progressed further, I never knew if it was part of the FTD or not, but the worse his speech became, the less he believed it was 'that' difficult to understand him and the more he became convinced that people were just lazy and didn't care enough about him to be bothered to even try to understand him.

Even by the end when everything had to be spelled out on communication charts he would begin by attempting to say a sentence and be frustrated that stupid me would have to retrieve the chart having no idea what he was trying to say.
 
I have HAD to start typing and writing, when my caregiver can't understand me I know it's over. Painful for someone like me who loves to talk but what is the use in straining and wearing myself out when nobody understands. I still forget sometimes when I get excited or angry. I watch too much FOX news,lol
 
Thank you all for sharing
I think it is time to get her some kind of dry erase board or something that she can write on when we cant understand.
She also seems worse at night. I hate to keep asking her to repeat herself but I guess my face always shows it when I am struggling to understand. Then she tries to say it again.
She only has bulbar symptoms. Not that ANY of the symptoms are better than the others. But I wish I would have recorded her speaking before the monster came.

My dad is heard of hearing so they are an awesome pair right now :)
He is also teminally ill. He has multiple myeloma.
 
The difference is in the cause. ALS, being a motor disease, messes up the muscles that talk, but not the brain.
Dementia, on the other hand, messes with the brain.
My dad, who died of dementia, was non-communicative for his last five years. During the time he could talk, he spoke gibberish. But he didn't know it. He thought he was speaking perfectly fine, and didn't know why people didn't understand him. He spoke very clearly, but like it was another language.
 
pastor, can she use something like an ipad or tablet, there are some great text to speech apps available?

A few months before Chris passed, my brother had a brain aneurism that was pressing on his optic nerve and he went suddenly blind. He had successful surgery and Chris was keen to have him come here to recover. It was a disaster - 2 neurological cases in the house.

1 who could not talk or move and had a lot of equipment everywhere.

1 who could move about (but was very frail with severe osteoporosis so falls were a huge hazard) but couldn't see

It was a case of a nod is as good as a wink to a blind horse ...
 
When my husband's speech first started slurring, he couldn't tell, but a few months later he called saying he was having difficulty forming the words--his tongue wouldn't work. That's when we saw the neurologist and he was diagnosed bulbar-onset.

His speech is always more difficult as the day wears on and he tires. He can hardly communicate on the phone at all now and I usually have to interpret for him when we're out. He can still say a few words at a time, but his tongue, throat, jaw all feel like they don't work together and it takes his biggest breath possible to get through a full sentence when he can.

I don't think he "hears" as much as "feels" that his speech is compromised. Trying to speak is very fatiguing to him.
 
>Trying to speak is very fatiguing to him.

tell him he is not alone ... especially today :-(
 
Bulbar question

My moms speech is quickly become extremely slurred. Most times we cant understand anything.
I feel horrible everytime i have to ask her to repeat herself over and over again. I can see how it frustrates her that we cant understand.

My question is....Can bulbar onset patients hear their slurred speech? She keeps speaking as if we should be able to understand. Is that because she cant hear herself?

I had to ask here because she is still very much in denial of her diagnosis and talking about it is off limits with her right now.

yes, we can hear that our speech is slurred, but in our mind it is clear as crystal. my husband took a 8x11 eraser board, made 2 holes in it, put rope through them and i wore it around my shoulder, as seen in my picture.

walmart sells the eraser boards and markers that have erasers on them.
 
When my husband's speech first started slurring, he couldn't tell, but a few months later he called saying he was having difficulty forming the words--his tongue wouldn't work. That's when we saw the neurologist and he was diagnosed bulbar-onset.

His speech is always more difficult as the day wears on and he tires. He can hardly communicate on the phone at all now and I usually have to interpret for him when we're out. He can still say a few words at a time, but his tongue, throat, jaw all feel like they don't work together and it takes his biggest breath possible to get through a full sentence when he can.

I don't think he "hears" as much as "feels" that his speech is compromised. Trying to speak is very fatiguing to him.

This post rings true for me as well. It is just hard to form words, and the frustration involved with having to repeat words and sentences adds to the problem. I can type 40plus words a minute, and know what I want to say...just don't have the air or vocal cords to do it. I have said many times that this is my worst symptom, it can really turn people into social recluses. I have had speech problems for about 1.5 years, and it never gets comfortable...only gets worse!
 
Mark, Chris felt the same way. He was such an outgoing, talk your ear off kind of person. He began to feel invisible because he would sit there thinking a response to conversation, try to work out simple words to express it, and realise the conversation had moved on. And that was when his speech was not too bad. It does cause a lot of isolation and he often said in the early days that he wished it had started in his legs, he could have sat and talked people's ears off happily. :(
 
My moms youngest sister also had bulbar onset. It became so frustrating to her that she just stopped talking all together. For the last 5 months of her life we never heard he voice again.

I am going to try the dry erase board for my mother. The ipad may be a bit more than she is willing to learn. Not very techy
 
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