Bulbar Onset - speech difficulty?

[sral]

Hi,

I was wondering whether anyone with bulbar onset PLS or anyone with bulbar symptoms since onset can help me understand how bad speech can get with PLS?

My mom's bulbar symptoms started 2 1/2 years ago and although she can still communicate and I understand her, her speech is quite slurred now. Initially it was choppy. Then slow and sometimes slurred and now it's more slurred than anything else. I'm wondering how bulbar/speech progression usually moves with PLS.

 

[Judith]

Hi sral,

Sorry to hear about your Mom. Not being able to speak is very frustrating.
I have bulbar onset PLS. Mine started in Feb. of '04. My throat felt like it was closing up and I would speak through my nose. It only happened once in a while. Usually when I was upset or angry. It stayed like that till about Sept. of '05. Then I started to slur my words, but it wasn't too bad. I still could be understood. It got progressively worse and in Dec. of '05 I had to retire. I was getting hard to understand and workers were wondering what was wrong with me. Some thought I was drinking or loaded. All this time my primary doctor thought my problem was stress. It wasn't until Feb. of '06 that I went to a new primary and he suggested MND. I went to 3 neuros and finally came to the conclusion of bulbar onset PLS. By March of '06 there were letters in words I just couldn't speak anymore. First one I remember was the letter K. It became increasingly difficult for me to be understood. In Sept. of '06, I picked up a dry erase board and pen and have been using it ever since. I can't be understood at all. Sometimes my husband can understand a word here and there. ( So, it was a 2yr 7 mo. progression for me.)
I am sorry to be the bearer of bad news, but it has left me totally speechless.
I was praying it would isolate in the bulbar area, but this year, I have started having problems with my left leg.

Judith

 

[sral]

Dear Judith,

Thank you for your kind response. I'm so sorry to hear that you are speechless. This is not an easy problem.

My mom's first symptom was 2 years and 7 months now. They originally pinned it on stress just like they did for you. However, my mom kept insisting that she wanted all stones unturned and after 18 mths she got the diagnosis of upper motor neuron disease (up until the 3 year point, this neurologist will not call it PLS). Anyway, at the 2yr 2 mth point, my mom can still speak but is not always understood. Her speech is very slurred. Like you, I'm noticing that she is having difficulty pronouncing letters and so this is why I don't always understand her. She was on lithium for the last 6 months and her speech had only gotten slightly weaker. However, we decided to stop it and soon after stopping her speech got extremely slurred. She went back on lithium at a lower dose after one week to see if it made a difference and it appears to be abit better but not as it was before stopping the lithium. For now she'll continue on the low dose lithium.

By the way, I'm sorry to hear about the progression in your leg. My mom's leg started getting impacted 18 months (at diagnosis) after 1st symptom. Her walk is not good at all these days. I too pray that the disease would just stop where it is. Let's pray for a miracle.

Thanks again for your reply.

 

[BethU]

Hi sral,

By March of '06 there were letters in words I just couldn't speak anymore. First one I remember was the letter K. It became increasingly difficult for me to be understood. In Sept. of '06, I picked up a dry erase board and pen and have been using it ever since. I can't be understood at all. Sometimes my husband can understand a word here and there. ( So, it was a 2yr 7 mo. progression for me.)
I am sorry to be the bearer of bad news, but it has left me totally speechless.
I was praying it would isolate in the bulbar area, but this year, I have started having problems with my left leg.

Judith

Hi, Sral and Judith ... I am in the same prediment as far as some letters being impossible. K, L, and an initial G are the worst for me right now.

I am seeing a new speech pathologist, and she gave me a tip for being understood ... besides slowing way down, and speaking in syllables. She said to "emphasize the final consonants of a word." When I remember to do this, it seems to make a difference ... it keeps all my words from slurring together into one long growl.

I think I'll be in your boat soon, Judith. I have a light/writer on loan from the ALS Assoc, but it's heavy to carry aound. I'm going to try to get a better augmentation device ASAP.

Hang in there,
Beth

 

[sral]

Beth thanks for the tip. If you get any other tips please pass them on.

I notice that when I don't understand my mom and say "huh" on the phone, she puts more attention or effort into it and manages to make the word more clear. It's taking more effort these days.

Thanks again Judith and Beth.

Hang in there!

 

[BethU]

Hi again, sral ...

One thing to remember with your mom is that it is exhausting to try to speak when you have bulbar symptoms. You have to dredge air up from your lungs and force it out to make sounds, while you're trying to make your tongue and cheeks do all kinds of delicate maneuvers that they're no longer capable of.

I have about 5 minutes of "conversation" available. After that, my throat seems to clamp down, I start getting prolonged coughing spasms and choking, and my voice quality and speech gets even worse. My voice crackles up and down like an adolescent boy whose voice is changing.

Your mom would probably appreciate it if you carry the burden of the conversation. Ask her questions that don't take a huge amount of explanation. and remember how hard she's working to try to speak. Listen to her very attentively, and you may be able to learn which sounds she has most trouble with, which will help you "interpret" her speech. That willl help, too.

Beth

 

[sral]

Beth,

I truly appreciate your advice. Thank you for your kindness in sharing.

I'm sure that it is difficult for her to speak. She cannot speak for a long time because as you mention it must be exhausting. As much as possible, I try to finish the sentence when I know what she means. I will be more conscious of asking her questions that require a 'Yes' or a 'No' instead of an answer. What I find is that she is raising her voice more. I remember once asking her why she was getting excited and shouting and she said she wasn't shouting but that it was the only way she could speak. I notice that she has difficulty with 'r' and 's' which are biggies.

Her speech has definitely come to just words or a few sentences at most. If it would stop here, it would be wonderful. At times it gets nasally but the nasal aspect is not constant. She was more nasally last year. What's interesting is that she seems to have the strenght to project because she can do it loudly, it's just forming the words. Of course this is due to the fact that her tongue and cheeks don't work the same anymore. She too breaks out into a cough at times.

Anyway, all of your tips and advice are great. They help me be more considerate and understanding.

 

[sral]

Beth,

If you don't mind me asking, how long have you had difficulty with your speech? Is it limited to speech or is swallowing impacted too. At this point, my mom has not complained about choking and can still eat. However, over the past year I have noticed that her food went down the wrong way about 3 times.

 

[Judith]

Hi Beth,

How do you like the Light/Writer? I thought about that device, but thought a device where I can create different catagories would be faster to say what I want to say.
In fact, The Rep. from Words+ will be here this morning to deliver my device. I am getting the Say-It-Sam Communicator Version 2 device. It is handheld and only weighs 14oz.
I picked it because I am still mobile and it will be easy to carry around. I looked at many and liked them, but like you, they were to heavy to carry around.
Hope you find one you like. (DynaVox has a handheld too. It's called the Palmtop3. I liked it, but the customer service in my area wasn't good at all.)
FYI- In case you didn't know, if you're on Medicare, they will pay 80% of a "dedicated" device. Your Supplemental should (not always) pick up the remainder.

Judith

 

[BethU]

Beth,

If you don't mind me asking, how long have you had difficulty with your speech? Is it limited to speech or is swallowing impacted too. At this point, my mom has not complained about choking and can still eat. However, over the past year I have noticed that her food went down the wrong way about 3 times.

Hi, Sral ... I can give an exact date that my slurring started: March 16, 2006, when I woke from major heart surgery.

For the first 9 months or so, the slurring was noticeable to others (not to me), and I also had to gasp for air after every couple of syllables. Eating problems started around Sept. 2006, when I had trouble chewing solids. In January 2007, chewing became easier, but I began to have trouble swallowing liquids.

In June, 2007, I had minor surgery on my ear, and when I woke up from the anesthesia, my speech was much, much worse than it had been. (It had been improving with therapy.) At my next appointment with my speech therapist, she said, "What the heck happened to you?" It's been downhill ever since.

So, in my case, slurred speech started March, 2006 Chewing problems, Sept. 2006. Problems swallowing liquids started almost a year after the speech problems began, February or March 2007. I also have breathing and eyesight issues, which are ongoing.

Your mom is lucky to have you supporting and helping her. I think ALS must be at least as hard on caretakers as it is for PALS. Hang in there!


Judith: I like the light/writer, but, as you know, I find it too heavy to carry around with me. And it is difficult to use outside the house, as I have to set my purse down, put it on a flat surface and start typing. The best part is that the person you are talking to can read from the other side as you write, so they don't have to wait till you've pushed the speak button. When I'm away from home, I just spell out words that people can't understand ... like "Quark" or "Korea" ... those K's just kill me. Or, write out what I'm trying to say.

Also, with the light/writer (but this may be true of all augmentation devices,) it can't pronounce a lot of words correctly. Mine can't even say "Elizabeth." So you have to spell things phonetically. For my own name, I have to type: E [space] LIZ [space] UH [space] BETH. Then it will pronounce it correctly. But it takes me a while to figure out the phonetics on new words ... and I'm never sure what it is and is not able to say.

I use it mainly for pre-programmed phrases, especially on the phone. I use, "I need an appointment with Dr. Whoever" when I call medical offices. When someone answers the phone, I hold my phone to the light/writer, press "speak" and it works. Or, I use "I have difficulty with my speech, so please bear with me," then I start talking.

I see a new speech pathologist next week, and she will be getting me going on a more elaborate device, such as the ones you mentioned. I'm really eager to get something faster and more flexible. I'm going to print out your comments, and take them with me for reference. A light, hand-help device would be marvelous.
BethU

 

[sral]

Thanks Beth.

My mom's speech problems started in Jan 06, a few months before yours. She can still be understood although her speech is slurred and she has difficulty with certain letters. As I mentioned before when she stopped the lithium her speech started getting really bad and it was almost not understandable. However, one week after stopping she started lithium again at a lower dose and her speech seems a slight bit better.

My mom however, has progressed from speech to limbs. She still can eat as normal and does not complain of choking. She has always said that liquids are more difficult but she can still drink. The issue is that 18 months after speech, her legs became impacted and although today, 2 years and 7 months later she can still walk, her balance is awful and she cannot walk for long distances. She is in great need of a cane but has not requested one yet.

You are fortunate Beth that in the over two years your progression has been limited to bulbar. You mentioned that you have problem with your eyes, have you been tested for myasenthia gravis (MG). This is has similar symptoms to ALS but impacts the eyes as well. This disease is TREATABLE. If you haven't been tested, it probably wouldn't hurt. I guess from your progression you've been told that it is PLS and not ALS.

Anyway, thanks again for everything.

 

[Kenny H]

I wrote somewhere else that I recently started up on Baclofen. It seems to be working.

 

[BethU]

[QUOTE=Kenny H;48005]I wrote somewhere else that I recently started up on Baclofen. It seems to be working.[/QUOTE]

Hi, Kenny ... is it helping with bulbar symptoms, or with excess saliva?

BethU

 

[Geo]

If i holler i do better ,i have learned by enunciating in a loud manner seems to help and making sentences with fewer words helps . Correct me if im wrong but Windows XP has a Program which speeks what you write Its called Narrator ,can someone use a Laptop and utilize this ? Geo

 

[sral]

Geo,

My mom does the same thing. If I don't understand her she speaks loudly and it becomes clearer.

By the way, nice to have you back on the forum!