New here with questions about speech

[callieB]

Hi!

I'm wife of a guy who we believe has PLS. He's 57.

Onset has been bulbar -- years of slowly slurring speech and difficulty swallowing. So far no problem with his legs or balance.

We as a family can barely understand him now. Last week get got a cold, and with his nasal passages clogged, the 50% of his communication we could understand, dropped to less than 20% I would say. It was very scary and of course frustrating.

We have an appointment with a specialist soon but in the meantime I am looking for ideas.

Would it make sense for us all to learn something like cued speech so he could communicate better with us without electronics like a keyboard or writing? Cued speech requires someone to be able to make fine motor movements with the hand -- different hand shapes up near the mouth, rapidly moving.

In PLS does the patient typically lose his fine motor skills in the hand? It doesn't make sense to spend the hours required to learn this, if he's going to lose the ability to move his fingers well.

What do you think?

 

[Jim Mulligan]

That's impossible to answer, as PLS progresses differently for each person. For instance, I can talk and swallow fine, but my legs and balance are useless.

My advice is take whichever course of action will decrease the frustration the most.

Jim

 

[callieB]

Thanks.

I spoke a long time with someone yesterday who teaches cued speech for a living. I didn't realize how much cued speech relied on being able to mouth the sounds. You show cues with hand signs as well as with your lips and jaw -- it is essentially enhanced lipreading. So I am not sure my husband will be able to use it. I think his fine motor skills in his hand may be fine for at least a few more years, but already it is difficult for him to move his lips and tongue.

 

[RooRoo]

My speech was one of the clues I had that something was wrong. I slurred and progressively and sounded drunk. I noticed I could not sing anymore...my lips wouldn't form the words.
I started going to a speech pathologist where they suggested voice banking. How could I know what I would want to say?
I finally got a $25 app called Assistive Express, which I use all the time now. My speech is now unintelligible. That is the hardest and most frustrating effect of this disease for me. You can save often used phrases...works for me!

 

[callieB]

Thank you for your comments, RooRoo! I'm sorry for your loss of speech and can sympathize with how frustrating it is. It is so frustrating for me trying to understand what my husband is saying and yet I know how hard it is for him, how he struggles to communicate because he's a really social, very verbal guy.

Assistive Express looks GREAT. I think we will get it right now.

 

[callieB]

I think we are too late for voice banking. I don't think there'd be a point. You really can't understand what my husband is saying half the time.

 

[Nikki J]

Forgive me I probably missed something. If his hands are good is there a reason not to use a tablet and text to speech? If he can keyboard it would be easier for all of you? It is not much of a learning curve

 

[callieB]

Right now he can keyboard just fine but slow. I was hoping for something more low tech. Cued speech or ASL both seem more natural than talking to your kids through synthesized speech or texting them, is all. I was hoping cued speech would be a good solution, but I tried doing it today and I realize he wouldn't be able to maintain the stamina needed for very long (keeping his hands up by his face). Honestly I'm in a bit of denial.

 

[dalvin]

Callie,
I second what RooRoo said about Assistive Express. Been using it since January. I find it easy to use and has word anticipation, start typing in a word and several pop up to chose from, if your word isnt there, continue typing until it is, thing click on it. saves energy typing in the whole word. comes with three voices to chose from so he can have fun intertaining kids and grandkids

 

[MaxEidswick]

>Honestly I'm in a bit of denial.

iiwii

 

[billbell52]

I have Bulbar PLS. Onset started when I was 51. Bulbar PLS is a rare form of PLS. About 7 to 14 people get it a year in the US. Bulbar ALS progresses quickly so it is usually declared PLS if you don't progress quickly after 2 years. My legs and arms started being affected after 4 years. The progression in my legs was pretty quick. I went from a cane to walker to scooter over a period of 18 months. I now use a power wheelchair (PWC)100% of the time. My right leg got really weak so that is the reason for the quick progression. My wife and kids can still understand short sentences. If it is complicated I text them. I do have a speech program on my PC I use for phone calls and one on my Android tablet. I rarely use them. I just use text on my Samsung S4 phone.

 

[callieB]

Hi Bill and thank you for responding!

I had read some of your story elsewhere and thought your progression sounded similar to my husband's.

Wow... only 14 people a YEAR with Bulbar PLS?

I said earlier, we *think* my husband has PLS. His symptoms started probably 4 years ago -- 2010? Just slurred speech. No one knew what it was and they thought it was due to side effects of drugs he was taking.

It's becoming markedly worse lately. He's had a couple losses of balance in the past few weeks which is new. He's had heightened reflexes -- really super reflexive -- for many years.

Over the past 4 years he's been dealing with a host of other serious health issues, which took precedence over this weird slurred speech thing. Man, when I think back to how minimally his speech was affected back then, I can't believe I even noticed it! I really hate not being able to have a conversation with my husband.

We should be going to a specialist to see if we can get a definitive diagnosis, but as rare as bulbar onset PLS is, it is a diagnosis that seems to fit. Unless it turns out to be slower moving bulbar onset ALS. Jeez.

 

[callieB]

Bill -- do you use a TTY service on the phone? The kids they set up for deaf/speech impaired people? I've been looking into that.

 

[RooRoo]

Please report back what you find out about TTY!

 

[billbell52]

Sorry for the delay. I didn't see the message. I use a PC program call NextUp Talker. I got it years ago. There are other programs but this seemed to work best for me. There are 2 ways to use it for phone:

1. Use a cellphone. I put it in speakerphone mode and put it near the speaker. I have numerous phrases stored it Nextup Talker. I either use those or type my response.
2. I have a Skype account. I can call people on Skype. I have NextUp Talker setup to talk directly to Skype. If the person you are calling has Skype it works better since you can use chat mode and video mode.

If you go to an MDA clinic check with the speech therapist. In Texas you can get funding for a speech device.