Old 10-01-2018, 04:43 AM #1 (permalink)
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Default Bulbar onset PLS: how long before speech is gone?

My husband was diagnosed in June with PLS. He had mild speech difficulties (slurring when tired) starting a year prior that have progressed since. He is increasingly nasal and slurred; he must speak each word slowly to be understood. He now has some toe drag with each foot and needs a cane for stability. We pray his arms and hands will be the last affected as he is a potter and his art means so much to him. My question is for those whose symptoms began with speech: how long does he likely have before his speech becomes unintelligible? I know PLS is different for everyone, but my husband had hoped to record enough of his speech to synthesize it for use when he can't talk anymore, and it seems to be declining more rapidly these last couple of months.

Thank you for any insights.
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Old 10-01-2018, 09:41 AM #2 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Sorry. I don't think there's a reliable answer.
Just be sure to take care of him and don't let him get exhausted. Feed him well and give him good bed, so he can have as much strength as possible.
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Old 10-01-2018, 02:31 PM #3 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Very sorry to hear about your husband, Anita. Do you mean PLS or ALS? Just double-checking since bulbar-onset PLS is rare.

You might consider work on how he will access his computer as he progresses, e.g. switches, a virtual keyboard, head mouse, etc. and explore apps where he could still create designs that someone else could form/fire.

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Old 10-02-2018, 02:15 AM #4 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Thanks, Laurie.

Yes, Michael has bulbar onset PLS, not ALS. At least as far as the neurologist at the ALS Clinic can determine at this time, based on the (relatively) slow progression he has experienced. But she said he'll have to go four or five years more without lower neuron involvement before she can definitively say it is PLS and not slow-developing ALS.

I understand that bulbar onset ALS is typically one of the fastest to progress. I wondered if anyone here has had experience with bulbar onset PLS, hoping for a relative sense of how quickly he's likely to lose his speaking ability.

Good idea to research creative apps that Michael could continue to use to design pottery even when he can no longer make it. He's just now beginning to work with an iPad for speech assistance.

We're hoping to find something that can give him enough improvement in his speech, even temporarily, that he could successfully record enough speech to make his own voice the voice for the app. The Patients Like Me site shows that some PALS have had bulbar improvements with the use of Requip (ropinirole), a medication approved for Parkinsonís disease, Anyone in this PLS group have experience with Requip?

Thanks,

Anita
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Old 10-02-2018, 04:06 AM #5 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

You may also want to look into Nuedexta. It seems to help bulbar symptoms for some people.

I wouldn't worry too much about rushing to record what is still going to be a pretty mechanical voice. Most PALS don't get that done, and life goes on. Whether he uses an enriched voice or not, even just recording some key phrases that you can integrate into his TTS system could mean a lot. If he gets the whole quota done, it could be a slightly better voice, but there's not a huge difference and he might have other things to do.

There is not a lot of data for predicting speech decline in multifocal PLS with bulbar onset, but he could certainly plateau speechwise at some point.
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Old 10-04-2018, 08:29 PM #6 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

I actually don't remember how long it took before my voice was completely gone--about three years, I think. In the morning when rested, I may be able to speak a few sentences that people who spend time with me can understand. Talking is very tiring, as it seems that I'm working to force enough air out to speak. I now have some tongue atrophy, as well as facial muscle weakness. Even though it's very frustrating to be unable to speak, it's amazing what adjustments a person can make.

From the time of diagnosis, I've been unable to blow into a spirometer so getting an accurate FVC measurement is impossible. This is a constant point of contention with my doctors. I don't seem to have breathing difficulties and purchased an oximeter. Once in a while my reading drops to 91% when I have been sleeping soundly, but normally doesn't go below 93%. I was extremely ill with a non-stop cough this winter and was refused admittance to the hospital because my oxygen level was too high. I even requested an arterial blood draw which was normal.
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Old 10-04-2018, 09:21 PM #7 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Thanks for the advice about Nuedexta, Laurie. Michael has his 3-month follow-up with the neurologist very soon, so we want to talk with her about various possible options.

I also appreciate your thoughts on not putting too much emphasis on these voice databank recordings. It has created some real anxiety about timeline, and maybe it won't make all that much difference. I'd imagined it would significantly improve the sound quality, really capturing his tonal quality, but I gather that isn't really realistic, then?

This voice recording more my hangup than his, I think, as Michael has always been a verbally agile person, loves wordplay and inside jokes and is very expressive. Already his voice has been robbed of almost all tonal quality and range. He can't sing at all anymore. I am quite devastated at the thought of not hearing his real voice in the future, more than most other ramifications of the disease. But you're right that recording a few key phrases may go a long way to keeping his "voice" present in our lives.

re: a possible plateau, speechwise. Thanks for that note of hope. It means a lot right now.

Thanks for taking the time to share.

Best,

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Old 10-04-2018, 09:56 PM #8 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Thanks for sharing your experience. Michael, too, finds it hard work to force enough air out to speak. It definitely tires him.
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Old 10-05-2018, 12:59 AM #9 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

On the ModelTalker site, there is a demo link where you can generate some actual examples of what the voice bank output sounds like in a best case scenario (professional recording).

I understand what you are saying about hearing Michael's voice in the future, but I can also tell you that I can hear my husband's pre-ALS voice still, 4y after his death, without any help. I would imagine there is someone in your life of whom you can say the same.

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Old 10-19-2018, 03:39 PM #10 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

I have bulbar PLS. My symptoms started almost 8 years ago. I can still speak. My voice is slurred, weak and takes lots of effort, but I can still make myself understood most of the time. I think the major decline was in the first 2 years. So, a plateau is possible for your hubby.
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Old 10-20-2018, 01:24 AM #11 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

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I have bulbar PLS. My symptoms started almost 8 years ago. I can still speak. My voice is slurred, weak and takes lots of effort, but I can still make myself understood most of the time. I think the major decline was in the first 2 years. So, a plateau is possible for your hubby.
Thanks very much for sharing your experience. That really does give us hope. Michael's speech has worsened since his last 3-month check-in at the ALS Clinic, but it helps to know this may not continue to be a steady decline, or at the same pace. It is so strange how this disease takes a different course for almost every person. Praying for a plateau.

I see you are in Vancouver, BC. Do you see Dr. Briemburg at the ALS Clinic there?

Wondering what medication, if any, you are taking for your PLS symptoms (bulbar and otherwise), and what has been most useful to you.
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Old 10-22-2018, 10:16 PM #12 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

Hi Anita,
Yes, I see Dr. Breimberg. I take a compounded version of nuedexta plus a small dose of Escitalopram. I find that this combo helps with pseudo-bulbar affect (PBA), and maybe a bit with speech. You might want to join the Primary Lateral Sclerosis (MND) group on Facebook. We often have some interesting discussions about equipment, strategies, etc.
Regards,
Lori
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Old 10-25-2018, 03:06 PM #13 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

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Hi Anita,
Yes, I see Dr. Breimberg. I take a compounded version of nuedexta plus a small dose of Escitalopram. I find that this combo helps with pseudo-bulbar affect (PBA), and maybe a bit with speech. You might want to join the Primary Lateral Sclerosis (MND) group on Facebook. We often have some interesting discussions about equipment, strategies, etc.
Regards,
Lori
Thank you, Lori. Dr. Briemberg told us that the compounded version of Neudexta is no longer available because one of the ingredients used to compound it is an older no-longer-relevant drug that the manufacturer has stopped making. Are you working from a past supply, or did I somehow misunderstand Dr. B?
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Old 10-25-2018, 08:11 PM #14 (permalink)
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Default Re: Bulbar onset PLS: how long before speech is gone?

I sure hope she is wrong, although the quinidine part of it is kind of an obscure drug. I filled my prescription in July. I'll PM the details to you.
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