Just diagnosed with PLS

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Bobbie2

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Hi
I am a newbie.....any advise you can give me? Anything I can about my voice. I have no voice! I am going to a speech therapist! I have an app on my phone. But mostly I carry a pad and pen! Bobbie2
 
Hey Bobbie2! Welcome to the par-tay! Speech therapy is great. Very beneficial, but if you truly have PLS, don't realistically expect your voice to get better on its own.

You've found a great place with great people to ask questions and share your experiences...

Welcome! TB
 
I am sorry you joined this group but now that you have, Welcome! I am assuming your first symptom was your voice. If it is then you have Bulbar PLS which is a rare form of PLS. I also have Bulbar PLS. It slowly descended down my body. I walking started being affected after 5 years.

I worked with a speech therapist and did exercises for 5 months with no improvement. I then went to a speech therapist that specializes in people with motor neuron diseases (MDA/ALS). She said that speech therapy doesn't work for PLS or ALS. Her recommendation was to speak slower and use simple words.
 
Gday bobbie. I'm so glad you found us!
Speech is a bit of an issue unfortunately. I'm working on banking mine just in case.
I have a love for using big words, but as Bill says, small words. It definitely helps!
God bless, Janelle x
 
Thank you all for your input. I am glad I found you all.��
I am walking a lot to try and keep myself loose. I have great friends
That take me with them every day. I am working with a trainer starting
Monday doing stretches. He has worked with ALS people in the past.
They say that I should be as active as I can, do you all agree with that?
Any advise you can give me would be welcome! So glad I found you❤️
 
Hi Bobbie, my best advice would be that you continue to remain as positive as you seem to be now.

Also, be sure read through these threads -- and do key word searches as needed. The folks here can share experiences and insight into PLS that you will find nowhere else (this is the stuff you'll never learn from any neurologist, I can promise you that). The best place to turn is to those who endure this madness (and it is madness!) on an everyday basis.

Mike
 
Mike, thank you for your reply. I am not always so possitive. I am on an
Anti-depressant , I can't stop crying at times when I can't b understood!
 
Stretching exercises are very helpful. You should remain active but take common sense approach to it. Don't endanger your safety and don't be afraid to use aides (cane, walker, scooter etc..).

PseudoBulbar Affect (PBA) symptoms are frequent, uncontrollable outbursts of crying or laughing in people with certain neurologic conditions which includes PLS. There are medications you can take.
 
Hi Bobbie
I too have lost my voice and swallowing. Have your speech therapist do "vital stem". It's like a TENS unit for your throat. It has helped me. good luck.
Jack
 
Vitalstim may help with swallowing problems but will do nothing for speech. I did it for 10 sessions and it did help a little with swallowing but did nothing for my speech. My speech actually got worse but I think that was PLS progression and had nothing to do with Vitalstim.
 
Hi Bobbie-
I don't have the voice issues, so don't have any advice there. However, you are doing the right thing in being active. Don't overtax yourself and make sure you do lots of stretching and range of motion exercises. I've experienced great benefit with having a physio help me with balancing exercises and it's really helped me with an awkward gait.
Mostly I just wanted to welcome you here, disappointing as it may be to find yourself here(!), and know that there's a lot of knowledge, reassurance and experience people have to share.
 
What is Vital stem? Has it helped with Speech? I would give anything to have my speech back! Awhile ago I read about Juvanon helping a caregivers wife.......and she got her speech back. But I went to look for the the post and it was gone?
As I said, I really want my speech back. Has anybody had any luck with apps you type and they speak what you typed I
Have not had any luck with those they talk too fast. Mostly I go around with pad and pen. Any help on this issue I would greatly appreciate! I am so glad I found you all....... I am so grateful! Thanks again Bobbie2
 
The posts are still there. You are misspelling it is juve not juva. Please note that person posted 4 times total on this form all of the posts were recommending this substance. When someone comes here and gives a testimonial and then never posts again proceed with caution.
Losing speech stinks no doubt. And text to speech is slower than we like. Some people with ALS have seen some temporary improvement with nuedexta but I don't know of anything that really brings it back. I am so sorry
 
I have a program called NextUp Talker. It has settings to slow down (or speed up) speech. I use a laptop computer, type what I want to say, and click on an icon that says, "speak input." I think it is available as an app. There are more sophisticated programs on the market, but this one is simple to use.
 
Billbell52-
Thank you for your reply. How long did you have before the PLS descended down your body. Did you have speech
Issues also? I would like to have my voice back, do you think there is any chance of that. What has been your experience
With PLS? All the best, Bobbie2
 
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