January 23, 2022 at 4:57 pm #21338
Research has shown that of all the various ALS symptoms (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) losing the ability to speak (dysarthria) is frequently identified as the worst aspect of having the disease.
It’s something I began struggling with six years ago. And like most other ALS patients with this symptom, I was told by my medical team that eventually I would lose the ability to speak and from that point on, assistive technology would speak for me. But I decided to at least try to find a way to maintain my speaking ability – – and so far, I have.
I know other pALS have found their own way too, so I will share my journey and practices below and invite members to add their own tips and experiences as well. Let’s learn how to ‘keep on talking.’
January 23, 2022 at 5:05 pm #21341
I’m not a medical expert, and everyone’s ALS symptoms vary from person to person – – so what is working for me may or may not work for you. But, if you’re anything like me… I figured, what’s the worst that could happen? I could lose my voice… ?.
1. Premier option: “Living Speech Series for ALS”
This is an excellent online program covering the basics of how to retain your voice. Developed and taught by Andrea Caban, a professional voice coach, it comes with 4 educational-follow-along videos, a multipage booklet, and ongoing access to the voice coach. I took the course and it helped me right from the get-go. It’s $200.00 and takes 4-weeks to complete (but you keep practicing and integrating for months onward). Think of it as four $50 sessions with a voice coach who understands the challenges of ALS.
I wrote about it here:
ALS Dysarthria? Use These Innovative Strategies to Keep on Talking!
2. The DIY option: lots of blog posts and YouTube videos
I’ve since written several blog posts about my “voice journey” and share links to YouTube videos that continue to help me. You can do this on your own, but you do need to be self-motivated and dedicated.
a. Breathing: learn to change from upper chest breathing to deeper, abdominal/ribcage breathing. Also called diaphragmatic breathing. Start here: How Blowing Bubbles Helps Me Breathe Better with ALS
b. Pitch: you might find success by speaking with a slightly higher or lower tone. Try saying “Zee, Zaah, Zeye, Zo, Zoo” several times with different pitches, looking for one that feels easier on your vocal cords. That will be the new one for you – – I found a lower pitch worked best for me.
c. Pronunciation: My first impulse was to try to strengthen my tongue or make it work faster. Don’t waste your time. Instead, learn how to make it easier for your tongue to form each word. Which means moving the sounds (“K”, “D”, “C”, “G”, etc.) more forward in your mouth. For example: the German language is mostly guttural – – waay back in the mouth and throat – – difficult for us. But with an Irish accent, words are formed in the front – – easier for us to do. So, I watched videos for actors on how to adopt an Irish accent and even watched Irish actors in movies on Netflix! They were my models!
d. Practice! – – don’t give up! Do some talking every day. Learn what time of day is best for you (AM for me, by evening I begin slurring words). Be mindful of your posture. A personal voice amplifier might help:
Listen, Can You Hear Me Now?
Hooray! You Can Hear Me!
If you go to an ALS Clinic, let the Speech-Language therapist know you are trying these techniques. They can suggest even more. The kicker is that when I told the therapist at my clinic, she said, “oh, we know and teach those techniques to patients who had throat surgery.” I asked, why these are never offered to ALS patients? She answered, “Because there are no studies showing they work.”
Well so far, they are working for me… and I’ll keep at it as long as I can! I hope my tips are of help to you too. Let’s help each other keep on talking. I look forward to reading your comments and tips.
January 25, 2022 at 3:14 pm #21349BillParticipant
I’ve had two visits with speech therapy plus lots of clinic visits. I received no advice on improving speech. Mostly telling about technology. My problem is tongue atrophy plus heavy mucus at times. Tongue much worse when tired.I had recently added a good iPad text to speech app to learn.
January 26, 2022 at 10:58 am #21354
Bill – – yes, it’s too bad that Speech therapists in the clinics don’t offer voice techniques earlier and instead focus on tech and AI communication solutions. Patients should be more assertive and ask for specific voice techniques and not be sidelined into giving up so soon.
I’m sorry you are dealing with tongue atrophy – – in your case, the tech and AI are helpful.
January 25, 2022 at 5:14 pm #21350Lisa BonahoomParticipant
Thank you Dagmar. We have so much in common. I appreciate your writing! I started slurring words 6 years ago, and have tried everything to keep my voice. I have been pretty successful so far. I do know it’s getting harder but I am happy to still be here! Lisa
January 31, 2022 at 4:57 pm #21371AA20Participant
Thank you Dagmar and Lisa.
Dagmar – Can you point me to the article which describe the “voice journey” blog and youtube videos.
Lisa – Any suggestions how you have managed to keep voice would be appreciated.
April 20, 2022 at 3:20 pm #21794Pauline KazaParticipant
<p style=”text-align: left;”>My dysarthria began early on about four years before diagnosis. At that time I didn’t know what was going on. So I began searching on google for causes of compromised speech. A lot of SLP’S came up. So I chose a couple and followed on utube with them every day. One was Donna Durbin an accent coach .
The other one just happened to have a video of dysarthria. I am still talking. most days really good. With this disease you have to be persistent in your search for making life better. Know your disease and your body. You have to be your own advocate. Search and search for things that you think might help you. Don’t be at anyone’s mercy. We still have a brain, be creative and use it. Pauline kaza</p>
April 20, 2022 at 3:28 pm #21797
Bravo Pauline! I like your attitude! …and am happy to read that you were able to find the resources that helped you early on.
April 20, 2022 at 8:24 pm #21800Pauline KazaParticipant
Find a SLP who is familiar with our disease. It may take a few tries, but is worth it. Eventually you’ll be able to do the exercises on your own. Or just go for it on your own. On your own, you may find out how independent you can be. Pauline
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