April 19, 2019 at 12:28 pm #11572DagmarKeymaster
As the ability to speak begins to deteriorate in ALS patients, Speech-Language Pathologists (SLP) will help them to use other forms of communication and devise ways in which the person can continue to use their own voice for as long as possible.
Have you worked with a SLP to help your speaking issues? What did you learn and what can you share with those who are just beginning to have speech issues?
Please share your comments in the reply box below.
April 21, 2019 at 10:50 am #11583bodhiParticipant
SLP is not available where i live. I get most of my resources and tips from the internet. So i just purchased an online training course with instructional videos called ‘The Living Speech Series’ for ALS by Andrea Caban, which you recommended in your blog, cost 200 $.
Alas – it was never mentioned that those initial breathing exercises, leg and arm stretches etc. may be completely impossible to perform for many of us. Lying flat on my back I already feel I’m suffocating in 10 seconds…then turning legs to one side, one arm and torso to the other side touching armpit with other hand – ha, wonderful in my healthy days when i did yoga…kneeling and stretching arms forward – again impossible. Resting on knees and arms and bending arms, lowering to the ground, omg! Congrats if you still can do those contortions and are a slow progressors. All I wanted is learning how to be able to speak a little longer, right now after seeing the first videos and exercises i don’t know whether to laugh or cry, so i laugh – some more wasted $$ ?? There should be some warning regarding to the suitability of this program or at least some modifications offered to accommodate those of us who are not as strong or flexible anymore!
But I am tough, hate giving up so easily, will try to modify…
Any suggestions or experience shared with this are welcome.
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April 21, 2019 at 11:15 am #11587DagmarKeymaster
Hello Bodhi, Don’t give up! I am sorry that you encountered frustrations during Andrea’s first video – – those positions and breathing exercises are not “cast in stone” or required – – they are suggested positions so that you can better identify the different areas our rib cage moves when we breathe: upper chest, mid-back and lower ribs. If you can sit/lay in a position that is comfortable for you, and practice 30 sec. or so of breathing initiated from those areas – – then you’ve got the first step accomplished.
Andrea Caban has worked with many ALS patients and I believe would be happy to offer you alternative positions and options to accommodate what your body can/can’t do due to your ALS. We all progress differently and always need to adapt for our own body’s needs. Please email her with your questions – – she may even be able to Skype with you.
What are your current physical limitations? (if you’d rather private message me at this point, please do!) I am no expert, but since I have been through the course and am “still talking” 🙂 I would be happy to offer my own suggestions for alternative breathing positions. (there are many!)
What her course offers are the key lessons in: learning to initiate speaking from the lower ribs/diaphragm instead of upper chest area, moving certain consonants and words more forward in the mouth, changing your pitch (higher or lower) and to speak more words in each breath (longer sentences). It took me 4 weeks to “grasp” these concepts, another 4 to retrain my body & tongue, and the rest of the year to hone the skills. I had to let go of 60+ years of old speaking habits and learn a new way.
So don’t give up. Do let me know if you were able to connect with Andrea. And do let me know if I can be of further help. We are in this forum to support, share and learn from each other.
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