Voice projection problems with Sjogren’s

Posted by jpuitti @jpuitti, Jul 15, 2023

Any others struggling with voice projection with Sjogrens ? My mother can only speak in a whisper at this point.

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Hello @jpuitti, Welcome to Connect. I'm sorry to hear your mother is struggling with speaking. I'm sure this must also be difficult for you trying to help her. @bomo mentioned have Sjogren's along with voice problems in another discussion here - https://connect.mayoclinic.org/discussion/how-do-i-successfully-get-an-appointment/ and may have some thoughts or suggestions for you. While we wait for other members with Sjogren's to share their experience, I thought I would share this site with you in case you haven't already seen it.

--- Sjogren's Foundation - Living with Sjogren's: https://sjogrens.org/living-with-sjogrens

Has your mother's doctor recommended any suggestions that might help with her voice?

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My mom did have speech therapy but it hasn’t seemed to help. No other suggestions have been made. I just wondered if this is something that happens with Sjogren’s.

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Is your mother on any medication for her Sjögren’s syndrome? I take Pilocarpine, and it does seem to provide me with more saliva. Also, I have added more water to my daily routine. It is hard to learn to drink more water as we get older.

Perhaps you could find ways of adding fluids to her diet? A pretty water bottle at her side table, or a glass of water at her dinner table might help. Helping her to understand about the connection between regular urination and bladder health would be of help. She may be withholding fluids to keep her from having to go to the bathroom frequently, which actually makes the bladder more irritated. A visit to a PT who specializes in bladder health might help her understand that these things are all connected. Does she worry about walking to the bathroom?

Those are two suggestions I hope you will consider for her.

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@patient101

Is your mother on any medication for her Sjögren’s syndrome? I take Pilocarpine, and it does seem to provide me with more saliva. Also, I have added more water to my daily routine. It is hard to learn to drink more water as we get older.

Perhaps you could find ways of adding fluids to her diet? A pretty water bottle at her side table, or a glass of water at her dinner table might help. Helping her to understand about the connection between regular urination and bladder health would be of help. She may be withholding fluids to keep her from having to go to the bathroom frequently, which actually makes the bladder more irritated. A visit to a PT who specializes in bladder health might help her understand that these things are all connected. Does she worry about walking to the bathroom?

Those are two suggestions I hope you will consider for her.

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Thank you. I will check into that medication. She does drink a lot of water.

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@jpuitti

My mom did have speech therapy but it hasn’t seemed to help. No other suggestions have been made. I just wondered if this is something that happens with Sjogren’s.

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Does she take any medicine or over-the-counter aids for dry mouth? Not having enough saliva creates difficulty swallowing.
This sounds like a problem that her rhemetologist or another specialist can advice on...
Good luck

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@rarelybees2889

Does she take any medicine or over-the-counter aids for dry mouth? Not having enough saliva creates difficulty swallowing.
This sounds like a problem that her rhemetologist or another specialist can advice on...
Good luck

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I was also going to mention these. I forgot!

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Hello,
I am 'newly' diagnosed with Sjogrens. Actually, I've thought I had this for years but couldn't get help, but now finally....a diagnosis! I have had problems with my voice for over 5 years now. I can actually completely lose my voice at times and be unable to speak. I have started Pilocarpine, which creates more saliva and seems to work, despite some mild side effects of sweating and chills when I first take it (for me). I know there is vocal therapy you can get through an Ear Nose and Throat specialist. I haven't gotten there yet, but I will. You might want to check to see if you can get your Mom enrolled in something like that. Not only is it terrible to lose your voice BUT my throat feels pretty bad and hurts as well, so she might benefit from seeing an ENT to find more symptom management. Hugs.

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I have Parkinson’s and have had voice changes down to a whisper. I had to change neurologist this year; old one retired.

He researched replacements for me and highly recommended a Neurologist/movement specialist. He immediately made recommendation that I take part in a LSVT GLOBAL Speech training program. I am currently in my 6th week, and it has been life-changing for me. I would recommend it to anyone. Ask your doctor about it. I only found 2 certified therapists within 35 miles and drive 70 miles round trip 4 days a week….a commitment for sure! I had committed to daily vocal exercises which is s must. Otherwise I will regress to old habits.

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Thank you for your response.
Unfortunately, my mom lives in Canada and there are no options like that anywhere near where they live.
Glad to hear this is working for you! Keep up the exercises!

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@jpuitti

Thank you for your response.
Unfortunately, my mom lives in Canada and there are no options like that anywhere near where they live.
Glad to hear this is working for you! Keep up the exercises!

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There are therapists who will do on-line sessions. You can check by searching LVST Global Loud

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