Voice changes

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EricInLA

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I am experiencing some kind of something with my voice - the best I can describe it is that at certain times of the day I sound like Barry White - and I am trying to figure out if this is what voice weakness is, or if there's any chance it is allergies. (For those who don't know the great Barry White, I would describe my voice as gravely or raspy or just low pitch) It is sometimes accompanied by mucus - which is why I was hoping it was allergies - and I often have to do some throat clearing which improves things temporarily. There is also some throat irritation - not like sharp pain of a sore throat - and I've been taking lozenges to help with that. And fatigue.

I am 4.5 years into MND symptoms, and 2.5 post-diagnosis (slow progressor). To date my symptoms have been mostly in my right arm and hand, which are now both very weak and atrophied. This throat thing is new. I am not slurring my words, and my pace of speaking has not slowed. So, I am wondering if folks could share their experience with a weakened voice, and whether anyone's voice progression looked like this. Thanks.
 

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Eric it sounds to me, at this point, more like breathing capacity decreasing, rather than tongue involvement.
Is it possible you have picked up a virus of some kind? Maybe time will be the tell on that one.
The fatigue on top alerts me about breathing.
When was your breathing last evaluated?
 

Bestfriends14

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I concur with Tillie. It sounds breathing related and when the breathing is not sufficiently supported, fatigue can set in. Any appetite changes?
 

EricInLA

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Interesting, I hadn’t thought about breathing. I haven’t had that tested in a while - I don’t think they tested that at the last clinic which was almost 6 mos. ago. Virus is possible but my doctor tested for the most common ones at the moment and I was negative. No appetite changes. I’m hoping this is allergies.
 

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Yes, allergies could cause your breathing to be a bit more laboured and so cause these changes and the throat stuff even.
 

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Eric, are you talking about voice fatigue at the end of the day or general fatigue?
 

MarsyasWeeps

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Hi Eric, A hoarse voice, sore throat and thick mucus were the first clear symptoms of my Bulbar MND that finally got me to the doctor. Whilst the hoarseness has gone along with my speech two years later, I never regained my singing voice or true intonation. Hyper nasality and slurring followed. My advice - bank your voice if you have not already done so. Now. My speech therapists advice was rest the voice significantly, cut irritants like sugars and caffeine, and see if it makes a difference - a short vow of silence. Certainly, check your ventilation and swallow, as these should be regular checks anyway, but do not discount the potential onset of Bulbar symptoms. All the best.
 

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@MarsyasWeeps I was talking about the difference between the issue being with breathing compared to the tongue. the bulbar region of the brain does control breathing as well, so technically it all ties together.
However, respiratory symptoms can also be due to weakening of the diaphragm and intercostal muscles and that alone can result in the hoarse voice.
Thanks for bringing up the point about voice banking, the earlier you start the better for sure as you don't want to overtax the use of all those muscles, so having the time to do it really helps.

Oh and welcome to the forum, I see this is your first post here!
Feel free to start a thread to introduce yourself and where things are at for you.
 

EricInLA

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Kevin - It's not just at the end of the day. My voice just seems raspy and my vocal range limited at all times. Another way to describe it: Talking quietly is very strained. I am able to talk at full throttle OK, though sometimes some trailing off at the beginning or end of sentences. I can still disguise this thing for now, but I can 'feel' my hoarseness at all times, and am downing lozenges pretty much nonstop.

MarsyasWeeps - Thank you for your response. It's the type of response I feared I would get, but as they say, don't ask the question unless you are ready for the answer. In any event it's the type of experience and info. I'm looking for. I have started to experience some salivation issues this summer, so I think I am already in the bulbar stage (I was diagnosed as limb onset). I did complete my voice banking about a month ago, though I didn't do the optional additional part where you record personal phrases. Maybe I will still do that.
 

MarsyasWeeps

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If I could go back and record my personal phrases I would. I was not quick enough, I'm afraid and that will always gall me. Keeping an positive, open mind but a precautionary response is a balancing act I'm not really made for, but we try don't we?
 

EricInLA

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Yes, MarsyasWeeps, we do try indeed. We don't have much choice I suppose. For some reason we have been given this fate, and we have to make the best of it. It's crazy that I delayed voice banking for over 2 and a half years, thinking I couldn't possibly lose my voice, and that it wouldn't be nearly as meaningful as me talking in the moment, despite everyone's advice to do it immediately. I only did it a month ago, with the help of Team Gleason (a U.S. nonprofit), and it may just have been in the nick of time.
 

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Eric, do you think you overdid things doing all the voice banking quickly?
 

EricInLA

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I doubt it, because it didn't involve talking much more than I might do on an average day. Maybe someone was watching over me, making sure my voice didn't go hoarse until I completed that task.
 

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It was just a thought as I know some people find it is a lot of work.
 

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This is for those who still have their voice, or at least are able to speak clearly. My husband's symptoms started in spring 2022, with slurred speech and coughing. By the time we received the diagnosis of ALS in August it was too late to bank his voice.
So, if you are able to speak somewhat clearly, you may want to consider voice banking.
 
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