Saturday, March 3, 2012

Keep Singing as Long as You Can!

A photo that appeared in a local newspaper of one of the choirs in which I have sung. And, nope. I'm not in this pic. 

Reader Kelly recently asked this excellent question:
     I have a question that may not be of interest to your entire following, but if it is, feel free to post the question and answer on your blog. I seem to remember that you mentioned having to quit singing in a chorus because of your Sjogren's and I was wondering if it was primarily due to a general lack of energy for extra activities or if it was something more specific to do with changes in your throat/vocal chords from the progression of the condition.  If the latter, what  was the nature of the change(s) and what remedies did you try before giving it up?  
     My singing voice has never been anything to write home about but it seems to be getting ever more unreliable. Luckily, I'm surrounded by awesome singers and am a pretty good pantomime artist so when I open my mouth and suddenly, unexpectedly, nothing comes out, I just lip synch with the rest of the chorus until sound re-emerges.

It's true - my voice has changed considerably since the onset of Sjogren's syndrome.

I had to give up singing  in choirs for both energy and vocal reasons. Then there were those times that I'd look at a piece of music (after being able to read music since I was ten) and not recognize the notes, so the occasional brain fog issue wasn't helpful either. 

I tried drinking more water during rehearsals and performances, and I also tried sitting on a stool instead of standing. Both of which helped but only marginally. My doctor recommended a biotene mouth moisturizing spray but that helped very little. I tried practicing the music by mouthing the words only and listening to the notes, which did lengthen the time that I did have a voice in actual performances. 

I have a cool mist humidifier in my bedroom, which I used consistently, and although it eased some of my dry cough symptoms, it seemed to have little effect on the quality of my voice. 

It seems as though lately, changes to the characteristics of my voice -- a husky quality creeps in -- is a pretty good indicator of my energy levels. Among my other symptoms: a strange cold sensation on my face and nose, a noticeable lack in energy, AND my voice just seems to become more raspy and hoarse. John can gauge my energy levels simply by listening to me speak. 

Here's what the National Institutes of Health suggests to protect your vocal chords in Sjogren's syndrome:
People with Sjögren’s syndrome can develop hoarseness if their vocal cords become inflamed as part of the disease or become irritated from throat dryness or coughing. To prevent further strain on your vocal cords, try not to clear your throat before speaking. Instead, take a sip of water, chew sugar-free gum, or suck on sugar-free candy. Or else make an “h” sound, hum, or laugh to gently bring the vocal cords together so you can get sound out. Clearing your throat does the same thing, but it’s hard on the vocal cords, and you want to avoid irritating them further.
I'd say that if fatigue doesn't make participating in your choir, lip synch away! And enjoy every minute being involved in such a rewarding hobby!

Has YOUR voice changed due to the dryness of Sjogren's syndrome? And what helps you? 


cherbear829 said...

I have noticed this problem also, but thought it was due to nodules growing on my thyroid. I learn more from your blog than I do from my doctors!

Jenny P said...

I've found in the past few months I've been clearing my throat before trying to speak nearly every time (which I think makes me sound SO pompous), so thanks for the tip on gentler alternatives!

I too had to stop singing due to vocal changes from Sjogren's. For me, my dryness extends down my throat, which has over time made my voice less controllable (I open my mouth and can't be sure what note will come out) and a dramatically reduced range (I suspect less elasticity in the chords). Drinking water, etc, does nothing for this problem. I just accepted it - I have other battles to fight and I was never a notable singer anyway. I have also found in the past couple of years if I have a little stress about speaking (like, being excited for a presentation or something) I'm DOWNING water like it's my job - my husband was the first to point this out. I guess my sympathetic response to the stress makes me drier.

Christine said...

I sing in a choir and my voice quality varies quite a bit because of my Sjogren's. I was told I also have vocal cord dysfunction in addition to asthma related to the Sjogren's so there are times I cannot even speak, nevermind sing. However speech therapy has been quite helpful in reducing those episodes. My singing voice improved dramatically on steroids.

Anonymous said...

My voice is a real indicator of what is to come. About 80% of the time, if I become hoarse, I can plan on the aching and fatigue REALLY to kick in. Generally a small "flare". I'm a school speech pathologist too and I NEED my voice "sweet and clear"...not like the gravely, croaky voice of the old witch from Hansel and Gretel! Nothing helps me except rest..

Anonymous said...

I was in a choir as well, when I was much younger. Skip ahead and I was writing and singing my own songs. Skip further ahead and I was in a studio. That was in 2004. I write country R & B and even for that I sounded like crap. I have COPD so I blamed it on that. What I couldn't understand was the cottony feeling in my throat. I forgot the words to my own lyrics. After a session in the studio I was wiped out. Back then I harbored feelings that I was seriously ill and had all of these things that I was trying to get out of the way for my children's sake. A patent,getting my real estate license, buying property, getting them in a good place - as good mothers - you know the drill. When the stdio ran off to New York taking my money with them, I had bigger fish to fry. By 2006 the guy from the studio in New York has called me a few times trying to work at an arrangement to sing here and through the magic of technology, he would produce it back east. I was so mad. By this time all I could say in my raspy, croaking voice was; " It's too late now". I hope he goes to his grave with a guilty conscience. I will live. I have insurance, doctors a diagnosis sand medications. My time for making hay is over. All I see now is a field of clover. I even know what songs I'll sing to my grandchildren. They won't care how bad I sound.

Kelly said...

Opening the mouth and not being sure what note will come out (if any) is one of my biggest problems and I always assumed it was because my musical ear was not good enough at matching pitch, but maybe some of it is related to dryness in my throat and the throat not responding to the messages the brain is sending about what note to produce. Hmmm.

@ Anonymous: I get hoarse very quickly when I talk or sing continuously, but I never thought to connect it back the other way, looking for a flare to follow unexplained/unexpected hoarseness. That is a good tip because I have often noticed hoarseness as a stand-alone symptom when I am actually feeling quite good otherwise and I usually ignore it or assume it's allergies or over-use. Now, I will treat it like an early warning sign from my body that something us up and try not to ignore it.

@ Jennifer: I agree, drinking water while singing doesn't seem to help much at all. Drinking copious quantities of water all day before singing does seem to help me a little to prevent hoarseness and give me a longer window of opportunity to sing. Also not playing tennis on a singing day helps both with fatigue and with voice issues, but tennis is my primary form of exercise and I play on a team so sometimes it's unavoidable that I play on rehearsal days. I try not to play on a performance day, ever.

Thanks Julia for posting my question and thanks also to everyone who offered their stories about singing with Sjogren's. I will keep singing as long as my chorus will have me!

Unknown said...

I seem to be an auto immune mess. First allergies, asthma, then Grave's Disease. Now I am newly diagnosed with miild/moderate Sjogren's. I guess it could be worse. My symptoms all seemed so unrelated: fatigue, dryness of my entire body:(, swelling of my hands, pain in my hips, etc. Only now after a few months am I realizing that my singing voice has also been affected. I'm a retired teacher who now only subs, so the talking is not as constant as it once was. I'm trying to decide if my voice and my energy will allow me to join a chorus for a tour to Italy this coming summer. I'm so glad to find this blog. I've tried the medication that produces saliva, but that is overkill. There is no way to sing through all the saliva in my mouth without choking.
My question is how often do you find the flare ups occurring? I know everyone is different, but I'm trying to figure out how to recognize one coming on.

Granbeckies said...

I am a voice teacher and a national vocal award winner twice. I am so distressed. Not only do my eyes have ulcers being treated by restasis, but now my voice has been affected. I used to be able to sing an e flat above high c and now I am lucky to get out an A. After singing a while, especially in my high range, I can't get my chords to phonate. If I try then I sound like a honking goose. Otherwise my technique is still excellent (at 61). I am using the biotene products and drinking more water and notify who directs me that I just have to stop singing sometimes to give it a rest and rehydrate. What medications can work for this?