What PLS Does to Your Voice

sing photo

Sing to him; yes, sing his praises.
    Tell everyone about his wonderful deeds. – 1 Chronicles 16:9

Primary Lateral Sclerosis. I keep saying it out loud, trying to make it sound common and familiar. No big deal.

But it is. It is a humongous deal that usually feels like it’s sitting right on my chest.

PLS has lots of nifty little tricks up its sleeves, but one of the most painful for me is what it is doing to my voice. I was really peeved when my swallowing was affected, but that’s been for so many years now that I’ve made a kind of uncomfortable peace with it. I guess I never realized that my voice was on the table, ya know? It never occurred to me that I could lose the ability to speak or sing.

My voice is changing in noticeable ways now. I’m beginning to realize that maybe it has been for a good while now, but I just never noticed it. Others did. I am hoarse almost constantly. The more tired I become, the worse the halting and slurring gets. It becomes really frustrating to try and talk. And I get tired ridiculously quick. Like within half an hour, sporadic speaking can literally wear me out for the rest of the day.

My singing voice is affected, too, but not in the same ways. I have pitiful breath control. My timing, while I’m singing, feels right on par, but when I play it back, I am always lagging behind, kind of sluggish. I don’t have the control over my voice that I had before. If I hold out a note for more than a few seconds, my voice begins to wobble up and down or in and out, all over the place, no matter how perfectly I focus.

These things are embarrassing for me. I love to talk. I mean like crazy-jump-off-a-bridge-for-it love. And singing. Oh, I can hardly bear to think of losing that. And so, I will keep doing it. I will keep singing with all the feeling that I can muster and pouring that out in song to a God who has that same crazy love for my voice. To Him, I will always sing beautifully, because I am singing in my heart.

And on that note…. my latest offering.


Dear God, please let me never stop singing, even when it’s just a bare whisper. I adore You. In Jesus’ Name, Amen…


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May God Bless You,


3 Comments on “What PLS Does to Your Voice

  1. Shelly, that song was so very beautiful ! Thank you for this blog and for the song. A few years back my arthritis, disabilities and pain issues forced me to give up my precious flute playing. I learned how to play in 6th grade and played through college and with our city band into adulthood. Giving that up was painful. I don’t have the best voice but sing hymns to God as a form of worship. I too believe God hears our music coming from our hearts even when breath falters and words are mixed up or forgotten (in my case anyway !) Your blog post and beautiful song lifted my spirits today. Thank you and God Bless !

  2. Shelly, you have a beautiful singing voice and I love your sweet speaking voice. Your family is blessed to get to be with you every day.
    Love you so much,

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