Multiple sclerosis and speech are not on friendly terms for me
MS disease progression has affected this columnist's ability to speak (and sing)
I used to sing — a lot.
Don’t worry, I didn’t miss my true calling. I could carry a tune, but that was about it. I was loud, and just like arguing, volume can make up for a lack of skill. My voice might not have been the best, but whether I was singing or speaking, it was mine, and I miss it.
I have a tendency to want to blame multiple sclerosis (MS) for all of my ailments, but I try to be realistic, too. For instance, I use reading glasses because I’m in my late 40s and everyone in my family does, too — not because of MS. However, I don’t think it’s a stretch to blame my deteriorating voice on my disease progression.
Thinking about MS and speech mechanics
Physiologically, there’s a lot that goes into producing distinct, intelligible sounds. Air has to be pushed past vocal cords, which in turn have to be flexed or relaxed appropriately. Next, the tongue, palate, and lips are involved in making the precise consonant and vowel sounds of each word.
There’s a mental aspect to all of this, too, which deserves its own column. Thoughts become words in our mind that are then expressed physically, through gestures, writing, or speech. The point is that there are many parts to speaking, and MS seems to have an effect on all of them.
Stiffened or spasmodic muscles in the abdomen and chest interfere with exhaling air past vocal cords that stiffen with fatigue. The result is a bark or bray instead of a proper laugh, and often a lack of volume or duration to make it through a single verse of a song. I occasionally wonder if I should make a whistle one of my routine accessories since I doubt I could shout for help if needed.
Tongue and facial muscles weaken quickly with MS fatigue as well. As I tire, my voice slows and I sound as if I’ve had too much to drink as I struggle to form words.
My handwriting was never anything to be proud of, but it’s really awful now and gets progressively worse as my writing hand weakens. I have noted that my voice follows a similar path. I speak as if I’m reading my own increasingly illegible handwriting. My writing trails off into a convoluted scrawl and my voice into a slurring whisper.
There’s a psychosocial aspect to it, too. I would never have called myself an extrovert, but between work and other social activities, I used my voice regularly. I still socialize, but not like before. Multiple sclerosis has a way of isolating its sufferers, and it irritates me in no small way to feel quarantined by a noninfectious disease.
I was never silent, but at one point, I was a bit more guarded with conversation. Now my therapists remark that they know when an exercise is difficult for me because I stop talking. I’d be an interrogator’s dream — if I knew anything of value and they could interpret my excited croak.
Writing this column isn’t quite the same as real social interaction, but it’s a wonderful outlet. It may be in published format, but I’m using my voice, and it helps. I’m grateful to you for reading it.
Thank you, I’m speechless.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Susan Darker
What a great article; your writing is wonderful!
Benjamin Hofmeister
Thanks for reading Susan! I plan on speaking through print as long as I'm able.
Ben
Libbie Bullock
Please continue to write and speak whenever you can. I relate to this so much. I am 56 and just now realized that I can't remember the last time I could finish a line in a hymn at church without taking a breath. I realize that since I started going back to karaoke once in awhile that I have lost my voice. When I get tired or stressed it is worse. I find fatigue not only robs my brain of forming the right words to express my thought, I wouldn't even have enough energy to make them audible if I could! I love humor and always used it in social situations when I felt awkward and nervous, but now sometimes I forget the punch line or lose my train of thought. I used to be an extrovert but now I am quiet. I am so glad I read this because I thought my personality had changed or I was more depressed than I thought. Now I know it is neither of these, it is MS. It still sucks tho.
Benjamin Hofmeister
Thank you for the comment Libbie. I often sound like I'm overexplaining because a simple one or two word answer escapes me and I end up having to describe rather than name a thing.
"Where's the....um...soft, thing with a bad attitude that sits in my lap?"
"Do you mean the cat?"
Victoria
Ben,
I. Hear you! Unfortunately,,I’ve had your loss of volume for many years, but don’t;t let it shut you away, I started to lose my volume,and later my speaking stamina,so now I choose my words carefully to communicate succinctly in a terrrible trembling whisper, but work out your voice,I’m convinced vocal cords work like other muscles. I haven’t stopped talking yet!
Benjamin Hofmeister
Hi Victoria! Thank you for the comment. I don't plan on ever shutting up....or being shut away. lol.
Ben
Andrew Bailey
good read
Benjamin Hofmeister
Thanks Andrew and thanks for reading it.
Ben
Eve
Hi Ben. Are you seeing a speech therapist who can teach exercises for all of the well described anatomy you describe? Eve
Benjamin Hofmeister
Thanks Eve. I started seeing a speech therapist last year initially for swallowing and aspiration problems. We've been working on strengthening my exhalation muscles to improve my cough.
I seem to be maintaining,
Ben
Cindy Minota
Thlis really resonates with me. I am older and I often wonder if my lack of voice or finding words is MS or normal aging. If I have a teaching session, I have to have a lot of water available to sip and use pauses to moderate my voice so that it lasts as long as the lesson! I find conversation so exhausing; I listen a lot more bc it is too hard to talk, think, process and respond! I apprciate this article so much, thank you for giving a voice to another facet of MS.
Benjamin Hofmeister
Great comment Cindy! "Talk, think, process, and respond". Yes!! Sometimes I feel like I'm translating a foreign language in my head, forming an answer in English, and translating it back before vocalizing it. Oh and stumbling over proper emphasis and pronunciation.
Ben
Jessica James
Love your articles, Ben. Each one is spot on. Luckily, I’ve kept my voice but unfortunately I’ve lost my handwriting. It takes an hour to accomplish a check, longer if I’ve misplaced my “Oxo” pen. Please keep writing as long as you are able. I look forward to your column.
Benjamin Hofmeister
Thank you so much Jessica! I had some success with the "Y" shaped pen here
https://www.handicappedequipment.org/writing-and-typing-aids-for-the-disabled/
My writing is still painfully slow. I haven't "jotted" anything down in a long time.
I've considered voice to text software but I wonder how it'd interpret my weak croak especially combined with a Southern drawl.
Richard Hagan
Ben,
What you said really resonated with me. I was diagnosed in 1984 with RRMS that is now secondary progressive MS. I hate listening to my own speech because it sounds so slurred and my my handwriting is horrible. I served with the 101st Airborne in Vietnam as a M60 machine gunner. I was hit with grenade fragments and shot with an AK. I live happily with my wife in Palo Alto CA. Thank you for this article.
Benjamin Hofmeister
Hi Richard. If I'm fatigued, I sound drunk. If I could walk, I'd probably look like it too.
Thank you for your service and sacrifice.
I had to carry an M60 in Ranger school just before they phased it out. Tried to drown me in a Florida swamp once, so my memories of the pig aren't fond ones lol.
Ben
Jay Massman
Benjamin, thank you so very much for your article. I’m afflicted with SPMS for some 35 years. I also needed to retire medically MUCH earlier than desired from my Pharmacy profession. My management of some 18 employees as well as my interactions with my patients was affected. My speech is now suspect secondary to stuttering. I was a excellent speaker and listener and possessed a strong ability of empathy. Other than speaking, I still possess all the other qualities. My life has obviously changed and fear and loneliness now rule my life.
Ben, thank so much for alleviating some of that anxiety I possess,
Jay
Benjamin Hofmeister
Thanks Jay. Writing...sharing my rambling thoughts started as a stress reliever for me. I'm so glad to know it helps others too. That's what I hoped for.
Ben
JoEllen
Thank you for describing me. I’ve begun printing slowly because my cursive became a mess. I moved into an Assisted Living which assigned me to occupational therapy here at the manor to work on speech exercises and finger/hand coordination exercises. I was diagnosed 2013. This past. year was when everything became more difficult maybe because of my age of 75.
Benjamin Hofmeister
I'm right hand dominant but have always tried to use my left equally for most things.
"Tried"
I'm not ambidextrous by any means. MS really effects my right hand and arm so I write with my left now and it's barely legible.
BONNIE OBRIEN
Acorda Therapeutics's AMPYRA 10 mg is the BEST for my manual dexterity. I swear by it!
Benjamin Hofmeister
I swear at it sometimes, but I still take it for the manual dexterity and cognitive effects. Thanks Bonnie!
Paula
I feel ya! Speech is horrible for me. It’s ok though cause I laugh through everything ms related. At 71 , I’m just glad to be alive. As long as I can live to see the next election.lol have a good one!
Benjamin Hofmeister
Such an inspiring comment. Thanks Paula!
Sharon Sandoval-Starr
Spot on for sure! You and I seem to be traveling the same path as far as progression is concerned. It drives me nuts not to be able to think of a word when conversing, and this is happening more and more frequently. UGH! I appreciate your honesty, and I love sarcasm, so thank you so much for your articles, always valuable and pertinent.
Benjamin Hofmeister
Thank you for reading them Sharon and for taking time to comment.
Wait....you think I'm sarcastic??
(I am)
Ben
Jennifer S
This article, it was as if I wrote it, except my handwriting was requested by others to write messages on multiple occasions. For the speaking, good thing I stopped Toastmasters when I did! Thank you for writing about our shared experience. While I can tell friends and family up the wazoo how frustrating it is, to know someone goes through something similar makes me feel less alone.
Benjamin Hofmeister
Thank you Jennifer. And here I thought I was doing it to help me not feel so alone. This disease really does isolate us, doesn't it?
Ben
Jen
Hey Ben, great article -- may your writing voice always ring loud and clear! Now a question, and I'm not sure if it's related, but for a few years now I've had trouble laughing. I can push out a big 'Ha!' but can't sustain it. I used to be able to laugh uncontrollably, which could be a problem at times but now, oh how I miss it :(
It feels like I can't breathe in fast enough. Any ideas?
Benjamin Hofmeister
Hi Jen, YES!!! I actually had a real laugh come out of me the other night while laying flat in bed and tussling with one of the kids. I think it surprised us both because I usually just gasp out a creaky bray through an open mouth. It's like you said, it's like I don't have the air or strength to push it out. It's the same with coughing. It's like there's no resistance. Like the difference between blowing out a breath through pursed lips vs a wide open mouth.
shauna
Dear Benjamin, How mush research have you done regarding the vagus crainal nerve? there is tons of info about this nerve, there are fb support groups, you tube medical videos, and books sold on amazon. Your voice problems might not be directly related to ms.
Benjamin Hofmeister
Thanks Shauna! I haven't looked into it at all, but I will now.
Ben
Lydia Iwaschina
Great Article! I had a beautiful, strong soprano voice……for about 10 years my family has called me squeaky! Now my voice is better, but I sing from the pew and not loud. By the time ourOrthodox Mass is over, my voice, in the high pitches, can’t sustain itself. They need singers, but I’m not confident yet to try it out. And yes, the beautiful calligraphy and writing have faded away much too soon. But I still go at it…don’t use it, will lose it, so I still try. Your article is indelible, makes me feel normal, in a sense. Keep up the good work and God Bless You and Yours!
Benjamin Hofmeister
Thank you for your kind comments Lydia. My voice was a low tenor but when I tried it this morning when no one was around it was a breathless, raspy waver. Like you said, use it or lose it.
I don't suppose you go to a Russian Orthodox church?
Армия заставила меня выучить русский язык
(The Army made me learn Russian)
Matt
Thank you Benjamin, for just being there.
Benjamin Hofmeister
If that was all I could do, I'd be honored to do it. Thank you for being there too.