Hey all. Can I begin by saying that I’m in my 11th year of PD now and would welcome comments first and foremost from PWP who have had the condition for a similar tenure. There’s a big difference between ‘fresh’ PD and the mature version. 😞
Like PD Patient my voice is turning to shit. If I could understand the mechanics of its deterioration maybe I could engage in some remedial work and claw some of it back. I don’t understand if the problem is coming from my BRAIN or the muscles and tendons around the throat. This is because the weak voice seems to develop in line with other PD symptoms. So when my voice is at its weakest (and like PD Patient said nothing comes out) my other symptoms are strong too. This is why I’m suspicious of these vocal exercises that you can get on YouTube. When I wake up, for about an hour my voice isn’t too bad, but then seems to lose its energy supply as the day progresses. I had a vocal coach for 4/5 sessions. Her theory was that imagine we have 4 gears to our voice box. She declared that we lost gears 1 and 2 (normal talking volume) but retained 3 and 4 (shouting basically) which is why we’re encouraged to ‘think loud’. But last night my wife was trying to get me to speak from the diaphragm and use these gears but I just hadn’t got the energy to articulate words. The difficulties seemed rooted in the inability of cells to create meaningful energy?
So I’m prepared to do the exercises but only if they’re really going to help me. There seems to be little point if the problem is poor mitochondrial function. Your thoughts please 🙏
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jeeves19
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I believe my use of EMST- 150 is helping. I blow into it (hard) 5 times, for several seconds each = 1 set. I do 2 or 3 sets/day. As with all muscles, don't expect results in less than 4 to 6 weeks. Ugh, I know.
It is the only thing that has worked for me.
It's better than you and your wife learning sign language.
one would think with this issue being fairly common there would be more research on methods to attempt to restore the function of the vocal cords in addition to exercise, singing, etc. I did a search on this and there was nothing than the regular approaches mentioned although they didn't mention the use of the device you use. I did just see the idea of collagen injections into the vocal cords but that sounds a little daunting.
"The primary problem with Parkinson's patients' voices is due to the hypokinetic nature of their disease (reduced effort, reduced airflow) rather than any loss of muscular tissue in the vocal folds"
"Hypokinetic" means characterized by or associated with decreased motor activity, essentially signifying a state of significantly reduced movement or low levels of physical activity; the prefix "hypo" meaning "below" and "kinetic" meaning "movement.".
This information seems to argue in favor of increasing air flow to help
"Key Information
In the late 1990s, patients with Parkinson’s disease felt some hope that medialization laryngoplasty or injection laryngoplasty would cure their vocal difficulties. Unfortunately, such a cure has not been found. Injections of collagen (autologous or bovine) do result in improved vocal fold contact, but most laryngologists believe this results in little to no benefit in the patient’s voice.
The primary problem with Parkinson’s patients’ voices is due to the hypokinetic nature of their disease (reduced effort, reduced airflow) rather than any loss of muscular tissue in the vocal folds. This probably explains the disappointing results with collagen injection and medialization laryngoplasty."
I think that's why the gadget I mentioned works, i.e., it strengthens the diaphram which increases air flow. (Speech pathologist at the Mpls VA recommended it.)
My speech therapist had me start using the EMST-150 and it has really helped with my breathing. I would recommend it to anyone that has any sort of breathing issues. The fact that it is backed up by several clinical studies proving it works was enough for me to try it.
I've been suggesting a karaoke machine would be good for speech (just because it seems like it would help), and now it looks like Google AI agrees!
Singing, including karaoke, can be a beneficial activity for individuals with Parkinson's disease, potentially improving voice volume, speech quality, respiration, and swallowing, as well as promoting social interaction and well-being. [1, 2, 3, 4, 5]
Here's a more detailed explanation of how singing and karaoke can be helpful for people with Parkinson's: [1, 2]
• Improved Voice and Speech: Parkinson's disease can lead to hypophonia (low voice volume) and monotonous speech, but singing can help enhance voice volume and quality. [1, 2]
• Enhanced Respiration and Swallowing: Singing can strengthen muscles responsible for breathing and swallowing, which can be affected by Parkinson's. [1, 2, 4]
• Social and Psychological Benefits: Group singing, like karaoke, can provide social interaction and a sense of camaraderie, which can be beneficial for people with Parkinson's. [1, 4, 6]
• Neurologic Music Therapy: Music therapy, including singing, can be a therapeutic tool to address various symptoms of Parkinson's, such as motor control, speech, and mood. [5, 6]
• Specific Examples: [1]
• The Alva Academy's Parkinson's singing group in Scotland helps individuals with Parkinson's better manage their symptoms through singing and breathing exercises. [1]
• A study showed that group therapeutic singing (GTS) improves clinical motor scores in some people with Parkinson's. [3]
• A study by Stegemoller and her team showed that singing may be protective against aspiration pneumonia by improving respiratory and swallow control. [4]
• Finding Support: [1, 6]
• You can find information and support for individuals with Parkinson's through organizations like the Parkinson's Foundation and Parkinson's UK. [1, 6]
• Music therapists can help develop singing programs tailored to individual needs. [5, 6]
• Consider joining a singing group or choir specifically for people with Parkinson's. [1, 6]
I agree . Singing has helped me keep my voice from fading so far though I have tightness around my throat area. I'm sure it's the diaphragmatic breathing that is Key. Singing is also very uplifting to the spirit...especially community singing!
Jeeves19, speaking for my husband who was diagnosed in 2017 with PD. He went to LSVT for speech therapy which included breathing techniques. Then a year or two later (lately periods of time escape me could be less could be more) he went for a refresher which was just once a week for a few weeks.
There were times his voice was great, a good volume but words would be slurred. Slowly, his voice got softer and softer. Now, depending on the day his voice can be soft, sometimes loud, mumbled or a whisper. The whisper then turns into no sound and his lips move fast without any sound at all. Because of his frustration with speaking and my frustration of trying to understand what he's trying to say, he no longer is motivated to do the breathing exercises or do any voice exercises.
Results - we no longer have conversations as husband and wife. We communicate about important things which takes time and effort for both of us. Tell him to take a sip of water, take a deep breath and then speak which works. Sometimes I feel like we are playing charades but since this isn't a "game" it is not fun.
I'm concerned about his swallowing. Voice therapy keeps the muscles moving. Every now and then I'll remind him to practice his voice and tell him why. He will not do this on his own.
Why don't I continue to push? Because he tires easily. No matter how hard he tries to get words out, if he is on an "off" day, which are becoming more frequent, its no use. Guess it's what you said "mitochondrial function."
Jeeves19, I'm hoping our story gives you reason to continue to practice using your vocal chords, breathing techniques and any speech exercises available to you.
Don't give in to PD, you will know, like my hubby and I know, when daily practice won't improve the voice.
Thank you Linda for very generous response. Like I said, I’m just not convinced that they do any good! I’ll read your post a couple of times. There’s lots in there! But for example, one night I did the exercises, went out and could hardly speak. The next night I never bothered with the exercises and my voice felt reasonably strong. Go figure.
That's PD - unpredictable. Concentrating on your voice and doing exercises can help slow the progression of losing your voice. Notice I wrote "can" and not "will" because every person is different and every day is different.
You still have your voice - at times - and you haven't lost the ability to make sounds - so perhaps the voice exercises are working.
Gonna ask around for you , so I will get back. I remember you saying something about the dbs control, either you set it for better performance or better speech. If that is somewhat right, can they fine tune it any more for speech. Maybe a neurologist could actually think out of the box and find something I will get back, hopefully with something.
My partner's voice is quite reasonable when she's in a levodopa on state but deteriorates rapidly as she wears off. Sometimes I can't understand her without getting right in her face. She swears I'm going deaf! Recently she gave a saliva sample for a Parkinson's DNA study and they've asked if she will do some online speech testing, nothing onerous. She asked them if the test should be conducted when on or off because the result would be startlingly different, they replied they hadn't ever considered that before (!) but they asked that she does the test in both states.
My understanding of it is that it is similar to being "off" or inadequately treated .The pharyngeal and laryngeal muscles have both voluntary muscles as well as involuntary muscles. So what is happening is similar to the bradykinesia or slowing down plus the stiffness that comes with being "off".
I used to get that way priority to diagnosis.For me that and micrographia disappeared after a month on l -dopa.
Occasionally both these resurface when I am moderately off. Along with a sense of reluctance to do something.
Now I will come to the value of persistent exercise. Generally there is a reasonable amount of evidence both studied and anecdotally that preserving strength ,bulk and function of skeletal muscles of limbs and torso (core) helps with functionality and reduction of symptoms in pwP.
Also that you benefit more from exercise when you have had your L dopa. The same applies here.
However laryngeal and pharyngeal muscles that aid pronation are already puny little things so it takes months for exercise to beef them up.
References
Look up articles by Prof Baahs ? Bloem and Dr Pettinger . I am a bit pressed for time to look for them right now
Plenty of nerds in this parish would help too
Getting on to a speech therapist is on my list of things to do. But I have to prioritise working on my limbs muscles first. Mine are uncomfortably reminiscent of my late grandma's right now.
In the meantime sing like you would in a choir. Even if the output is not good.
My voice volume was one of my early symptoms. I have had voice lessons to help and they do help but you have to keep the practice up in the same way as you have to keep any sort of exercise up. I have get slack and don't practice as i should. Some types of dbs can make the problem worse.
You were told correctly about the gears. I can still shout when need be...my husband has very bad hearing so that's fine when I can get his attention by shouting. BTW parkinson's sometimes takes away the ability to swim so it's a good idea to check that you still can from time to time in a pool. I can kick like mad and go nowhere. I wear a life jacket if I am in even a small boat in fairly shallow water. I used to be a good swimmer once. This damn disease just keeps taking and taking.
Age 58 now. Seven years since official diagnosis plus a further two in denial.
During the glorious weather of the first lockdown I sat in the very far corner of a large multidenominational graveyard, close to my Dad, and followed the voice exercises of a lovely PD voice therapist on YouTube. It was there I forced out my ooOOOOOooOOO’s, eeeeEEEEEEEEeeee’s and aaaaaaaaaaa’s, and I sobbed loudly at how pathetic I was.
Anyyyyyway … I didn’t realise the Church of England mob were located behind some trees I had thought went on for miles until a mourner detoured through them post despatch to see what was happening on the other side. How many others had buried their loved ones accompanied by my howling and sobbing and, understandably, not worked their way through the trees? What could I say? Well, not even oooOoEEaaaa. That was the end of my voice exercises.
By 2023 my speech was almost unintelligible at times, and I often spoke with a stammer that was so crushingly bad that I rarely bothered.
In the end, my diet was stopping the efficacy of my meds. I pared my diet back to vegan, low gluten, low protein, and began my journey to find out what foods didn’t like me, upped my meds a bit, and my bl**dy voice came back.
Hi Jeeves. A friend of mine reads out loud for an hour everyday and it helps keep her voice strong. She started this daily ritual about 10 yrs ago and it's worked for her. May be worth a try.
Excellent idea. I am currently taking the Speak Out program through a speech pathologist. Going well so far except for a cyclone which passed over us a day or so ago. Puts you off your practice just a tad. I also go once a week to a Singalong session. Singing for 1.5 hours. Also to a shakespeare session where all members take turns at reading Shakespeare. That can be a challenge at times. I believe that learning to or playing a breathy musical instrument like eg clarinet or didgeridoo will help strengthen your diaphragm. And throat muscles as well. That is my personal experience but stupidly I gave up lessons when the tremor in my hand made playing the clarinet very difficult. This is all in retrospect. At that time i did not know i had parkinson's. I wish I understood then what I know now about PD. I might have persisted.
My speech therapist explained the mechanism of speech deterioration to me this way. She said that the problem is not the brain or the vocal cords but the connections between the brain and vocal cords. Initially the is nothing wrong with the muscles that control the vocal cords but there is a break in communication between the brain and the vocal cords. The goal of speech therapy is to help the patient form new connections between the brain and vocal cords. Of course as with any muscle if it is not used regularly it will weaken over time coupled with how PD affects the rest of the body including the lungs. My therapist uses the Speak Out program and their motto is “Speak with Intent!” Meaning we have to consciously think about our voice volume when speaking and concentrate on raising the level we speak at and over time it becomes a habit to speak at a higher level. Normal speech is usually around 70 decibels, when I started therapy I was averaging around 50 decibels. After 12 weeks of therapy I am averaging 60 to 65 but I constantly have to remind myself to consciously raise my voice level. The goal is to retrain yourself so that you’re doing it unconsciously. My therapist also started me on the Aspire EMST- 150 to help with my breathing since I was struggling with air volume issues. I was formally diagnosed two years ago but talking with my neurologist my symptoms I most likely have been suffering for at least ten years but passed of the symptoms as something else. I tend to be introverted and not talk a lot so really didn’t notice my voice getting worse. Unfortunately with PD exercising your voice regularly is just as important as physical exercise to prevent loss of the ability to speak.
I got the vocal cord injections. No benefit other than a sore throat. After watching Vitalstim that some speech therapists do I started tens stimulus to the throat. Maybe helping.
Thanks for your post,. gldware61. I am currently midway through the same speech therapy program called Speak Out. Or the Parkinson’s Voice Project. The sessions have been surprisingly helpful. I didn’t think there was anything wrong with my voice at all. But husband kept telling me it was problematic.. It really is helping a lot. The way you rewire the brain to accomplish speaking with intent is fascinating and I believe it works. Highly recommended to everyone. I am 6 years into this PD sentence.
Thanks. I’ve just ordered the EMST as well and am going to try and blow balloons up too. I’ll try to do more of the YouTube stuff but get tired of the repetition and it’s not easy when you’re alone at home every day. I’ll try though. 😀
Good thread. I took SVTLoud training four years ago but am spotty with the exercises. If I could just discipline myself to do it regularly, singing aloud to YouTube videos is fun and feels helpful. I will also try reading aloud and EMTs as suggested in this thread. And I will try a few laps in the pool next week while I am in Florida (who would have guessed that could be a surprise issue).
Doing Energy work on your throat might help. I do Reiki on my parts that are giving me trouble,. You could read the two books by Dr Eric pearl: The Reconection, Heal Others, Heal Yourself. And: The Direct Path to Healing A trinity of Energy Light and Information.
I am a massage therapist, and use energy work in my practice. I have a tremor, worse in my left hand but some in both and I feel it in centerline from throat to the bottom of my rib cage. But it stays gone as long as I take 1,500 mg B-1 every day.
I had a client who was in hospice, who had lost his balance over a few years and his voice had gotten very weak. I smuggled in some B-1 to see it would help his balance. He was too weak to try walking, but I noticed that his voice got stronger not long after he took the B-1.
Hans Neiper Md wrote a book The Curious Man. He invented mineral transporters . Calcium Orotate, magnesium Orotate . Any mineral attached to an Orotate molecule gets carried th the lipid container of the mitochondria. I’ll see if I can find anything for voice in his work. John Gale
I posted some ideas a few minutes ago and mentioned Hans Neiper’s book The Curious Man. I did a search on the internet and didn’t find any articles recommending the Orotate transport minerals claiming they help voice.
I have been getting vocal cord Botox injections for the past year at a university hospital throat clinic. Previously, did extensive work with a speech pathologist.The difference it has made in my life is miraculous. Breathing, swallowing and speaking.
The dystonia is under control with regular injections 10 weeks apart, though it gets worse after the injection for about 10 days.
I am away and started getting the usual symptoms and was concerned how far it would progress...well, coincidentally after a shot of novacaine at a dental visit, it immediately restored my voice! The dentist was also shocked.
Since I only have one more week of dental work I may have to try and find someone where I am now for the injections.
I suggest asking your neurologist about vocal cord dystonia.
Interesting. My husband's voice came back for a day or two when he had a sinus infection. Then, gone. Always clearing his throat due to a lot of phlegm so went to an Ear, Nose, Throat doctor but he didn't find any issues.
Hi jeeves19, I'm 4.5 years in with PD. I paid for an intensive 2 week LSVT Loud course two years ago, due to mild but persistent quiet voice issues. At first I was quite irregular in doing the daily exercises, but in the last 6 months or so I have been doing them almost every day (6 days a week). When done every day, so far the exercises fix my quiet voice issues. If I skip a couple of days, the quiet voice returns. So in my case it's a bit of a no brainer - the exercises work, I just need to do them.
My understanding is they are ramping up now. Had some various delays which he has kept interested folks apprised of. Great Britain first to receive. There is a waiting list but once they get rolling, they'll get rolling! You might sign up? They are excellent at communicating in terms of information, progress, and results. It does not help everyone. What's to lose?
I also have had PD almost 11 years (June 2 will be 11). I had bilateral focused ultrasound two years ago and it was that surgeon who mentioned that I may have speech issues after the second side was done. I think you have told the group before that you have had DBS. Did you have both sides done? That may be the root of your problem. I also completed 10 sessions of speech therapy and am no better off than I was before. I have noticed my speech slurs and my volume gets very quiet when my meds are working. It is easier to get volume when I’m off. However, my tremor is quite violent when I’m off, making it difficult to get a deep breath to support the volume needed. The Big and Loud exercises the speech therapist gave me are difficult to do, as I live in a 70 year old apartment complex with paper thin walls. My neighbors don’t need to listen to me do them daily. I used to play the flute in my early teens and our band teacher would make us do diaphragm and breath support exercises as a warm up before we started playing. I want to start incorporating those into my day to see if they will help improve my breathing and voice control. I wish I were farther along so I could tell you now if it’s working, but I can get back to you on that.
Sort of. But I had the team create me a channel that by passes the speech area. Unfortunately it requires a bit of fiddling with my controller and then I have to put it back again which takes time. 🤔. But I distinctly remember that I was slurring and stammering a little before I had my dbs, so I guess that it’s the convergence of both.
I went for voice therapy. The exercises really help! My health insurance covered a dozen sessions with a voice therapist, and I continue doing them on my own. It's called Lee Silverman Voice Therapy (LOUD).
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Works, too.
Losing my voice
Feet Issues?
VERY EASY EXERCISES TO IMPROVE HAND TREMOR, WRITING, LOOSENING SHOULDERS, INCREASING VOICE VOLUME & ARTICULATION, BALANCE, WALKING AND MORE!
